The personal experiences below are taken from "Dancing in the Rain: 25 stories of hope, healing and recovery", a book published by the Mood Disorders Association of Ontario to celebrate its 25th Anniversary. Copies of the book are available by contacting the
On Tuesday morning August 27 1997, I awoke at 10:37 am on the psychiatric ward in Sunnybrook Hospital and I was well. After 15 years of indescribable emotional, cognitive, and physical pain, I was well. After six psychiatrics, 17 hospital stays, 27 different medications, 24 electro-convulsive therapy treatments, countless amounts of psycho-therapy, I was well. Having experiences spontaneous remission after one dose of a new medication (that I would continue with for the next 12 years), I was well. I walked out of the hospital at noon on that day, never to look back. I was well.
Ironically, during those terrible 15 years when I suffered from severe, treatment resistant clinical depression, I had never even heard about the Mood Disorders Association. Hmmmmm. In the depths of my pain and despair, I never even thought about joining anything (I spent most of the time in bed, in hospital, in pain, in anguish). I also had been thoroughly acculturated to rely on the medical profession almost exclusively to make me better. And since that wasn’t working, how could some kind of “support” group in the community possibly help? I was clearly too far gone. Obviously, nothing “soft” like peer support or recovery education would fix me.
I only became aware of MDAO one i began to recover from my illness. As part of my karmic-debt repayment plan (as a way of saying thank you to the cosmos) for finally becoming well, I asked to speak, to tell my story. At first, I spoke at some day treatment programs, then at an MDAO conference in Orillia. That opened the floodgates. One speaking engagement led to another, speaking engagements led to volunteerism, volunteering led to a position on the MDAO Board, then the presidency, and finally, becoming Executive Director of this extraordinary organization. It’s as if I’d been on a long, dark journey my whole professional life to come home to this place. And what a place it is. Each day I have the privilege of bearing witness to the journey of hundreds of individuals and families who are climbing and sometimes crawling their way back from darkness into the light. I am surrounded by the most wonderful, dedicated, passionate volunteers and staff members in this sector. I am privileged to meet the most courageous, resilient, powerful, fellow travelers on this, our shared journey to hope, healing, and recovery.
This is the gift of my life and my life’s work. You see, for me, hope, healing and recovery are not individual attainments or life states. Like the best meal or song or spectacular view, these are most profoundly felt when shared with others. I will forever thank MDAO for allowing me to share this finest of all gifts.
In many ways, my story of involvement with the MDAO is based on my daughter Rebecca. Rebecca had an awful lot going for her – bright, creative, popular when she wasn’t too crazy – but that was where her story went gradually off the rails. In 1992, Pitzer College phoned me to tell me that Rebecca had been locked in a ward that kept her inside and normal people out. She had gone nuts. They said it was temporary. It didn’t turn out to be.
She came home from Pitzer, and back to the city, trying to rebuild her life. She had a lot of ups, and a lot of downs. After a year or two back home, she got into the school of the Art Institute in Chicago – a major accomplishment based on her extraordinary creative record. That didn’t work either. She drank, ingested strange stuff, and eventually attempted suicide. She moved back to Toronto. She lived in Scarborough, in a half-in half-out organization for people who have bipolar. She tried again to build on her record, getting into the Academy of International Arts. Again, there was more failure than success. She would drink too much, ruin a few good parties, and generally have a bad time of it all. It was all the bipolar, that she never really got a handle on. Finally, after thirteen years of trying, she did it. It was her fourth attempt at suicide, and this one worked.
I was, of course, devastated. She had so much going for her, but the bad guys won out. I decided I wasn’t going to do what some people have done, and hide it. I went to the Mood Disorders Association of Ontario. This was hardly my first time at the Mood Disorders Association. I had actually signed up about four years previously, trying as ever to really figure out my second daughter. I fell in love with Karen, and with her fantastic assistant Ellen, and Paul Grissom joined too, and almost ten years later, we make the thing move. But I went to see Karen and a great volunteer, Rebecca de Filippo, freshly living with the fact that my daughter was gone, forever gone.
We decided we would try to do something- an art show, based on people with mood disorders, called Touched By Fire. It seemed to be a fitting memory for Rebecca. I reached into my pocket and came out with some money – there will never be a better time in which to do so.
We started up a committee, which was and is one of the huge points of today’s success of Touched By Fire. Absolutely unbelievably organization. In essence, we said, “Okay, there are thousands and thousands of people in Ontario who have mood disorders, and somehow they do art, too. Can we combine them?” We also had a truly wonderful gift that, four years later, shows no sign of slowing down. Peter Kahnert, senor vice president of Raymond James, talked his associates into funding the program above and beyond my bequest. And that program thrives, and they have won the Business in the Arts Award from the Globe and Mail, and they’ve gone from “Well, it’s okay, Peter, if you really want to do it” to a huge supporter of mental health, just thanks to Touched By Fire.
In 2009, Touched By Fire had 691 guests at the ROM, with over 400 entries, and people bought over 50% of the art. I am not going to go into the success of the show, but in these twenty-five articles, you’re going to find an awful lot of stuff on it, and that tells the story far more then I can do. It is a great tribute to what MDAO can do, and it all started with Rebecca. I can tell you, I have incredibly mixed feelings about it; it is a huge success, but of course it didn’t have to exist without her death.
MDAO had helped me to heal without question. This is the most important thing I have going for myself these days. I’ve got enough money in the bank, and I’ve got sideline things to work on, but this is the most important thing to me involving my profession, and my profession is very important to me after all these years. It just continues to grow and there’s no reason it’s going to stop, and for me, that’s forever a great, great healing – huge.
I first came face to face with mood disorders abruptly and acutely when my 17-year-old son attempted suicide. Although there were plenty of warning signs leading up to it, I missed them because I wasn’t really familiar with mental illness or mood disorders. It came to a head on January 7, 2003. We were out of town and received a phone call from one of Jonathan’s friends who was very worried that Jonathan might be attempting suicide, and that he was saying his final goodbyes. Fortunately, I had begun reading about depression and had just learned that you take every single suicidal thought or mention of it seriously. You can imagine how I felt at the time. I thought it might be too late. I had my husband call and get the Toronto police to the house.
