Talking with Louise Byrne

Louise Byrne, as far as anyone knows, is the world’s first full-time lived experience academic in mental health. It’s her official role at an Australian university, and she came to my attention when her recent thesis popped up on a Lived Experience Research Network listserv. Her introduction, conclusion and particularly chapters four and five are a good read.

“Anything to do with the mental health sector must have lived experience leadership,” she says. “Any organization that currently has lived experience or consumer participation needs to look at a major upgrade.” She explains, in her thesis and our talk, how to make that happen.

In our conversation, she also briskly but thoughtfully addresses tokenism, the co-opting of recovery, the “clinicians’ delusion” and plain old misunderstanding. “Like the gay rights movement, unless we stand up and are unashamed of our experiences, nothing will change,” she says.

Who are you? Please introduce yourself.

My name’s Louise Byrne. I work from my lived experience of mental health challenges and using mental health services and on the importance of recovery. I’m 36. I live in Rockhampton, a fairly small, semi-rural community.

How did you come to be talking with me?

Well, I used mental health services for probably 15 years. I was first hospitalized in my mid-teens. Specifically speaking with you, I did seriously attempt to commit suicide a number of times in my teens when I was very unhappy. I was OK for a while, then had rough times in my mid-20s. I was deeply disenfranchised with life again at this point, but being older and more connected with my family, I didn’t attempt suicide, but I had no connection with life, either. But a couple of years later, I found the idea of peer work, working from lived experience, and it made a lot of sense to me. It was the beginning of a different journey.

I worked in government services, and I trained in intentional peer support. Currently, I’m a lived experience academic in mental health. It was the second lived experience academic role in Australia and the first full-time position of its kind in the world that we know of.

I have a lot of autonomy and control. For the first time, people are really listening to me. In my other roles, it’s been a matter of being there but relying on the interest of others around me, being reliant on whether they decide to engage with me. Here, I have control. The recovery approach in mental health must be taught from the lived experience perspective now. I have complete control over course content and the way it’s run. I had 480 students last year, and 320 in undergrad and 20 in post-grad this year. Central Queensland University hired another lived experience academic.

I just finished my Ph.D. on lived experience roles across the sector. Because of my diverse experiences, sometimes it’s very tokenistic, other times accepted. It’s not policy but the personalities of the people around me. Here at the university, there’s the acknowledgement of my role as a leader in this space. That was sort of what drove that approach. So, yeah.

You mentioned tokenism …

Well, that’s about being there on paper but not really being there in any meaningful way to effect change. In my research, and anecdotally, I found it most common in government services. And then in my experience in academia, it’s the only place I really felt my role is as accepted as any other role.

With tokenism, if I can talk more broadly, people are not having adequate access to resources, not being remunerated enough, not being included in meetings, experiencing professional defensiveness from colleagues, a range of experiences that stops people from being able to meaningfully do their work. It’s common over here. I think it stems from our roles not being accepted yet as legitimate by a large part of the workforce. It’s allowed to happen because in policy, and where we sit in organizations, we aren’t able to force change. It doesn’t allow us to get in a position to make sure those things happen.

How to get into these positions?

The really important first step was having a powerful ally. Professor Brenda Happell initiated the first consumer academic role in Melbourne many years ago. Here we have schools, institutes, centers. As the director of a center, you can employ someone and no one really says anything about that. She was committed on a personal level to lived experience input and leadership. She brought on a woman who started in this position, Cath Roper. Years later, Brenda happened to move up here, where I was working in a mentors program, a national program. We started talking. She asked if I was interested in doing university work, and I was. I started writing for the mental health program, with an emphasis on the recovery course, in 2009. And then in 2010, there was a scholarship for a Ph.D., and she asked if I was interested. I had put in for a Ph.D. scholarship on a similar topic about six years earlier and not gotten it, so we put in for that. That definitely helped. The scholarship allowed me to focus. She was able to sort of beg and plead and bully her way into a one-day-a-week position for me, teaching in the recovery program.

A lot of early stuff was about powerful allies. At that stage, there was still a mental health nurse in control of the course, and I was feeding into it. With the help of that ally, she was able to argue that lived experience should lead recovery, that it came from us, belongs to us and was unjustly taken away from us. People don’t understand recovery because it’s not taught by people with lived experience.

Then, I was still one day a week. Then the next year, the course was doing well. I was doing the work, and she was leaving me to it. And the response from students was really strong. We were starting to get bigger student numbers. With the strong response from students and other staff and some research Brenda led, we were able to argue for recovery as a core unit of the program. We were able to then argue for my role becoming full-time in order to do that.

Part of that was being lucky in some ways. I think again it was about group consensus. There were enough people in the school who were like, “Yeah, great idea, brilliant.” There are a lot of people who have children with significant mental health issues, and they love my role. They get hope for themselves. They see a lot of sense in it. Really useful. They’re backing it and are happy to see it progress. The academic environment is all about constant change, the next big thing, whereas government services are very resistant to change. That’s part of the reason why we were able to make enormous bounds in three or four years. The decision makers are more open.

Has it also led to a change in disclosure among students or colleagues?

Certainly to me. But I always have that experience. When I tell people what I do for a job, it’s a very common experience. Within the school itself, I don’t know it shifted in terms of culture, people talking about their own stuff more broadly with each other. It’s a fairly sort of special group of people anyway, very supportive. People are aware of what’s going on for each other. I don’t think I can claim credit.

What’s needed to have these lived experience positions spread elsewhere?

First, you need to create targeted positions. Without lived experience in positions of authority, you’re unable to see meaningful change happen. Colleagues never respect what they’re saying as long as they’re low on the social ladder. Just relying on the kindness of strangers certainly has not got us where we need to be at. Targeted positions in senior places in a range of positions and organizations. Anything to do with mental health reform should be clearly led by lived experience people in positions of authority.

I think we need a lot more research. The first thing we need as a movement is to define our own theory, what underpins us. Things like intentional peer support has done that beautifully. But as a wider movement, we need to define what makes us us. So we can say, this is what defines us, the perspective from which we speak. We need to get in there before others get in there, mental health officials, before us. There’s training here that’s not necessarily lived experience-led but directed at our group. Research, unified statements, where we’re coming from and where we’re headed. Like the recovery movement, we’re at risk of being co-opted.

It’s been co-opted?

Yes, to a large degree. All you have to do is Google search academic articles, and there’s not a single person with lived experience in sight in a lot of these articles. There’s a strong use of clinical terminology. The thing we hear a lot is, clinicians are not clear about what recovery is. I think the concept has very much been co-opted. There’s frustration on both sides. Clinicians are just saying, “What is this? It’s just words.” People with lived experience are saying, “This is not what we’re talking about.”

When you mentioned targeted positions in organizations, what kind of groups do you mean?

Anything to do with the mental health sector must have lived experience leadership. Any organization that currently has lived experience or consumer participation needs to look at a major upgrade. One issue we’re having is people talking about consumer participation in the mental health sector but not really doing it. Here we have the Mental Health Council of Australia, you’ve got district-wide mental health services, community-wide, your departments of health and aging, any organization that directly is involved with policy and delivery of mental health services is mandated to have consumer participation, but it might be a few hours a year, one day a week. There are a lot of complaints: “The consumers we get, they don’t do enough,” or whatever. “Their input is not valuable enough.”

If you want to have the best people in the job, create a substantial full-time position and coerce people who are already in good positions. Make sure the jobs are attractive enough.

How has the response been when you say this?

Well it’s early days yet. These are also the recommendations of my Ph.D., which was just released. The good news is, people are reading it. We have a mental health commission here, looking at a range of issues, how fairly things are delivered, change that needs to happen. I know senior people in Queensland are reading it or have read it, so that’s good. I think Health Workforce Australia, which does planning and training for a range of people, including peer workers, people there at least have received it. I think it’s probably too early.

When I speak about it, the initial reaction is always, “Yes, of course, makes sense.” From people who are already on board. For those who are not, there’s normally a bit of conversation afterward. So far, there have been no conversations where people walk away saying, “I see no sense in this.” People agree in principle, but whether that will translate into actual change, I’m dubious. I see this as the very first step in officially stating these things, putting them in the public arena with empirical research that people can use to argue in their own organizations: “In Byrne, it says this and this.” A tool for people to advocate in a range of spaces.

How much of a movement is this?

I’m certainly not the only lived experience academic out there. People have been plugging away longer than I have. I’m following on and taking further research before me. I’m a member of an international service users in academia association. Part of our intention is to make sure research is happening. We’re creating a powerful voice by being unified. We’re only a few years old, but we’re growing.beyond the academic context.

The lived experience movement is quite broad. In Australia, lived experience roles have increased exponentially in the past 10 years, but the majority of people in those roles are not necessarily aware of our collective history or of our power or that we’re a civil rights movement. I don’t know if it’s clear to a lot of people who end up in lived experience roles. It’s one thing we need to make clear.

What’s your impression of the situation in the U.S.?

I’ve had very little exposure. New Zealand is quite advanced, or was. I’m probably more aware of what happens in America from the intentional peer support perspective. In terms of the broader movement, not so much. I get literature from Canada and the UK.

Surprisingly, I must say, since the civil rights movement was so massive in America in earlier decades, I would have assumed it was the language people are using. It’s powerful language. When this work is related to it, it starts to make more sense to people.

How did you make the decision to be open about your experience?

It just made complete sense to me as soon as I heard about that concept. I’d been in youth work since I was 18, working from my lived experience of homelessness and drug use, and in a way it made official the perspective that I thought was valuable.

Like the gay rights movement, unless we stand up and are unashamed of our experiences, nothing will change. As many people coming out as possible. I guess I see it as a social responsibility.

How did people react?

I think people are pretty positive. My family’s pretty proud of me. It’s a small town, and I’m in the newspaper a little bit, talking about this stuff, and my family is certainly proud of me. There’s not the sense of, “Oh god, we wish Louise would shut up about this.” I’m surrounded by people who believe that veil of silence about mental health issues does more harm than good.

What else is needed to take away that silence?

I think it will be a case of small changes to create the larger change. We need to get people respected in our communities, and well-known people, to be out about their experience. Now the problem is, most people, including in the mental health field, believe that mental health issues are chronic and unremitting. That in itself is an enormous barrier for us. We need more education, more people understanding that recovery is possible and even likely. More people standing up and saying, “Here I am, running for Senate or running a successful feed business, and I have significant mental health problems.”

We need to give room for those conversations. People need to be willing to sit with their own discomfort and just go there. It’s a whole of society kind of thing. Small shifts in different areas. Prominent people coming out will encourage that the idea of recovery is possible. Ultimately, what we need is less emphasis on treatment and services and more on community responsibility. Each of us needs to take responsibility for mental health, whether listening to a friend, speaking about your own stuff or what have you.

How do you address the mental health professionals who hold on to stigma?

The best way is to have many, many conversations. The lived experience practitioners, that’s where they really shine. We need to build relationships. It’s more about morning tea conversations, lunch conversations, over time, slowly influencing how they view things.

I think what we call the “clinicians’ delusion” plays into it. Most see people when they’re acutely unwell, and they don’t have the people popping back and saying, “Hey, I’m doing well, back at work.” Their reality is people are unwell, because that’s what they see. They need to do rotations in community-based spaces where people are doing better. They need to be exposed to people who are engaged in their recovery.

Is that happening anywhere?

I don’t think so, not yet. I think some are advocating for it in their own services. I think that’s feasible. The links in Australia between government and non-government are stronger all the time. Recovery is not going away, whether they accept it as rhetoric or not.

Going back to your experience, do your earlier feelings still come back, or are you “cured”?

No, I don’t believe in being recovered. There are certainly times when my mental health slides like an avalanche. I like a life of self-control. It’s not about managing my symptoms. I don’t believe in mental illness. I think of it as stress and distress. I live a life that’s good for me. I eat very clean food. I don’t use stimulants, I don’t drink alcohol, I don’t smoke. I go to bed early. I focus on my wellness.

(I mention what others have told me about being identified as “the exception.”)

What I’ve heard a lot is, “You’re not like our consumers,” which I find deeply offensive. It disregards the 15-year journey I’ve been on to this point. Now if it returns to me, I can get on top of it in a few days. But for many years, I didn’t. Mine is a bad story, it was a living hell. By anyone’s standards, it was a shocker.

I understand where it’s coming from. They see me with my nice dress-up clothes on, where I’m speaking from. But yeah, it denies a lot of things they’ll never understand.

What else would you like to say?

Be brave, take risks. Trust that person. Trust that there’s a person in there. No matter what they look like to you, there’s someone in there who can take control. It’s their mental health, don’t take their reins off them.

What are the next goals you’ve set for yourself?

My big thing is, I want to start conversations. Thousands and thousands. I want to somehow contribute to a situation where a person can walk next door and ask for a cup of flour and ask how the person dealt with anxiety three years ago. I want us to talk about these things. Everything else is Band-Aid measures. In order to truly reverse and change the situation, the terrible situation, where mental health issues are epidemic, we need to stop it from becoming a big issue. We need to reconnect people to others early on, allow them to find support organically, in existing support networks.

Can there be a community among people who’ve been suicidal, or in that case is it not helpful? There’s still the idea out there that putting “those people” together can be dangerous.

No, it’s incredibly helpful! Anyone who has shared unique experiences certainly should come together, because no one else can understand that experience. There’s a lot of that old, paternalistic, in the end not trusting the person who’s experience it is.

What you’re describing is the root of why mental health services on the whole do more harm than good. Mental health services fundamentally do not get us, and they work in opposition to what we need. It’s exactly what you just described. It’s that fundamental idea that we cannot be trusted. And in fact, we can. We just need supports to allow us to work through our trauma, our pain. And who more appropriate than others who’ve been there? And to discourage those people from having those relationships is the opposite of what we need. They’re disempowering us when we need to be empowered.

Can people find your thesis online?

There are a couple of places that put it up. I’ll look into it. I argue for the end of the DSM, so I’m not pulling any punches.

Finally, since you’re more than this experience. who else are you?

I’m a mom of two maltese terriers and two rescue birds. I’m a member of a big extended, loving family. Yeah, that’s who I am.

Talking with Megghun Redmon

A conversation with Megghun Redmon is a startling reminder of how little training many mental health professionals get in working with suicidal people. She once had a therapist and psychiatrist who not only were uncomfortable with suicidal thinking but told her, “I don’t know anyone who is.”

She then studied social work at a school where there was no teaching on how to deal with suicidal people. “It’s kind of funny, but not really,” she says.

But Megghun finally came across a Chicago-area organization that’s one of a few in the country to create and run a support group for suicide attempt survivors. She “came out” to the group while observing it as an intern and now works with the organization. One of their latest ideas is taking the support group into local hospitals to create a bridge to further care once people are released.

Who are you? Please introduce yourself.

OK, my name is Megghun, I’m 23. I work for SPS. I just graduated with a master’s degree last May as a licensed social worker. I don’t know what else. I have two brothers. My parents are still together. I live on my own. I have my two cats, I love my boys. Yeah, I don’t know, I’m really devoted to working on suicide prevention and attempt survivors. I co-lead the SOSA (Survivors of Suicide Attempts) group at SPS. I don’t know what else.

How did you come to talk to me?

Well, Stephanie suggested I join the AAS attempt survivors group. And I think I reached out to you before that, because I saw your blog and was super-interested and sent that to the SOSA people. And I said yeah, I would tell you my story.

How did all this come about?

Well, at first it was really by accident. I always wanted to be a helping professional. And so, like, before I even get into my story: I always help my friends, I’m always the person they listen to. As part of my social work training, I had to do an internship and I was like, “You know what? I dealt with suicide in the past and with people who’ve been suicidal.” So I interviewed at SPS and had to observe a support group. I had already observed a suicide loss support group, so I asked Stephanie if I could observe the lived experience support group. At the time, she asked if I was an attempt survivor, if I had experience. At that time, I was not quote-unquote out, but during the meeting I did disclose to the group. And I have come to, from that it kind of developed. I made it my mission to combat the stereotype of adolescent attempt survivors because of the reaction at that meeting and the reaction I always get from people: “What’s so bad during adolescence that you tried to kill yourself?”

That was a real long tangent to say that I got inspired from Stephanie, from her loss and all she’s done because of it. I wanted to do that same thing because of my attempt.

Stephanie asked you if you were an attempt survivor, but you disclosed in the group. Why?

I felt so comfortable, even though it was the first time I had attended that group that … I came from a family where you don’t talk about feelings, and what happens behind closed doors. So when Stephanie asked me, I was so good at saying, “I’m fine,” but then during the group I felt that warm, welcoming atmosphere that I wanted to participate. I wanted to be an active member.

What were the reactions?

They thanked me for being honest. They congratulated me on my courage to actually talk about it. And I did, a couple of the people did say, “You were so young, what was going on in your life?” Yeah. Age has always been, no matter what part of my story you tell, “You’re so young” or “You’re so mature for your age.” Age has always been a big factor to my story, no matter what part of my story I tell.

This was in opposition to my parents’ reactions when I had the chance to disclose anything to them. Their reaction was always threatening to take away privileges or telling me to “Knock that shit off.” This is probably why I was hesitant at first to disclose to the group.

And what do you say when you do disclose?

It depends on the audience. If I have the time, and if I think it’s appropriate, I tell them I had a childhood for which I wasn’t an adolescent. I had many responsibilities that adults or teens who are in high school have. So I was making adult decisions with an adolescent brain. You know, and if they ask me further, I will tell them exactly what that means. I’m an open book now. It’s helped that I’ve moved out of my house. It let me become more comfortable, telling all sides of the story. I do feel that my parents weren’t supportive of my mental health. Without going into all the detail, my parents continued to tell me the “problems” I was having were “just a phase” and it was “normal.”

But if I don’t think the audience is appropriate, I make the general statement that you don’t know what people go through behind closed doors. Not everyone’s experience is the same. Yeah, that’s how I kind of refine my answer.

Does it still come up, and how do you handle it?

I battle with my down points from time to time. So, I attempted in middle school but didn’t actually get help until my freshman year of college. So I’m still on my recovery journey. I had to suppress a lot of things for a long time. I haven’t got to the point where I actually thought about attempting, but I do get in low points. I learned to put more positive people in my life, and can actually rely on, instead of people relying on me. And my cats, I’m not going to lie, they keep me going.

About disclosing, was that an issue in school for social work?

No, unfortunately, for me it was still an issue I don’t disclose. I watch the audiences I disclose to. Me even talking to you is a big deal. Because I give your blog as a reference to my clients, for the parents of my clients. I tend to get younger clients, because it’s easier for adolescents to connect. And so, that’s something I’m working on because I’m always thinking about who’s in the audience.

I work at SPS, thank goodness, and they’re very open, you know. That’s not an issue, me being open. But I always think about, “Is my future boss in the audience? Is that gonna affect my ability to get a job if I ever have to leave SPS?” As far as social work school, I didn’t talk about it. It just wasn’t … I had bad experiences with teachers, well, first about how you handle suicide, but also bad experiences with other professionals in my own therapy sessions, that I just didn’t talk about it in school because I didn’t want that negative energy directed at me because I was open with people.

The professionals in therapy sessions, was that part of the social work training?

That was one time. They said they weren’t comfortable talking about suicide and didn’t know any professionals who were comfortable talking about suicide. Stephanie labeled them as jumpy. I’m very open talking about my feelings, my story. Everyone at SPS is. Her [the therapist] and I didn’t mix because she had a totally different ideology. I then projected her ideology onto all the other professionals I was going to school with.

Other students don’t really disclose?

No, they don’t. You tend to know which classmates have gone through therapy because of their knowledge when they speak. Sometimes people did disclose, but the reactions from professors, other students weren’t always positive, weren’t always as open and affirming as a future social worker should be. So it stopped after … I learned to speak in generalities.

