Talking with Christa Scalies

Christa Scalies recently sent me a box of kazoos. After losing two good friends to suicide, she has embraced her project, Giggle On, which uses humor and yoga to loosen people up for talk about stress, mental health and suicide prevention. Aside from being a survivor of suicide loss, she spent time being suicidal herself as a young woman.

“When nothing else works, when life gets nasty bad, laughter is often all we’ve got to help us feel like we’re in control of an otherwise out-of-control situation,” she says during a lively conversation spiced with her Italian, Philly background. “What else are you gonna do?”

Here, she talks about everything from consulting a medium and a shaman, to Darth Vader breath and “laughter selfies,” to the need for suicide prevention people to break away from the echo chamber and engage the world at large.

Who are you? Please introduce yourself.

Oh, is it going to be like that, is it? (Laughs.) Well, my name is Christa, I was raised in the Philadelphia area, I’m one of five kids in a big Italian family. I’m pretty comfortable telling my story, but I’m concerned about getting into specifics or naming names within my own family. I want to be authentic while not making people uncomfortable. … I can safely say there’s a family history of mood disorders. … I currently live in Wilmington, Delaware. I’ve been here 14 years and am trying to escape. I tell people Delaware is like the mafia: “I keep trying to get out, but they pull me back in.” (Laughs.)

I’ve always been a serious person, so the fact that I have a website dedicated to laughter makes some people laugh. Without the laughter, my serious nature would take over completely, so I’m grateful for my ability to giggle. Ever since I was a little kid, I had imaginary friends, I read a lot, I was very “precocious,” as the adults would often say in my presence. Our family moved from the northern Philadelphia suburbs to the western Philadelphia suburbs when I was about 7 years old, and my life was turned upside down. In retrospect, the move, the change and the manifestations of issues at home started me on the road to being depressed as a young person, very young, but I didn’t realize it at the time.

I own another business that’s unrelated, receivables, and I used to be a chef in Philadelphia, so I can collect debt from people and make you an omelet. I found some old diaries yesterday, very interesting for me. I’ve blogged about my feelings and past, but I haven’t actually seen these diaries in years, and it was a little upsetting to read some of it. I spent a solid 20 years in and out of depression and contemplating ending my life. When I tell people that, they say to me, “I don’t understand how someone would want to take their life,” and I say I know what it feels like to not want to be on the planet, to melt away into nothingness. While looking at old journals last night, I was transported back in time, to over 10 years ago. It was hard seeing what I wrote. My level of pain was pretty off the charts. My entry about wanting to disappear brought up memories for sure. One entry from 12 or 13 years ago said something to the effect of wanting to hurt myself, just wanting to not be here anymore. This was a state of mind that was “normal” for me for a long time, and that’s very sad.

I often contemplated ways of how I could end it, and I abused drugs and alcohol as a way to escape reality. And I used to be a cutter. One thing I remember doing more than once was letting go of the steering wheel of my car while driving. I think the thing that stopped me from doing it and brought me back to my senses was the thought, “Don’t take anyone else out with you. Killing yourself is one thing, but don’t take another life, that’s REALLY a no-no.”

It was not until my friend Jim Thompson’s suicide in 2005 that I had a wake-up call. Three days prior to his suicide, I was looking at a building here: “If I jump, will I die on the way down? Do I die right away when I hit the ground? How does all this work?” I remember calling my psychiatrist at the time, and I said, “Doc, I’m thinking this is not the right train of thought.” I was on medication at the time, one or two anti-depressants, but I can’t even remember what they were now and stopped taking all medication that same year. Three days later, my friend died, shot himself in the head in the foyer of his Wilmington home. At that time, immediately after his suicide, my suicidal thinking got worse. The woulda-coulda-shoulda guilt complex took over. The guilt of his death and what I could have done to stop it paralyzed me. I remember having to call people in his black book and tell them he was dead, give away his possessions, meet his father, sister and speak at his funeral. This entire morbid process made me realize I couldn’t do this to my family. I didn’t have that insight right away, it took some time. I knew there was no way I could leave this hurt, this permanent emotional stain with my parents and brothers and sisters. Suicide is just the worst possible thing in the world. I’ve been to a lot of funerals, but losing someone to suicide is like no pain I’ve ever felt in my life. I wouldn’t wish it on my worst enemy. There was the pain of depression, and the pain of losing him to suicide on top of it. It is fair to say this was the worst period in my life.

So I lose my friend to suicide and go on a personal quest to figure out why I’m on the planet, what I’m supposed to do here. I spent a lot of time in self-reflection. I talked to mediums, went back to church, did yoga, self-help this, that and everything, trying to find answers. In the process, I realized there’s no one person who can give you the answer, the only person who can truly figure out you is you. That’s scary and empowering at the same time. So I can’t say I’ve figured it all out yet, but I have figured out I am supposed to help others on this path.

Despite being a suicide prevention advocate and someone who is very happy she didn’t take her own life, I have several belief systems about suicide, and they are contradictory. A human being has a life of their own. If they want to end it, for whatever reason, it is their choice. Who am I to project my desires or perceived outcome about the trajectory of their life on them? Isn’t that my ego talking? Conversely, how many people are in their “right mind” making a decision to die by suicide? Despite the facts presented by suicide experts, none of us will ever really know what goes on inside the mind of each person who takes their life. Sure, we can figure out if they were depressed, if they were addicts, had a life-traumatizing experience based on what we see and observe, but we can never really 100 percent know what’s going on. Let me also add as a person of faith, and a cradle Catholic, I believe it is not up to us to make life-and-death decisions about our own mortality. God brought us in and he should be the one who makes the call about our exit. It is because of my faith and belief that people who take their own lives are not in their right mind, I feel very strongly we, as a society, need to preserve and protect lives, lives of the young, middle-aged and old. Each life is a gift, and despite our perceived or real fault lines, we all have something positive we can offer to ourselves and the world.