Somewhere around my fifth or sixth attempt to call the house, my son finally answered the phone. The first words out of my mouth were, “Jonathan, I know what you’re trying to do, and you must stop.” I think he was kind of shocked, and he said to me – and I’ll never forget this,- “Mom, I’m in so much pain. When dogs and cats are in pain, we put them down and I just need to put myself down because I can’t live with this pain anymore.” How do you respond to that? The only thing that came to mind at the time was, “Jonathan, how do you know that the pain really ends when you kill yourself?” Jonathan is an incredibly logical thinker. The only thing that he hadn’t thought through was, “How do I know that the pain stops when I end all this?” He didn’t know. That gave his pause, long enough for the police to arrive and take him to Sunnybrook Hospital. That’s where my intimate knowledge of living with someone with a mood disorder began; and it was a long journey back.
Looking back on it now, seven years later, it’s fascinating to me how the world works. Jonathan was admitted to Sunnybrook, and stayed there for two weeks for a full assessment. They put him on meds, released him, and said “good luck.” We were told we should find someone to provide talk therapy, so we started down that path. Luckily for me, we found a therapist who said, “Your son is not ready to be out of the care of a psychiatrist. You should go back to Sunnybrook and insist that your son needs more support.” So back we went to Sunnybrook and Jonathan was put under the care of Dr. Amy Cheung. Dr. Cheung started to see him on a weekly basis. Along the way, I called anybody who had “mental health” in their title – Canadian Mental Health Association, the Mood Disorders Society of Canada, CAMH. I must have made at least 25 phone calls. All I wanted at that point was to speak to one parent whose child had recovered and gotten through to the other side of this traumatic illness.
That's what I really needed – someone who is real, who had done this, who had made it through. It seemed as if nobody could give me the answers I was seeking. They could give me brochures, but brochures weren't what I needed. We weren't going to leave any stone unturned. I called MDAO; Karen very kindly agreed to see me and I heard what MDAO had to offer. I remember joining MDAO that very day. I took several books out of the library which I diligently read, but the thing that impressed me the most was that Karen called me back. About a week after I'd seen her, she picked up the phone and talked to me. At the time I felt so alone, and in such a battle for the life of my son. Nobody was calling me back. Nobody was behind me saying, "how are you doing?" You have no idea how the phone call impacted me. To know that somebody was concerned about me, my son, my family and how we were doing, that she had taken the time and said, "How are you doing?" I still remember what Karen said to me; "well, it sounds like Jonathan has a really strong soldier on his team." It made me feel so good that she thought I was doing the right things, that I was taking the right steps, because I was so overwhelmed.
As we were going through this, I took a leave of absence from my job and spent three months trying to figure out how to make sure Jonathan got the help he needed – the right meds, the psychiatric support, the talk therapy, the right nutrition, an exercise program, and how to get him socially reconnected.
My commitment to the mental health area Springs from twin motivations. Number one, I really wanted to give something back to the community who had help save my son. The second motivation was that I really felt strongly that more had to be done to help the families, caregivers, and people who love the individual who is suffering with a mood disorder. We focus on the person who is ill, but the family and resources around them can make such a difference in their success and recovery. What drew me to MDAO is that's what they do. They don't just look at the person who is ill. They offer programs for families, groups for siblings and spouses. The recovery process is long, and it takes people to walk the journey with those affected by mood disorders. In my estimation, not enough attention is being paid to the whole recovery process.
I believe that families have to recover. Somebody once said to me that a family is like a mobile; if one part of the mobile is pulled or starts to wiggle or get out of whack, the entire mobile goes, and to me, truer her words were never spoken. When you have someone in your family who is suffering from a mental illness, it affects the whole family.
When Jonathan was first really sick and in the hospital, stigma was alive and well in our home. My thinking was, " oh my goodness, what a terrible mother I am; my kid tried to kill himself. Everyone's going to know. How bad is his life? It must be my fault." I didn't want to tell anybody what had happened to Jonathan, and Jonathan didn't want anyone to know that he was L. Everybody tiptoed around it. Nobody knew how to behave. Once Jonathan began to speak about his experience, I could speak out as well, and the two of us worked at recovery in parallel, each of us speaking our own truth. We went out to speak to High school and university students. I went out and spoke to parents groups. I think it helped us in our healing tremendously because we felt we were now strong enough to tell it the way it was. We were okay with it, we were doing it together, and we felt like we were making a positive difference in the world. A great deal of healing actually came from speaking out.
In our darkest days, all I wanted was to have a reason to hope because Hope would carry us forward. When I started to talk to Karen and met more people and realized that, in fact, recovery was a reality and could be achieved, it was all I needed. We could make a difference in Johnathans life. Once I had that hope, everything else fell into place. Hope is that light in the future that leads you forward to a better day, and it's hope that keeps you dancing in the rain. It may not be much of a dance, and it's pretty wet and soggy, sometimes without much grace, but you're still there, moving forward one step at a time. I really pray that part of the roll I can play for other parents is to be the beacon of hope, because I know how important it was for me and my moment of darkness, real confusion, and fear. It was hope that pulled us all through to the other side
I believe that I was born with this Illness. I have always had depression and anxiety. To this day, it still follows me around like a shadow. It lives inside of me. In 1991, a school counselor at Humber College saw that I had incredible anxiety, and she drove me to the nearest hospital. The doctor there described me the list of the classic symptoms of bipolar disorder, and I realized that I had every single one of them. I was admitted the following day for number of weeks, and I was given the diagnosis and my first Meds. My first reaction to the diagnosis was, "I don't believe it!" What I did believe in, having been raised in a very religious home, was some kind of curse. For me, it was not a disease but a supernatural occurrence that was driving me nuts and trying to kill me. It took a long time for me to completely dispel that idea.
One of the big curses of depression is the feeling of hopelessness. I didn't believe either of my doctors when they said that they would not give up on me, that I'd get better. I never fully believe that I was going to recover; I thought that eventually I would kill myself, or that I'd get another disease that would kill me. I thought my doctors and my friends were just playing with me. Even the things that I loved to do the most – my arts, my reading, my socializing – these were the things that most filled me with the dread.
Art has always been a very love/hate situation for me. I know I was meant to be an artist. When I was four, I told my mom, "I was put on this planet to be somebody." For many years, however, I did my art under the influence of alcohol. I found that if I went to the studio sober, I would have a major panic attack and be unable to work.
I believe that Art was one of the reasons I came out of my depression. The other reason was volunteering at MDAO. On the days I was there, for the four hours I spent as a telephone volunteer, I didn't feel depressed. It gave me purpose. I needed to move forward. I would try to get as many volunteer hours as I could because it would lift the blackness for a while. I also needed structure in my life. It was a bit selfish. I was coming here in order to feel better. Talking to other people about something I knew about gave me the purpose I needed. Helping other people puts you on a higher plane in your own life and makes you feel better. It began to motivate me to do other things too.