Doesn’t that seem strange?

Yeah. That’s kind of society, isn’t it?

Were they even teaching the right responses?

They were. I feel I’m giving totally negative impressions. The school I went to was good and had heavy emphasis on empathy. It was more, the teachers had never taught before. Many were adjunct professors. A lot of them were the first time teaching, so the teaching role didn’t always happen for them. They either were way too professional, treating us like clients, or way too lax.

Do they specifically teach how to deal with suicidal people?

No, unfortunately not. It’s kind of funny, but not really. They don’t teach you how to deal with a suicidal person in school. At least, not at mine. You ask them, do they have the means? You do a small risk assessment and send them to another professional, pretty much a hospital. They teach you you don’t want that client in your office if they’re suicidal. Stephanie and I pretty much are working with that school now. She teaches a class on suicide prevention intervention. I come into that class and speak about how I feel. We’re trying to educate the students. And I’ll be open, that I didn’t learn the necessary skills until I interned at SPS.

How do the students respond?

Very positively, very positively. There’s now two classes, on crisis intervention. Progress is being made at the school, and I can greatly appreciate that.

How did you find SPS, and had you ever known support groups existed?

No, I didn’t know groups existed like that. I didn’t know SPS existed until I was looking for an internship. Honestly, I saw them on my internship list and, as I said, I always have a soft spot in my heart for suicide prevention, that I was drawn to it. I decided that I was going to intern there, I interviewed and was accepted on the spot.

What were your assumptions, impressions, surprises about the support group?

My assumptions before going in, I was shocked that it existed. I was always taught that you don’t put a bunch of suicidal people together because they’re gonna share methods. So going into the group, I tried to put that aside because the group existed and had been going on three or four years before I got there. That wasn’t what was happening. So I was trying to go in with an open mind. I’m glad I did. You may talk about your methods, what the future methods may be, but people don’t adapt your methods, say, “Oh, that sounds like a really good idea!” No, you try to talk about that method and say why and go past the fact that they’re suicidal and talk about the environment they’re living in.

It’s not like the people are in crisis all the time, on the edge?

Oh no, because nothing would ever be accomplished, we would always be in intervention mode. Members will come in and say they’re having a real hard time, and we focus on them for a period of time until we feel they’re in a place to be in the group, then we’re able to focus on other members as well.

What’s the mood of the group, and what are the topics of conversation?

The mood of the group is typically welcoming. It’s very … friendly in that our group is/was very small. We called each other or emailed each other in between if one of us was having a hard time. And so, you know, we could have a group of people crying, but in 10 minutes we could be joking with each other a little. Suicide became a topic we discussed and brought everyone together, but that wasn’t the only topic discussed. It was what led them to suicide, what’s going on in current time that makes them think about it again. How your family is reacting to you, how it’s affecting you now. I picture suicide in the middle of a circle, then all these arms that go out like a tree. Sometimes we didn’t even talk about the actual topic of suicide at a meeting, but we know that’s what brought us together.

As the facilitator _ right? _ what’s the most challenging and most rewarding?

I did facilitate it. Right when I joined, the other facilitator who was both a clinician and an attempt survivor left. So I kind of stepped into that role. Once I was “out” with the group, it took a couple meetings for me to take that role. And I still battle with not over-sharing in trying to stay in the facilitator role and staying, not the rock of the group, but the person who helps if someone is having a hard time. I battle with staying together with myself within the group so I’m available with other members if they’re having a hard time. I don’t want to over-participate, but it’s so welcoming that I don’t want to under-participate, either. I don’t want to put anyone on a pedestal. It’s a challenge sometimes, but it’s so worth it for me. If I know I’m having a hard time, I can call up that person at 3 in the morning. They know I’m also a survivor. So that’s been a very big benefit for me.

They can turn around and help you?

Correct!

How long does the group last?

Well, this is the first time we’ve gone on sabbatical since the group was started. It was going on for six years, I think. There was the main core of people, like three or four individuals who come in and out of the group. There were always at least five or six members attending with, like, besides myself and Stephanie, with three core people. It would be OK if someone did not attend every month. We could call that person if we know they’re struggling. But it was a very, though closed group, a flowing group. People came in and out of the group.

Why take a sabbatical?

We say everyone’s cured, but that’s not … Everyone got to a good place. It became a group that the topic got so far from lived experience that we felt that we needed to get some new people. And taking a sabbatical would be the best bet to revamp it. To try to figure out how to get more people to participate.

How?

We’re reaching out to one of the main hospitals in the area, to try and partner with them. We’ve always been part of the outpatient plan for people after they attempt. We want to offer the group at the hospital, so if people are in partial hospitalization, we want to offer the group as part of the program. Eventually, we want to offer it as inpatient as well. So when they go out of inpatient they feel they haven’t lost that inpatient environment. So our ideas are really big, but we don’t think they’re huge. We feel partnering with a hospital will help us get the group out there, to more of the public knowledge.

Can others out there do this, or does creating a support really depend on a really passionate individual?

Yes, others out there can do this, and are doing this, thank goodness. I learned about some new groups out there, but it does take educated people, people willing to be open and combat stigma to get the group started. Our group would not have been started without two lived experience people. It does take that motivation.

What will it take to make it easier to combat stigma and come out?

I don’t know. I think it’s gonna, well, I feel the society is changing to a point when talking about suicide, it’s a long, long journey that needs to be had. Just mental illness in general is a very long journey, for society to be able to accept that people live with mental illness, that it doesn’t make them a worse or better member of society. So I think it’s gonna take some work on both people who live with mental illness and people who don’t, working together.

Do you see any changes in society?

Oh, yeah. I mean, AAS is a huge step. The fact that people are now able to label themselves as a lived experience member, or almost to that point. And … I think that’s a large step. I know people are able to talk more about their struggles, talk more about “Oh yeah, I went through a very dark time.” I think the news is actually … Suicide is becoming a little more accepted. Yeah. Schools are actually reaching out instead of pushing the topic to the back burner.

How about the reactions of your friends and family to all of this?

Well, as far as my family goes, I actually just told my parents probably six months ago. And so they took it really hard. My friends, they’re, yeah, they accept it. Many of them struggled, and so they’re just accepting. Many of them had seen what I had gone through and so were like, “Finally, you’re talking about it.” Because I wouldn’t talk about it, so they’re like, “Finally!” So, yeah! That’s pretty much the reaction. Either shock or open acceptance.

It it easier to ask for help if you’re open?

You’re asking the wrong person. In my experience, it was extremely hard to get help, and I was at a young age. When I was open about what I was feeling, I was told, “Knock that shit off.” And so I figured, I see others when they’re open getting help, but for me it was not easy. It was a very long journey.

In the sense of being “out” about having had a suicidal experience, does that make it easier to seek help or support?

Yes, but people become a little hyper-vigilant. In my experience, I know I become a little hyper-vigilant when I have a client who comes out to me. As a person with lived experience and who works with people with lived experience, I always have it going through the back of my head. Which is not a bad thing. It’s always there.

You see that person and think you always have to be more aware?

Correct.

Does it take more attention and energy to feel that way?

Yes.

On a different topic, I’ve heard from people who speak publicly more often that they feel pressure to show that they’re “better” and never have those thoughts again. What do you think?

I don’t think I have yet, but I haven’t been doing super-public presentations. Most have been in the local area. I haven’t felt that way yet, I know. But I can see where someone would. You put yourself on a pedestal.

What has been your most helpful treatment, and the absolute least helpful?

I can tell you straight off, absolutely not was having a therapist and psychiatrist who have not been comfortable, visibly and verbally comfortable talking about suicidal ideation and thoughts. Actually saying to me, “I don’t know anyone who is.” Being that I interned at a place where everyone was comfortable, that was not helpful for me.

What’s been comfortable for me is knowing places like SPS where people are comfortable talking about past and current experiences. When I was younger in treatment, making it more known that you can have counseling without parents’ permission, but also within the school. I think we need to make it a little more acceptable and legal for school counselors to see students on a regular basis. Currently, they’re not supposed to if they don’t have an individual education plan.

Do you mean in high school, college, every level?

In K-12, that’s what I mean. And I don’t know if it’s just for Illinois or across the nation. For me, I would not be here if not for counselors and social workers who broke that rule. So that really helped me, that people were caring about me.

And not necessarily caring about the rules?

Yeah. … Even to see a private clinician in Illinois, you can only see them six times without parents’ permission.

Going back to what you mentioned about the therapist and psychiatrist not being comfortable with suicidal people, aren’t all of them supposed to get that training?

I feel like I’m bashing my profession. The training is very minimal unless you seek it out. I know some private practices around here have a “no tolerance for suicide” for liability purposes. And I know schools, too. A school district around me, if a student talks about suicidal ideation or plan, the counselor is instructed to call 911. So training is very minimal, in my experience.

What else would you like to put out there?

I feel like I should stress the importance of not judging a person by their age. And I want to put out there, it kind of sounds hokey, but not to give up when your family pushes you away. There are people out there who will listen. It’s really … Yeah, that’s what I wanted to say.

Who else are you?

I am … See, that’s like the hardest question to ask me, who else am I, because I am, have become so devoted to suicide prevention that I’m a woman still searching for her path. I may be on the path, like a version of my path, but I still think there’s so much for me to learn, so much not visible to me yet, that I don’t know fully who I am. I’m gonna contradict myself, but I know I’m still young and have places yet to go.

So I’m a woman in transition.

With no hobbies?

Oh no, I have a hobby! I’m an avid knitter. I am actually learning to garden as well.

Talking with Denise Kodi

In the coming days, Denise Kodi will mark 20 years since her suicide attempt. As difficult as the experience was, it became a turning point: “I had nothing left to lose, and I would try to live how I wanted to live.”

She went on to travel, teach, write and help others, even going back to the hospital where she had spent time after her attempt and volunteering. While researching a new memoir, she recently returned to her attempt and went exploring for what had changed in the mental health world since then.

Denise has noticed that the nervousness around speaking out largely continues, and she finds it wrong. “I think that’s the same, you know, as years ago when if a gay person says they’re gay, anyone they touch may be gay, too. Like there’s a vibe that someone can pick up,” she says. “I think that’s ignorance. In fact, I think it’s just the opposite.”

Who are you? Please introduce yourself.

OK. I’m a writer, I live in Denver, and I write mostly creative nonfiction because I find it more compelling than something I can make up. So. I’m sort of drawn to, you know, misfits, people who feel they don’t fit in, because I feel that way. I work with immigrants, refugees, teaching English, helping them navigate their way here in America. And I’m a sucker for rescue dogs, pathetic ones in the shelter who give you that look.

How did you come to be talking to me?

It’s been almost 20 years since my attempt. In May, it will be 20 years. And I know April and May are the actual months when suicide peaks, and I’ve lost some friends to suicide. And I’m really fascinated by the fact there’s such a stigma around it, and I came across your site and a couple others where people are sharing stories, and I think it’s so important. When I attempted, nobody was talking about it. I would venture to ask people, “Have you ever thought about it?” And people would say, “Oh, never!” And they would go into a big spiel about rainbows and God and create an extreme isolation where nobody talks about it.

Was it the anniversary that got you thinking about this?

I was working on a book. I wrote one memoir about growing up in this weird evangelical family with demons, curses, all that stuff. I was trying to do research for a second book about mental health and my experience. I was kind of doing research into the current situation and how things have changed.

What struck you about any changes?

Well, it’s good. On the one hand, there are more … When I was 25, you know, to gain access to resources, you would have had to go to the library and ask somebody, and now you can do research online privately. So there are more resources. At the same time, the numbers are still rising, and children as young as 10 are attempting suicide, and there’s still a huge stigma. While there’s been progress, there’s still a taboo, you know.

How do we go about changing that?

I think it’s similar to coming out, you know, more and more people coming out and talking about it, and talking about emotions. In our society, we label things as good or bad, you know. Certain emotions are OK to have, certain feelings are OK, and others are bad and we don’t want to talk about them. Also, there’s certain myths that are put forth. For example, you probably heard this about journalists: Writers are always gonna kill themselves. They always put the same people, Hemingway, Sylvia Plath, but they don’t talk about the others who managed to rebuild their lives and do OK. And also, we don’t talk about the people who thought about suicide and attempted and rebuilt their lives from there. They only put forward horror stories, and it becomes a self-fulfilling prophecy. People think, “I must be alone, and this is the only way out.”

How have you rebuilt your life?

It was a hard road. Because the time that I attempted suicide, I was going through, I had some PTSD happening, and I didn’t really understand it. There were resources for therapy, but I didn’t have money for that. And so it was really hard, and I was not taking care of myself because I had grown up in a violent home and didn’t know how to take care of myself, in terms of who to let into my life. I was in a very unhealthy relationship but didn’t realize I had the choice and power to say, “No, I didn’t want this.” I thought I had to go with it, because that’s how I was raised.

I think I started, I had nothing to lose at that point because I was already at the lowest point in my life, and so I started kind of exercising my rights and realizing I didn’t have to put up with certain things and also to … I was always the crazy one in my family, and instead of living out that prophecy, I tried to live out what I wanted for myself. Does that make sense?

How did you figure out what you wanted?

Just little things. I had dropped out of college because I had felt like a failure. I had really wanted to finish, so I went back and fought all those feelings of failure and “I deserve to be punished.” I just stuck with it and gradually realized that I wasn’t. I kind of showed myself. And good friendships. Once I let go of the ones that were not best for me, I found some really good ones. But it was very hard.

Was there any treatment you found helpful?

Not at that time, no, unfortunately. And this is, like, during the ’90s, when the mental health system had a lot of things to work out. Because they … earlier, I had been misdiagnosed as bipolar, which I wasn’t, so they simply said, “Well, something’s wrong, you have a chemical imbalance.” I thought it was not accurate because I thought it was from things I had experienced in childhood. At the time, that was all just coming to a head then, you know, the childhood abuse and rape and so forth, and they were really focusing on medication. And I didn’t feel that was gonna work for me.

Also, I didn’t have the money. And that’s the other thing I think should change, and maybe it has: more affordable access to treatment. Though there were some support groups that had a minimal fee. I did find those helpful.

Did you tell people, and what were their reactions?

I did tell some people, and the reaction at that time was concern and fear, like they didn’t really want to hear about it. Even now, a lot of people don’t. They’re curious, I think, you know, because I think people struggle with their own feelings if they’re honest about it, but they don’t want to hear about it.

Why do you think that is?

I think it’s the silence and taboo around it.

What made you decide to put your story out there?

I think people need to know they’re not alone. I had a writer friend who died by suicide about a year ago, and the reaction in the community was really varied. Some people were compassionate toward him, some were angry with him. And I think that was just ridiculous to be angry. We still treat it like a crime and they’re criminals, when they’re just people who are hurting. I think the more we acknowledge that, the better for everyone. I think some 30,000 people a year in America die by suicide, and if the stories can help prevent even one or two or thousands of those, we need to speak up.

Have you started speaking up elsewhere?

Yeah, it depends on the person. Some people acknowledge they thought or attempted. I have a friend who lost a brother to suicide, and she was very open to hearing about it. So it kind of varies. And I’ve written about it. I wrote a short kind of creative nonfiction piece. Actually, it won an award. And people, it did resonate with people, so that was really good to know.

Is it online?

It was published in The Progenitor, which I think is available through Arapahoe Community College. In their archives. It would be 2009, I think.

From a look at your website, you seem to have an unusual bio. How have you made your way through life? You were a corn-dog dipper, for example? Didn’t you have a pretty conservative upbringing?

Yeah. After my attempt, it was so scary because I was hallucinating from the pills for days, even after getting home from intensive care, and it was so terrifying. And that was when I realized that, like I said, I had nothing left to lose, and I would try to live how I wanted to live. I wanted to travel and teach, study and do all these things. So all that happened after that. It never would have happened if I had died. It all came as a result of facing that darkness. Does that make sense? But I don’t think I had … it’s a shame that it had to come to that extreme, you know? That’s what I think is sad about it.

Does any experience stand out, and what did you learn from it?

Yeah. I think meeting people from all walks of life, different cultures, and learning that we all have more in common than things that are different. And oh, and then the hospital where I was in the ICU, I went back to that hospital years later and volunteered to talk to other patients, for various reasons. And just finding out that life can be very hard, and everyone’s really a hero for what they go through. And just being able to see that other side. If someone’s in the hospital because that’s the only way to deal with what’s going on, just trying to get through life. Some stories are sad, some are heroic, you know? Everyone is just, we’re all, I think, brave soldiers, you know? It’s inspiring to hear other people’s stories.

Some people still think that telling our stories is not a good thing. Do you agree?

Why, because we might encourage people? No. I think that’s the same, you know, as years ago when if a gay person says they’re gay, anyone they touch may be gay, too. Like there’s a vibe that someone can pick up. I think that’s ignorance. In fact, I think it’s just the opposite. The things that are kept in the dark just grow. If you push it in the ground, it will overtake you in the end.

What steps would you like to see to break down this silence?

What you’re doing is terrific. And I think just seeing more and more people come out. And I think the media, unfortunately, does more harm than good when it comes to this. They have the tendency to sensationalize and report the horror. They don’t go to the other side, don’t want to hear the success stories, to hear from people who might have some wisdom about their own experiences. We should open it up and allow people to come out about it. And I think a lot of times, the person is blamed as something wrong with them, and we need to look at what’s wrong with society, a particular culture contributing to this.

Maybe this is a completely separate topic, but do you have any point of view on “death with dignity,” assisted suicide?

I don’t know because … Freud died by assisted suicide, which I didn’t even know. I never knew that until recently, that he had been diagnosed with cancer, I forget what type, and 16 years later he had a doctor friend of his give him morphine. So that’s how he died. So I think there’s a whole stigma around death, too, because there’s this idea that anyone who dies somehow loses. “She lost a battle to cancer.” I think that’s the wrong way of looking at it. Our fear of death limits our perception of it, if that makes sense.

Where does religion come in, if at all?

Yeah, I sort of abandoned all that. But it did play a part, and I think it plays a part in a lot of people’s lives who were raised in a religious household. You get kind of a contradictory message that god loves the world so much that he gave his only son, but also that suicide will send you straight to hell. A loving god and a vengeful god, and then everyone’s born a sinner. So there’s all these very degrading beliefs in some religions, like you can’t win for losing, sometimes, in some of them. It can be very crushing. Also, you have the whole, in some fundamental Baptists, where I spent a good portion of my life, depression is from the devil. You’re supposed to, if you’re right with god, you’re just going to be happy and flipping cartwheels everywhere. The myth is put forward, and people who struggle and have depression and think it’s all coming from the devil, that’s just horrible.

Some people have mentioned Christian counseling. Was that ever available in your world?

When I was a teen, I had to see the pastor, and one of the biggest obstacles in that sort of mindset is, you’re not supposed to look back on anything that happened to you, because looking back was a sin. Lot’s wife turned to salt because she looked back. If something happens to you, you’re not supposed to look back or deal with it because it’s a sin. It creates lot of problems because if you don’t deal with it, it overtakes you.

Do you still have thoughts about this, and what do you do?

Yeah, I still from time to time struggle with depression. And taking care of myself, like exercise, helps. Writing. Talking. I have a great partner and good friends.

Are you able to talk to them about this, even?

Yes.

What else would you like to put out there?

I don’t know, I think I’ve addressed it. The primary thing is talking about it. There’s a lot of blaming the person who has the thoughts and the feelings, instead of acknowledging this is something that affects nearly everybody. You know, the thoughts, anyway. I think it’s kind of like maybe Carl Jung’s theory on the shadow self, where all these repressed and unexpressed attitudes go and can grow big. I think once you can bring them into the light, healing can begin.

For people who say, “I don’t know what to say if someone is suicidal,” what do you suggest?