I’ve lost two friends to suicide. My one friend, Jim Thompson, I met when I came to Wilmington in the late ’90s. We became friends right away. He had struggled with depression, addiction, had a great sense of humor, and we were thick as thieves, which was wonderful. A week or two prior to his death, I was in his house, helping him clean. He had all this crap in his room. I was putting things into the bedside stand and saw a gun. “What the fuck is this?” I said. “Dude, what’s up with the gun?” He said it was for protection. He also said he woke up every day with a gun to his head wondering whether or not this would be the day he’d end it all. When he told me that at the time, I was in the same state of mind. I thought the best way to respond was, “Dude, that’s fucked up.” I know now, after my ASIST suicide prevention training, that’s not the right answer.

So, flash forward, a week or two later, I was back at his house. He had trouble with trusting women, but I knew I was a woman he trusted. I was back in his house, I go to his bedside stand and see the gun again. I had to make a decision: Do I take it? Unload it? What do I do? My previous boyfriend accidentally shot himself in the hand, so I didn’t want to be anywhere near a handgun, since I saw firsthand the damage it can do. But I knew, looking at this gun, that was it. I knew this gun would be the end of him, but I was frozen. At that moment, I think, I saw his life flash before my eyes. So I shut the door of the drawer, and three days later, he was dead. I remember speaking to an officer outside his home while waiting for the crime scene cleaners to show up. I said to the cop, “It’s all my fault,” and he said, “He would have eventually found a way if he really wanted to do it.”

I don’t care what anybody says. I’ve spoken to quote-unquote “him” via mediums. If he could have a do-over, he’d be on the earth. I tell people thinking about suicide, “Listen, are you sure?” People send me emails, and I give them the caveat that I’m not a therapist or shrink and give them resources for mental health professionals … But as a human being, formerly depressed and suicidal, I will say, “Listen, you can make that decision, but if you have anything left on your bucket list, you won’t be able to do it.” Suicide may take away your physical pain or emotional pain, but it also erases the opportunity to ever do anything fun again. I also share my experiences with people and let them know I KNOW in my heart of hearts my friend Jim Thompson regrets what he’s done. He doesn’t want me to blame myself, but I will carry that burden to the day I die. I miss him terribly, but at the same time, had he not done what he had done, I probably would be dead as well. In his death, I found the gift of my own life. I know this may sound cheesy to some, but it’s my truth.

And one more point about the afterlife. It is my belief we take our emotional baggage with us to the next plane when we go. So, if you have emotional stuff to work out, do it on Earth, because you will take it with you to the other side. At some point you will have to face yourself, your soul, and do the healing work for yourself. Our thoughts are energy, and we’ve all been taught along the way energy cannot be created or destroyed. If these two things are true, then you can bet you’re taking your drama to heaven with you. Personally, I’d rather work out my crap while on Earth so when I get to heaven I can get my wings, chill out and catch up on a lifetime of reading. (Laughs.)

Several weeks after Jim Thompson died, I reached out to a friend in Wilmington who speaks to spirits, or so a mutual friend had claimed. I thought it was crazy nonsense talk, but I was desperate. I said, “Do me a favor. I need to come over and need your help but can’t tell you any details now.” So I went to her home, and she starts doing her thing with a pendulum. Within about a minute, she started to describe my friend physically, and the hair on my arm started to stand up. My friend came through and said to me, “You are fighting yourself, Christa. Don’t do it. It’s not a jail. Let it go. You are what you are, and it is OK. Don’t be afraid, just live, enjoy it for someone who can’t, I copped out.”

Had my friend not come through the medium and told me he made a mistake, I’d be dead. Those are my experiences, I don’t care what anybody tells me or if they believe me or not. That’s what happened in October 2005, and that “session” saved my life.

Flash forward. I went on a grief retreat in Arizona six months after he died and visited a shaman lady named Annie. The trip was transformative for me.

In my experience with grief and depression, I had what yogis call a “monkey mind.” I could not seem to get out of a negative train of thought. My brain was like a hamster stuck in a wheel. Everything was a churning black mess, and I was searching for glimmers of hope.

While at the retreat, Annie said, “I have homework for you, and I’ll be back in two hours.” She took a piece of paper and drew a big circle on it and told me to write down everything I wanted in my life inside the circle. “On the outside,” she said, “I want you to write everything you don’t want, things that no longer serve you.” I looked at her like she was out of her mind, and I am sure I rolled my eyes.

So I thought, “You paid this lady! Do the homework!” So time passes, and I had no idea what to put inside the circle and struggled with the question, “What do you want?” It was like no one ever asked me that question before. Writing down what I didn’t want was a lot easier. On the outside of the circle, I started to write: self-mutilation, depression, suicidal thoughts, sadness, lethargy, confusion, self-hate, extra weight, all these negative things. After I got that out of my system, I thought, “What the hell DO you want? Identify that.” Once everything inside the circle was written down, Annie the shaman and I did this little ceremony and burned the “negative stuff” to energetically release it to the universe. It seemed very weird to me at the time, but I played along thinking to myself, “Do what you need to do to move on.”