At first, I was reluctant to be part of the Touched By Fire planning committee, but at the same time, I really wanted to do it. I finally dove in. I was contributing to something creative, and I was getting respect from my peers. I gained more confidence and people liked my ideas. I surprise myself. They gave me a reason to be a somebody again – maybe even that person I told my mom I was meant to be. I don't have children, but I now understand what it's like to be a proud parent. We work so hard at putting that art show on each year, and if we didn't work so hard, I wouldn't feel so proud. It's a stronger feeling of accomplishment then an opening night at one of my own shows because I've been working with other people. We share, we work, and we give birth to this baby. Four years in, our baby is really impressive. The proudest I've ever felt was last year when we held Touched By Fire at the ROM.
If I had not had depression and then healed, I would not be the person that I am today. Healing has given me the gift of not taking a single second for granted. It's given me a new lease on life, and I am savoring every moment.
I was diagnosed with bipolar disorder in 2004 when I was 24, but I did have symptoms since I was 12. I kept them inside. I eventually went to my family doctor because I had severe depression. I was diagnosed with clinical depression and given antidepressants. This caused me to have a manic episode. It took a lot of convincing for me to understand that the medication didn't make me unwell, it just brought out the illness that I had. I wasn't a fan of the medical profession for a while.
I was on and off medication for a couple of years after that, and each time I would take the medication, I would do well and then say,"I don't need this anymore."
I'd come off the medication and I'd be good for maybe a year, and then I'd end up in the hospital again. I've been in hospital twice. Eventually, I noticed the pattern, and I realized that when I'm on the medication I'm well for the most part except for some of the side effects that I managed to work through. My last episode and hospitalization was in 2006, and I haven't had a major episode since then. I'm still in therapy, which has been a huge help. I think it's really the combination of the two that's helps me stay well.
A few years ago I came to MDAO and went to a support group. I was very depressed and a little paranoid at beginning around people. I just wasn't in a place where I was ready for that. My family and I went to see stand up for mental health, and my family – they think I'm really funny – said, "you should do this. You would be really good." It terrified me because I haven't really been leaving the house and haven't been interacting with anyone other than my family. I had no energy at all to get up, get dressed, eat or travel anywhere. I didn't think I'd be any good and I thought I'd embarrass myself.
But it was such a turning point! If you can stand up in front of 200 strangers and make fun of yourself and make fun of your medications, and make fun of things you do when you're not well, and actually get a response and laughter, you realize you can do a lot more than what you give yourself credit for. From there, I started volunteering at MDAO as a facilitator and the phone support volunteer. Then I decided that I wanted to go back to school for a masters degree. I also started dating this year which I never have done before. I graduated with my honors ba in June, and it meant so much more to me because I had to work through medication and side effects. Focusing and concentration is difficult, so being able to focus and to study is pretty remarkable. It was great to see that it didn't make me revert to where I was before.
I got hired at MDAO as a family peer supporter worker which was a great boost to my confidence because I hadn't worked for six years before I came here. I find it really rewarding to be in this position. Frequently, people will call me back or e-mail me and they'll say, "thank you so much for your help." They appreciate when I disclose that I have the illness. I've definitely helped a lot of people, and they seem to be very grateful for the information that I give them and what I tell them about myself. I love this job.
Recovery is a process. I'm still recovering. I find as each year goes by, I'm stronger and more confident. Everyone here is so supportive. I feel so normal here. Even talking with the other volunteers about our experiences, I just felt like I wasn't so alone. That was a very important part of my coming here. People have described me as as a success story, and I guess that I am, but I never thought of it like that. Public speaking has been really huge for me, very powerful, just sharing my story with people and seeing the response that I get. They're just so happy that I'm doing well. They tell me, "you give me hope because I didn't know that people with this illness can do the things that you're doing, so when you do well, maybe my son can do well"
I think I needed to have been where I was to be where I am now. I love doing the things I'm doing, and helping people in my work position here. Now I can use my story to help people. I feel like I have a greater appreciation for life and the little things that I missed out on when I wasn't well.
Bipolar disorder is only one part of me; it's not all of me. There are lots of other aspects to my character – I have a sense of humor, I'm sociable, I'm optimistic, I'm spiritual – so I would hate for people to define me as "oh, that girl who has bipolar."
I experienced both physical and mental paralysis. The depression was much worse.
When I was 14, I was active in sports, and avid hockey player, and an athlete. I was hit with Guillaume Barre Syndrome. It paralyzed me from head to toe for a year. I don't know how I dealt with it, but I guess as a kid you just have resilience. I wasn't depressed, but I was angry and frustrated.
Still, I kept on believing that I was going to get better. I did get better, and I went back to school. I had a dropped foot from the illness and I always felt stigmatized because I walked funny and was no longer an athlete. The hard part was how I perceived myself. At the end of university, I started to feel blah. I had no desire. I didn't know where I was going. I was just caring less and less, watching TV all day, living at home, eating and drinking a lot. My parents took me to see a psychiatrist, who gave me antidepressants at my first session. The diagnosis wasn't explained to me, but the doctor said that if I took the meds, I'd feel a lot better. Within a month, I did feel better. I got a great job, became involved in a great relationship, and started working out again. But the side effects of the meds were horrible so I went off them.
I was fine for five years, but I always had a sense of searching for something that might be better. I was never happy where I was. I traveled to Thailand, where I met a couple and I smoked half a joint with them. That changed my life. I immediately fell into psychotic depression and was desperately ill for two years. This depression was full of panic and fear. Every minute I thought I was going to die, and I wanted to. I didn't want to feel pain. The medications weren't working, and it took two years to find a cocktail of meds that did. Finally, I began to feel better and Got to a good place, with a new job and another good relationship. But once again, the side effects were too much, so I decided to go off the meds. I began to meditate, do a lot of exercise, and talk to other people. And I did pretty well. But when I was 36 and up at a friend's cottage, they lit up a joint after dinner. I stupidly had a few puffs. I wanted to feel like I was normal and had been nice. It caused me four more years of hell.
I was in and out of the hospital several times. I tried ECT, several different medications. I was suicidal every day and felt it was too painful to be in my body – there is nowhere for me to go. These feelings were so powerful. I was desperate, so I researched like there was no tomorrow.