Listen. Ask questions. Maybe someone hasn’t thought about suicide, but I’m sure they’ve had moments when they were feeling really low and things were not going well in their lives and they have felt alone. If you have ever felt alone, you know how that person feels and can be a source of comfort. Just listen to them.

Who else are you?

Who else am I? Well, I actually, you now, a lot of what I wrote is funny. A lot of humor. Which is, I’m glad for. And I’m someone who loves to travel and meet other people. People tell me I have a wicked sense of humor, which is great, because I like making people laugh. I’m an animal lover, someone who enjoys adventures and challenges and being in the company of good friends.

Talking with Jack Park

Like a growing number of young attempt survivors, Jack Park came out on social media, amplified by Facebook. His response to a pair of suicides among his University of Pennsylvania classmates inspired him to talk openly about his own experience. His post, and students’ responses, quickly turned into national news.

Now he spends quite a bit of time meeting with other students, old and new friends, over coffee to talk about personal struggles. “I don’t even like coffee,” the South Korean-born Park says. “But when people talk, they usually talk over coffee in Western culture.” He makes it work.

Who are you? Please introduce yourself.

My name is Jack Park, and I’m from Seoul, Korea, but I came to the States for an undergraduate education. I applied to the University of Pennsylvania as an early decision applicant and, fortunately, I was one of the students who got in, and now it’s my third year in Philadelphia. I am majoring in Urban Studies and minoring in Consumer Psychology, a mix of marketing and psychology. And, um, what else should I say about myself? Oh, I go to a campus church called GCC, Grace Covenant Church. I look forward to Sundays because going to church is fun and relaxing, and I learn a lot about life in church because, you know, they talk about the Bible. People usually look for answers when reading the Bible. I got a lot of my personal questions answered when I looked into the Bible intensively. That’s the spiritual side of me. I also like to nap, like, a lot.

I’m from Korea, and I think South Korea is equally, if not more than, depressed than America. There’s this river called the Han River, and there are lots of bridges that connect the south and the north of Seoul. One bridge is nicknamed the “Suicide Bridge.” Try Googling “suicide bridge Korea.” Now it’s being rebranded as a “Bridge of Life” to prevent suicides.

My country is mainly results-oriented, basically a strong “do or die” kind of mentality. Intense, highly motivated people. That’s good for some part, because Korea used to be in complete ashes after World War II. Our peninsula was, and still is, divided. The war destroyed everything in the nation. But in a couple decades, we were able to improve the economy with a hard-working, much-driven mentality producing Hyundai Elantras and Samsung Galaxies. The Korean society values success, like all societies. But success is closely defined as “hard-working, being stressed and busy.” It tells you you’re doing something.

Because I fortunately got accepted into an “East Coast elite institution,” I set some standards for myself unconsciously. Basically, the University of Pennsylvania is a group of very competitive, intellectual young people, like many other institutions. It doesn’t mean that Penn kids are a bunch of assholes, some are, but definitely not all students. They have high standards for themselves. They have to get certain “prestigious” internships, or want a 4.0 GPA to get into that law school, med school, dental school, grad school, onwards. I’m easily influenced by my surroundings, and everybody seemed like they knew what they were doing with their lives.

I, on the other hand, wandered around clueless for a long time. The early 20s is a confusing time for anybody, right? I didn’t even know what major I was going to declare, what to do during summer, I hadn’t found a job yet either. Lots of confusion. Then on the side, on the media there was lots of horrible news every day: rape and murder, planes crashing, shootings, you name it, all kinds of evil. I tried to think it through myself: I’m in this safe university bubble, protected from these dangers of other parts of society, but what did I do to deserve it, why do others have to suffer while I stay in my college life?

The University of Pennsylvania is located right next to a low-income neighborhood called West Philadelphia. The gentrification process is sometimes called “Penntrification.” I see homelessness, a side of structural poverty, every day while walking to class. That just didn’t seem fair at all. So these thoughts were happening every moment, as a growing train of thoughts, “Why is the world so unfair? And why do I and others have to be stressed all the time?” Then winter break happened, my freshman year, and I
went back to Korea to see my family. And I thought things were going to be a little better because I was off school.

But when I got back to Korea, the same things were happening in Korea as well. There always has been human greed and folly everywhere: rape, murder, suicide, poverty, corruption, homelessness, everything. The same damn thing. It got me thinking, “The world sucks. Why am I even contributing to this world?” Say I bought, like, a pair of UNIQLO jeans. To make that, a child laborer from a third world nation probably had to work unhealthy hours to make it for a cheap price. I’m ignorant enough of those global issues so I just buy the pants off the shelves. That was my sense of negativity all the time, for like a couple of months. Then I went back to Penn. Slowly, I didn’t want to contribute to this world anymore.

I saw absolutely no purpose in living. “What if I make a lot of money when I graduate? I’m just taking someone else’s money and profiting off another’s loss and misery in this zero-sum economy.”

I started to feel lonely all the time because of a depressive disorder, and even if I was with a group of friends, I felt as if no one was really, truly understanding me. And I started to eat by myself, then I started to not meet any people, then I started not to go to classes, because I thought everyone was judging me all the time. I couldn’t even pick clothes out of the closet because I thought people would look at me funny.

Suicidal thoughts slowly triggered, and they wouldn’t leave. All sorts of very dangerous thoughts occurred. Eventually, over time they took over me, and the suicidal side of me told me what to do. I started to try out some of the thoughts. I honestly think I was going to die that one day, but a true miracle happened for me. I started to resuscitate again all of a sudden. I started to live again. If not for that, I wouldn’t be talking to you on this interview.

Recently, a school television station interviewed me talking about how I was able to recover from depression slowly and start to love again. Please give it a viewing if you want to see me talking about my story here.

My depressive episode seemed as if it was never going to end, but it started to fade out after about three months. I can never thank my parents, friends, family and God enough. I started to go outside, eat outside, meet my friends, started to go to a bar. And then I’m pretty sure I had a manic episode after that. I’m pretty sure I also had bipolar tendencies. I was doing insane, abnormal stuff for a good two months. I was fitting into every single characteristic of a manic episode defined by the Diagnostics and Statistical Manual of Mental Disorders. I was spending lots of money, feeling extra sexual arousal, meeting many women, drinking and smoking like crazy, wanting to start businesses all the time, risk-seeking, talking fast, thinking fast, being mean to my friends, saying arrogant stuff. My personality, essentially, changed.

Over time, I started to say to myself, “Wow, I’m going crazy again, but the other way. Maybe I should do something about this.” I started researching on the computer, and I talked to my therapist. She gave me some mood stabilizers. I tried to talk at a normal pace and calm my life down. Then after some weeks the therapist said, “I think you can go back to school now. You’re OK.” I said, “Jesus, thank you.”

I’ve been doing normal college student things since my return: going to some classes, skipping some classes, handing in assignments, doing some extracurricular activities. Then in Penn, as many know, this past winter was a very depressing winter. Three known cases of student suicides were reported at Penn.

I saw the clear problem and wanted to so something about it. I know how horrible that struggle is, and I didn’t want anyone to go through the same stuff. I started to pray, because I pray for answers as a Christian: “What should I do, God?” I prayed for around two weeks. Then something just kind of felt like I should share my story with other people. I saw the TED Talk, too, the guy from New York who jumped off the bridge and lived. I’m looking at it: “Oh my gosh, so powerful. That’s awesome. Should I try doing the same? No, that’s too much for me.” And then, after that moment, the TED video moment, I kind of, well, read the Bible.

In Mark 5:19, it’s basically about a person with a “demon” who goes to Jesus, and Jesus cures that person. I thought that was like me, with the demon being mental illnesses. He tried to follow Jesus around, but Jesus told him, “No, go back, tell your family and friends what I did to you.” It’s telling Christians to share their testimonies, share the love, you know. So I was like, hmm, the Bible may be … telling me to share my story.

Nobody knew this. My parents knew, but my own little brother in high school didn’t, my dear girlfriend didn’t. How could I tell this to anyone? Like in a dinner conversation, “Oh, by the way, two years ago I tried to kill myself.” What? Beside my parents and my therapy counselor, nobody knew. It was like a dark chapter of my past, and I was trying to forget about it.

But now my path was chosen. I’ll share this story in an impactful way. How should I do this? I thought writing it down would be a good start. I drafted a blog post for three days. I tried to make it as least suicidal and most emotion- and thought-provoking as possible. And I had some good writer friends thankfully edit it for me. Some friends wanted to post it on a mental health Tumblr blog, and I was like, “Please do!”

The blog was up, and then I started to share it a lot on Facebook, because almost all college students Facebook. There are around 10,000 undergrads, and I estimated approximately people have around 100 friends on Facebook. So I thought if I asked around 100 friends to share it on their Facebook wall, then the information will start to spread like wildfire. So the Penn undergraduate body will be exposed to my darkest secret, and they will know that sharing personal weakness is actually somewhat acceptable.

And they will, like, talk it out, talk about mental health with each other, you know. For around five hours, I Facebooked religiously, responding to every notification as they appeared. Around 100 friends thankfully shared on their wall.

After that, there was a lot of school media and then USA Today, and then The Huffington Post. And then Philadelphia magazine. There’s also this magazine called the Ivy League Christian Observer, and they wanted to share my story because it’s very hopeful and spiritual. So I shared my story with them as well. Meanwhile, I’m meeting, like, a lot of old and new friends over coffee about personal struggles. I don’t even like coffee. But when people talk, they usually talk over coffee in Western culture. So I chose the theme of coffee. Yeah.

Lots of people have been sharing their stories to me: “Oh. I’m depressed, too.” “Oh, you’re bipolar? Oh, me too!” I realized it’s a relatively common condition. Nowadays I’m trying to catch up on my schoolwork. I’m very behind, like, a lot.

Have all the reactions been good?

I think so? No one has directly said bad things to my face. But I heard some rumors. There will always be haters, whatever you do. By chance, I became somewhat of a public figure on campus. A few people recognize me in campus buildings and stuff. Some people got jealous. They would say something like, “Oh did you make all this up to become famous?” No, why the hell would I make this up. Some stuff like that, but that’s a real minority of responses. The majority responses were like, “Thank you for what you’re doing. Maybe we should have coffee together. I tried to harm myself a few years ago, too, but now I’m doing better.”

Do you think it’s easier for younger people to come out?

I’m not sure, because I’m not a very representative sample with a small sample size of one. I think it’s hard for anybody, college students, working professionals, or anybody really. This is not a common topic to talk about anywhere, but these days it’s been a hot topic in Penn because it’s been very visible. It appeared in the newspaper. But unfortunately, I think the buzz will die out over time. The Penn community might even forget about Madison, Elvis and Alice slowly.

What should the school do to stop the stress?

They should be a little bit more serious about allocating resources to mental health issues. Penn has a lot of money. The amount of money is not a big problem here, allocation is. They are not really doing enough to support the students in regards to mental health. These three students unfortunately passed away. There’s something Penn can do. There’s something students can do. Something parents and professors can do. It’s not just Penn’s fault, but that doesn’t mean that it’s a not important issue to address more directly.

What do your parents think about all of this?

Oh my God. I told my parents and they were like, “Are you sure about this?” In Korea, I have to serve in the military sometime, because all able-bodied Korean males must. If you have a past history of mental disorders, you get placed in a “specialized unit” and they pay extra attention to you. It’s horrible.

And firms don’t usually hire people with mental disorder backgrounds. My real name is not Jack Park; it’s my small attempt to avoid getting called out in Korea for the official records. The point is, they were very doubtful at first. Then I explained to them what I was going to do, that I prayed a lot about this, and I think God is telling me to do this, the Bible says share your testimony. My parents are Christian, too. So if that’s God’s will, we’ll support you, they said.

What if a fourth student suicide occurs at Penn this year, despite your efforts?

I’m trying my best, but at the end, we can’t really completely change everybody’s lives. We are humans with limitations. Did you watch the Disney movie “Frozen”? There’s that song “Let it Go.” I let go of my insecurities and unrealistic expectations for myself. I just do my best, and at the end it’s up to a higher being, I believe. I learned to become much more humble in my approach. I’m not a savior like Jesus Christ. I’m not going to actually change lives, I’m just here to share my story of hope and love and what I’ve been experiencing.

Is there anything about society’s response to suicidal thinking that you would most like to change, and how?

When people hear that someone had suicidal thoughts, one of the common natural responses is to avoid that person altogether, since they don’t want to be involved in the situation. It may be explained by the bystander effect combined with the diffusion of responsibility: Somebody should be doing something for them, but not me. My faculty advisor and professors at the University of Pennsylvania were all concerned about my condition back few years ago, but none of them really actively reached out to me personally. It is not because they are cold-hearted or apathetic, but because they thought they were not certified or qualified enough to deal with depression without a degree or a license.

That should change. I don’t have a Ph.D. in clinical psychology, but that does not mean that I can’t stop by and listen to my friends about their hardships, spend quality time with them, and pray for them.

Nobody is ready for suicide prevention. There are some prevention experts, but they absolutely cannot do the job alone. We all have friends and colleagues who might be depressed at this very moment, or at least be having a bad day. Around one in 10 Americans is depressed, so if you have more than 10 friends, you likely have somebody who you can reach out to check on. And they will appreciate it. It might, not to sound too dramatic,  even save some lives if we start to spread more love around every day. Please, please don’t ignore people who seem down or suicidal, they need your attention most at the moment.

As you said, you can’t really bring up this topic at a dinner party. But what can be done to make suicidal thinking something we can talk about more openly?

I don’t think people should always bring depression, mental illnesses, or suicides into dinner conversations. It might even cause increased thoughts of suicides. That would be almost similar to bringing up other grim topics of society, such as rape or murder, at a dinner party. What we could do better is to destigmatize mental health issues, since many people don’t really believe it’s a real condition.

People may tell you to simply “man up” or to “try harder” or to “be happy” when you tell them that you are depressed. For my darkest times, I did not have any capability to just “man up,” since my mind went through some sudden changes that disabled me to think positively at all for more than three months.

And depressive disorders are, tragically, too common. Around 120 million people worldwide suffer from some form of depression. I believe that is a vulnerable population worth investing our efforts into. When we get a cold, we don’t hesitate to visit a CVS to grab some medicine for fever. When we get chronically depressed, however, we hesitate and even feel ashamed admitting that we might be depressed and don’t seek for help. This negative stigma against mental health is not helpful at all. When there is an issue, we need to address it directly, and hiding it under fake smiles will only grow the problem further. For reasons I can’t still fully understand, I had a long depressive episode in my early college days that nearly ruined and perhaps even ended my life.

The struggle is real. Please believe me.

It’s not an easy disease to defeat, since it’s a plague of the mind, and the brain is one incredibly complicated system to deal with. Fortunately I had my loving parents, friends, and God taking care of me and seeking help for me.

Talk about this. Get support about this. Don’t ever give up about this. Pray about this. To add to the conversation, I share my email account to listen to your story _ yes, you reading this _ and tell you mine if you want to hear my case of recovery. We can perhaps be friends too after a few emails back and forth. I’m not that awkward in real life, I promise. You can find me at: jackpark778 (at) gmail.

Who else are you?

I’m working as an intern in a social impact consulting firm. I like studying marketing because I think it could be an easy fix for many problems. I used to intern for a cool Philadelphia laundry company.

I like Korean food (in Korea, it’s just called food), and I like traveling. I love seeing new cultures. I like to sing, I don’t know, this feels like filling out a dating site biography. And I think church can do a lot of good stuff for people, because you know, church and the Bible are often misunderstood. If you look beyond the misunderstandings, I think the Bible can do even more good than now.

Talking with Latosha Taylor

This is a story about how a speech has helped to change the course of Latosha Taylor’s life. She spoke to me from Arkansas, where she is acutely aware that her state is far behind in thinking about mental health.

“Recovery from mental illness, those words just spoke to me,” she said, recalling that pivotal day in the audience. “I had never heard that. I had always been made the problem, diagnosed with this and that. None made sense to me.”

She is now part of establishing her state’s first peer-run organization and making connections to others across the country. It’s a very different existence from her daily routine as a mom who works in a local deli during school hours, feeling at times like an “oddball,” but one with quite a future.

Who are you? Please introduce yourself.

My name is Latosha Roseanne Taylor, which should be Wright, but that’s another story. First of all, I’m a mother. That’s my number one priority. I am also a wife to probably the best man ever. I am an advocate against pretty much any injustice in life, which has also caused me just as much trouble as good. I am a person who has survived and experienced some of the deepest and most painful sorrows imaginable. I am a person who is walking my own path of recovery and from the traumas that I’ve experienced in my lifetime. I would like to say that I am a person of lived experience through many emotional walks of life, a person that is still learning how to live in this world and see it as the beautiful and spiritual place that my heart is showing me it to be. I am a person starting to thrive in this world because I am learning to take value in the experiences of my life to help others, so that they may travel an easier and more knowledgeable path through life than I did. This question of “Who am I?” could probably be better understood through my story:

I’m a survivor of sexual trauma. I’ve survived sexual trauma from the age of 4 to 12, and then I was first hospitalized when I was 14, and in that period of my life I was going through extreme emotional abuse from my mother’s boyfriend, so that was a really good foundation for a lot of chaos. Acting out behavior, that kind of thing.

I was in therapy for the first time at 9 years old because of sexual trauma. So that’s the start of my experience in the mental health system. At about 8 years old, I had my first suicide attempt. I haven’t talked about it so much. Who talks about those types of things? I’ve never talked about it. And then, so, my parents found me hanging from a tree and saved my life. At 14, I went to the hospital and it was a vacation, a vacation away from my family, that’s what it was like for me. My first diagnosis was depression. They put me on antidepressants and forced me to have a birth control shot, and they discharged me three weeks later because my mother’s insurance ran out.

Aftercare was the local mental health community. I started having reactions to meds, blacking out, not remembering things. I was self-harming at the time. I blacked out at the school, I don’t remember anything, but I woke up in chains and shackles at the county detention center. I remember on the way to the hospital that time, my parents were screaming what did I do, and I just felt so, “What’s wrong with me?” That day, you know, they put me in a hallway, under fluorescent lights, in scrub pajamas, and I’m crying, a couple days before my 15th birthday, thinking, “What did I do? I’m a problem for my family.” Not knowing what’s going on. The nurse didn’t comfort me, she came and stuck a shot in my butt and knocked me out. That’s the care I was given. So I got diagnosed with PTSD that time, I was there three and a half weeks, and I felt disvalued. I was under care and monitoring the whole time. I had a male nurse who was taking care of me, taking me out back trying to tell me inappropriate things. Those are the things I went through.

I got out, went back to the same family dynamics that were not healthy for me before. I was out three and a half months. Then I got in trouble on the school bus one day. I was so scared when my dad was coming home that I tried to take my life again. They pumped my stomach. I was in the hospital overnight. And apparently I had been drugged, they found PCP in my bloodstream. I went back to the same hospital.

But I always have this spirit of fighting. I knew it was not a mental disorder. In my head, I never felt crazy. I knew it was the things going on around me. My mother had had her own sexual trauma as a child, and when it happened to me, she didn’t know how to handle it. There was no unconditional love. I would never hear “I love you.” I’m just telling you random things. My dad would tell me every day I would never amount to anything.

I guess another attention-seeking behavior, at 13 I started having sex. I guess that was the way I thought I would always be loved. After the third time in the hospital, I managed to stay out a while and met my first husband. At that time, I was too young and I thought the natural thing to do was get married, have a family. About three years into the marriage, I had a child. About two months, after my son was born, my aunt died in a car accident. I didn’t know how to handle it. I started shutting down. They diagnosed it as postpartum depression. I told my husband that he and my child were my problem and didn’t want them anymore. I had started an affair. My husband took my baby and divorced me, and I was only getting supervised visits with my child. I had a year of being on drugs and wild and not paying attention to my responsibilities. I just didn’t have support around me. I got a divorce, and my mom said I got what I deserved. There was just no support.