Annie’s little circle exercise, simple yet powerful, became the basis for what I call my Big Bold Beautiful life. When I came back to Wilmington, I made a few vision boards of all the positives inside the circle. I hung them in a prominent position in my home and bombarded myself with positive messages. I started looking for pictures of myself in happier times, framing them, to remind myself I did have the capacity to have fun, be happy and enjoy life. I had been giving myself shit talk for so long, what if I turned it on its head? Did the opposite? What if I played the “fake it until you make it” game? So I used myself as an experiment. I took the original circle exercise paper, placed it in a drawer and forgot about it. A year and a half later, I pulled out the paper, and I’m not bullshitting, everything in that circle had manifested. It wasn’t magic fairy dust, I didn’t click my heels together three times and make wishes. Once I figured out what I wanted, that gave me the opportunity to create a plan to get it. You want to be healthier? You don’t need a brain surgeon to help you. Eat well, sleep, exercise. I signed up for yoga training in my late 30s. I was in class with a bunch of thin and young bendy people and thought to myself, “What the hell am I doing here?” (Laughs.) But I did it, got my certification, started to teach. So basically, the circle exercise shaman helped me reframe things. It provided me an opportunity to create a more positive life for myself. Is everything lollipops and candy canes now? No. Do I still struggle? Yes, but things are a lot better than they were 10 years ago!

So, a year and a half after Jim Thompson’s suicide, I met another guy named Jim, Jim Sims to  be exact, and he was from Austin, Texas. We met over Myspace, remember Myspace? We start chatting, long-distance dating. I went back and forth to Austin, had fun, we connected a lot. On the phone one night long distance, he said, “I’m going out with buddies to get my giggle on.” I was like, “What are you talking about? No judgement, but I’m really confused.” He was like, “No, I’m not gay. That’s what we say in Texas when you go out with friends to have fun.” I’m like, “That’s awesome.” He called me his muse, encouraged me to be creative. I started Giggle On, blogging about my feelings, therapists, medication, losing Jim Thompson to suicide and how positivity, laughter, healthy practices and helping others actually helped me.

I know my site repulsed some people, especially my family. I think they weren’t thrilled that I was sharing personal details on a website. Every once in a while you wonder if you should do it anonymously, especially when you’re talking about intimate feelings, especially related to anything with the “S” word or depression. Do you want people to know you’re depressed, on drugs, that you spent a good portion of your life in a suicidal mindset? Because people won’t knock on your door to freaking hire you. But I did it. Do I sometimes regret opening up and outing myself? Yes, I do.

I dedicated my site to Jim Thompson. Giggle On gave me the opportunity to put together resources for survivors of suicide loss. I wanted people to know they’re not alone in this path of pain and healing is something they can do. I finished yoga teacher training, took a laughter yoga certification course while running another business and blogging. It was fun, yes, but I was juggling a lot, pushed myself hard. I eventually connected with the Mental Health Association of Delaware, I’ve been a supporter of theirs for years. In 2009, I organized a big team, and with the help of dozens of people we raised a lot of money for the E-Racing the Blues campaign. I was flying high as an advocate and felt like I was truly making a positive impact.

A couple days after the walk, I got a nine-page note suicide from Jim Sims’ email account. His sister was instructed to send it out after he had done it. He went by way of carbon monoxide poisoning in his garage and left a young son. And I’m still pissed. When I met the second Jim, he was also 35 years old and died in October. So I was thinking I was a suicide magnet for guys named Jim. Who wouldn’t? And now when I talk about them, it’s often as Jim #1 and Jim #2. How tragic and absurd?

So, as far as advocacy, I told Jim # 2 everything about losing my first friend, the ramifications of suicide, what happens to the family. When I found out he did it, I was furious, Italian furious, with enough cursing to make a dockworker blush. I remember standing in the living room, looking at ceiling: “You son of a bitch. I fucking told you. What have you done? You left friends asking, ‘What the hell just happened?'” He was extremely intelligent, creative, emotional to the point where, I don’t know a lot of guys with that level of emotional capacity. He also had a problem with alcohol. So now he’s dead. So here you are, thinking you’re doing great stuff in the world, and you’re not able to help this other guy. So let’s just say it was not a good time. It kind of set me off. I can’t say it made me suicidal, but it rocked me to my core, again, and sent me back packing into a depressed mindset.

Am I interested in getting into a relationship with a guy? I’m scared that if I do, they’ll kill themselves. The truth is. I’m still pissed. I’ve kind of forgiven Jim #1, but I’m still pissed at Jim #2. His nine-page suicide note was like some Hemingway poetic something or other. It was like he was trying to state the case why dying made sense, but it really didn’t. Suicide is stupid, and it sucks every which way from Wednesday. But yeah, Jim Sims is gone too, so now the site’s dedicated to two men, the two Jims. I set my site and mission aside after Jim #2 death. I thought to myself, “I can’t do this anymore. It’s too hard. Too painful. And let’s face it, what good am I really doing anyway?”

Something, whether it’s God or whatever, keeps bringing me back to this topic. I continue to beat the drum right now, to raise awareness. It is exhausting as a one-woman show sometimes, but I think I am finally starting to make real progress. Do I wake up in the morning singing, “I want to be a poster child for suicide prevention?” No, I don’t. The stigma about mental illness doesn’t make this topic tea-time worthy, but I think in time we can change that. Look how people can easily talk about cancer now, where 20-plus years ago it was only a whisper.

I incorporate the laughter stuff, call it laughter therapy, laughter yoga or what have you, to help people blow off steam and give them the OK to talk about their feelings, hurts and dreams. Laughter opens people up, so does humor if used correctly, and it gives people the permission to share themselves. I don’t use laughter to cover up the bad, I use it to help people, including myself, transcend it.

If there’s such a thing as reincarnation, great, but I don’t want to come back again. I want to do whatever God needs me to do while on this funky blue planet. Lead me, show me, I’ll do the work. I just hope by the time they put me in the ground or burn me to ashes I will have earned the right to sit on a cloud and drink beer for millennia. (Laughs.)

But it’s still a challenge, back and forth these last couple of years. I wonder, but I am continuing to trek along as best as I can. I’ve thought about getting additional education, perhaps a master’s or certification to help others, but I’m not sure I can be in a position where I’m listening to people unload the depths of their inner baggage eight to 10 hours a day. I think I’d either need to go back on meds to cope or get a permanent caffeine IV drip. Probably both. When someone tells me problems, I have the tendency to take them on. Sucks being an empathy sometimes. It can emotionally drain me if I am not careful. I am always looking for ways to safely help people without depleting myself and making a mess of my own life. I need to be able to get up in the morning, floss my teeth AND my brain and function as a human being in a busy and demanding world.