I knew the problem was chemical and I wanted to find something to make it better. I saw story on the TV show 60 minutes on deep brain stimulation, and that was it. It was being researched in Toronto and it looked pretty fascinating. I guess I was the squeaky wheel – I begged and pleaded for eight months to get into this study. I was the 21st person to have the surgery. It took six months, but I woke up one morning and I was better. For the most part since then, I've been pretty darn good.
Now, even when I get down, it's not to the same level. I usually popped back out after two or three days. I think I'm always trying to find ways to feel better. I know my journey will never be over; I'm always going to have the same downtimes, but hopefully I'll find some better ways to cope. I don't really drink, and I have to be very vigilant about my life. I am trying to find those triggers that cause the downtimes. But about 80% of the time I'm really good. Just speaking engagements where I gets to share my own story with young people in schools is extremely rewarding. Speaking on behalf of MDAO has been a great help to me. I especially enjoyed talking to those kids. I'm always nervous, but afterwords, I always feel really good.
I also attended groups at the MDAO. Hearing other peoples stories made me feel like I was part of something, that people understood, and I wasn't alone. MDAO is doing so much for so many people, and I want to be a part of it. It makes me feel like I have a purpose in my life and that I can help people. Being on the board of directors is the same thing. I feel like I am doing something and helping to, and it blows my mind how much work we do.
It was so important to know that I was going to be sick forever. Now I'm working full time in a brand-new business that I helped create and that I love. It helps when others said firmly that I was going to get better. Every time I'm in a depression, I think it's never going to go away, but then I pop out of it and I'm living life again. To have people support you and give you hope is huge. There's something that happens to me now that never has before. Now, when a wall comes up, I just step back, wait, and the door opens up. It's the realization that – wow – things aren't as bad as they seem. You can have a beautiful life. You can be a more loving person. You can understand people more. Some of the people that I've met who have mood disorders are the most deep, real people with amazing hearts. A lot of other people just go through the motions of life.
It started when I was 18 growing up in Hamilton. I was watching TV with my friend and, in a sudden hallucination, I saw myself on television. I also saw myself featured on the front page enacting his local newspaper which was sitting on the coffee table. It just blew my mind. I went chaotic; I couldn't talk.
A friend, who was in my parents apartment told me later that when I walked in, I said hello, went into my room, close the door, and then huddled in the fetal position in the corner. I was taken for a CT scan and they could find nothing wrong, but I was soon admitted to Hamilton General Hospital. Since the psychiatric unit was full, they put me in the generic ward, and they didn't tell me why. I remember walking down the hall in the hospital smock and thinking I must be an old guy. The next day there is an opening in the psychiatry and I moved into a private room. The doctor gave me two pills. I slept for a day, woke up, and my mother was sitting beside me. She took my hand and said, "Barry, you are sick. You'll be sick for the rest of your life. We will take care of you." I was there for the whole summer in a locked ward.
They let me go at the end of summer. I started grade 13, and they went from being an A student to getting failing grades. I had to do that here over again. I didn't have a diagnosis yet, but I remember seeing the word "schizoaffective" when I was admitted to hospital. I started seeing a psychiatrist and I couldn't understand why, if I had some kind of mental disability, was I talking about my dysfunctional family all the time instead of just taking meds? My psychiatrist said, "it's good to talk." Eventually, he sent me to a psychologist who I saw once a week. She also said, "we're not sure yet what's wrong with you but it's always good to talk."
A couple of years later while studying to become an optometrist at the University of Waterloo, I suffered a serious depression, and eventually dropped out. Four years later when I went to the University of 12 to become a landscape architect, I was finally diagnosed. I was driving my car on the way to see my psychiatrist in Hamilton, and along the way I had a hallucination that I was a cop. The car ahead of me had a massive exhaust fumes so I pulled the woman over and forced her off the road. I got out of my car, walked over to her and told her to roll down the window. I was wearing an orange tank top and con of shorts and I said to the woman, "can I see your driver's license". She showed it to me! Finally I let her go with a warning and off I continue to see my psychiatrist. I was talking a mile a minute and the doctor saw I was in a full manic state. He called my parents and they arrived. He said, "there he is manic depressive." We've got him a room at McMaster University Hospital and will get him stabilized on lithium carbonate." I moved there for three weeks. They got me on medication and they let me go. I went back to my apartment in Guelph and eventually decided I wanted to be a photographer. I started Ryerson in the next year. I was in group therapy in Burlington for about eight years. I was still confused about why, if I had a psychiatric/mental disability, was I in group therapy. But I had so many issues, it helped me work on a number of things. Then I heard that lithium can destroy the kidneys and I had been on lithium for approximately 16 or 17 years. So I went off my meds, in spite of my doctor's concerns. Two years later, after much success in my photography business, I crashed again. I was in a very serious depression, and this time I gave up the will to lead. I destroy a very successful business, and I just went down and down and down and I became suicidal. I was plotting how I would kill myself.
Month after month, I languished, `the rent, I hated life, I prayed to die. I had a run-in with the law and landed in the Metro West detention center for three weeks. Then, I ended up in a psychiatric boarding house near Bathurst and Davenport and lived there for 16 months. I didn't take care of myself. I looks like a train up, the tramp reading books on psychiatry and psychology and business in the local library. My intellect continued but my emotional side was way off. I would go weeks without a shower. I had long hair. I would sit on my bed in my shared room and look at my photography portfolio from Ryerson and say, "I used to do this." I thought my life was totally destroyed. I thought my life was over.
About a year later, as I was beginning my business anew, I had a feeling that I wasn't sick anymore. I have evolved out of the elements. I was fully recovered and healed. I believe that the reason I'm not sick anymore his decades of psychotherapy, nearly 2 decades of medication, and embracing the growth that came from suffering. By the grace of God and a lot of hard work, I walked away from the illness 20 years ago.
I worked as a telephone distress center volunteered for about a year, then I realized that I wanted to meet with people face to face so I contacted the MDAO. I'm one of the original board members. I also became a trained volunteer group facilitator. I'm in my 14 or 15 year now. With the group that I do and the public speaking, I tried to bring hope, inspiration and healing. When I help another person, whatever I did I get back multiplied. I find 90 minutes that we have for the men's group is more real than being out in the working world. When you come to this group, once a month, you come here with no pretense you're here to get help and help each other. I really find it so inspiring. I personally benefit from seeing people being so authentic.