So about a year after me and my husband divorced, maybe nine months, something like that, my husband ended up having a drug dependency issue and was unable to take care of our son properly. They opened a DHS case on my ex-husband. More mental health evaluations. During the divorce, I did check myself into the hospital, on my own. The anxiety was so bad, I was having suicidal ideation so bad, I was so scared I had nowhere else to turn. I wasn’t forced, but I did check myself in. And that was when I found my first empowerment with mental health. There was a woman there, fighting them every step of the way. When I was an adolescent, I didn’t fight. I thought that was the way it was supposed to be.

They put me on more meds. As a teen, my mother took me off all meds at some point. I don’t know if it was a bad thing or good thing. So I was never regularly on meds those teens and early 20s.

Am I telling too much details? I’m just trying to think of everything that happened. So anyway, in that hospital this lady was fighting for her rights. I had this borderline diagnosis. They court-ordered me to have all these mental health evaluations. At this time, I got pregnant with my second child. The dad didn’t want nothing to do with him. I went through a lot with DHS, being manipulated by another system, but ultimately I ended up losing custody of my first and second child. The first lives with my mother-in-law and the second lives with my parents. Within four months I married my second husband, who would very quickly start abusing me. That’s where my self-esteem was. I felt I deserved it. Not long after that, I got pregnant with my third child. He abused me until I was six months pregnant, and then I never let him lay a hand on me again during my pregnancy, using threats of calling the police, his biggest fear since he was still on parole. When my son was born, I was living in a home with, like, 13 other people, two of them crack dealers. Just trying to survive. It truly was one of the lowest points in my life.

I ended up moving to a different town with one of my girlfriends, trying to bring my son and I out of the situation I had gotten into. My husband ended up following me into my new life I was trying to make. During this time, unknown to me, I ended up pregnant with my daughter, and and about four weeks in, my husband beat me for the last time. I called the police and had him sent back to prison. That’s probably one of the bravest things I’ve ever done. Because of this, I lost what little support I had from his family and thankfully, my sister allowed my youngest son and I to move in with her in yet a different town.

During this time, I started to rebuild a new life and started taking steps forward and through a series of momentous decisions. I lost custody of my two youngest children after my daughter was born. Within four months, I got them back though. In that process, the court ordered another mental health evaluation. And this time, I was given an opportunity and took full advantage of starting my recovery process. For me, it was recovery beginning from substance abuse. Ultimately, I found a doctor and a therapist who were on my side, who listened to me, who never made me feel less than, never made me feel like a victim of a system. I ended up with a diagnosis of bipolar. But I still don’t think I really took my recovery as I should have. I continued to just survive.

In early 2010, I felt I was on the verge of another breakdown. My doctor had prescribed me Xanax, and I started abusing Xanax to the point I was living in an altered reality daily, and I resorted to buying them off the street to feed my habit. At some point, my loved ones started pointing out my obvious problem and encouraged me to seek help. When I tried to quit and get off the medication on my own, I started having hallucinations of hearing and seeing things, like the shadows had come alive. It was one of the scariest moments in my life, not only because of the state I was in, but also because my two children were in the other room and I had the fear that I wasn’t gonna come out of that night alive and they would wake up alone.

I checked into another hospital the next morning. This time in the hospital, I felt my rights completely were taken away. Here I come in feeling like I was crazy, and I know I was looking a little wild, not in my right mind. I was not “there” for the first day or so. When I finally came around to being there, they wouldn’t give me my clothes back, let me fix my hair properly, or give me my makeup. I know it sounds like a small thing, but it was so important to me. I like to get up and put my makeup on. It makes me feel like a human being. I felt like I wasn’t doing my maintenance. They told me I didn’t have the right to do this or that. I said, “I voluntarily checked myself in here!” So I had to fight for my rights. We had a compromise, and I got what I wanted.

Then when they were discharging me, they tried to give me a prescription to Klonopin, and I refused to take that. I mean, I came in the hospital voluntarily trying to get safely off of Xanax and deal with my abuse issue, and they wanted me to take Klonopin in its place. That didn’t make any sense to me. I did at this time start taking Lithium Carbonate, but only after doing my research, and I took this drug religiously for two years, which seemed to help stabilize me. For the record, though, I no longer take any meds.

After getting out of the hospital, I found myself being unable to go back to my highly stressful job at the private nursing home I had worked at for a few years. I took this opportunity, with the support of my then-fiance, to enroll in college and pursue my education. During the few months process of all of this, I was on Facebook, and I came across a post about this speech to be given at Arkansas Tech University, which was in my hometown, about 45 minutes away. So I challenged myself to step outside my box, and I drove the 45 minutes to participate in this seminar. The words that caught my eye were “empowerment and recovery from mental illness.” From my time in the hospital, I already felt empowered. But recovery from mental illness, those words just spoke to me. I had never heard that. I had always been made the problem, diagnosed with this and that. None made sense to me.

Dan Fisher did something different. He was telling something about the heart and head connecting, and it resonated with me something deep. I was like, “This is something I’ve been looking for my whole life!” I just sat in that speech, every sense awakening moment by moment as he spoke. At some point, he invited folks to sign a piece of paper if they were interested in doing advocacy work in our state. So I did, honestly just expecting a pamphlet in the mail. But he called me within an hour. He spoke to me with such respect that no one in my entire life had. When he said, “Hey, I’m setting up this group in your state,” I was all about it. I drove and met him, and it changed my life. That was March of 2010.

Since then, I’ve been a part of building the only peer-run nonprofit organization in my state. Through this process, I have come to learn of this great movement directed by people like me. People with similar lived experience as mine. People that wanted to be heard and that want to change how the mental health system treated people. Because of this door being opened to me, I have had so many positive life-altering experiences and connections that have allowed me to be a strong voice in my state. I think for me, where I’m at now in recovery is a lot of personal growth. I do a lot of organizational stuff. A lot is personal learning about myself, listening to my body, what it needs and doesn’t need. I have the right people around me for once. I get strength and encouragement from them. A lot of these dynamics are important to me in my recovery.

During this time of magical growth, I managed to graduate with an associate’s degree, the very first goal that I had set and accomplished as an adult. Then I decided that for me, as part of my recovery, about a year and a half ago me and my doctor decided to transfer off medication. I’ve been med-free for about a year and a half. It’s not an easy road. I do have mood swings. But like I said, people around me push me forward. I call it a spiritual journey, such an awakening for me. I’ve learned so much for my family, having some understanding. And on my angry days, I have the support I need.

But what’s happened with me in the last couple years, my suicidal ideations did return. A lot of it was that my husband was on the road a lot in the last year. I have to be careful taking on a lot of stress. Over the summer, I had two friends die by suicide. For me, where already I was in my dark place, that kind of glorified suicide for me. I started having ideation. I was in a really dark spot at that moment because I felt no place to turn to. In September 2013, I was in a really dark spot. I had an angel come to me, that’s pretty much what happened. I started taking myself out of it again. I started sharing my thoughts with my husband. It felt safe to do, and the more I started talking about it, the more I felt better. I felt normal being able to talk about it.

A lot of times, I’m feeling like the oddball. I look around me, so many people are affected by this, but no one in my community talks about it. No one wants to. I live in the Bible Belt, first of all. And Arkansas is backwards in mental health. There’s so much stigma attached to it. I went to a Coming out of the Darkness speech, and the guy who came and spoke with us, only a handful of people from the community come. He was the only one talking about it. It makes me sad to see that. We need more safe and open places to talk about suicide. And the stigma that follows a person, let’s not mention the shame of that. I hate the feeling of being trapped, unable to do or say something about it. So I’m very passionate about it. It needs to be talked about. I know the more I talk about my experiences, the better I feel.

This is where I’m at. I do maintenance. I do tai chi in the morning. I take the kids to school, and the fact that I’m able to do that is amazing, especially after the dark hole I just climbed out of. I’m starting to branch out in my community, finding my voice.

What kind of response do you get from people when you speak up?

Let’s just say I have a hard time making friends. I think it comes from where I’ve been at recently. I hate to use “depression” to describe myself. I just say a really dark hole. When I get to that point, it takes me a while to climb back out. I’m still in that climb, some days good, some days bad. I work at a deli during the day, just to get out during school hours, but when I get to the deli I have a hard time talking to people about daily stuff, a hard time making friends. Today, I told people I was going to the Tools for Change conference, and people just look at me. They just want to talk about what they talk about. People just clam up.

How is your peer organization doing?

Right now, all we are is a board of directors. We’re just starting to write for our first grants. We’ve went through a lot of growth and trainings in the last few years. We are starting to get some traction in our state as a legitimate voice as we look to change policy for the future of mental/behavioral health care in our state. We are staying connected nationally and are excited about bringing in folks to help us educate the state on what peer-supported services are and look like.

How big is your board?

Right now, we have eight. Our organization is doing a lot compared to where we started. Also, we’re starting to bridge with other stakeholders in our state, like the DBHS and other mental health affiliates. We are currently working with the DBHS to develop a peer support model that is Medicaid-billable so that we may have paid peer support specialists in our state. Something we’ve never had before.

How was the Alternatives conference?

I’ve been going since 2010. It’s the most life-altering experience. For me, every year, I go one way and come back a different way. I’m a changed person each time. I can be myself there. The bits and pieces I try to hide from the rest of the world, I don’t feel I have to hide there. And gosh, I’ve made so many lifelong friends and connections. I’ve learned so much to bring back to our state.

How was the attempt survivor caucus?

It was basically a safe place to talk about suicide. No inhibitions. I remember going, and actually I was running late, and I had waited all to day to go to this caucus. For some reason, Leah is a part of that for me. I met her in 2012, and in 2013 I made a point to be able to talk to her. And I’ve read a lot of what she’s done. I had went to a workshop she was in earlier that day, and I wanted to continue the conversation. I went up there and was late coming in. That was my first time ever of talking about my suicide attempts.

How many people were there?

It was about 20, 25 people. I just felt at home. My soul talked to other people. And that’s how the whole Alternatives is.

You’ve changed a lot. How is your family taking all of this?

My husband is my rock. When he came into my life, I was a hot mess. I had just lost my children. He saw something in my heart. He let me love myself. As I went through changes, I couldn’t have asked for a more patient man. We’ve been together almost six years, and married a year. He came in and loved me, the most unconditional love I’ve ever had. We’ve had rocky patches, and some has to do with me acting out. The traumas in my life have caused me some issues as an adult, but we work through them. He’s been great. My children, the two younger ones, it’s been great to be able to raise them because they’re a constant reminder that they love me for me. It’s been a great help. As far as the rest of my extended family, I’m just now opening up to them. My parents are not supportive whatsoever. I think they’re proud of me, but they’re stuck in their own little world.

Like the people at deli?

A lot of times, they don’t want to hear because they don’t want to bring it up again. It reminds them of their failure, I guess. There’s a lot of pain and history still there. And that’s the reason why I should have removed myself from them a very long time ago, which I did, I moved away from my hometown for five years. And it was good, too. I’ve since moved back to my hometown to be closer to my older children. It’s been more emotional. Family dynamics. The best I can do is maintain my own household and support and love them for who they are. I have come to my own reasoning and understanding about them. My folks are who they are, and I love them regardless.

What is the mental health system like there, and what would you like to change?

First of all, there are no alternatives. There’s not much education. There’s really nothing. What people do generally, and I can say from experience, you go to the ER, and they send you to a social worker who puts you in the hospital. Whether you put yourself there or they do, it’s the same thing. You go to see a therapist, they send you to a psychologist, you get diagnosed, put on meds. It’s a cycle. There’s no alternatives in our state whatsoever. None. I would like to see the mental health system rebuilt from the ground up.

What’s your plan for changing this?

First of all, our voices. Like what you’re doing today. Our stories need to be told. I would like to see the mental health community be trained in new alternatives as opposed to more traditional services. I would like to see communities of support that is not co-opted by our traditional mental health system. There’s lots of things I’d like to see. My plan for changing this is to utilize my voice in the continuing education of myself, so I can in turn educate fellow community members, leaders, and policy makers on how to build more inclusive communities that encourage a better quality of life for everyone.

Who else are you?

My greatest story in life is being a mom. I’m all mom. That’s my greatest joy. I love challenging myself to be a better mom. I know it sounds crazy. From my experiences as a child, I want to give better to my own children. That’s why I do a lot of work on myself. Being a mom is the best thing for me. To be able to grow myself and teach my children how to grow. I’m completely a soccer mom, basketball, baseball, I do them all. So my greatest value right now, everything I do is for my kids.

Talking with Sarah Yoon

Sarah Yoon asked me to use her English name. She continues to sift through her feelings and her identities. “At this moment, right now, I’m trying to figure out who I am. Again,” she says. “I thought I knew.”

Here, she talks about life as a Korean-American and cultural pressures to not show the effects of stress, how her therapist made a crucial connection by disclosing her own past depression, and whether she thinks she’ll ever be “cured.”

Who are you? Please introduce yourself.

I’m Sarah, I live in Queens, and I was raised here since, like, kindergarten. I immigrated here. I went to college and grad school out of state. I’m currently 33 years old, and I’m currently a math teacher. Although that might be subject to change.

You teach at a public school?

Well, I’m a certified math teacher, but the school I was in got downsized. They didn’t fire me, but I became an ATR; basically, I go to different schools every week. Considering I had a bad year last year, I decided to take it pretty easy. I’m taking a class right now, and it’s easier than teaching full-time. I’m currently doing a master’s program for a professional degree.

How did you find me?

The thing is, since I’ve experienced you-know-what, I don’t know if “comforting” is the right word, but I feel at home when hearing other people’s stories. Of course, different people have different situations, but I just feel like I’m not completely alone, you could say. Of course, you know, it’s kind of risky to read because it might trigger something, but at that point I was doing a lot better to do such things.

How are you doing these days?

Well, for me it’s been up and down, honestly. Every day and every week are different for me. This week is fine for me, but I don’t know what next week holds. I’m doing a lot better than a year ago, but I do have moments where I do have a breakdown, I guess. Now, it’s like once every month or two weeks. It used to be like every day. It was pretty bad last year.

How did you come back from that?

Well, it took a lot of willpower, honestly. Right now, I have a therapist I’ve been seeing three or four years so far, and I forced myself to see a psychiatrist, and I’m on two medications right now. I guess I try to keep myself busy. And although I have friends who have been a little flaky, they have been encouraging and stuff like that. Ironically, my ex-boyfriend has been the most supportive.

How did you decide to tell people?

The thing was that last year, and two years ago, were not the first times I had done these things. I guess six or seven years ago was the first time I had done these things. In 2007, I was hospitalized three times. And I’ve been trying different medications, but they really didn’t work. At that point I had a pretty good community and was able to bounce back pretty quickly.

I think this year, my depression was triggered by a breakup, actually, a breakup that shouldn’t have happened, and he kind of regrets what he did. I guess it got me into a state of confusion. I don’t know, I’ve been reading a lot of books, and it’s been a long process. I’m still recovering, honestly.

How did people respond?

Seven years ago, I was hospitalized, but it was up ’til the last attempt that my parents knew about it. I had no choice but to tell them. The first time, I didn’t tell them. When I did tell them, they took it extremely hard. They pretty much cried for two hours. My parents had a hard time because they come from a very conservative background, very Asian. It took a couple years to be on terms with it. This one, honestly, I was hospitalized once last year. My therapist urged me to tell my mom, and you know, my therapist spoke to my mom, and my mom got angry because I was drinking quite a lot. I don’t drink anymore. It’s a very slow process.

And with my friends, they come and go, honestly. Some people couldn’t deal with it, they kind of like walked away. The other half are extremely nonjudgmental, very encouraging. Ironically, my ex-boyfriend was at the point where it affected him, actually. And of course, his mother was opposed to us dating, that kind of thing. I know, it’s like a weird situation. But I became so depressed, more than I thought I’d be because we broke off the relationship. But I mean, I’m trying to move on with my life.

And I have very few close friends. The ones I have, they’ve been pretty awesome, trying to make sure I’m OK. They’ve been very gentle, very accommodating. I mean, they’re like a little younger than me, and some of my closest friends are not of Asian background. I don’t know why, it was easier to talk to them. A couple of my Asian girlfriends couldn’t deal with it, maybe because they’re kind of fake, I don’t know. One of my friends from college, for like 10 years, kind of fell off the face of the earth. The other one, she said she’s always busy, but I think she feels incapable of dealing with this. My ex-boyfriend is a very strong person and couldn’t deal with it, either.

What made you decide to speak with me?

The thing is, I’ve always been passionate about mental health and the stigma of mental health, depression, whatever mental illness. And for me, I think it always is something, a cause, that I want to be part of. I’m Asian, and Korean. And most Koreans have difficulty accepting it, but in Korea, they have the highest suicide rate of the world. It’s pretty ironic, actually. I have a much older friend who is Korean, she’s actually a professor at Harvard, and I think every year she goes to Korea to kind of, like, raise awareness about mental health. I feel that’s courageous and noble.

Why does she do that?

I don’t if there’s a personal thing, but it is something she’s always been passionate with. She’s got a doctorate in psychology, a mental health worker.

You mentioned conservative and Asian. Why is that, and do you think it’s linked somehow to the high suicide rate?

In Korean culture, I think, we were kind of taught to suppress our emotions. I think our identity comes with doing well in school, in life, being a good mother or father. In a way, and I’ve thought about this a lot, I feel our emotional being is neglected. I think it’s the last priority our parents teach us. I have to be true to myself. I see it in my friends as well.

How do you even start to change that? Should you?

It’s a very big task to raise awareness. I mean, I haven’t thought too much in a full extent, but given that I’m an idealist … I don’t have a solution, though.

But with your parents, are you more open?

We don’t really talk about it a lot, honestly? Given that we go on with our lives, I guess they just accepted it. It used to be case where my mom was opposed to me getting medication. Last year she was like, “Try to get off medication as soon as possible,” and I’m like, “Am I going to take this for the rest of my life?”

Sorry, I sort of lost my train of thought. I was on medication a couple of years ago when I first attempted, and I guess I’ve been, like, changing medication all the time because one thing didn’t work and another didn’t work. My biggest mistake was to get off medication on my own volition. I think because I wasn’t maintaining my well-being, that’s also the reason why I kind of crumbled. When I went to the hospital, I had no choice because the psychiatrist kind of forced me. Not forced me, but highly encouraged me to take the medication. I got over my stubbornness. At first I was like, “I’m not going to take medication at all.”

What else have you done for yourself?

I’ve been trying to focus on myself. I don’t know if that’s wellness. For me, I think my problem has always been worrying what other people thought of me. My happiness depended on my relationship with other people. At this moment, right now, I’m trying to figure out who I am. Again. I thought I knew. I’m just trying to figure out what works best for me. I mean, this math teaching career, I’m not completely passionate about this career, so I’ve been thinking what career is best for me, so I’m trying to figure that out. Another thing I’m doing is, I’ve been trying to watch what I eat because, you know, your food and your mood is connected? I’ve read a lot of things. And trying to balance life with sleep and stuff like that.

What would you like to change about the kinds of support and treatment you’ve received?

I mean, nobody’s perfect. My therapist and psychiatrist are doing their best. And at times, my therapist doesn’t understand me. But I guess, of course, there’s nobody who can inside and out understand me completely. But I guess they’re trying to understand me?

In the history of all my relationships, I feel like I’ve always been betrayed a lot. And not just romantic relationships. That’s where most of my depression comes from. I wish the quality of relationships would be in a way where I wouldn’t feel judged. And I guess for me, loyalty is big. And to not be judgmental.

I guess it’s easy to be judgmental on topics like mental health?