So that’s the shortest possible way I can explain myself to you. And sorry for talking so quickly, that’s the East Coast Italian in me.

How would you describe Giggle On in brief terms?

I use laughter as a wellness tool to help improve people’s mood.

What do you do offline with this?

One-on-one coaching occurs. I think because of my approach and my sense of humor, I’m the kind of person people tell stuff to. I can create a trusting bond pretty quickly. In a group situation, what happens is, I’ve learned it’s easier to talk stress and chronic stress instead of mental illness. Talking about suicide prevention makes people run away. I use stress, chronic stress as a segue. A couple years ago, I did an event for attorneys about stress. That opened up an area for me to talk about my story, and about mental health stuff. I said, “Listen, you guys are in a very high-risk category for depression and suicide.” Because I’m not a therapist, I have to be mindful of what I say, but I can be open about my story, give people facts and figures, and then use a yoga approach.

Breathing, all breathing. If you can get a person to oxygenate fully, you’re hitting a home run in the wellness category. Controlled deep breathing, mindfulness and the playfulness of laughter improve people’s moods and positively impact their physical body and spirit. We can down dog and warrior pose all day long, no offense to my yoga peeps, but … The beauty of laughter yoga is this. One, you don’t need to engage the cognitive mind. You don’t speak in laughter yoga, you follow the leader and fake it until you make it. What happens is, when you’re laughing, you’re turning off the stress response. You can’t be stressed and be in monkey mind if you’re laughing. So what I’m doing is helping them turn off left brain and go into creative brain, getting them to play. We’re “Ho-ho-hahaha!” So basically, we have all kinds of breath work we do, granola-head-yoga stuff, I like to say. I teach them three-part, seven-part breath, humming meditation, Darth Vader breath (which is also called Ujjai pranayama or Victorious breath in yoga), and the “Ho Ho Ha Ha Ha” part is essentially modified. Most people don’t give a crap about the Sanskrit names. People in the corporate world, homeless people or AIDS patients or parents of pediatric oncology patients are not concerned with the vocabulary of the breath work. They all want to feel better. That’s what they want. Bottom line is this: if I can get people to inhale deeply and exhale fully for about 20-30 minutes, they will reap benefits. I create a safe and fun environment where people are free to let go and play. Once I give them permission, they are off and running. Once the laughter component starts, the “Ho Ho Ha Ha Ha”s and the unconditional laughter exercises, the increase of endorphins to the brain begins. It’s like magic without the black capes or bunnies out of a hat.

Plus oxygen. Increasing oxygen rich-air not only helps the lungs and brain, but it benefits the heart and muscles. I tell people, “You can go weeks without food, quite a while without water, but not long without oxygen. Just try for a couple minutes and get back to me and let me know how you feel without it.” Most people do not breathe fully anyway. Normally, people are using 25 percent lung capacity, or we call them chest breathers. I work to get people to fill 100 percent of their lungs with oxygen. Your brain works a lot better if it has oxygen, right? That’s the kind of approach I take.

The other cool thing about laughter as an exercise is, anyone can do it. You don’t need special clothes, equipment or experience. All you need is the ability to breathe and a willingness to try to laugh. Granted, if you have stomach staples, a hernia or just had open-heart surgery, hearty belly laughter isn’t for you. Laughter yoga is cardiovascular exercise, and you will get your heart pumping, and many will work up a healthy sweat. It’s good stuff.

Listen, I could talk all day about what happens in a session, but you gotta just do it and see how it feels for you. During sessions I ask people, “Where are you in your life? What would you like to release?” Once they identify, I ask them to just set that baggage down, set down your problems and worries. You can pick it up later if you want. All I want people to do is create happy energy right now. Just play and stay with me.

All I need to do is give them permission and create space, and they’re good to go. It’s not difficult stuff, right? But it’s amazing how powerful it is for people. They have “aha” moments, get into play. By the end of the session, I ask people how they feel. Invariably I get, “That ache and pain is gone.” Problems are not as big. Laughter is a pain reliever. People say PMS or knee pain is gone. My message is, “Listen, I don’t care if you do this again. It won’t offend me personally, but the point is, or ‘point being,’ as Jim #1 used to say, you feel great because you were in play mode, your system is oxygenated, you released stress, set sail in uncharted waters, and look at how you feel.” I love seeing the “aha”s and helping them create positive energy to take away, take back home and hopefully take action to manifest whatever it is they identified on the inside of their circle. Like they tell you in AA, though I’ve never been, the first step to fixing a problem is admitting you have one. Similarly, if you want a better life, you need to figure out what the hell you actually want. Some people think they know but aren’t really sure. Part of my job is to lovingly and playfully help them extract what they want for themselves. Imagine wanting to go on vacation but not knowing where. How will you get there if you don’t have a destination in mind? Do you want to go to the beach or do you want snow? Relax or have some high-energy activity? It doesn’t matter what it is as long as the person makes a choice and sets sail. We don’t grow or learn inside our comfort zones. We have to break out, try new things and risk failure in order to tap the happy.

I get them jacked out on endorphin juice and leave them relaxed and energized. And depending on the type of group, I’m able to interject or create exercises specifically to whatever problem is going on. Basically, the lesson for everyone is, you can’t change life’s circumstances. I can’t go back in time and make my friend not be dead. I can change how to go forward. You can change your reaction, coping mechanism. Laughter is one way to cope with stress and being overwhelmed. You don’t have to use any drugs, put anything into your body. Holistic. Just try it. It’s so simple, it works really well. I tell people if the pharma companies find out about me, they’ll put a hit out on me. (Laughs.)