I'm truly honored to be a part of this book. I'm privileged to photograph all the subjects. I get to chat with every person that I photograph. I find it very life-affirming to hear their story and then try to portray a portion of their life and to capture how hard they worked to build and rebuild. Healing is a process, it's different for everyone. Could be meds, could be psychotherapy, could it be the drumming, could be using humor, diet, exercise; it could be anything. It's literally a system. If this doesn't work, try something else.
Recovery can also mean many things. It can be getting out of bed at eight in the morning instead of staying in bed until two in the afternoon. They can be taking a shower every day instead of once a week. Sometimes you bang your head I'm 100 doors and nothing happens and you're ready to give up. But then maybe the 101st door opens and your life will change. But without persistence, nothing will happen.
The only place you get to success before you got to work as a dictionary. If one route doesn't work, you try another route. That's why I'm recovered. That's why I've gone so far. One of the greatest gifts of my previous mental illness is that the hard work I put it into surviving is now directed into thriving. While still a professional photographer, my life journey inspired my book, Hope and heroes. I also speak on overcoming challenges, have become a radio broadcaster, run a group at CAMH, sing and play guitar in seniors homes, and in and out of cold homes and am a big brother. I just think it's so important to give back. So I do.
Cathrine Priske and Leslie Bennett
LESLIE- I know that depression was part of it, but the mania was more prevalent. I remember some of the things I did when I was manic. I was 27, and living in a house in Vancouver with three other individuals. Of course, I didn't know I was manic at the time. Now I can see that my behavior was not in line with who I was as a person. One of the things I remember is walking around downtown Vancouver, and having it seem like it means or a puzzle or scavenger hunt -- and it was all in my head. I was smoking marijuana, partying a lot with friends, doing other recreational drugs, thinking it was all okay.
There is bipolar disorder on my fathers side of the family. Two things happened in my early years. First, my parents separated when I was tying, and there was no professional guidance around that. Second, my older brother was born with a neuroblastoma on his spine. From the time of my birth, my brother lives in the home and the only time we saw him was to go visit him on Christmas or his birthday. There was no professional help around that either.
Catherine -- there were really two distinct periods in Leslie's life. There were difficulties at school. We have her tested and they said she needed extra help. I don't know if that was a red flag, but now I think it could've been. She was very social and partied a lot. I didn't know the extent of the drug use at the time. When Leslie decided to go out west, it was after a tumultuous summer when she had a serious motorcycle accident.
Leslie -- I had head trauma, which is pretty significant. It could have been stressed on the brain that triggered me.
Catherine -- I knew nothing about mood disorders until Leslie moved to Vancouver and was having trouble with jobs in debt. A friend of Leslie's call this late one night and said, "you better come, there is something very wrong, Leslie is having a mental breakdown." She was living on the street. When her older sister Heather and I caught there, we found her after about 24 hours. She didn't recognize me when we finally met; and she said I was an alien, and wanted nothing to do with me. She looked very different. She was manic at the time, so she was speaking very quickly. That was my introduction to mania. I remember she came to visit us in Toronto one weekend. She said she was planning an event and she was as high as a kite. I couldn't believe my daughter; she just seemed to be flying.
Leslie -- being diagnosed in the hospital was the beginning of my recovery. I really started to understand what I had, and I understood that I needed to come back home. When I got to shore no, it really was a leap forward in terms of my recovery. I don't know that I'd be sitting here today if I hadn't done that. I was in a day program at Sunnybrook doing psychotherapy and medication therapy, and almost a year later I moved out of my parents house. In that time, I found a volunteer job where I worked two days a week Anna paid job for three days a week. I moved into a house with my high school friends who knew me very well, so I was under a watchful eye. It was actually my high school friends that I felt safest ways when I came back -- they knew the real me, and they accepted me. I had gone to a couple of peer support group meetings in BC, and continued them here in Toronto.
Catherine -- when I got home from BC, I found MDA O. I phoned, and the lady I spoke to on the phone recognized that we were in a crisis, and validated the ideas that I had to help Leslie -- I've never met this lady, but if I did, I give her a hack of a hug. It helps me to get that support from someone who's been there -- that was the beginning of my relationship with MDAO, and we've never looked back. The support we got before I started to volunteer was unbelievable. Some of the volunteers really went out of their way to support and help us -- they gave us what we needed to get through. I decided at some point down the road that I had to say thank you. I came in, went through the interview process, and got on the telephone helpline. I really enjoyed that -- I enjoyed talking to family members because it was there that I could share my experiences of what works for us. Not being alone, realizing that my family wasn't the only one going through such a dreadful experience, getting feedback from people -- it allowed me to become aware of what help was available. I always send people the fact sheet, helping someone with a mood disorder.
Leslie -- first, I came to grips with my family. I remember thinking, "wow, there are others like me." That's a sense of volunteering and giving back started -- I can help someone else, I would feel to share my experiences to do something for someone else. When my mom started volunteering, she was not allowed to tell anyone who otherwise. I was really secretive about it. I wasn't sure what it would do in terms of my professional reputation. There is a 10 year span between the time when I started volunteering and went for shared my own story.
Speaking your story out loud makes the story much smaller than it actually is in your head. That's therapeutic, even if you're speaking to a wall. PLO to see the difference they can make to other people is so fulfilling. I think that's partly why I do what I do now in terms of my career. It's a huge part of my recovery -- speaking the story aloud, sharing it, and writing about it.
I did the mapping journey program here, and enough program, I wrote things that I've never said to anybody. Being able to go into organizations and talk about my success story with a mood disorder is a relief. It's freedom. Every day that I get to do that is just another step in my recovery process. I think having bipolar disorder is an asset. I know that I'm very creative, in a piece of guys like bipolar disorder. If I tell my story to someone, I've created trust and intimacy with another person, so that person is able to be vulnerable with me.
Catherine -- that would not have happened if not for MDAO. It touched all of us.
Leslie -- recovery is a journey. I originally thought I would just "be" recovered. But what I've realized in the last year and a half is that recovery is a journey until I die. There are going to be ups and downs, and hopefully I will have the tools to deal with all of that.
Catherine -- I don't feel my part in her recovery is as intense now because Leslie has taken over, and has taken responsibility. This "coming out" has been a joy -- I can't begin to tell you how much it touches me. If you can tell people you've been there, it's just huge.
Hope is essential in all of this. If you don't have the tiniest bit to get you through the day, it's not going to work. Dancing in the rain came home to me at the MAD about you gala. It's at the auction 99, my husband bid on a piece of sculpture. He gave it to me later home, and it has two figures, a man and a woman, and they're holding each other and dancing. Every time I see this, I think that is what we're doing; were learning to dance in the rain.