Definitely in the Asian-American community. For instance, a girl I was in the hospital with, she was Korean, a good 10 years younger, her parents know my parents. A few months ago, my mom found out she had jumped off a bridge and killed herself. It depressed me a lot, actually. Of course I knew the girl, sort of. I thought about her situation, what would have been the step for her to have not taken that step, if you know what I mean? What preventative measures could have been done? It just says a lot, I guess, that issues of mental health are so suppressed. I don’t know for different races, but at least in the Asian-American community if you’re depressed, it’s kind of like it’s your fault, like you lacking in something, you now? It’s hard to take.

And a lot of people have absolutely no idea what this is. For me, I experienced depression, I lived through it, I know what it is. But for your regular Joe Shmo, they have, like, no clue. I spoke to my pastor at my previous church, they’re good people, no mistaking me, but they’re, like, kind of ignorant. Because, like, they don’t really know what it is. And that bothered me.

I mean, my ex-boyfriend is Korean but a very understanding person. He’s done research to help me out. He got into depression because of me, actually. It’s pretty sad. Two of my closest friends are Caucasian and African-American. They understand me. I feel more comfortable with them. They don’t look at me with the strange eye, you know? If I have a bad weekend or something, they’re always there for me.

What about your colleagues?

For me, the church knew, but they were really great about it. I don’t know how that came about, but they were very good to me. But this time around, because I became older, in my early 30s and more mistrustful, probably like only about seven people know. Definitely not more than 10. I definitely will not tell my colleagues, people I’ve been to work with. Last year, when I attempted suicide, my boss and other math teachers absolutely did not know what I was going through. At all. I just covered for it, I guess. I guess I did a good job considering the state I was in.

I guess my biggest fear is telling my extended family. They live in Korea, and I don’t know. They like to compare me with a lot of cousins. I’m afraid if they knew about my depression or attempt, they’d be kind of like putting me down. And also, you know, the church that I left, I did not feel comfortable with the people because they were superficial, like a high school. And it would have been really hard. One of the girls, she’s actually  a social worker and an advocate of mental health, Korean-American, and it was comfortable for me to talk to her. But for the rest of them, definitely not.

You like in Queens, a very diverse community. Does that help?

A few years ago, all my friends were Korean. For some reason, I felt like I didn’t connect with them. I always felt like something was wrong with me. But given that I work in a profession where there is diversity, I met a lot of Hispanic teachers, Caucasian, and I realized I was extremely comfortable with them. It’s like a recent epiphany.

You mentioned wanting to be a mental health advocate. What do you have in mind?

It’s still a thought in process, but I’m trying to figure out how to help. I mean, the thing was that in my mid-20s, I have a master’s in school psychology. What happened was, I guess I breached confidentiality and pretty much got kicked out of grad school. I loved the program, and I looked forward to becoming a school psychologist. And even after all this happened, I guess I got kicked out after my first set of attempts. It was chaotic. I guess I felt like my hopes and dreams were gone; I thought I wouldn’t be able to return to the field because of my history, my past.

I tried to apply for Ph.D. programs, but of course I didn’t get into any of them because part of my transcript was not complete. And then, I guess, the reason why I got into being a math teacher was because I was more interested in adolescence and mental health. I first became depressed around 15 or 16, actually. Since I remembered my experience as a teen with depression, I guess I wanted to relate. But I guess being a math teacher took over.

But at some point, I do want to became a therapist myself. Kind of like food for thought.

Just checking, you weren’t kicked out because of your attempt? Because that’s illegal.

No.

(We talk a little about disclosure, especially in the mental health world.)

My therapist actually shares that she had a long period of depression. I guess my depression was so severe that she mentioned it. I think we’re comfortable enough where she’s able to share her experience with grief and depression. She didn’t attempt suicide, but at some point she was able to relate to me. She’s extremely empathetic.

Do you think all therapists should be open like that?

For me, I think it’s a positive thing. If I speak to a person who’s never even been through depression, that person could do so much research on it, but he or she wouldn’t know the full extent of it.

My therapist is much, much older, in her 60s, I guess. Her depression happened long ago, in her 30s or 40s. I guess for her it’s something she has let go of? Like a phase she’s moved off from. That’s why I think she’s comfortable. She didn’t share, like, her whole life story or anything. She went into depression because her husband died. She just talks a little bit; she doesn’t talk about it for half an hour. If she feels like it’s necessary. So she can kind of, like, use her life example to, I guess, for me to relate to her.

Is there anything you’d like to add?

I guess the past year has been a little crazy for me. I was rock bottom, honestly. For me right now? I just feel like I’m still digesting it. It just seems so surreal that I felt this much depressed. And it’s kind of like, when you go into depression you have a difficult time seeing what’s in front of you, focusing. Even to this day, I sometimes have difficulty being motivated. And on a bad day, I don’t want to do anything. My last bad thought was maybe three weeks ago? I’m still trying to come out of this. I’m not fully recovered.

Do you think you can be cured?

Personally, I’ve thought of that question. I have absolutely no idea. I want to know the answer. There are times I’m able to say, “I’m able to recover from this.” I watched a lot of documentaries on the BBC, etc., but I hear people who have depression for 10, 20, 30, 40 years, whatever.

For me, I’ve always never been normal. I mean, not normal as in “Am I weird?” but normal as in terms of mood. It could be extremely low or extremely high. I mean, I forgot to tell you that last year, also like six years ago, I went into a DBT program. Six years ago, I was doing partial after my full. During the day, I was in the hospital, a partial hospitalization program only for women. That helped considerably. I did it last year. I was there for a good six or seven months. Every Saturday I went. I mean, of course, I was too depressed to kind of practice all that. But it takes a lot of willpower.

Do you do it now? Does it help?

I guess for me, I’m in the process of digesting a little bit of everything right now. I’ve been trying to keep myself busy. I tutor two kids twice a week, and I’m starting to study for exams. I don’t know, staying busy kind of helps. Although it could be not a good thing.

Who else are you?

That’s a very hard question. I’m a good friend, a very good friend. And I’m good at art, good at math, a good teacher. I can relate to people pretty well. I don’t know if it’s relevant to say … I’m naturally very reserved, though you probably wouldn’t believe it. I have a lot of interests, actually. I guess, you know, sometimes I could love being around people. I have a lot of fears, obviously. And I’m Asian-American, Korean-American, American. I guess I’m trying to find my American-ness, I don’t know if I can say that. I’m a jack of all trades and master of none.

The thing is, I’m extremely jaded with romantic relationships. And although I tell my mother or father that I’ll never get married, but in all honestly, I would really want to become a mother. And then I feel like my life would be different. I’d be a good mother. My problem in the past was, I was too nice and people took advantage. You know, always try to find a balance in life. Not be too nice to people. So, you know, eventually I want to get out of my jadedness in people and hopefully not be a cranky old lady, and hopefully will come out of this depression 100 percent. Hopefully. I think it will always be part of me, since I had it since I was 15 or 16. Although, like, I’ve felt hopeless, I actually feel hopeful most of the time. I want to be hopeful and optimistic.

Talking with Lilly Glass Akoto

Lilly Glass Akoto is a licensed clinical social worker, and in the course of this conversation she said something startling: “I never got any training, no specific training on suicidal thinking. … there’s nothing to do with helping someone with suicidal thinking. There’s nothing to do with how to talk with somebody, give somebody hope.”

If social workers aren’t being trained in working with suicidal people, who is?

Here, Lilly talks about the risks of speaking out about suicidal thinking as a professional and her work to address them, her thoughts on whether someone needs to be “cured” before taking on public speaking about their suicidal experience, and how she, as a strong Christian, found it hard to have support in her own church on mental health issues.

Who are you? Please introduce yourself.

I think you asking me that, versus someone else, obviously I would give a different answer. For wanting to know where I’m coming from and why I’m part of the task force, where I’m coming from is 30 years of battling depression. I’m an adult adoptee, I was adopted into a white family and grew up in a white world. The depression started not because something terrible happened to me but because I couldn’t figure out my existence. As a 7- and 8-year-old, thinking why I was on this earth was a kind of weird thing. It makes one feel quite different. So I battled depression. I would cut on myself. I attempted suicide five times. My last was six years ago. And when I tried to kill myself the last time, I got myself into counseling, EMDR. And for whatever reason, that worked so phenomenally well for me. Literally within two months, I was a completely different person. I’m already in the field, and I’d been in counseling for a long time, been doing therapy for others for a long time, and I like to understand how things work. After my very first session, I immediately started feeling better, and I was questioning the process: “Why does this work?” By the second session, I didn’t care. I felt so phenomenally better, I just didn’t care.

And so, pretty much since that healing process, I stuck with her for two years, six sessions of EMDR, and by the end of it, I was a completely changed person. But one of the interesting side effects is that I then had this sort of diarrhea mouth syndrome, where I sort of went around telling people how great EMDR was and how everybody could get healed. I went to extremes: “Hey, yeah, I tried to kill myself, but now I’m doing great!” It was not great. I ended up losing clinical positions because of it. I went through a bit of that. But in my life now, I’m very centered, very clear about it. Now I have a great passion for suicide attempt survivors, a passion for people to heal from brokenness. I don’t know about you, where you’ve been, but for me, a lot of mental health agencies, programs, have been “Yeah, you’ve got a debilitating mental health issue, and we’ll help you manage.” I think that ‘s OK, I want to promote teaching skills, how to deal, but I’m about the next step, healing. That’s really lacking. So that’s one part of who I am, you know.

What will you pursue for professionals?

Right now, I’m thinking about … I’ve been working with NAMI and have a great girlfriend there, and we talk all the time. There’s a couple of things going on with our NAMI here, peer-to-peer and family-to-family, but there’s no professional-to-professional. So one idea is following the same format and introducing to NAMI professional-to-professional, so that professionals have a safe place, a free, safe place to go to process through. And I’m thinking about, like, educating folks about how to talk to their employers, the supports needed in place, how talk to your family when you’re struggling at work. And how do you best manage the duality you feel as an employee. Meaning, you know you’re doing good work, but also you’re now struggling. So how to balance those two so the depression or whatever doesn’t get the best of you. And you’re able to gain some skills on how to get things done. I know a lot of professionals won’t talk about struggling. Instead of that, they sit and suffer with it, and things get worse and worse. I fortunately happen to be someone who, I would run to work because it was safe for me, the one place I felt successful, but lots of people, they don’t even realize the slew of mistakes they’re making on the job. So having a safe place to talk this out without the threat of somebody else, a boss or colleague, reporting them, is sort of what I’m thinking about right now.

And NAMI is pretty receptive?

Oh yeah, they would definitely take that on. Our NAMI is, anyway. The other thing I talk to my girlfriend about all the time is, they’re not good with cultural issues. Our NAMI is pretty white. And you know, you need to pay attention to culture. I’m biracial and navigate the white world better than the other world, but at the same time … I don’t believe in this whole “Make all those exceptions and special things for people of color,” but I do believe that culture matters. So whether you’re a white country boy or a hip-hop whatever, it doesn’t matter. The culture has to be recognized and acknowledged, I guess. And I think NAMI is not doing a good job at that at all. And they just now, now they have LGBT, they have developed a NAMI group for that, so that’s good. But in terms of like, for example, you’re not gonna find a lot of black people here in Oregon who utilize NAMI, and NAMI isn’t doing anything about that.

Why is there such stigma in the mental health and suicide prevention world about suicidal thinking? You’d think here, of all places …

Honestly, I really don’t know. But in my journey, the mental health field was the absolute worst and most painful to me. The question is the exact same question I’ve pondered. How is it that in the mental health world, the world that should understand these things, they are the worst and most persecuting? I don’t get it.

What’s with the liability fears in this field? If this is a potentially fatal health condition, like cancer or heart disease, I don’t understand why medical professionals can accept such risks and treat people while mental health professionals back away.

Yeah! I don’t know how to answer that! I like the analogy you gave. It’s a question that just, every day I’m asking. And again, you know, that’s why I really speak up and promote in my practice that I will work with you if you have suicidal thinking.

I never got any training, no specific training on suicidal thinking. All they do is teach you how to assess, this idea that you assess every session for stability and use a form to ask questions, but there’s nothing to do with helping someone with suicidal thinking. There’s nothing to do with how to talk with somebody, give somebody hope. We were never given lectures on that. But I also went to a school for social work. Maybe in a counseling program, they do. But in a school of social work, it’s not one of things they teach you about.

That’s odd, because I’ve heard some people say they prefer social workers over other therapists.

Yes, and I think the reason is because social workers are trained to think more holistically. I started off on the psychiatry track, but they tried narrowing me into something, and I needed something broader, and social work provided that for me. The reason why folks seem to to do pretty well with social workers is because we are trained to think about your spiritual health, emotional health, all of those different things. Versus just, “Here’s your thinking, and here’s how we can change it.” You know what I mean? I’m biased, but that’s why I think you hear that. And we’re resourcers. You can talk all day to somebody, but if you don’t, you know, you have to give people tangible things, concrete things to work with.

What needs to change?

You know, I think a large reason of why I was so excited to join the task force, I think working on this document personally has given me a lot of hope. I can see the potential of how this document really will begin to change people’s thinking. Just for AAS to go through what they’re going through, “If you sign up and say you’re an attempt survivor,” they’re finally making way for that … I think we’re expanding our conversation about suicidality in general. I think we’re pressing forward.

I also think, and I don’t know, this is just baby thinking right now, but in my experience sharing my story, I’ve been doing it more and more, I’ve been asked to speak. And I’ve noticed the impact my story has is amazing. I’ve never been a person who toots my own horn, but I am in a place in my life where I can recognize the fact that my story does change things. So I was so excited when you said, “Hey, want to talk?” Yeah, certainly! I know putting my story out there, being a professional … I have this funny image in my head of dressing in the most expensive ladies’ outfit, with my jacket and my pumps and everything else, looking very sharp and professional, and then speaking my story. To make the point that I look put together, and I am together in my life now, I’m a professional, but there’s the reality of my story. And I feel like, the more speakers bureaus we can get on board, that’s another way to really begin to change people’s thinking.

Someone had mentioned creating a website. My thinking is, how great would it be to have video vignettes of people telling their story on the website? We live in such a media world, you know, I just think these things are powerful and can make an impact. So I don’t know if I answered your question, but finding people to speak out and doing more and more … Obviously, at some point there has to be people fighting for policy change. There needs to be clearly stated laws within the job contract that say, “If I need to get mental health help, my job is secured.” It’s really clearly written out. We have EAP, but not every place has it, and some EAPs are good, and some are not. Who trains them?

Ideally, what protections would you like for people who are open about this in the workplace?

The basic thing is job protection. I think that’s the greatest fear. You share your story, you’re open about it, and then you lose your job. I think job protection is one. But there’s also this element needed of … I’m trying to find the right language, but … I recognize that, to share my story, not everybody is ready to hear it. So let’s say on the job I share my story, and maybe someone gets triggered. And I’m not saying I caused it, but I am saying that a policy put into place has to not just be for me but for the agency. Does that make sense? I want the right to express whatever I need to express, but also I want safety for myself and my colleagues in the work setting. Lets say I’m working and have worked for two or three years at a place and get depressed and try to kill myself. And that information came out. One, I’d want protection. Two, I’d want the ability to process it with my boss. What about a work plan that’s about your emotional safety? I don’t think there’s anybody who would consider that because they would see it as a threat: “You’re emotionally unstable?” But I would like to see a work plan that doesn’t just involve technical things but also emotional support for people. EAPs give you, what, three sessions a year? Maybe if I’m really struggling, I get an additional three sessions. Tons of people never use EAP. The number one thing is not losing your job. And if a safety plan is in place, to make it safe to talk about it with your boss. If a colleague finds out about it or has to know about it, maybe they also need support.

You mentioned public speaking. Do you think people should be open about still having bad days? Some people have said they feel pressure to come off being “cured” when they speak.

Sorry. I’m only laughing because I think it’s a fabulous question. I’m just thinking how to formulate this answer, because I have an immediate and definitive answer. I believe that anyone at any particular level, meaning two weeks after it happened or 10 years after, I think anyone at any level can speak if _ so here’s my if _ if they’ve had the proper training and are at a proper place to be able to deliver the presentation. Does that make sense? If you and I were having this conversation four years ago, I really wasn’t ready to go speak. There has to be some sort of, and I don’t know what the process is, but I believe people need to be properly trained on how to properly deliver and after-deliver.

For example, Sally, who tried to hang herself, goes to a speaking engagement but hasn’t planned out her day for afterward, self-care things. If she hasn’t been able to think through these things, she’s probably not ready. But if you have researched it and exactly what to do after the speaking, and you know how to respond to different questions that come up, you’re probably ready to go and speak.

Your question though, should people admitting it’s not a done deal speak? Yes, 100 percent, because that’s the story of our lives, our reality. I’ve been in this profession over 20 years, and I’ve always done really good work. But 14 of those I was vastly depressed. I would meet with clients and go home and think about killing myself. But I would still deliver very good services. That duality is there. I’m married, I have two beautiful children, I’ve always been successful in my work, but that didn’t stop me from thinking of killing myself over and over. I definitely think people can talk about it, and I don’t feel that pressure at all to hold back anything, and I’m thinking maybe that’s a problem. I’m way too open. I say it like it is. I also realized that every presentation has been impactful because that’s how I am. And I’m OK with that. It doesn’t work for everybody, but that’s who I am and I’m not going to change it.

Since you mentioned your children, I wondered how you address this issue with them.

Well, this would then be another 20 minute conversation. My older son was 13 at the time … He saved my life. He came down the stairs, in the middle of me hanging myself, and screamed for his father. What a horrible experience, and one that took me a long time to process through. He and I have talked about it a few times, and finally he was old enough to tell me to never bring it up again. My younger son was asleep, and we have never spoken about it. My husband and I have never really processed through, since I attempted right after an argument with him. It is still a lingering issue within our family that I hope, one day, can be resolved. I know that my younger son, for a short time, went through a season of making statements like, “I am going to kill myself” when he would get upset about things. I can only conclude that even though he was asleep, he did overhear various conversations that followed. He and I did talk about issues but more in regards to his feelings, not about what Mommy did.

What else would you like to say on this topic? That’s a pretty broad question.

Yeah, really! Honestly, like I said, I’m at a point in my life where I want to speak my story, and I’m really … Let me back up. Let me share something different. Part of what happened in my healing process is, I got to this point of understanding in an extremely powerful way that I’m on this earth and one day I’m not gonna be. And that’s how simple life became for me. A lot of people that I initially started expressing that to kind of thought that was morbid, “I don’t want to hear that,” but for me, in my now-life, as I often refer to it, my life is just not that important that I … I’m not saying I’m not important, but I’m here on this earth and one day I’m not gonna be. It’s just that simple. So I give everything every day because it could be my last.

What I mean by that is, I want to speak my story and honestly, because I don’t know if someone in that audience is gonna be someone I touch that day and starts to change something in their life. I take every opportunity to make an impact. I don’t know what else to do with my life other than that. Whatever wisdom I have at this point in my life, I’ll share with whoever needs it. It’s so awful, my husband, he’s a very private person, and I’m not. It’s hard for him because of that, but I have nothing to hide, no secrets.

The whole other level for me is I’m a Christian, very strong in my faith. I pray a lot. And so, you know, back to who am I, I would say … To me, honestly I’m Lilly, and I’m a Christian first, and the whole life revolves around the Lord. Everything revolves around that. It’s not that I’m not important, I know I’m important, but my life is not. For my belief system, my life is in God’s hands, and I know he has beautiful and perfect plans for me. And I know there are challenging things going on, but they will lead to something great. But yeah, for what’s it’s worth, that’s kind of the reality of who I am. I’m a child of God, and I live my life that way.