I love when  people have “aha” moments and write to me, “That was great!” I tell them, I didn’t do this, YOU did it. You created how great you feel. I want them to leave empowered. As Einstein said, play is the highest form of research. Play and laughter are great releases and healthy activities for the brain. Don’t believe me? Visit my site and look under “resources,” or just do a simple Google search on the benefits of laughter and play. I want to encourage people to let the bad shit go. We’ve gotta set our crap down to allow the good stuff in.

I have two young ladies helping me in the office. I said, “Listen, I’ve been reading positive psychology for like 10 years now. My life experience and lessons are mine, and what I’ve done to help myself is not gonna work for everybody. However, if just 10 percent of people in sessions have an ‘aha’ moment to change their life, then it’s all worth it. If I have helped ONE person, or one person moved on to help someone else live and live a better life, it’s all worth it.”

When I did a stress reduction and laughter session with college kids at the University of Delaware in May, I gave them all the 800-273-TALK crisis line number. I said, “Listen, I’m here because I lost a couple friends to suicide, I was depressed, and I want you to be alive and healthy.” And I asked them to pull out their phones and put in 800-273-TALK right now. They did. They were having so much fun laughing and playing they were open to my suggestion. It was a powerful moment for me. I told them they might have roommates hurting themselves or talking about suicide, and they might not know what to do. You’re not a psychologist, but you can be a caring individual, and you can ask another human being if they are okay. You can listen. Making that step, a call or asking a question, can save someone’s life. I tell them they can be eyes and ears to help keep classmates alive. Then I have them do laughter selfies. (Laughs.) I want the students to remember how great they feel after laughing. No, no drugs, no alcohol, just holistic laughter. I want students to know they are not alone in this process called college. If you have a problem, it’s absolutely OK to ask for help.

I remember being at my 30th birthday party with my parents, crying. I never thought I would make it to 30! I was sure I would be dead. So the fact that I’m still here, I tell them, “Listen guys, I can tell you from my experience. I had my own zip code and lived in the land of ‘I suck.’ I was the Queen there. But you, you don’t have to go it alone.”

So much has changed since I was their age. They have their whole life ahead of them, you know? And they’re in a very high-risk category. It breaks my heart that suicide is the second-leading cause of death for college students. Obviously, a lot of people who attempt don’t succeed. Survivors. There’s a lot of people who attempt. Drugs, other behaviors putting in harm’s way. They think they’re worthless, it breaks my heart.

If the thoughts come back, what do you do?

I say one residual thing I still do, I don’t know why, I used to cut in high school, I don’t cut, but I still rip off my toenails until they bleed. And I tried to stop. I don’t know what it is. I don’t have feelings of I want to end my life anymore, thank God, but I do get feelings very much of being overwhelmed, and how to tackle this mountain of what I’m trying to accomplish on this planet? I’m not sure what to do next. So that makes it hard. It’s difficult for me to admit even now because I’ve come so far, but it’s true. Sometimes I say, “Christa, it’s been two days, you have to shower. You can’t single-handedly save the world.”

My best friend lives next to me. He’s good because he’s kind of like a good positive echo for me to have. That’s part of the reason he still lives next door. We used to be in a relationship. Basically, I live next door to my ex. People ask, “Why not move away?” I’m concerned because he’s my emotional rock. I’m concerned if I get overwhelmed and there’s no sounding board nearby. I’m not saying I would do anything, but it’s like not wanting to get rid of the emotional training wheels. I think that goes for a lot of other people. We need to be around people who are supporting, supporting to us. If not, life challenges are more difficult. I am much more resilient now than I used to be, but people like me need to be vigilant about our brain health. It is a constant effort but something worth doing, because my life is worth it.

That’s what I try to do with other people. I try in my own way to be there as a listener or support system, whether a text or Facebook or Twitter. There are many people I support worldwide, and I’ve never met them. I don’t want to go into detail for their privacy, but let’s just say I know now my life has value because I’ve helped them stay alive.

It’s great the world we live in, with all this communication. Here’s my personal opinion: A lot of people are way too medicated and need less drugs and more hugs. We need more quality human interaction, more face time. When I got depressed or get overwhelmed, I just withdraw. It’s easy to say, “Reach out.” Well, it’s not that easy to say, “I’m going to call some 800 number and talk to someone I don’t know. And who knows if they’ll send cops to my house.”

But at the same time, not doing anything, not providing that number, is not good. You have to do that. You have to do something, Take some positive action. I want people to know, listen, like, I was in a really bad way for decades. There’s a positive way, there’s light. I promise you there’s light. I promise you. Don’t give up. Don’t give up. And it’s very easy to say those words, and for people who haven’t gone through it, it’s easy to say, but.

You get it, I know you get it.

What can be done to make suicide more discuss-able?

Great question. When some of these groups bring me in, for stress stuff, it’s what they like. One wanted me to hit on mental health and suicide prevention, and I did. The girls were very receptive, and I was shocked. It’s very difficult to stand up in front of the room and tell your story, it’s not easy to do.

For example, I was recently in my hometown of Philadelphia for the I Will Listen event, sponsored by NAMI New York and others. It brought so many mental health professionals together. It was in a park, so it was great, all these tables set up, mental health tables, passers-by. And having real conversations with people about mental health and wellness was wonderful. I think it’s those kinds of events, it’s what we as advocates for life need to help educate and reduce stigma. And to be honest, not to toot my own horn, but to engage more people about this difficult topic, we need to create more open atmospheres for people of all walks of the suicidology spectrum to join the conversation, people like you, me, Des from Live Through This, you know, the people who don’t have the mental health degrees but people who have been in the trenches and know how it feels to be depressed for a long time, be suicidal and have attempted to take their own lives.