Leslie -- the title speaks to me. In life, there are all of these circumstances -- whether it's bipolar disorder, divorce, you fail in school -- that's the rain. If you're able to move through it, and be what they, and have the tools and support they need, it will be beautiful.
I have struggled with the symptoms of a mood disorder for an incredibly long period. I didn't know what had precipitated the mood swings, but new they greatly impacted my life. I suspected that the significant ups and downs experienced as a teenager were caused by an accident I had when I was 12 years of age. I tumbled out of the tree striking my head on a rock and then proceeded to slip in and out of a coma for two months. As a byproduct of this trauma, my memory of childhood from birth to age 12 was erased and is not returned. The loss of that part of my history made me feel cheated and subsequently created by deep bitterness within.
It's I found myself simultaneously it's envying and loathing others. I felt so abnormal unbelief people pitied me. What I really needed was acceptance and love. My thoughts about life became very skewed and were filled with anger, resentment, meanness, negativity, hopelessness and a host of other self-defeating thoughts. I was definitely not looking at life through rose-colored glasses. At 21, in an effort to mask my mental and emotional chaos, I turned to alcohol. In retrospect, this was not a good move. I had to deal with the fallout from this decision.
When I was married, my wife and I were having relationship difficulties and we went to see a psychiatrist. He spoke with me and noted that I exhibited symptoms of bipolar disorder. This was an "aha” moments and I realized that the symptoms were controlling my life and that something had to be done. In my newfound awareness, I believed I could control the symptoms by changing my thinking. This did not work as well as I hoped and a number of years later I decided to follow the medication route. Unfortunately, the side effects of the medications impaired my thought patterns, made me feel out of control, and caused significant and embarrassing tremors. I felt like I'd been chemically lobotomized and was no longer able to do the arts and other things I enjoyed. I stopped medicating and begin meditating. This change made me take a closer look at myself. Yes, I still had symptoms to deal with but I realized there were deeper issues that must be dealt with first. As I journeyed back to the years of my youth, I discovered how insecure I have become and how much I hated and despised myself. This revelation forced me to work on self acceptance and self-love. By relating of life began.
On my journey of discovery (recovery) I came to an understanding that the diagnosis of "bipolar" was a gift I had been given. I was, for the first time, exposed to my "humanness", my vulnerability, my compassion, my desire to serve, and my love for all of creation. I was truly grateful for this gift because prior to the diagnosis I felt empty, separated, and alone. At this point, my career as a volunteer began.
My motivation for volunteering in the field of mental health and addictions is very selfish. It springs from a sincere desire to bring joy into my life. I'm on a journey of recovery and my work as a volunteer provides me great joy, purpose, and a sense of well-being. It is important to me to be able to share with others, hear their voices, validate them, tease out their strengths, and support them as they travel their own path of recovery. Others may benefit from my offerings but I really do it for me.
MDAO was my first venture into the world of peer support. I waited three years before I screwed up the Kurds to attend a local group. "They will understand what I am going through," I thought. I quickly discovered that I was incredibly wrong -- they did understand. This became the pivotal point in my life change. From that time on, I committed my time, love, and life to the pursuit of mental wellness. In every venue I do my chosen work, I proclaim "you are not your illness -- you are a human being -- you have hopes, dreams and desires!" In the support group environment, we are not ordained to be clinicians or therapists. Our role is not challenge you, tell you what to do, or judge you. Our role is to listen with our eyes, ears and, most importantly, with our heart. For me, listening with the heart is where it’s at.
In the early days, my MDAO involvement was primarily local but extended to a provincial level when I was invited to sit on the MDAO board. This opportunity served as a launching pad for my purchase a patient on more than 40 boards and committees throughout the province of Ontario. I have constantly felt at home in our organization and feel honored to be part of such a dynamic group of individuals. I'm extremely proud of our leadership, our staff, and our board. I sincerely believe that the respect MDAO has gained over the years is due in large measure to the dedication, understanding, and that compassionate heartfelt approach to those we serve. By drawing on our lived experiences, we continue to make a difference in the lives of others. I truly believe that is what life is all about. On a personal note, I am very grateful for the opportunity MDAO has provided which allows me to love, to serve, to care, and to simply be me.
In the context of recovery, it is wise to remember that recovery is not a destination, it is a work in process that we live daily. It is the inner healing work that brings us a sense of well-being, happiness, and peace. It is the act of coming back home to ourselves.
When I was thirteen years old, I moved away from all of my friends very abruptly. It was devastating. There were also many family issues going on. I was overwhelmed. I felt numb. I didn’t really experience sadness, but there was a loss of interest, anger, isolation and I withdrew from everything. That feeling continued until I was about eighteen. I saw a few doctors sporadically. I’d see a therapist for one or two sessions, feel better, and then think that I was okay and didn’t need to see them anymore. And then it would start all over again.
Late in the summer after my Grade 9 year, my mom called the suicide hotline. It was surreal – it just wasn’t possible. The police arrived and I opened her bedroom door to find her on the floor crying, saying she didn’t want to live anymore, didn’t want to do it anymore. She had pills all around her and was threatening to take them. This was such a shock because in my family, my mom was the rock. She was never overly emotional or showed any weakness, and none of us even knew that she was depressed as she was generally a very private person. I went into shock. They took her to the hospital, assessed her and prescribed some medication, then sent her home. She was okay for a little while, but a few months later, I came home from school and my brother looked at me and when he said, “It happened again,” I knew exactly what he meant. She ended up in the hospital for a few days. After that, she was told not to work anymore because she couldn’t handle the stress. However, she decided to still work and pushed on. Things were okay for a little while afterward, but the atmosphere in the house was anxious – like something bad could happen at any time. But we didn’t talk about it since we weren’t really communicative about emotional issues.
Over time my mom became more and more paranoid with delusions of persecution. It was to the point where she wanted to move to the States, back to Jamaica, to Windsor. Every two weeks there was a different plan, so it didn’t feel very stable at the time. It got really bad towards the end of the summer. She stopped eating completely for about a month, only drinking tea, and she wasn’t sleeping either. Something had to be done so my brothers and I devised a plan to get her help. The following morning we told her that if she didn’t agree to go to the hospital we would call an ambulance. She didn’t agree and responded by threatening to jump off a bridge because we were going to call the authorities, and since she was a threat to herself that’s what we did. She spent about a month in the hospital and was diagnosed with depression with psychotic features, bipolar disorder and schizoaffective disorder. I was sixteen.