And ironically, that was another area that was not a support to me in my healing journey. The church wasn’t a support to me because the church I belong to, there are a lot of misunderstandings about the work I do in the mental health world. There’s never been a thought to do Christian counseling. I’ll always work in the secular world. The church was like, “Just pray over it. Just pray and heal.” I was like, “Well, if that was the case, I would have been healed long ago.” They didn’t understand the issue, the fact that I’ve struggled with depression. And yes, I’m a Christian, but I’ve tried to take my own life. If just knowing God and praying would have solved it, I would be healed long ago.

I had had a therapist card in my wallet for a year before the incident. And it came out of my wallet, and I started counseling with her. And my whole life changed. That’s about God, keeping a counselor’s card in my wallet for a year. And that’s hard for my church friends to understand. Again, that’s the church I was connected to. I’ve since spoken my suicide story in other religious settings, other churches, and I’ve had a much different response. So yeah. it was really hard for members I went to church with to be supportive.

You kept the card in your wallet for a year. Were you trying the church approach first?

No, it was just deciding to get help. I’d seen counselors but for like three months, whatever. My true friends said, “You need to stick with a counselor at least a year.” When I started with the counselor after the incident, I did it for a little over two years. I made that commitment for myself. No, I didn’t want to get help and didn’t ask for help.

The mental health field must think we’re incredibly stubborn, always telling us to get help and having us refuse.

It’s a cycle, right? You’re depressed, troubled, you know you want help, need help, but you’re too tired or too ashamed or too sick to get the help you need. It’s a horrible, horrible trap, so to speak. Yeah. And I mentioned a few times about the duality that happens, too. I was really super-great at work, and had really good friends and things like that. On the outside, I looked really spectacular. But there was the inside that people didn’t know about, that I didn’t want them to know about, this shameful, ugly, pitiful person. How dare I ruin this image of me?

That was well put. Who else are you?

So I have this name, my name today is completely different from the name I grew up with. I legally changed it in 1994 before my first son was born. My parents adopted me and named me Brenda Joe, which makes me cringe, but my birth mother had named me Gail Celeste. Then I was in a foster home and my name was Muffin. Joy, joy. Then I was adopted. Then, when I was in college, I changed it to Brenna. Then when I went to Ghana, I had been writing about a deaf girl named Lilly. When I went to Ghana, I said people could call me Brenna or Lilly, and Brenna was hard to say and Lilly was easier. When I came back, I legally changed my name to Lilly. Glass comes from when I found my mother. I met her in college, and Glass is a representation of my reality of all my fantasies breaking in meeting my birth mother. I seriously had convinced myself that Oprah Winfrey was my birth mother. Meeting my birth mother, she was no Oprah. Glass represented how my world collided. Akoto is from my husband.

What’s the point of all that? Today, I just feel I am who I am. My current name is who I am, and I feel like up to this point, I was always what everybody else would tell me to be. They had given me these names, had these expectations, trying to make me somebody I wasn’t. Today, I get to just be me, Lilly, a Christian, biracial, adopted, married woman with two kids who works in the field of mental health.

So, yeah. I’m involved in a lot of volunteering, with the Dougie Center, Suicide Bereavement Support, and the task force, of course. And I’m a little bit connected to Eduardo because he asked me to be on the advisory council for his center. And NAMI. So I do lot of volunteer work, sticking within my field. Other than that, in terms of just being me, I love the outdoors, I love the country, I love athletics and all that. And I’m an easy person, you know? My husband doesn’t think so, but I’m an easy person. I get it: I’m here, and then I’m not.

Talking with Robert Scott Wall

Robert Scott Wall has gone from homelessness to lobbying for and helping to create an overhaul of Hawaii’s mental health services. We spoke when he was deep into a crucial legislative session, so expect some bursts of bureaucratic language ahead.

Here, he tells how his climb from a homeless shelter began with a friendly kidnapping by a psychiatrist, a stranger, who saw something special in him. “Get your stuff and come with me,” the doctor said. Still, it took more than four years, and a nasty bout of vertigo, to shake Robert into changing his life.

He knows that not everyone will be able to do the same. “I’m fighting for those people in shelters that will never get to live their dreams because they’re lost,” he says. “No one speaks for them.”

To me, my suicide attempts were ancillary to coping with the bipolar disorder. Also, one of the reasons I went out and became a public spokesman was mainly relevant to the homeless. I had blown up my whole world three different times, two of them real good. I broke my back in the first one and ended up in a coma three days the third time. None of them was because I wanted to die. It was because I wanted the pain to end. And I couldn’t think of any other way to stop the pain of depression.

I came from a family of bipolars. At one time, we had five living generations, so it wasn’t a surprise. We didn’t know what was going on, but we knew something was going on and could recognize it when it manifested itself. I was diagnosed when I was 12, and they started me on meds when I was 19. My first attempt was on my 22nd birthday, when I broke my back. However, I have been successful. I have 12 years’ worth of college. I worked 30 years as a professional union stagehand in theatre, but three different times because of manic episodes I literally destroyed my world. I ended up homeless in Honolulu and was put in a shelter. At that time, they had me on 11 different meds, including a gram and a half of Seroquel a day. I was a vegetable. I was there a year and a half, but I knew I was going to get out. There are advantages to a superior classical liberal arts education that can’t be denied.

While I was in the shelter, I realized that three-quarters of the people there were completely lost souls and couldn’t find their way out, wouldn’t have options, wouldn’t know how to exercise them, wouldn’t know how to get a meeting or what to say if they got a meeting. I ended up working with a SAMHSA grant the state department of health got, the Mental Health Transformation State Incentive Grant, and they had a speakers’ bureau they wanted to teach. Also, I got to live my dream, and I was never going to get to do it again. I was blackballed out of the theater. The reason stigma doesn’t bother me is because of that. I got to do my dream. So I’m fighting for those people in shelters that will never get to live their dreams because they’re lost. No one speaks for them.

I’ve spent the last five years working with the legislature. In 2010, I got selected as one of 14 co-authors to write a white paper on the Affordable Care Act and its impact on the employment of persons with disabilities. It was used as a reference for Congress, and I kind of made a Faustian bargain: I will absorb as much of this as you can put in me, and in exchange, I will spend the next four years educating my state legislature on the ACA. I’ve actually read the entire law and the supplemental rules and regulations.

You read the entire ACA?

I had to. It’s 1,700 pages, with 700 more pages of rules and regulations. It’s like reading “War and Peace” twice. Except in really, really, really bad bureaucratese instead of excellent prose.

Since then, I have been working developing peer-to-peer programs in Hawaii. We are creating a six-faceted, peer-to-peer program wrapped around and including Hawaii’s tremendous homeless problem, around the lack of affordable housing. The effort has become kind of a success. The governor included $2 million in the executive budget for it, and it will leverage $18 million in federal money for salaries for the peers.

I’m completely immersed in this. This is the crucial legislative session. The ACA started in January, and we are doing this so we can get the peers out there working to get the homeless off the streets and hook them into our health exchange, which we call the Hawaii Health Connector. It will include a forensic certified peer specialist program, our Housing First program for the most vulnerable of our homeless population, something called “grand aides.” It’s where you take _ in Hawaii, you would call it an “auntie” _ that lives in one of the Hawaii Public Housing Authority projects, someone everyone respects. There’s a triage program with a list of 30 questions, connected by videoconference with a federally qualified health center, and it reduces emergency department visits by 70 percent and same-day urgent care visits by 50 percent. We’ve got a section called community health workers. Then there is an entire section based around the generic patient navigators. This is paraprofessional medical workforce development. It will take people who’ve gone far enough into recovery where they can contemplate something like an actual career and transition them back into the workforce at whatever level they’re capable of. All these programs fall under the patient navigator provision of the Health Homes section of the Patient Centered Medical Homes.

The target population in Hawaii is Medicaid patients with two or more chronic medical conditions. In Hawaii, Medicaid is the single largest line item on the budget. Ninety percent of the Medicaid dollars are spent by 14 percent of the Medicaid population, and two-thirds of that 14 percent are behavioral health patients. The government is willing to double down to get them to whatever level they are capable of so they can drastically reduce Medicaid expenditures. Then the state can take that money and invest in affordable low-income housing.That can be used to help house the non- Medicaid homeless, as well as invest in affordable workforce housing.

It’s cheaper to treat us than street us.

Did you come up with that?

The line? Yeah, and the people from Housing First have been here for the last week, and they’re the ones who invented it in New York. We want to couple that with a franchise of Howie the Harp in New York that focused on wrap-around services for the mentally ill. Too many of us die, you know. The greatest medical disparity in America is the fact that the seriously mentally ill die 25 years before the average median age for the general population. If you look at someone like me, it would just be the waste of potential for me to die at 55. The suicide attempts were absolutely real. Certainly breaking your back qualifies. Ending up in a coma qualifies. The others were serious but ineffectual.

That’s what I’m working on, to show that these are lives that don’t need to be lost. There’s a complete shortage of care for the mentally ill. Most of the problem, I think, is we don’t have a lobby. We’re not cute, we’re not “Jerry’s kids,” we’re not puppies. We are the shopping cart ladies. They just want us to not be there. However when someone capable and articulate can come up before the legislature or Congress and show them this is a waste and prove to them that it can cost up to nine times more to not provide programs than to do it, they start to listen. The programs cost $6,000 to $12,000 a year. Each night in the hospital costs $1,200. A year in prison costs $40,000.

When I talked with the chair of the finance committee, I was blessed with witnessing a light bulb moment. You know, when you can see the light bulb go off above his head? He says, “Oh.” He brings his staff in and says, “Tell them everything you just told me.” That makes it incredibly worthwhile. When all six peer programs are fully ramped up, I think we could get up to 3,600 half-time Ticket to Work jobs for the disabled. This is going to save lives and change lives. The patient navigator provision says we can get a 9-to-1 federal match on the peer salaries, on the condition that they stay for two years with the employer as a navigator. If it’s a success, they transition into entry-level career-ladder jobs, freeing up their slots for a new generation, who they taught.

The thing about peer programs is that the consumers have to fix themselves. The thing they need is is a guide to show them that it’s possible and how the guide did it themselves. That’s what I’m doing.

When will all of this start?

The first of the six programs, the health exchange, that started the first of last October. The Housing First pilot program starts the first of April. We’re still writing for the other four arms of it. But the Center for Medicare and Medicaid Studies is going to get 53 Health Homes proposals from the states and territories, and they said they’re accepting everything and freezing them for three years while they study them, and then they will promulgate the best ideas. The Housing First is for life. As long as there are no lease violations, they will stay in the apartment. Even if there are lease violations, we’ll find them a different apartment.

That’s my brief speech, because they don’t let me talk much more than that in hearings.

How did you get out of the shelter?

I was rescued by a psychiatrist. The last year I was in the shelter, I was in inpatient six different times. The last time I was in the hospital, a psychiatrist came in the second morning at 6 a.m. He said, “Get your stuff and come with me.” He just walked out of the room. I basically thought I was being thrown out of the hospital. He was in the hall, and he said, “Come along,” and we walked right past the charge nurse, without doing any paperwork. He led me downstairs. He put me in a really nice green Jaguar, and we drove over the mountains into town to this building. Then he looked at me, and he said, “You
live here now.” He runs three different multi-person apartments for his patients that he thinks he can actually help. His name is Dr. Denis Mee-Lee, and he saved my life. He’s an angel. He let me just deal with my issues. I spent four and a half years virtually locked in my room. That’s not true, there were others in the building, but I healed.

Then I got the worst form of vertigo there is, called vestibular neurontis. It’s a virus, and I had to go to the hospital. I had to lie on my left side for 11 days, and I could neither read or watch TV because I would become nauseous. It was the most boring time I have ever experienced. Somewhere in there, I had an epiphany. I could no longer do nothing.

I had not had case management, and the only reason I still have it at all is if I go into crisis. I go into crisis about once every two years. I asked the state if I could borrow a case manager. They gave me their most senior one, about to retire. We had two hour-and-a-half-long lunches. He referred me to the local NAMI executive director, and I worked as her executive assistant for six months. She taught me how the legislature works. I transferred to United Self-help Hawaii’’s consumer-run organization, and I worked as executive assistant for the executive director there. He said that my job was to create a sustainable state-wide consumer network and to coordinate annual consumer conferences. Since I was from the theater, I could do it in my sleep. I did my first conference, and that’s where I met the people from the SAMHSA Mental Health Transformation State Incentive Grant.

But the executive director is too crazy for me, and I ended up helping to organize the second consumer organization in Hawaii, the Community Alliance for Mental Health. I’m the vice president and legislative advocate. We have a woman who actually works for an insurance company that has the community service contract. She’s also a consumer. I asked her if she would be the president, because her feet are more on the ground and she could keep an eye on me. We’ve been on our own feet for a year and a half.

The story you told about being rescued is striking. The apartment you stayed in, was it free for patients?

No, he charges rent. I was paying $350 rent. In Honolulu, a studio is $1,200. He was taking losses for his patients. It’s a question of him picking people he thinks he can actually save. He’s been my doctor for 14 years. He’s an angel. There are only four doctors on Oahu who are still taking Medicaid patients. One of the hardest things to do now is find doctors who take Medicaid patients. There’s an absolute shortage of specialists, and a lot of them are choosing not to. I can’t say too much about Dr. Mee-Lee. He’s a member of the Seventh-day Adventists. He doesn’t force people to remain clean and sober, but he stresses it. He tries to change your entire lifestyle. I haven’t gone that far for basically theological differences, but he takes a holistic approach to healing.

Did you ever ask him what he saw in you?

He is my psychiatrist, and I keep him abreast of all I’ve been doing, including being sent to Washington. He believed in me when nobody else did. It took four years to sell this patient navigator program to the legislature. The senator with the human services committee, she saw it, and virtually anything with these programs has to go through human services, and she has been my ally. Then I convinced the governor’s homeless coordinator, who started to talk to me because he was in the same hearings I testified in. Then the head of Hawaii Public Housing Authority started to talk to me. Slowly, one by one, I turned people around to it. The chair of the senate health committee believes in me but doesn’t think I’ll get 10 percent of what we’re shooting for. Whereas the head of human services believes you don’t get anything you don’t fight for.

You mentioned that you still have crises. How do you prepare for it?

I’m completely open. I made myself a public figure. I talk to the press. I’ve been on the front page of the paper a number of times. I’ve been completely open on the legislature, which broadcasts on community service TV. This all has to do with, somewhere when I was having the epiphany in the hospital, I realized that my life as far as what I wanted to do was over. I got to make movies. I got to work the Olympics. I got paid to do the World Series. When I was 30, I was making two grand a week. I’m never going to do that again.

The only possibility was to have a career in academia, where crazy is acceptable, or working with the government, who already knew who I was. So I’m public. I’m 57, and I’ve had 28 inpatients. Two-to-one have been mania over depression. Depression can last, god help me, months. But the mania, I’ve learned the symptoms, I’ve survived. And the doctor believes in me, the hospital believes in me. And we have a rule: If I go three nights of five hours or less sleep, I report into the doctor’s office. If I go three nights with three hours of sleep or less, I go to the hospital and basically self-admit. And so it’s a living process.

What are some of the striking responses you get from people out there, beyond your support network?

Well, my mother’s an English professor, and I was raised in the classics. I believe in hubris. I don’t believe in destiny or preordination, but I look at them, and it’s really hard for people to argue with the success I’m getting, so I really don’t care. I’m out there, and it’s working, and the government is supporting me. These are smart people, the elected representatives of the population.

The public has to understand, again, that it’s cheaper to treat us than to leave us on the street. We’re a protected class. They have to pay for us, whether through the criminal justice system or the emergency room. They’re going to pay for us, so it’s better to do it efficiently. They also have to see that.

There’s a concept in Hawaii I’ve never seen anyplace else. It’s called Ohana. It’s not just the people who love you, but the people who love the people who love you. If my best friend’s sister is in the hospital in South Carolina, even if I don’t know her, she affects me because she affects my best friend. We also have the concept of hanai family, the ones who are not your blood but still your family. Under the concept of Ohana, one of every eight families is impacted by mental health. We’re all trapped on this island, and Ohana thinks of the island as a canoe. This goes back to the Polynesian expansion. We have no place to go. We’re here and surrounded by sharks. We have to take care of each other, because there’s no one else to do it. You take care of your Ohana, because that’s what people do.

What does your family think, if they’re still around?

My family is on the mainland. My mother is one of the five generations of bipolars I spoke of. I was diagnosed because her first inpatient stay was when I was 12, and she and my father got divorced because he couldn’t keep his zipper up. Part of her process was, her doctor wanted to do family therapy. He kept looking at me, and at the end of the second family therapy session, he looked at me and said, “And you’re one, too.”

And she supports it. My father’s dead. My sister is also a fellow traveler. She has four children, and one of her children for sure is, and another one maybe is, too. My maternal grandmother was unipolar depressive, and god help me, I would shoot myself if I was that.

The only bad in the family does not have to do with mental illness; it has to do with politics. Originally, we’re from Texas. We moved to Berkeley in the mid-60s so my father could go to seminary. I ended up being a junior high and high school kid in Berkeley in the midst of the revolution. We were under martial law for three years. I grew up in the riots. The only difference with the rest of the family is all political and theological. My family is my mother and my sister and a couple of residual best friends from growing up.

Did they know you had ended up in a shelter?

As I said, I blew up my world three different times. For my mother and sister, it was the point where you can’t fix people, they have to fix themselves, and a consumer can’t do it until they are ready. I had gotten to the point where I was destructive to my family unit. So I ended up on my own.

I had gotten my disability settlement. It took three years to get my Social Security disability. They had given me 24 grand in cash. I was old enough to realize the potential for danger, and I wanted to be healthy after the leaving the theater. I was going to go back to school. I knew if I kept that money, it would be gone. So I had $24,000, and my mom had perfect credit, and we bought a house together so the money would not be wasted. I went back to school, and I was three classes short of my master’s in history when I had the third suicide attempt and ended up in a coma. That did possibly more damage to my mother than to me. We had to separate. So we sold the house, and I wound up in Waikiki in 1999 with about $25,000, and I went through that in six months.

I had no place, no grounding, and again it was a continuation of the third destruction. I was completely mad by the time I ended up broke. The hospital placed me in the shelter after I was no longer in need of acute care. They had me so medicated I was sleeping 12 hours, non-functional six hours and barely coherent six hours a day. But again, I knew inside me that I was going to get through it, and once again, there’s nothing like a classical liberal arts education. I didn’t know what to do with myself, but knew I wasn’t done.

And they’re unbelievably proud that it actually is working. It’s really nice. The government will let me stop off on the way home on the way back from Washington, so I can stop in California on my way back and visit. Also, since I have to have unlimited long distance to talk to the East Coast, sometimes we just visit over crazy news items. Recently, I talked with my mother on the phone a lot about Chris Christie. It tickles me to death watching the Republican Party self-destruct.

What else would you like to do?

Again, I believe in hubris, and I’m afraid I’m going to wake up and see it was a dream. It has to go through. The governor’s homeless coordinator wants me to be the coordinator for the six peer programs. That’s an honor, and I certainly can use some money, but I don’t want to use the last years of my working life as a bureaucrat, so I have to see what it entails. They’re giving it to me because it is my vision and my dream, and I want to see it on its feet.

I’ve been healthy and grounded a number of years now, and I have been very lacking in joy. I want some joy. So, between making the vision come to fruition and balancing that up with bringing some joy back into my life. I have an idea. There’s a glimmer out there. I might have met someone. But that’s brand-new, and I don’t know. Balancing bringing to fruition and bringing happiness to myself is what I want and what I need.

Your work is far broader than suicide attempt survivors, but what, if anything, would you like to see changed on that issue?

I would like to see mental health treated with true parity and regarded as an illness and not as an aberration. I don’t think anybody can think any patient, anybody suffering from it, is doing anything wrong. It’s an individual road for each person. But yes, the topic needs to spread.