That said, no one wants to do things that are always depressing. They just don’t. The good thing about the laughter part is, it opens people up: “OK, let’s get real with each other.” I think the community would be well-served where there are more light-hearted events that help bring outsiders to meet insiders. To really reach out and get boots on the ground, get out to the people-people, meet the real people where they are at, outside the psychiatrist’s office and on the streets, so to speak. Everybody can be preaching to themselves all day long, the community can be like an echo chamber. I mean, how much more do you need to know about suicide prevention?

One lady came up to me at my table at I Will Listen, her name was Roslyn. She was shy, hanging out around us for a while, and I started chatting with her. I said, “How do you get your giggle on?” She said, “I’m not good at smiling.” Within two minutes, I had her smiling, playing the kazoo, posing for a photo, and we texted her the photo so she could remind herself that she can smile and looks damn awesome doing it! For me, connecting with a human being with a smile or eye contact or a laugh means this: I see you. I hear what you’re saying. I care about you. A lot of people don’t know this, but I’m basically praying for them when they’re in my presence, so maybe, just maybe, they’ll walk away maybe lighter somehow in their heart and leave feeling better. We need to create an environment where it’s not just, “Let’s talk about suicide and suicide prevention.” … It’s important, don’t get me wrong, but find ways to engage people and, dare I say, have some fun! You’re still giving the seriousness that the subject matter is due, I’m not saying make light of it. But we must try to get out into the public sphere more.

One thing that’s important to many, or at least garners a lot of attention with people, is Hollywood. I’m not a huge fan overall, since a lot of the stuff that comes from Tinseltown is violent and crappy. Hollywood has an enormous role and a lot of power. With that comes responsibility to provide information to the public and make the world a better place. I think there’s a way to get Hollywood types to start addressing this issue in particular. Yeah, bullying, we need to talk about it, but let’s move beyond that and go deeper. If we’re going to get our hands dirty, let’s go all the way! Twenty years ago, nobody talked about cancer. How do we get brain health, suicide, suicide attempt survivor stories and survivors of suicide loss stories into the conversation, on a sitcom, on a reality show? Right? I think, my personal opinion is, when Hollywood gets involved, people start taking notice and the culture shifts, either positively or negatively. Open up the conversation and try to get people thinking a little bit more and hopefully taking positive action. That’s my answer. I’d like to buy a vowel now. (Laughs.)

Who else are you?

Oh my God, with these questions! (Laughs.) I’m a 7-year-old boy trapped in a 45-year-old woman’s body. I went out bike riding today, like a Pee-Wee Herman bike, and I fell off the bike and laughed my ass off, so funny how I fell. I’m kind of a person trying to find the light in very uncomfortable situations. Life is funny, and it’s very serious. Like a bike ride, we all are best served to find a healthy balance of the light and dark.

I’d like to close by saying I’m single, here’s my phone number. If anyone’s interested, but your name can’t be Jim. Just sayin’… (Laughs.)  I’m a person doing this all for a higher power. Because there’s more to life and to me than just bones wrapped in a flesh suit. Who else am I? A very serious person, to be honest with you, trying to get people engaged through light-hearted laughter. But laughter is as important to them as it is to me because without it, I would not be here. I guarantee. When nothing else works, when life gets nasty bad, laughter is often all we’ve got to help us feel like we’re in control of an otherwise out-of-control situation. What else are you gonna do? That’s why I say, when stuff gets out of control, don’t give up, you get your giggle on.

Talking with Shane Niemeyer

“I wanted to change everything in my life, and I had the opportunity to do just that. And in prison, you have all the time in the world.”

Shane Niemeyer has publicity support from the well-known publisher of his new book, but this interview came from his own initiative. He went looking for ways to reach the people who understand where he’s been. He started by Googling “suicide blogs” and came up here.

Here, he talks about how he came, at what he thought was his last moment, to see how he and friends in high school had been “ignorant and callous little pricks” for thinking a young classmate who killed herself was weak. He also talks about how he reshaped his life after his attempt years later. As a top Ironman athlete, he has quite a bit to say about goals and determination.

Who are you? Please introduce yourself.

Who I am now is, I do a lot of coaching for people who are traveling, a lot of working professionals, so I will write their workouts. I coach athletes and currently triathletes as well. I spend a lot of time doing exercise-related activity and work.

And how did you come be talking to me?

I’ve been given this opportunity to write a book, and my story got some press. Where I came from, the reason why people are interested, is because I guess it appeals to people as it’s kind of a redemption story. There was a time in my life where I felt I was in a state of desperation. And I tried to, had been in and out of jail, in and out of institutions as an adolescent, psych units. I didn’t think I could pull myself together or regain control over the direction of my life. I was really hopeless and tried to hang myself in prison, and the cord snapped, and I broke at least one of my feet and separated a couple of vertebrae. I was put on suicide watch of the jail, in Idaho.

The reason why I reached out to you is because, when I go around speaking a lot, that moment in time, that crisis imprinted me in a way that every time I read a story of someone who commits suicide or attempts or is in a state of crisis, I strongly identify with that person to this day. It’s been 10 years. It’s such an emotional experience that I don’t know if I can do anything to help anyone, but I can try.

How did you start to get back on your feet?

I think certainly it was a very unique set of circumstances. There was, one, I am very, very fortunate and grateful I came through intact. It’s one a lot of people don’t come through. If people do come through that, it changes them somehow. It changed me in the most fundamental way. The kinds of moments turned into minutes, turned into hours, what before was a crisis situation where I didn’t see any other way, no way for me to regain control of life or be able to turn around, after I jumped and found myself still alive, feelings of despair slowly were replaced with feelings of gratitude and hope. I was in jail, the beginning of what was to be a 14-month prison sentence.