During this time, I got really depressed myself. I became agoraphobic and social phobic. As a teenager, these were tough things to deal with. How could I have friends or get close to anybody with all of this going on at home? So I became completely withdrawn. I would only leave the house for school. It was the only place I felt comfortable. I wasn’t really eating well because there wasn’t a lot of money coming into the house. I survived on rice, corned beef, and toast for most of that school year. I was going to school hungry almost every day. Nobody else – teachers or fellow students – knew that any of this was going on.
It started to turn around when I was eighteen years old. I had gone back to a new high school to pick up some credits so I could go to university, and it felt like a new start for me. I didn’t really have friends in the first high school I went to – how could I? I felt like I could never bring anyone to my place or invite them into my life and the things I was going through. I felt like there was so much wrong with me that no one would like me anyways. In my new school, I starting making some friends and actually hanging out with them after school. It was still difficult for me because I felt like I had a three or four year gap that I needed to catch up on socially. It was scary, but I knew the only way to get over it was to put myself in new situations and just do it. I got sick and tired of being sick and tired, so I decided I was just going to change my life. The way I was living wasn’t even living a life for me.
When I started university, I took a psychology class. I felt like I had come home. It wasn’t work; it was discovering life, discovering other people, discovering myself. I was just drawn to it and I knew that it was what I wanted to do, especially after everything my mother had gone through. I started talking about psychology and mental illness with my family and anyone else who would listen. By this time my mom learned to be more open because she realized not talking about it was not good for her, so we were able to have open conversations about the subject. I learned to be more empathetic to people’s emotions.
After finishing school, I worked part time at Future Shop but wanted to be involved in something that had a special interest to me. My mom found an ad in the NOW newspaper that said MDAO was looking for volunteers. Volunteering has been really eye-opening. Besides my own illness and that of my mother, I hadn’t been aware of mood disorders in people generally. But being on the phones and talking to people who have battled mood disorders, I realized how wide-ranging the experience could be, how depressing the stories could be and also how triumphant they could be. To hear about how much people have overcome gives me faith that there’s a light at the end of the tunnel. You do get better; it’s not a life sentence. You can learn how to manage it and it makes you a stronger person.
I manage to stay well by putting myself in situations where I’m surrounded by positive people. I think positively. If I feel myself going down, I try to avoid the things that will continue the downward spiral. The worse I feel, the more I reach out to people, stay open and express myself. That is what really keeps me going. Now I’m employed full time by Pathways to Education in Rexdale, a program designed to keep teens in school and out of the legal system. They say sometimes a career finds you, and I feel like that’s what happened to me. I love my job and look forward to going to work everyday.
Knowing what I’ve gone through and what my mother’s gone through, there’s no doubt in my mind that anyone can get better, especially with the right amount of attention, treatment and dedication. Sometimes, when you feel depressed and you feel like there is no life, you can still get better, and you will if you try and never stop fighting. You’re going to come up against roadblocks. I have hit so many obstacles in my life, and each time it felt like I was back to square one. But I got up and kept fighting. There is a Chinese proverb that resonates with me and my journey that I live by – it goes, “Fall down seven times, get up eight.”
David Craig (Lorna’s father) - Lorna had just finished her first year at Dalhousie and was living with my sister at the time. Robin had an acting engagement in Port Dover, so we decided that we would move there. We received phone calls from Lorna that began to worry us. She said, “Have you ever seen God, Dad? Because I think I have.” Initially, I thought that many young people have spiritual experiences, and it was not actually a sign of anything wrong. My sister then told us that that she never saw Lorna, that she was coming in very late at night, not sleeping, and partying very late. I came back to Toronto to see for myself. Lorna behaved aggressively and angrily in ways I had never seen. I had no idea what it was. I just thought it was bratty behavior, and that she had to smarten up and get her act together.
Robin Craig (Lorna’s mother) - I felt like I was shattered in a million pieces. During Lorna’s first manic episode, I was out of town doing a show. But Lorna’s speeded up conversation and odd ideas were evident even on the telephone. I realized something might be very wrong. I was torn between my extreme love for my daughter and the recognition that something she wouldn’t like had to be done. I needed to get her to a safe place, to be examined, to just convince her that she needed help. It’s almost like your child is drowning – you don’t think for a moment about not jumping in. I became clear-headed and single-minded about getting this girl help. I asked my husband, David, to take her to the hospital, and he picked up on my urgency. I became hyper-focused. If I was talking to David or Lorna, I was very clear and calm, but the moment I got off the phone, I would shake, I would cry, I was a mess. You do what you have to do and then afterwards, you fall apart.
Lorna - At first, it was the most amazing feeling ever, so I was resistant when people thought it might be something potentially negative. I was just floating on a cloud, and was super confident. Initially, my dad thought that I was having some kind of spiritual awakening, but my mom knew that something was up. I didn’t sleep for ten days. I didn’t eat. It really felt like some kind of external energy was coming through me. I can see why people mistake manic episodes for spiritual awakenings; everything felt very profound, and very real. I resisted the idea that something was wrong. I didn’t see that I was irritable and impatient and not eating. I didn’t want it to end, and I didn’t want to accept that something needed to be done. I realize now that if I hadn’t come down from that, who knows what could have happened?
There were ten straight days of mania, and every day became scarier. At first, it was a little hint, but by the end, the irritability and lack of sleep and delusions were really scary. I did recognize them as delusions at a certain point. For example, I watched this movie obsessively, and I was convinced that the cast of this movie had created this film to find me, that this was their way of reaching out to me. There were moments of fear and sheer craziness. I think the turning point for me was seeing the look of utter fear on my mother’s face. She was really terrified and thought something was desperately wrong. I began to think about it and that’s when I got scared too. Things were dark and negative, and there was more anger in me than I’d ever felt before. My dad and I weren’t getting along, and things weren’t fun anymore. You definitely have all these wonderful feelings during mania, and I thought it was infinite. But it can never last, and I was just exhausted at the end of it.
Andrew Craig (Lorna’s brother) - Real improvement didn’t happen for another year and a half – her mania went away after she was put on an antipsychotic – but she wasn’t insightful, she wasn’t aware of what had happened, she still wanted to go out and party and was still so angry at my dad. She went back to school and promptly went off the medication, and that’s when the big breakdown happened. My mom had her committed to a hospital that she couldn’t leave. My mom dropped her job, flew out to Halifax, and stayed in a hostel to ensure Lorna was contained and protected. It was very frightening, because that’s when the extremes of the mania set in – her roommates called my mom and told her that Lorna thought people were watching her through cameras. She had become very paranoid.
