Tom Greensides is yet another of the outspoken Canadians who make me wonder what’s going on up there above the border. We spoke this week, and he gave me a good introduction to the surgery called deep brain stimulation, which is the first treatment that has managed to keep his depression at bay.
It wasn’t the easiest procedure, but he pursued it tenaciously, even after being turned down by doctors. “The most uncomfortable part was when they drilled holes in my skull,” Tom says. “It’s like having a tooth drilled. I don’t think you’re as old as I am. When I was young, dentists drilled your teeth and it just about shook you out of the chair.”
Here, he talks about his friends’ teasing about the treatment, his new attitude toward mental health and the modest but important role a coffee shop called Tim Horton’s has played in his everyday motivation.
Who are you?
I’m 66 years old. I was diagnosed with depression when I was in my 50s. Up till then, I had managed to do whatever to get by, but it was later in life that it really hit me. One day, I ended up at the doctor’s office because all I could do was cry. I used to be an eastern Canada sales manager for plant nutrients, and you can’t make sales calls with tears running down your face. The doctor said “depression.” It was the first time I had heard that word applied to me, and I’ve been battling it ever since.
Prior to having the DBS surgery, I needed to supply a list of my medications. I was shocked when I went to the drug store to get it, and it was 35 pages long. I had tried just about everything. I tried two courses of ECT for a total of 29 treatments. Most things worked for me in the beginning, but shortly, three months, whatever, I was back in a mess again. And then in 2005, I started really seriously thinking about suicide. I started a note in January 2005 to my family about what I was going to do and trying to make sure they understood it wasn’t their fault. Finally, the 24th of May, I walked away from home early in the morning and took an overdose that ended up leaving me unconscious under a tree for 30 hours. When I came to, I crawled to an area where I was found. That led to the hospital, where I started to get real help.
I really believe the only thing one leaves in life is their family, and I’ve always been very
protective. I wanted to make that investment in my family and convinced myself that, by taking myself out of their lives, they would all be better off. During my hospitalization, the doctor pointed out to me that the worst thing I could ever have done was commit suicide; my family would never, ever recover from it. I had thought it through, and I figured suicide would be like any other death. We’re all going to die, so I thought they’d have a funeral, and a week later they’d all go back to work. They’d miss me for a while, then go on back to their lives. It was my new psychiatrist who convinced me that this was absolutely not true. They would not recover. I made a commitment with him that, if I ever felt suicidal again, I’d go to the hospital and get help.That did happen twice in the next year or two, but I started learning ways to deal with it myself and not to do it.
I learned to do things like go for a walk. A big effort for me. Depression wants to make one
spend a lot of time in bed. And many times, I’ve been laying down, thinking, “This can’t go on, I’ve had enough,” and getting up either to do something about ending it, or doing something to not end it. On those occasions, I generally put on my walking shoes and walk for a couple miles. In Canada we have donut shops called Tim Horton’s. Where I live now is halfway between two Tim Horton’s, so I can walk about 45 minutes, have a coffee and go home. And each time I get back, all of a sudden “ending it all” is not important anymore. I had to learn tricks like that, doing things even though I didn’t want to. I learned how to take the first step. And once I put my boots on, I might as well step outside. Once outside, I might as well start walking to the corner. And so on. I’ve learned to take life in very small steps right now and not worry about the big picture. This approach helped me to survive until I got the DBS implant.
This September, I took a job driving a school bus. I love the interaction with the young people. I love having to get up in the morning to do something. And without the DBS, I would never have been able to do that. So I consider myself a pretty fortunate person. We live in what is called the Niagara region, and apparently I’m the only person in the region with a DBS implant.
How do you know?
Just by talking with my doctors. It’s still rather experimental. I think one big reason I received the surgery was, maybe, because of my age. They had no experience with people as old as I am.
Tell me how you came across DBS and decided to pursue it.