I think having gone through that, I was able to change my perspective and see there was only an upside. Having nothing and having no hope was a place to have only an upside and nothing to lose instead. It was a shift in perspective. I kind of had this sense, this desperation, I wanted to change everything in my life, and I had the opportunity to do just that. And in prison, you have all the time in the world.

I embarked on this process of changing myself, trying to heal myself emotionally. Part of that for me was to heal myself and build myself up physically as well. I would take care of my body much better than I had before. All of that emerged out of that crisis.

How did the people around you respond?

The act, it stigmatized me in the beginning. I think some people’s knee-jerk reaction is negative, right? And, by the way, I remember when I was in high school, and this story would embody the reaction I got from some inmates. When I was in high school, there was a student, Mary Beth, who hung herself. Me and my friends, we were ignorant and callous little pricks, really. We said things that were so ignorant. That she was weak and should have been stronger, that it was a form of natural selection and only the strong can hack it. I didn’t think about that incident until the moment before I jumped off that ledge, and I thought how wrong we were, that in fact she had a misplaced high degree of resolve, that she was sad like me and didn’t see a way out.

I think a lot of initial response from inmates was the response that I was weak. Or crazy. And so, over time I kind of, as days turned into weeks and I started implementing this process where I spent each day sitting on my bunk, journaling, and I read almost a book a day so I could add new ideas and thought into this closed system, to add to my frame of reference. I began to have quiet moments, meditating, but not overtly, right, in the lotus position. I just made sure I had quiet moments, paid attention to my emotional state.

One thing that definitely resonated with the inmates was that I worked out. As weeks turned into months, I was working out a few hours a day. Eventually, other inmates who wanted something different for themselves started to gravitate to me and start working out, picking up the books I read. Elaine Hatfield at the University of Hawaii talked about that, “emotional contagion.” In the beginning, people were skeptical, cynical of my suicide attempt. Later they would come around, ask what I was doing, why did I read so much, how do you work out, why I spent so much time journaling. This kind of shift over time, the way they viewed me, you know what I mean? Because prison is an environment that is negative, right, you’re surrounded by the highest density of societal rejects in one spot, and they’re often cynical and negative and often kind of victims. A lot of times they view themselves as victims of society and circumstance. So it’s kind of a tough environment to plot a course. It was an interesting time for sure, but for me at the time, it was the best thing that ever happened to me.

How were you able to maintain that focus once you came out?

When I got released, I was terrified. I had been a failure for so long. Probably a lot of people who end up dying by suicide, a lot of them have substance abuse issues or what we term mental health issues. That’s all I had known the better part of my adult life, until I was almost 30. I was very scared I would fall back into these old patterns of behavior. Also, I took comfort in the fact I had spent 14 months cultivating these habits I could rely on. I was very fit, I had been journaling and reading every day for over a year. So I knew I would have a good chance if I could continue that process. Also, I was out on parole, and there was oversight. My time was occupied by meetings with the parole officer, AA and NA meetings, 90 in 90 days, something like that. I couldn’t drive legally, so I had to ride this bike everywhere.

And I had this plan, which took 14 months to develop. My plan was, I was going to be humble, I was going to do whatever it took to bootstrap myself. With a college degree, I began washing dishes, with three jobs, but I knew it was temporary. My old defense attorney, Brett Fox, let me sleep on his couch until I got back on my feet.

I knew I needed to be in an occupation where in some way I was in servitude for other people. I became a personal trainer, and now I’m a strength and conditioning coach. I washed dishes, then was waiting tables, and all the time I was harassing this gym I wanted to be part of. Eventually, since I was broke, they traded custodial work for a membership, Then I became a trainer, then the top-producing trainer in eight gyms in the area. I advanced my education and became an expert in the field of strength and conditioning.

I moved toward this sense of ideal for myself. Even talking about it now feels sort of surreal. It was about, for me, having humble beginnings and realistic expectations and also being very persistent toward a vision for myself. I was just very lucky. At one point of my life, I was just surrounded by junkies and rejects and people going nowhere. Then after prison, I was surrounded by people who were mentors, pillars of the community, and I received a leg up and helping hand almost at every turn. My experience is not what a lot of inmates had: “You’ll ever get a job, people will look down on you.” That was never my experience because it was never my attitude. But at the beginning, I was terrified.

How did the book, the national exposure, happen?

So part of my story was really wanting to swing the pendulum the other way. On the continuum of addiction and compulsiveness, I was at the extreme end. I was homeless, using needles multiple times a day, drinking a fifth of alcohol, smoking as many cigarettes as I could afford. I was a train wreck. It occurred to me that if I could kind of transform that energy or redirect it, I could swing the pendulum the other way.

I found this article about Ironman, an ultradistance triathlon. When I read it in prison, I was very impressionable in that medical unit. I embarked on this. Part of my process was, I wanted to achieve something great for myself. I began training for the Ironman. For me, the training kind of stuck. I ground it out, became a pretty good athlete.

One of my clients wrote a letter to NBC. I had qualified for the Ironman world championships; they took the top 2 percent. My first year out there, I got a call from NBC and did an interview, and it actually aired. And then AP followed with an article, then a few agents contacted me and asked me to write a book. And here I sit today, all these years later, in a very unique position. I’m very fortunate.

With that platform comes the responsibility to kind of, I don’t know, testify to the fact that life is what we make of it. It works both ways. It can be miserable. Largely my misery was of my own devising. I was also able to swing that the other way. And now I’m in a situation in my life where, in a very real and tangible way, I am very grateful. It’s hard for me to fathom that my life is almost exactly the way I would want it. So that’s kind of how my story gained some traction, this kind of coincidence. It kind of took a life of its own.