I have to remember, and the public has to understand, that stigma is still real. It’s going to affect you if you come out. It’s not like coming out of the closet as gay. Being gay doesn’t mean you can’t do your job. No corporation is going to hire someone acknowledged as mentally ill. They will believe that you’ll miss work deadlines. They’re not going to trust us. As I said, the only place I thought I could work is academia or government. Lawyers aren’t going to come out. Physicians, certainly, will not. Most elementary and high school teachers would not be able to. Reporters, well, Hunter S. Thomson got away with it. I can’t judge, but I don’t think there’s going to be many people that are in the emotional position where they’re going to be able to. I wouldn’t have done it except for the fact that I got to do my dream. That, and the fact that I got to sit in the shelter and live with people who would never find a way out. I’m doing it for them. Somebody has to.

How will they get out?

Everybody isn’t going to get, quote-unquote, “well.” But our goal is to have everyone achieve the optimum life they’re capable of. Some will never get out. Some, perhaps, will only make it to independent living. Some will never get past going to their clubhouses. Some will get jobs, maybe full-time, maybe not. Some might be able to go back to school and do even better. You play the hand you’re dealt. We just want them to get a fair seat at the table.

Who else are you?

I’m a stagehand. I’m a historian. I grew up on a working ranch, so the little boy in me is a cowboy. I consider myself a rational anarchist and some level of a socialist. I was raised in Berkeley. I’m a hippie, a well-educated hippie. I say I have Texas values and hippie ethics. Sometimes I say it’s the other way around.

Anything else you’d like to add?

I’m glad I’m not dead. I still can envision it, unfortunately, happening again. I made a pledge I’d never do it until my mother was dead. I’m not going to have children, I decided a long time ago. I wouldn’t want to pass the depression on to anyone, and I think that’s tragic, and I hope the NIH and NIMH will be able to someday find a way to actually do gene therapy and get this out of us. Some days, the black funk comes over you, and it’s terrifying. But I’m not a clinician, I don’t have a master’s in public health, I don’t know how to do anything about it. All I have is the power of persuasion, and I’m trying to do the best I can with that.

Talking with Alexis Wortley

Alexis Wortley is coming out, here and now. In the eight years since her attempt, she has been embarrassed about giving up on herself and has been seeking atonement for what she did. Seeing another attempt survivor speak openly helped her decide to do the same. As she started sharing with family, friends and colleagues over the past week, a weight began to lift. And she was surprised to find that her parents had long forgiven her.

Now Alexis, an elementary school teacher in Washington state, is working on finding ways to be happy and realizing that maybe people do care, if you let them. “Maybe the human spirit is also being strong enough to say, ‘I’m not as strong as I thought,'” she says.

Who are you? Please introduce yourself.

So, who am I? Um, well, and it’s interesting, I read previous interviews and wrote stuff down, and now I’m looking at it thinking, “No, I don’t want to say that anymore.” I’m just another person in the world, a teacher, I wanted to be one since I was 5, and I used to come home from school and want to play school and had this dream of standing up in front of a classroom of kids and giving them knowledge and learning and facts and stuff. I’m a military brat, both of my parents were Marines, and it’s kind of funny that both are from the same state and met in Hawaii, and here we go. And I’m a daughter, a sister, a stepsister, everything that most people tend to be, and I’m someone who really cares a lot about people, I wear my heart on my sleeve, which sometimes gets me in trouble and is a factor in why I get depressed.

And I’m not good at describing myself because I don’t usually like to draw attention to myself, but I would like to think I’m funny, pretty smart. I like to read. I’m an animal lover. I do everything for other people but rarely for myself. And I’m gonna have to start learning for myself, make myself a priority, because I don’t know how to do that. I’m an introvert, I can spend so much time alone, I could go into my room when I was younger and spend hours by myself, reading or whatever. I never needed somebody around. I’m still like that. I’ve been living on my own for about 10 years now. At the same time, when I need to be around people, I need it right then. Sometimes they’re not always available, and sometimes that gets me down, too.

I guess I’ll go with how other people describe me. Those people say I’m beautiful and smart and caring and care about kids and empathetic and sympathetic and would give anybody the shirt off my back if I needed to. And I just don’t like to draw attention to myself, which is hard because at 5-10, it’s hard to hide. So I learned to start crouching, hiding myself, I didn’t want people to notice me, not realizing that 5-10 is a gift. That’s kind of where it all started. I like to think I’m someone people can come to. I didn’t realize I needed to go to people.

How old are you?

I will be 34 in April.

How has the past week gone, and how did it get started?

Well, very emotional. A lot of crying, but also a lot of happiness, which is a word I have a hard time using. I discovered I wasn’t happy. I think three things made this happen. One of them, I will be vague, but it was a man I dated in January. I could tell he had issues, too. I decided to ignore those issues. Maybe being with me would help him. It turns out that he decided he couldn’t do it anymore. He unfortunately had had marriages end because of infidelity. He’s been overseas with the military, so probably there are some issues there. I don’t talk to him anymore, so I’m not sure it’s ethical to speak of that. He ended it with me, so I started wallowing: “I don’t want to get out of bed, why me, why am I being rejected again?” It’s something that’s been going on my whole dating life. I’ve been rejected a lot. I discovered I’ve been finding the wrong guys, I’ve been dating those wounded guys and trying to make them happy, but I’m not happy myself.

My sister, I love her to death, she’s 26, one of those people who can just let things go. If it bothers her, she doesn’t show it. I have no idea how she does it. She came over last weekend, and I was in my pajamas, wallowing and upset. At first she was like, “OK, I’ll accept it,” then she was like, “Look, you’ve got to stop being unhappy. You’re never going to be happy with someone if you’re not happy with yourself.” I remember thinking, “Do you think I like being like this? I wake up and think, ‘OK, I’ll be depressed today?'” She laughed, and I started thinking, “What makes me happy?” I couldn’t think of one thing. I’m 33, I’ve got a great life, but I couldn’t think of one thing that makes me happy. I started sobbing, then I realized that I don’t allow myself to be happy because I feel I don’t deserve it because of what I did to myself and my family eight years ago. And I said, “I can’t do this anymore. I need to be open about what I did.”

The third one was really how I found your website, Attemptsurvivors.com. I liked the TED Talk on Facebook, the one JD Schramm posted. I was watching and, oh my gosh, this guy had all these successes in life and admitted he tried to kill himself. And I was like, “Thank you!” I was like, “Maybe that’s what I need to do, admit that I’m ashamed and embarrassed of what I did and look for ways to make it better.” At the same time, I’m tired of hiding behind it. And it’s been, like, a weight has been lifted off my shoulders, honestly.

I went to my dad and my stepmom. I talked to them: “This is how I’m feeling.” They listened and were very supportive and said whatever has to be done so I find happiness. They knew I was upset a lot, was still depressed, but they didn’t now how to bring it up. And I went to my principal and said, “Look, this is what I plan on doing, there’s a possibility of it getting out publicly, and if so, I have to do something about it, because I teach kids.” Also I told him, “I’m going to start doing this, I want to be an advocate, speak out in the mental health community. I want people to know it’s a problem.” And everybody I talked to so far said, “I’ve got your back,” and then they said, “Yeah, my friend is bipolar” or “Yeah, I know somebody.” People just don’t talk about it because they’re uncomfortable.

How will you do this?

That’s the good question. That’s what I’ll have to find out. This is my first interview. A good way to get started. I looked into getting training with ASIST in Seattle. I’ve been looking at NAMI websites on how to get involved. I’ve been on the AFSP website, they have the Out of the Darkness walks, they have one in Seattle, maybe I could sign up for that and get people for that. I could advocate in my state, get public policy going for people with mental health issues. I’ve been on the Waking Up Alive website and talked with Sabrina. She emailed me back saying, “That’s so great, here’s how you go about it, just take classes and be knowledgeable, and if you want to help people, you have to have that training.” She also said, “You have to be into your recovery process because this will trigger emotions.” She was really helpful. And I’m talking to spiritual leaders. I have a weird relationship with God. There’s times I’m totally religious, yeah, and there’s times I want nothing to do with religion and God and spirituality, and maybe it’s time to start fixing that. I want to look into a new relationship with God. I’m seeking grace and atonement, and maybe I need that from God, too. I’m looking into all these possibilities. I’m trying to find some way to get my voice heard.

What has been your experience with recovery?

Well, it’s been eight years, actually this week, and I thought I was fine. I thought, “OK, I’m out of the hospital now, I’m going to start some heavy therapy, meds, life is good, I’m alive.” I spent the rest of my 20s thinking life is good, but I kept trying to fill a void. I was filling this void, I was trying to be happy, but I was doing things that actually were not making me happy. I thought, “OK, if I can get into a great relationship and get married, I’ll be happy.” Well, that’s not true. I got in the habit of dating guys with issues like me, wounded. I was going through this cycle of constantly finding these guys. I went through a process of buying stuff. I went through bankruptcy because of it. I was buying material items. I got that under control. I’m doing well financially. I’ve decided to take myself out of the dating pool and strictly focus on me because I don’t think maybe I am completely recovered. This last week, I discovered I don’t like who I am. I’ve been telling people I’m ashamed and embarrassed. I haven’t asked for forgiveness from anybody, hiding behind what I did in hopes it would go away, maybe it didn’t actually happen. What I really need to do is address this act.

So to answer, no. I don’t think I’m fully recovered. I never did it again, I won’t do it again. I continue to see counselors, take meds, but every couple of months I get into some times when I get really down, and I know it won’t last, but at that moment in time, my brain is telling me, “I don’t think it will get better and I don’t know how to be fine,” and I think, “What if I decide to do it again? I don’t know what I’ll do.” My parents and sister said their first thought when I get down is, “Oh no, will we get a phone call again?”  I decided I need to start addressing it and talking about my experience. Luckily, I now recognize the triggers that get me down.

Did they know when it happened?

Yes, the only people that knew were my mom, my stepmom, my sister, my dad, just very immediate family members. And I had two friends that knew. I work at a really wonderful school, it’s like a second family there, I’ve been there seven years, very supportive, caring. They know I have anxiety issues, I can get depressed, but they don’t know my past. I’m ready to start telling them, I guess.

My parents knew. They were there. I have some fuzzy memories of that week: ” You guys didn’t visit me at the hospital,” and my dad’s like, “No that’s not true. I distinctly remember talking to a doctor who was saying, ‘Should we put her on a liver transplant list? How do we know she won’t do it again?'” Instead, I was put on an experimental liver program to clean out my liver and kidneys. The only person I remember being there was my mom. I never asked her how she felt. The other night, she came over, and I was explaining what I’m doing. She looked at me and said, “Alexis, I forgave you a long time ago. You’re my daughter. I was upset and angry, but you’re my daughter.” I was like, “Wow, she forgave me.” I was kind of stunned.

Since then, you’ve talked to other family?

Yeah, my dad and stepmom said they had never forgotten about it but forgave me. The reason they swept it under the rug is because they thought I had. So they never brought it up. My uncle and aunt were very supportive. I went to them and said, “I have issues,” and they said, “Yeah, we’re praying for you.” I honestly can’t remember who knew aside from my immediate family and a couple of friends. Other than that, I’m gonna have to feel it out and see.

You mentioned feeling embarrassed and that you have to atone for what you did. Why? If it’s a health issue …

Well, I don’t like upsetting people, and I do understand that it is a health issue, but I feel that I should’ve been able to make a better choice and instead, I gave up. I very rarely give up on anything or anyone, and I gave up on myself, which is not the human spirit. I allowed my disease to take over, and I succumbed. I lost my pride. That’s where the embarrassment comes from. My cousin died of cancer two years ago, and he never stopped fighting, and he never gave up his will to live. How come I couldn’t do that? Waking up and being alive and continuing to live and make improvements should’ve made up for the embarrassment and shame, but it didn’t. Now, I’m admitting I’m not always strong, I am human, I make mistakes, and now I want to come out from that and let others know that hiding only makes the inner pain worse. Maybe the human spirit is also being strong enough to say, “I’m not as strong as I thought.”  I’m not sure if any of that makes sense.

Do you still live in the same community, the same location?

Yes.

What kind of response do you expect to get in the community?

I would hope it would be positive. One thing that really bothers me is that the media portrays people with mental health issues like we’re crazy and unstable and violent, we snap and go shoot up schools and all this stuff, and every time I read the comments and see what the media does, it makes me so upset. They’re lumping us into a category that’s completely not true. Unfortunately, with social media our lives are everywhere, and there are going to be some negative responses … But the majority, I think, will be supportive, will say, “Hey, that’s brave of you” and start telling their own stories, “Hey, sometimes I get really down” or “Hey, I have a mom or grandpa,” and the stories will come out because finally someone says something. I guess time will just tell. It’s not like I’m going to go on Facebook and say, “Hey, everybody, guess what I did eight years ago?” Some parents of my kids are on my friends list. I’m starting very slow, with my inner circle, and I hope to branch out from there.

What steps are needed to really open this door?

I liken it to the fact that the civil rights movement, how long that took for Martin Luther King and Rosa Parks and all of those great people that finally got the discussion going about civil rights. And I think about how in the ’80s with AIDS and how long it took to get the word out and prevention and those living with HIV or AIDS are not bad people. And you think how long it’s taken all these issues. Honestly, something like this is not gonna happen tomorrow. Like with the media, they badmouth it so much and portray it in a light that’s not fair. The stigma and taboo that go along with it: “I don’t want to say anything until someone else comes out and has the courage to say it.” Maybe that was the issue for the past eight years. I didn’t want to be called crazy and have people think I was violent or something. And I’ve been called crazy, for real, and it hurts. Even when people are joking and don’t know my past, I kind of laugh but think, “No, I’m really not. I have a disease. You can’t see it, but it’s still there, and I deserve to get as much help as someone with cancer or other horrible disease.”

I don’t know. That’s why the only thing I can do is reach out and get myself out there. I hope people will say, “Wow, I can’t believe you’ve been suffering for that long and didn’t say anything.”

What been useful in your treatment, and what hasn’t been useful and should be changed?

I was diagnosed when I was 19. I had my first panic attack. I thought I was having a heart attack. I went to my regular primary care doctor, and she was like, “OK, we’ll put you on pills” or whatever it was. Then it was like, “OK, see you later.” She didn’t say counseling or anything. I went on this medicine, things were fine, but as I was getting into my 20s, the pressures of life honed in on me. I graduated college, tried to find a job, my parents divorced, and I decided, “OK, maybe I need to seek out counseling, too.” I’ve been through many different counselors, I’ve been through many psychiatrists who say, “OK, maybe we up your dosage or reduce it or put you on another one.” And I say, “OK, you guys are the experts” and I go with it.

I think it’s good to have that there, to have someone to talk to, but I think they need to be on the same page. Some just let me talk but give no suggestions. The one I have, she’s very good, she lets me talk but gives me suggestions. Journaling, exercise. She wants me to get better. Apparently, she didn’t know what I tried to do, and I told her the other day. I started telling her what I want to do and she said, “That’s great, we need more people like you to start talking, and helping,”

But to answer your question, yes, the drugs have helped. I don’t get the horrible panic attacks. I don’t get into as deep, dark holes I don’t think I can climb out, like eight years ago. I know there’s a light at the end of the tunnel. The one thing that doesn’t help is the friends who say, “You know, happiness is a choice. You just have to choose happy.” I would give anything, I’d give everything I have if I could just choose to be happy and let it all go, but I can’t.

There’s just no money out there for those programs. To get appointments even with my counselor, it’s just weeks out. That’s how busy they are. I couldn’t find support groups in my area for after suicide attempts. I would have absolutely no idea how to start a group. One thing my principal suggested, I guess there’s a program called Celebrate Recovery, like a church-based 12-step program, basically like AA but for anybody who feels they need to recover from something, just anything. I said, “That’s great, how come they don’t put it out there more? It’s free, with churches. There’s just nothing out there to advertise it. Plus, you have politicians who say, “Cut funding for health care, cut veterans benefits.” They think if you get rid of it, it just goes away, but it’s just making it worse.

Oh, I just thought of something. Other things that help is just knowing people care. When I do finally start talking to people, say, “Hey, I’m having issues,” I have people who say, “Hey, if you ever have to talk” … I put on Facebook that I was having issues, and a colleague messaged me out of the blue and said, “Hey, I’m here.” And I said, “Yes, I’d like to talk. You’re taking time out of your life to help me?” It just felt really good to see people care. I’m really hard at accepting help: “No, I don’t want to bother you, I can take care of myself,” but maybe they’re offering because they really do care. I’m starting to realize that now. My dad, my principal, say, “If you need to talk, come talk to us, please!” And that is very comforting.

I’ve always been that person: “I you ever need to talk, please call on me.” We live in a world where people just want to think they can take of things by themselves. That’s how I am. They don’t want to look helpless, I guess. They want to look like, “Hey, I’m strong.” But when it comes right down to it, everybody, some of us are just dying inside and putting on a happy face. If we knew people cared, maybe people would start talking.

I think about bullying, being an elementary school teacher, bullying is such a huge deal. They’re projecting what they don’t like about themselves in an effort to make themselves feel better, not realizing they’re hurting the person they’re bullying, like a vicious cycle.

Do you ever see anything in your students, issues that concern you?

Yes. I can’t go into too much detail, but I have students who don’t get any support at home, don’t get nurturing, and they get attention anywhere they can get it, any attention is good. I think about those kids as they get older, what will they do, will it be good or bad? I have kids who already suffer from anxiety, and wow, they’re already suffering from anxiety from the pressures of life, to perform, and I feel for them because I know exactly where they’re coming from. I just let them know I’m here. Being the child of divorced parents, I say, “Hey, I’m here for you.” Most probably won’t take me up on it, but just being able to tell them they know somebody who really cares about it …

With your other issues, is 5th grade the place to connect?

Unfortunately not. Even though I am their teacher, I still … And I know it’s out there, I was doing some statistics-searching and it’s the third leading cause of death from 10- to 24-year olds, and I was stunned by that. That a fifth grader would think about that. But I don’t think it’s my place to talk about that unless I got permission from my parents. I think it’s more likely in junior high and high school. But as a teacher in 5th grade, I would feel uncomfortable because I don’t know what I could say, liability issues involved. That’s why we have counselors, school psychologists and, to be honest, why we have parents. We live in a society where everything’s out there. Parents really need to have that dialogue with their kids. I can honestly tell you I know of students at my school who unfortunately suffered the loss of parents because of suicide. And I could never say anything to them because I don’t know how they’d react. I mean, divorce is fine because everybody knows about it. But there are still some things these days we can’t touch upon. Maybe in 5,10 years that will change. Eventually the dialogue maybe needs to be there. Just not right now.

What will you do for yourself? To change?

Actually … Gosh. I don’t know how to go about that. I spent most of my life taking care of others, helping others. I have to figure out what makes me happy. Teaching makes me feel good, being around kids, laughing. Feeling successful makes me happy, but those are all fleeting moments. I’m not sure how to do “happy.” I think if maybe I get my story out, someone will say, “Hey, I heard your story and I decided not to go along with my plan. I’m going to try and get help.” In a way, I guess, that could make me happy.

I like being there for other people. But for myself, I just need to learn to be selfish. To me, selfish is a bad thing. I need to start taking care of myself, exercising … Gosh, I don’t know. I just need to stop being afraid. There are times I don’t like going out in public because I’m afraid if they’re looking at me, judging me. I have to say, “Hey, they look at you and then they’re gone.” That’s what I think this journey is. I need to find that inner peace and go to bed and say I’m happy. And I can wake up and say, “I’m good, this is who I am, and I’m dealing with it the best I can and helping others in the process.” I need to be able to be content with that. I have my support group. I’m not sure how to get there. Maybe a better relationship with God. Maybe recognize the warning signs that get me depressed and get away from that situation. That’s a loaded question. But I do know just in the past week I’ve felt better than I’ve probably felt in a really, really long time, and that’s the first step.