I looked for answers, and whatever I saw online or in the news, I followed up on. There was a treatment, I think vagus nerve stimulation. It was only available in the U.S.A. and was incredibly expensive. I rejected it. Finally, I found out about DBS, and it looked good. I talked to my psychiatrist, and he at first advised against having it, then we both studied it. He said, “You know, you need to go for it.” He realized how bad things were for me, just struggling to stay alive. So I just kept going for a walk, a little bit at a time, pushing for it. The surgery is done in Toronto. The head of the department was speaking one day to local health care professionals. I showed up at the meeting uninvited, and at the end I talked to him. He agreed to meet with me and started the assessment. I was turned down, but I kept pushing until I finally got it. A matter of being your own advocate.
When did you get it done?
Sept 14, 2011.
How does it work?
I have had two electrodes implanted in section 25 of my brain. Those are hooked up to a
pacemaker-type device implanted in my chest. There’s a battery in it, not unlike a heart
pacemaker, called a neurostimulator. It can be set at a variety of settings. Mine is set at eight volts. They increase the settings as required. I had the last increase about three weeks ago. I’m sort of a medical miracle. I have had skin cancer since 1982, and the last bout was this summer. I needed radiation on the back of my head, and no one is sure what happened, but it knocked me into a bout of depression. They increased the voltage, and it worked very well. I went in three weeks ago tomorrow, and the doctor checked it all out and said, “Its working,” and I said, “I can’t go on like this.” He increased it a full volt. My wife was with me; I think she didn’t trust me to go alone any place. When we walked out of the hospital and within 15 minutes, I remember the exact spot outside the hospital, I said to my wife, “Something’s changed. I feel different.” It happens that quickly. I guess the take-home message for me is, there are a lot of people, including me, who wonder what causes depression: “What did I do to cause depression? Did I eat the wrong foods, work too hard, whatever, whatever, whatever.” I guess what’s been really helpful is to understand that if they can stick two electrodes in my brain and relieve the depression, it’s likely that I didn’t cause it. It’s a chemical imbalance, or whatever. It has nothing to do with anything I did in the past. My wife always wonders to herself whether she did something to cause it or can do something to cure it. And after that, obviously, the answer is no. It’s been a huge relief for me. I love to work hard. I regularly get up at 5 a.m. and, when I was employed, I used to start at 5 a.m. to go do things while other people were still sleeping, and I just loved it. A lot of people said, “You overdid it.” I did a lot of volunteer work, and I loved that, too. “Overdoing it” had nothing to do with it.
What caused it?
I had a grandfather who suffered from depression. It was likely a genetic connection. It missed my mother’s generation, but two of my cousins suffer from depression, making three of us in this generation. So I guess if anything causes it, it’s being born in the wrong family. And I don’t know about you, but I didn’t have a choice.
What have people noticed about you? What changes?
People can’t believe the huge difference in me. We went to a dinner party with a number of
people a few weeks ago, and jokingly one of them said, “We’re going to take the battery out of your device because you’re enjoying things too much.” My wife really, really notices the difference. And when it wasn’t working after my radiation treatments, she could tell.
How has all of this been for her?
It’s been extremely difficult in two respects. One, it’s adjusting your life to someone who has depression, who doesn’t have any fun, doesn’t want to go anyplace, everything’s a struggle. Then all of a sudden he wants to do things, go places. So there have been two big adjustments for her.
You mentioned that your family is your only legacy. But when you look back at your
thinking at the time, that they would hold your funeral and then move on, does that
thinking make sense now?
No, it’s absolutely incorrect thinking. I’ve done a lot of volunteer work. One thing I did recently was speak at a suicide awareness walk in St. Catharines. It is definitely one of the most difficult things I have done. I spoke as a survivor of suicide, and I was speaking to the victims left behind by suicide. It was unbelievable. There were about 300 people there. How much pain and agony was in that room!
And yet I understand that suicide has nothing to do with dying. In my opinion, it only has to do with trying to relieve the mental pain, the anguish, the anxiety. Most people who are so down and in such a position that they want to commit suicide can’t really appreciate what the full impact will be on the ones they leave behind.
Do you think the people in that room can understand that point of view?
Some did. That was my purpose in speaking, to provide them with some relief. To tell them
that the person who committed suicide hadn’t done it to get even or hurt anyone, it was just because they just couldn’t live with the mental pain any longer. And it’s so hard to explain that to somebody who hasn’t been there. I’m not super religious or whatever, but I am a Christian. In religion, they talk about doing the right things to get everlasting life. One thing that terrified me was to get stuck with everlasting life. And I’ve not told anybody that. That’s one thing you’ve got out of me.