So, for other people, we live in a country where there’s a sea of discontent. There are millions on anti-depressants, and many are overweight or obese. Dozens of people a day commit suicide. And so there’s a lot of discontent out there. And I think probably from my observation, if I had to pull the lens back and examine, a lot of times we would find there’s a lack of sense of fulfillment. A lot of times, that lack can be the result of … At times, people are in a position where they don’t, can’t imagine, or don’t have a concept, they’re so focused on discontent instead of focusing on what an ideal, what a personal ideal would look life. In prison, for instance, it would be hard for me to get at a fellow inmate, to get them to articulate, “If you could do anything, if you could draw a line in the sand right now and, within reason, create a life you’d want, what would it look like?” And I think lot of people have a tough time answering that question. I believe we perform better when we have objectives.

There’s a gap between who I was and who I wanted to be. But seeing that for what it was gave me, there was ways I could close that gap and pay attention to my thoughts. Our thoughts manifest themselves as behavior. And there are patterns to our thoughts. The average human being has thousands of thoughts a day. What’s the quality of those thoughts? You can change them. I think reading a good book, or examining your own thoughts through journaling and seeing them for what they are, which allows you to mold or shape your thoughts, and paying attention to your emotional or spiritual side, whether seeing a therapist or medicating. Often this is really corrupted in people for whatever reason, whether they suffered from abuse or found themselves in circumstances that were not desirable.

For me particularly, who we are as thinking beings and feeling beings, we are embodied in this biological organism, right? A physical body. I really believe, and a lot of research proves it out, our mental state is parallel to our physical state. If you’re overweight, I believe, whether or not you’re aware of it, you can’t really be happy or can’t function at an optimal level unless you’re getting some movement.

For me, exercise became very important because it was a constructive outlet for all the anxiety, the shame, the guilt I had acquired over the years. It was a way to process them in a hands-on way. It became very therapeutic for me. The production of all these hormones, enzymes, you hear about dopamine, serotonin, all these agents that produce well-being. At the end of exercise, no matter what it is, at the beginning you didn’t have anything, but after those exercises you had something, And for me, that was critical in getting moving in the right direction in my life.

If you’re close with your family, what do they think of all this?

My family has supported me wholeheartedly since prison, and before, though they needed to cut me loose when things got really bad. The whole book thing created some turmoil in my family, but we will get past that. Obviously, they are relieved that I have arrived at this point in my life where I seem to be thriving.

How long has it been again?

I got out of prison in late 2004. And so it’s really been, I tried to commit suicide in late 2003, I suppose it was. It’s been a while now. And as time goes on, it seems so far away. But I will always be able to recall that event in a way that it still feels very close to me in some ways. You know what I mean?

Do the feelings ever come back, and what do you do?

My feelings, or urges, they’re only feelings I have come back when I speak about it or when I hear about it, right? I read the number of veterans who commit suicide each day, and it infuriates me, it makes me very sad. Because I can identify with how they are, how they feel. It makes me sad because I wasn’t there in some way. I couldn’t impart to them that if you can make it through these moments, things can be so great, life can be so great in a way they can’t imagine in that moment, right? I wish I had a stick that I could tap them on the shoulder, inject them with what I have now.

Certainly I don’t have urges because my life is fucking good right now, and it has been for a long time. But it’s not always that way. That’s how I feel, I guess, I just feel so bad when I hear about that because I can identify with that crisis in a real way.

The other side is, I wish I could have some impact somehow.

Don’t you, by telling your story?

I hope so, I hope so. I hope so. It’s my hope and now my responsibility. And I don’t know, maybe it sounds lame, it sounds lame coming out of my mouth. But yeah, it’s my responsibility. It has been my experience.

How do you change the general population’s thinking and conversation around this issue?

What needs to change, and I think it is changing, is … is the sense, obviously, of educating people. The easy, knee-jerk reaction, people who respond that way are ignorant, they truly are. There are, there just exists stupid assholes in the world. And then there are just people who are ignorant. For any variety of reasons, people place judgment on one another.

But I think with the kind of prevalence of depression in this country, which I equate to just kind of unhappiness. With Irving Kirsch’s research out of Harvard, where for mild to moderate cases of depression, a placebo was as effective as medication. Psych meds help people, right, certainly there’s a place for them, but a lot of times I think they’re overused.

There’s this discontent that probably lends itself to more people being empathetic. So many people are unhappy in this country, and they’re examining sources of that discontent, how people become so unhappy or desperate that they see no other option, they don’t think they can regain control over the course of their lives. I don’t know what the answer is. But I do think sometimes that a lot of people have experienced at least a severe bout of unhappiness or what we call depression, but there are a lot of ignorant people who will say callous or idiotic things because they don’t know or don’t have understanding. But I think that’s a small … My gut feeling is, that’s a pretty small percentage of people.

I think more and more people understand it, could at least see how someone could end up in such a bad spot, that it’s not too far a stretch from their own experiences. That’s my personal belief. And the rest is just lack of education and empathy. I guess that wasn’t a very useful comment.

The last question I like to ask is, who else are you?

I guess people should know that I’m a coach, an athlete, that I like to read, and that I really am surrounded by people that I adore in every way. That I have been a lucky person, become a very lucky person, but in a lot of ways created that luck. There’s times I had to step back and pat myself on the back. That life is good now, I suppose. That, yeah. I’m athlete. I’m a coach, a friend. Maybe in some ways I’ve been able to become a mentor to people in positions of influence themselves. Yeah, I’m a lot of things.

But mostly, yeah, I’m pretty happy with the way things have turned out. I guess I remain a dreamer, right, and remain a person always reaching for something. For me, that has been one of the most important things, reaching and developing and trying to evolve as a person, I guess.

What is the next something you’re reaching for?

Well, I guess a TED talk or a big talk would be one thing. And obviously, potentially one day, another book. And athletically, to crack the top 50 at the world championships would be a good goal. And eventually to become a good father and husband.

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.