Where I was eight years ago and where I am now, it’s a complete improvement. Back then, I was in a dark hole. I really felt just there was no way out. If I took myself out of the equation, the world would be a better place. I had all these issues going on in my head. It just mushroomed. I didn’t plan it. I know a lot of people do. I didn’t. I snapped. I remember driving home sobbing, thinking, “Please, a car just take me out, something.” I remember swallowing Tylenol by the handful and thinking, “OK, it’ll be done.” But now I can say, “Yeah, I’m much more content than I was.” But I know I still have a long road, and I know I will never, ever do that again because I know I can pick up my phone and talk to somebody, and I know now in the past week that people will say, “Great, let’s talk.” And I thought eight years ago nobody gave a darn. And I know now it’s wrong. I just wasn’t willing to ask for help. And now I’m willing to ask.

I’m sitting here looking at my apartment. I have pets now. After my attempt, I got a cat and thought, “OK, that’ll help.” And that was the greatest thing I’d ever done. Then I got more. They are therapy, too. They need me like I need them. I started improving my job, getting better as a teacher, and now I’m an awesome teacher. Everything is good, and now there’s this one thing I have to do. I have to say, “I’m Alexis, I suffer from depression, I tried to take my own life and, you know what, it’s going to be OK because now I’m willing to admit it. And if you need to talk, I’m here for you.”

Who else are you?

I feel that I am somebody whose journey is just beginning. I’m gonna be 34 in April, and I thought my life started when I graduated from college and got my first teaching job. It turns out that’s a great part of my life. I can look in the mirror and say “Wow, you’ve made it,” but maybe my life is starting right now. I’ve questioned that a lot, asked, “What is my purpose in this world?” I thought it was to be a teacher, and it is, or half of it is, and maybe the other half is I need to help other people like me, and maybe this sounds like a cliche, but changing the world in some small way. Everybody changes the world in some way, either they do it quietly or with a lot of show. Maybe I’m just finally realizing what I’m going to do with the rest of my life. And maybe it’s not what i thought it would be, but that’s OK.

Maybe in another year I can give another answer to this question, a better answer, but now it’s completely new and scary, and there will be times I will ask, “Why did I decide to do this?” but at the end of the day, I’ll say, “OK, this is me and I’m doing the right thing.” But you know what, I don’t want to be that person who gets down by that and retreat into myself. I know now there are places and people I can talk to and be more open. So yeah, it’s a hard question to answer. I think I’m gonna be … I’m gonna be different. I’m gonna be a new Alexis, and now I have renewed hope and faith for the future.  Yeah.”

Talking with Sandra Kiume Dawson

The Canadian activist who tweets at @unsuicide has built a peerless guide to the online world of crisis response, and she’s done it on her own time with zero budget. Here, Sandra Kiume Dawson discusses suicide hoaxes, what Twitter does wrong, the need for transparency, why hotlines are outdated, and how to walk the oh-so-careful law enforcement line between tracking people down for help and scaring them away.

Sandra also makes a special note about why trained peers like herself are crucial online. “We’ve seen the darkness, and it can’t get any darker,” she says. “I’m not afraid of it. I can hold someone’s hand and guide them out of it. And I think there should be more safe spaces like that.”

Who are you?

My name is Sandra Kiume Dawson. I’m a suicide attempt survivor, living with bipolar and other conditions since I was 7. I’ve had multiple attempts. Through treatment and self-education, I’ve learned a lot about suicide prevention, both from the standpoint of suicidology but also from more grassroots efforts. I have a part-time job as a mental health blogger at PsychCentral that helps ensure I keep current with mental health news.

Suicide is not the only topic, but I often write about it. I also have a wiki, Online Suicide Help, which is a directory specializing in e-mental health services, crisis IM chat services, social media supports, peer support forums and more. There’s quite a lot out there and more all the time. I’ve collected these resources into one place so people can find them easily. Another thing I do, I’ve been on Twitter since 2009 as @unsuicide, a peer support suicide prevention account. I’m not a trained counselor, but since I have lived experience and a lot of knowledge of the mental health systems, I can help people navigate both online and off to find supports.

A typical conversation with someone on Twitter is something like, “I have a plan to kill myself.” I’ll say, “Do you want to go to the hospital?” “No.” “Do you want to call a hotline?” “No, I don’t want that. I’m afraid the police will come knocking at my door.”

Or, “I have anxiety; I don’t want to talk on the phone.” That’s where online services are helpful: texting or IM chat services. It’s great to see more and more available. But I also refer people to peer support, because often people are more interested in peer support than professional help, or they want both. People want to know others really understand them; they can talk to someone who’s been where they are and have recovered. That provides a lot of hope, makes people less alone. Feeling suicidal is a very isolating experience, and so anything that makes you feel less alone is helpful.

Where did you come up with the term “unsuicide”?

I thought it was catchy and reflected my goal of people proactively preventing their own deaths. Unsuicide as the opposite of suicide.

When did you start pulling all these resources together?

I started on Twitter in 2009, and created the Online Suicide Help directory in 2011. I had already been bookmarking resources for over a decade.

Do you have everything?

No. I don’t pretend to be completely comprehensive. I’m continually searching for more, and asking people to share links. And there are always more services coming on board, especially with crisis chats.

Do you have measurements of users, traffic, etc.?

I do keep track. I get about 6,000 hits a month and have 15,000 Twitter followers.

Who comes to you?

With the wiki, it’s really worldwide. I’ve had visitors from 158 countries. The tragic thing about that is that while I’m aware of the worldwide need for online services, they’re not always able to access services because of geoblocking – restricting services to one country or even a single town. There’s a huge need to create an international network so people in, say, Mongolia or Malaysia or Ecuador or, you know, any country that doesn’t have the money to start their own services, can access help. People are desperately searching, and it’s devastating when they find there is a service but it intentionally won’t serve them.

Do you get paid at all, and how much time does this take?

No. I don’t get paid for this at all. How much time is really variable. I will check usually every day to answer tweets, share links. I would guess an average of maybe an hour a day, two. If someone contacts me to talk, it can take more time.

What has been the response from organizations you reach out to?

The IASP at least wrote me back. A lot of organizations don’t. I’ve tried writing to organizations that completely ignored me, like the Samaritans in the UK. It’s been frustrating because I don’t have a Ph.D, I’m not a suicidologist, am not employed by an organization and I don’t have credentials. And because of that, I think they’re not willing to engage with me.

You mention that you’ve had the experience?

Yes. It doesn’t make a difference. There have only been a handful of organizations that have taken me seriously. Crisis Chat is one, in the US.

A big exception happened recently with a petition I started to ask the American Foundation for Suicide Prevention to change the language of “survivors of suicide” to “survivors of suicide loss” or “the bereaved” in their events and literature. Once it reached 100 signatures, I contacted the CEO, Robert Gebbia, and he was very responsive and respectful and agreed that the language needed to change. I look forward to that happening soon.

What more would you like to see?

An organization that involves and includes users, by which I mean Internet users and app users who are also mental health service users. I see sometimes that organizations will engage stakeholders and say, “Oh, we’ll bring in a couple of people with lived experience and see what they think, or do a focus group,” but those consultants are not always on social media and seeing what triggers people in that realm. It’s people who don’t necessarily know the online landscape. Without mentioning an organization, I saw this just recently and it was really discouraging. I think people with lived experience who are brought on board need to have certain qualifications. Not academic, but the right experience.

In terms of diagnosis? Or what they lived through?

What they lived through, and what type of services they’ve engaged with in the past.

Have they used online services, do they know what they’re like, the barriers involved?

Just pulling someone out of the hospital randomly doesn’t mean they know how a crisis chat operates, or what kind of supports are on Twitter or Reddit, or the pros and cons of texting vs. IM chat.

Do you have a roll call of favorite resources?

Yes. There’s a service called Youthspace.ca for Canadian youth under age 30, which is actually problematic as a lot of online and texting services are just for youth and adults are often left out. They’re a great site, with texting, chat, a forum and trained counselors. IM Alive is now available 24/7, which is fantastic, and I’m also fond of Crisis Chat. But both those services are for Americans only. I wish I could recommend a peer support service, but I only know a few services that aren’t specifically for suicide. Real-time, peer-led suicide prevention intervention online almost does not exist! There’s one tiny service in the UK, but that’s all I’ve found beyond social media, and those people are lacking organization, training and support. There’s such a need for this. The professional peer support specialist community has not seemed to recognize this need yet, or has not acted on it. Professionalized peer support is only available offline.

How much do you think traditional nervousness around suicidal thinking affects not innovating?

I think it causes a rift because traditional services are hesitant to bring lived experience on board. I think in America it tends to be even more split: peer-led groups tend to be doing their own thing, as often they have a history of antipsychiatry activism. And possibly for that reason, the peer-led organizations – I don’t know, I’m just guessing here – but they’re maybe not privy to the same research that other suicide prevention organizations have access to. So maybe they’re not as up with changes in technology and demographic trends. I’ve noticed, too, that not only have I had trouble engaging with the traditional organizations, I’ve had even more trouble getting cooperation from peer-led organizations. There’s a schism that they’re suspicious of anything to do with psychiatry, and they want to do things their own way, and if you’re working within or advocating the medical model at all, you’re suspect. At least, I’ve been shunned before for that reason.

So that’s why I’m kind of doing things on my own here, you know? It’s frustrating. But if suicidologists don’t want to work with me and peer support activists don’t want to work with me, it hasn’t stopped me from doing a lot on my own.

But you’re on a national consumer group in Canada, right?

I’m a member of the Mental Health Commission of Canada Advisory Council. It’s not a consumer group, but I’m one of three members with lived experience on the council. It’s really exciting because I’m now included in high-level strategic discussions for national mental health policy. People with lived experience are not often involved at that level.

How did you come across each other?

I was already on their e-list. They put out a call, and I was one of almost 200 applicants.

Again, are you being paid?

For the advisory council, I receive a per diem plus travel expenses, yes. For the work I do on my own, no. I can’t expect to be paid for something that’s my own initiative. But I don’t mind, I can do a lot on my own. I went to an e-mental health conference last winter and showed a researcher my wiki, and she was just amazed I had a budget of zero. They spend millions to create a website, and to me, that’s such a waste of money. I can make a
site for nothing. So I did.

Where else would you like to take this?

I’d like to see what I’m doing expand into an international network with the cooperation of Twitter, as well as law enforcement. That’s beginning to happen now, but I’d like to see more peer involvement in the design and operation. When people have already announced they’ve ODed, they need immediate medical attention, and there’s no way to get them care if you can’t track their IP, which only law enforcement can. It’s really frustrating when people leave suicide notes and you can’t do anything else. Twitter is not helpful, all they do is send an automated DM telling the user to call a hotline. A new approach involves cooperation with social media companies, law enforcement and professionals who do counseling online. But it’s also critical to have peer support and lived experience advocacy in that equation. I see a lot of people afraid to talk to nurses and doctors, and even more afraid to talk to police. Peers have empathy, they’re not as scary, they understand and they can have intervention skills training. The right person with the right training and experience can be even more effective as a crisis counselor than someone who doesn’t have that lived experience.

What’s the ideal way to involve cops?

I think there needs to be rational discussions between people with lived experience and the police to see what those boundaries are. For example, many people don’t know the difference between self-harm and a suicidal act. They see a tweet “I just cut myself” and see that as a suicidal act, and if they brought in police to knock on the person’s door, it would be inappropriate. To have that knowledge, to know when intervention is warranted, is vital. Otherwise, you just scare people off, and they don’t trust you anymore. Phone hotlines have this problem, they have a reputation as being untrustworthy because they call police, and it’s a big part of the reason people I talk to refuse to call a hotline. It’s hard to know when to make that call.

Are online crisis services more transparent about their policies about contacting police?

Some are, but generally not that I’ve seen, no.

How do you work with law enforcement?

I’ve only called police a few times since 2009. I don’t involve police unless an attempt has already taken place and the person is unresponsive. One was an example of someone who left a suicide note and left enough clues on their timeline that I was able to figure out where the person lived. I called police, they checked it out, and it turned out to be a hoax. It’s surprisingly common. Another time, a girl, a teenager I had been talking to for over a month, was really depressed. She was saying how she was going to kill herself on her birthday. It was coming in three weeks, two weeks, one. I kept trying to get her to go to a school counselor, any kind of option, but she was not willing to do anything. She just kept coming back at me with, “I’m going to kill myself on my birthday.” When the day arrived, she left a suicide note on her timeline. That was it. I called police. They tracked her down at her school, and she was super mad at me. She deleted her Twitter account, and I never heard from her again.

She was OK?

She was alive.

Did law enforcement get back to you?

No. But she had made so many threats repeatedly, and she was so unresponsive that I felt involving police to get her to help was warranted. There was a similar incident with another girl but not enough clues about location, and when I phoned police, they said no, because it’s on the internet they can’t do anything. They brushed it off. That’s been a barrier to working with police. Unless they know an exact street address, they don’t respond. They don’t have access to Twitter’s user data. Fortunately, that’s changing now with the new Real Time Crisis service.

Why are suicide hoaxes surprisingly common? Why would someone do it?

I can only guess, as I’ve not read any research on the topic. But basically, it’s for attention, it’s to gain more followers or specific followers and get sympathetic messages encouraging them to live.

“Celebrity blackmail” is one very common reason behind a suicide hoax, especially among youth, but I’ve seen it happen with fans and stalkers of any age. The person will send a tweet to a celeb saying, “If you don’t talk to me/follow back/RT me, I’ll kill myself,” and it’s purely to gain the attention of their idol.

Another category of hoaxes comes from people who are genuinely disturbed, trying to gain attention for a personal issue in which they’ve felt silenced. They may tweet repeatedly to mass media accounts as well as anyone who will listen about being victimized by something, and sometimes make suicide threats.

I think someone who creates a hoax does have issues to look at, it’s not something a healthy person does just for fun.

You say Twitter isn’t responsive. Is that the same for other social media companies?

They all have different policies.

How hard would it be for them to make the changes you’d like to see?

It’s a technical issue, isn’t it? On one hand, you don’t want just anyone to say, “Oh my friend says she doesn’t like her life,” and send the police. That would not be a good approach. But if it’s a matter of, there’s a safety team already online and doing outreach and identifying when there’s a real, bona fide crisis and there’s a life in danger, an attempt has happened and a person needs immediate medical care, that’s where I would like to see Twitter and other services working with police and peers. And it’s coming, slowly.

What are the risks involved?

Of service users becoming less trusting of people like me. Right now, people trust me because I’m one of them, I have empathy and I’m not a police officer or a doctor. I don’t want people being afraid to contact me. Transparency is really important. One problem with hotlines is people being afraid of police being dispatched. Some hotlines have different policies. Some will send police and some have confidentiality policies. It would be better to know up front, because people have been quite traumatized by police showing up at their door unexpectedly.

Have you reached out to crisis lines on that issue?

No.

Here’s a question I’ve had a lot: What is a good suicide forum online?

It depends on the kind of support you want. I have close to 100 mental health forums linked in my wiki. Specifically for suicide, there are a couple I don’t recommend, but Suicide Forum is a good one. I also like PsychCentral’s forum, it’s a major one, but it’s not for suicide talk. It’s good for issues of depression or anxiety. You can dance around it, but you can’t mention suicide.

Why tiptoe around the subject in forums like that?

I wish they didn’t! It’s because of the fear of triggering, but where do you go if you can’t talk to peers, right? That’s why projects sometimes turn up on their own with their own rules. And that’s where my Twitter service comes in. People can say anything they want to me. I don’t get triggered. I think those who’ve had attempts are less afraid of talking about it. We’ve seen the darkness, and it can’t get any darker. I’m not afraid of it. I can hold someone’s hand and guide them out of it. And I think there should be more safe spaces like that. I guess that’s what hotlines are for, but they’re so outmoded, and they’re not peer services.

One thing I’d like to see, if we’re talking about alternatives: safe places to go and talk about suicidal feelings without the risk of being forcibly taken to the hospital. 24/7 crisis respite services with peer support and clinicians where people are free to talk about their feelings and not afraid of being institutionalized, even though that fear is often based on stigmatizing old stereotypes and not the reality of modern hospitals. It would be good to see that concept online as well. If you’re going to build a peer crisis service, with warmlines, etc., why not make them online services as well? Demand is there.

I’m not afraid of hospitals myself, and am not anti-psychiatry. Medication works very well for me, and I’ve been in hospital many times without any abuse. It kept me safe and saved my life. But I recognize that there are a significant number of service users who are afraid of hospitals or who had bad experiences and don’t want to go back. They should have an alternative.

How do you protect and take care of yourself when working with people in crisis?

For one thing, when I hear some of the negative things commonly expressed, I can recognize them as symptoms of depression, bipolar, whatever the person is dealing with.

A lot of people I talk to have borderline personality disorder, for example, which I used to have but recovered from. So I know the symptoms. When someone says a statement I recognize, I encourage perspective and insight.

I’m also very good at self-care and managing my moods and reactions to triggers, and when I feel fragile I simply don’t log into @unsuicide. I take a break from it for as long as I need to. I have the flexibility and knowledge to do that.

How did you get better?

It wasn’t simple. It was a multi-stage process. Finding the right medication combination and adjusting when needed, with the help of my doctor, was essential, but that’s not the whole answer. Lifestyle changes were critical: regulating my sleep cycle, getting fresh air and sun, lots of nature. Parks and trees are good for me. Moving to a quiet community that was a less stressful environment was helpful. Whatever I can do to lower stress is good. I also went through both CBT and DBT therapy, which were very helpful. I practice gratitude, and really like mindfulness meditation. I have a lot of apps as well. My mental health toolkit is a formidable arsenal. And last but definitely not least, love and support from my wife has been amazing and so helpful to my stability.

Where are you today?

In a pretty stable place. I still have occasional episodes. I can still get triggered, but I’m careful about self-care and pulling back from things when I’m feeling vulnerable. I’m not on @unsuicide every day if I’m in a low mood. If I’m just feeling kind of jaded about things, not feeling very supportive, I’ll just say, “I need some self-care, I’ll be offline today.” People understand. I leave the link to the wiki: “Here are others who can help you.”

Who else are you?

I do jewelry design as a hobby, and I don’t know, I’ve been many things in my life. I’m an Air Force brat, I grew up all over the place. Then I lost and gained a lot of different jobs, so I can’t say, “I’m a (blank)” because I didn’t have one career. There was so much chaos. In the last 10 years or so, since going on disability, things have calmed down.

I’m a mental health advocate, though I don’t like that phrase so much because it’s so vague. I’ve been on the board of a mental health housing nonprofit society, I’ve worked for a homelessness and mental health research project and I have a part time job at PsychCentral. Never just one thing.

Anything else to add?

I see so much peer support available online in forums and chat rooms, but I see damaging advice being given, flame wars sometimes. And I think there’s a real need for people giving peer support to have some skills training, and I don’t know how that could happen in an unmoderated internet. On one hand, you have certified peer support specialists working one-on-one with people offline. On another hand, you have millions of informal peer supporters online, but those people have no training at all, and sometimes they’re giving really bad advice. They don’t have an ethics background, or trauma-informed care skills, and they often can be triggering to people. I just wish those certified peer specialists would merge with the informal peer support. Set up a free mass training system for mental health literacy and intervention skills, a free webinar, or a site where you can get a mini-certificate. If peer specialist trainers set it up, that would be the most logical thing to do. But right now, I basically see them ignoring the internet and not integrating it into their work. They’ve got to get over that. Mental health professionals are now routinely offering e-mental health services, and it’s time professional peer support specialists were doing it as well.