You thought that all your life?
No, just since I was depressed. But I understand listening to the minister speak, and the first thing that pops into my mind is, “Why the hell would I want that?”
If your younger self could meet your older self now, would it understand?
Not at all. I would not have been good at it. I’m almost embarrassed at how I handled people, before my illness, who were suffering from mental illness. If I walked down the street and saw someone talking to themself or whatever, I would try to avoid them. And if today I saw them, I’d walk up and say, “Good morning” or whatever. I’ve learned so much. It’s too bad I had to be so old to learn.
You said the many treatments you’ve tried didn’t last long, beyond a few months. Are you worried about the DBS lasting?
I worry about that on a daily basis. Now, the success rate of DBS is over 80 percent with people like me. And my doctor in Toronto tells me, “Don’t give up, we know it will work.” And those electrodes have four positions they can select, and a variety of voltages from five to about 10 and a half, so there are many variations. He said, “If it doesn’t work, we just haven’t found the right combination.”
What about the possible downsides, the cost, the pain, etc?
I have no idea about cost because it was covered under the government health plan. It’s not an issue in Ontario. The pain is like having serious dental work. You have no feeling in your brain, so the only issue was the halo that held me in place. They froze various portions of my skull, and I won’t say it was painful, but the most uncomfortable part was when they drilled holes in my skull. It’s like having a tooth drilled. I don’t think you’re as old as I am. When I was young, dentists drilled your teeth and it just about shook you out of the chair. The nurse knew it would be troublesome, so she held my hand, helped me get through it. The pain wasn’t bad at all. And when they stick things in your brain, you don’t feel it.
You were awake the whole time?
You have to be. To establish where section 25 is, they have a laptop showing me different
kinds of pictures. They had devices in my brain measuring the impulses from what I saw on the laptop. The surgery started at about 9 a.m., and around 9:30 they started probing in my brain. Finally at about 1 o’clock, they said, “I think we can insert the electrodes.” Now, I expect I was anesthetized somewhat. But certainly I couldn’t speak and had to do things like move my hand to say “Yes” or “No,” because the devices in my brain, when I tried to speak, created static on the machines behind me. Oh, it’s sort of like space-age science fiction. It’s really hard for a fellow like me, who was educated before computers were even invented, to understand what was happening.
And yet you were really tenacious to get it.
And your family was OK with it?
Yes. My family’s been involved ever since the suicide attempt. I’ve kept my family fully apprised of what I was doing. The day of my surgery, my son actually booked off work, and he took me to the hospital and stayed with my wife for the day until I was back in the hospital room at night.
What about right after your attempt? Were you so open? Some people, including myself for a while, keep it so secret and quiet.
Before I was sick, I used to do a lot of volunteer work, president of the local chamber of
commerce, president of the Ontario Fruit and Vegetable Growers Association, all sorts of things like that. All involved public speaking. After my suicide attempt, my counselor at the hospital said it would be really good if I joined the CMHA speakers bureau. I said, “OK,” but I didn’t do anything about it. The next time she said, “Did you do anything?” “No.” Finally, after three tries, I called CMHA and ended up going up there. And for me, it was one of the best things I ever did for my own therapy; publicly speaking about it and being honest. I don’t know how many times I’ve spoken. It’s been well over 100 times. I’ve never had a bad reaction. To me, that shows the acceptance of people if you can explain your story. And that’s been really, really good for me.
Were there any worries about facing the same people that you had spoken to before in your earlier roles?
I never thought about it for some reason. I’m from a small community called Grimsby, and two years ago, they had an event called Lunch and Learn. I was asked to speak, and they did a poster up that said “Tom Greensides,” and I’m well-known enough in the community that people knew me. And they packed the room. And it didn’t bother me at all. Because, I guess, you can’t hide it.
So the only way, for me, is to deal with it, be up front, talk about it, and I guess the benefit of speaking to a group is they’re committed and listen and you can tell your story. And you know, we have some people we know who suffer from mental illness. We had a mother and young daughter at our house for coffee a couple weeks ago, and they were very reluctant to admit they suffer. My wife and I encourage them not to be reluctant. It’s certainly not going to change overnight. The young person is in her early 20s and longs to continue her education. We are helping her to get involved in our local university which has a good record of working with people with mental illness, letting them set their own pace.
How about the questions people ask you? Anything striking?
I had to have surgery once for something totally unrelated. At the hospital in Hamilton, the doctor I had for the pre-op noticed all the antidepressant medications I was taking. He said, “All you need to do is throw all of these away and take vitamin E.” And I’ve heard that from a few people. Not when I’ve spoken, but I’ve had a handful of people tell me. But I find the hardest to deal with is health care professionals who are not involved with mental illness.
I don’t know. I don’t know. At the mental health department here in St. Catharines, the first
objective of the new executive director is to train the rest of the staff in mental illness. And I’d agree it’s a big, big need. But no, I’ve never had a question when I spoke that I wouldn’t answer. You know, I guess if you tell your story, people are very sensitive to what you’re dealing with. But to do that, you have to be honest with your story.
Why would someone be dishonest?
You gloss over, minimize, whatever, I don’t know. Because it’s not an issue for me. And you know Wendy, and Wendy certainly is very honest.
What’s up with Canada? People seem more accepting up there than in the U.S.
I don’t have enough experience to really comment. But a lot of people like Wendy and so on have been working to try and elevate people’s understanding of mental illness. And again, I have enough trouble keeping up with everything in Canada.
What more can be done about the stigma around suicide?
I think we need to keep doing what we’re doing and do more of it. It’s not a sprint, it’s a journey. The lady I mentioned earlier, she has an awful time with her mother who keeps telling her to just fix it: “So you’re feeling bad, just carry on.” I’ve been there. You can’t do that. So not everybody up here is understanding. But I think we’re working at it. We certainly haven’t done the job completely.
How about the media, public discourse, should that change and how?
I’ve found the media here very supportive of mental illness. I sent you articles from The St.
Catharines Standard. They did a whole week’s worth on mental illness, major whole-page
articles. I guess I wouldn’t be at all critical of the media here.
I’m also thinking about movies, TV, books, portrayals, etc.
I think they’ve become more sensitive about it, but I don’t think the deal’s all done, either.
I want to go back to the question about the time just after your attempt and how open you were. You talked about speaking publicly, but what about speaking with your family? Did you ever keep it quiet at first?
No. I couldn’t keep it quiet. “Where’s Dad?” “He’s in the hospital.” “Which one? Where in the hospital? Why is he in the psychiatric ward?” You know, you couldn’t hide it, and my wife was very honest with them. She explained it exactly. And they came, and we talked and visited and so on. I don’t know how you’d keep something like that quiet. And if you think you’re keeping it quiet, you’re likely only fooling yourself and not anyone around you.
I tend to think that a lot of mental health professionals are drawn to the field because of their own experience, but they don’t dare mention it.
My psychiatrist congratulates me on my speaking. He says, “I have all these letters after my name, but I don’t begin to understand mental illness like you do. And you have such a valuable part to play because you’ve been there.” Maybe I’m being really lucky, being encouraged by a professional.
I like to end with the question, Who else are you?
A grandfather, a father. But I’ve always had a strong motivation to be involved. And now, I
guess, I’ve become almost supersensitive about the issues around mental illness. And I work as a volunteer trying to improve the quality of life for people who struggle with mental issues, personality issues or whatever. I guess we all go in this world only once, and very few of us are allowed to be perfect when we do that. So we need to be sensitive to people’s flaws and not judge them because of that. I volunteer on a crisis line, and I find it tremendously rewarding to talk to someone struggling for whatever reason and try to bring a bit of comfort to their life. I guess I have changed a lot because of it.
With the crisis line, did your personal experience matter, or did you even bring it up?
Not at all. They consider that an advantage because I can work from a point of understanding, because some volunteers have not been where I’ve been.
How do you protect yourself from getting too overwhelmed or too involved or such?
It’s not an issue yet, but it’s something I’m watching. And at the crisis line, there are professionals there, and those professionals monitor people like me, to make sure that it doesn’t become overwhelming, They’re prepared to help us, so there’s a bit of a backup there as well.