Lorna - I felt really betrayed by my mom when she put me in the hospital. In retrospect, I know it was the right thing to do, but at the time I didn’t want to have anything to do with her. I knew something was wrong, but when she wasn’t around, I could convince myself that everything was okay. At that point, I was willing to go back on the meds, but it was too late. Something else had to be done.
I realized that my parents and their concerns weren’t flawed. I felt I needed talk therapy and support and education, but I didn’t get that then. I am sad that, at the time, my parents didn’t have a place like MDAO to take me to. But I eventually came around and was able to forgive everyone because I realized that, at the time, they did what they thought was right for me and that they loved me. I hadn’t been in a place to make my own decisions about things.
David - At some point, somebody directed us to MDAO. We knew that we needed help. We needed to know what bipolar disorder was. We needed literature and education. We had to be given some advice on how to handle Lorna. “Snap out of it” was not the right approach. When Robin and I went to the family support group with other parents who were having problems with their children, it was wonderful to be with people going through the same thing as us. What I learned from that experience was that while you think the first thing you should do is look after your daughter because she’s sick, ironically, you have to look after yourself first. I think Lorna only came a few times to our sessions with Catherine, but we understood that if we could lower the stress in the family, we would lower the stress for Lorna.
Robin - By the time we got to Catherine at MDAO, Lorna was in a seriously depressed state, so it was easier to get her to come with us. It was like being thrown a life preserver. It was fantastic to know that there was a place we could go to get information. Luckily, Lorna was compliant. She knew something was very wrong. Catherine was amazing. She didn’t minimize the problems we were having, she didn’t diminish the crisis, and she didn’t try to sugar coat anything. She was our sounding board and, without taking it on emotionally, she was able to support and validate our feelings. She helped us to see that there was a light at the end of the tunnel.
Andrew - I also worked with MDAO and Catherine personally for two years, just one on one, to get coaching for myself to help support my sister and to deal with some of my own issues.
Lorna - MDAO gave us support and information. Now my parents know way more about bipolar disorder than even I do. MDAO provided them with enough background so that they knew how to be with me and how to communicate with me. Now they know how to do that for other people too. Previously I’d been trying to explain what I was going through, but I was sick at the time, and a sick brain can’t possibly explain what it’s going through. All of a sudden, all that pressure was off me – I didn’t need to explain how I felt and what I needed, they just knew.
Robin - When we were in the Strengthening Families Together group, we were aware that other families were suffering from even more serious situations than we were. We tried to be sensitive to the fact that our daughter was responding well to treatment. We wanted to share that message of hope. Not only have we recovered, but we have improved. Lorna suffered and we all suffered. It was Lorna who was the focus of the illness and had to carry that burden. Because of the help we got at MDAO, we understood the illness and now we’re stronger as a family. We have so much more compassion for other people. We’ve been through it, so we can see things from the other side. It’s like there’s a storm raging outside and the lightning is hitting your child. You’re trying to get them somewhere that’s safe, and when refuge appears, you run into it with your child and you hold on.
Lorna - Families do have to recover. In a way, it’s scarier to be the family than the person going through this illness. It’s very traumatizing for them. MDAO helped them heal, independently of me. I felt good knowing they were getting that help; I was no longer responsible for that, I could concentrate on getting myself better.
David – Initially, you feel an enormous amount of shame when your child has a mental illness. There’s a stigma about mental illness towards not only the person, but to the family members as well. What was wrong with me that I raised a child who’s having so much trouble? You stand at the edge of the anti-stigma movement and you have to learn to feel okay about it. Lorna helped make it easier. She was not afraid to get up and speak to hundreds of students about her bipolar disorder.
Bipolar disorder is not a death sentence. It’s not a terminal diagnosis. It’s not the end of something. It is a challenge and it is a shock, but there is a learning curve and it’s not the end of your son or daughter moving on with their life. There may be renegotiations around expectations, but ultimately those expectations are just superficial anyways. Now I’ve gone from that scared parent I was in the beginning to the one who extends a hand to another parent struggling in the darkness.
Andrew - I have a great relationship with my sister now – we have one of the best sibling relationships that I know. We’re very different – she’s very social and gregarious, and I’m not so much, but we’re very close, and I expect that we’ll be best friends in the future.
Healing and recovery mean deep, tangible fulfillment, hard work, relapse, detective work - like you’re discovering source code. We all have patterns of behavior and thought – there’s a lot of emotional healing, physical healing, healing between people in relationships, but in a nutshell, it’s hard work. It’s the most important and fulfilling work I’ve ever done. I don’t even consider work for money or career the real work. The “real work” is on me.
Robin - Lorna’s not the least bit afraid to talk about her illness and neither are we. Lorna has taught me that the only way to end the stigma is to show people that we don’t care about the stigma.
Lorna - Dancing in the Rain reminds me of a quote from a Paul Simon song: “Now you’ve had a breakdown, now what are you going to do with it, that’s what I’d like to know”. I think it means finding wisdom and joy in hard times, and knowing that you can learn so much more and become who you’re supposed to be. I would never trade in my experiences – they are the most valuable things that I have. I would not be the person I am, I wouldn’t love myself as much as I do, I wouldn’t laugh as much as I do if I hadn’t gone through the rain.
My mood disorder started with me being an overachiever. I was caught up with consumerism, and I pushed myself too much. I had started a new job, which was overwhelming. I worked 16-18 hours a day, and then also worked when I came home. I was getting very little sleep. One day I just cracked – I couldn’t remember where I worked, or where or how to get to work. I found my doctor’s office because he was on a main road, and I drove by and thought I recognized the building. I was over fifty years of age, and I thought my breakdown was a stroke, or a brain tumor – I didn’t know what it was.
My doctor diagnosed me on that first visit. He knew I was having a breakdown. He sent me home and told me I couldn’t go back to work until he gave me permission. When I got home, it continued to get worse – I went from almost no sleep to sleeping all the time. I lost the ability to read, communicate, carry on a conversation, drive. I couldn’t understand conversations because I couldn’t remember what had been said before that; it was very frightening. The doctor said it was because I was overstressed, but I was convinced it was an aneurysm, or seizures. It took six months to be able to speak three sentences clearly.
I didn’t go to a support group until two years later. By that time, my doctor had put me in touch with a really good psychiatrist. I did a program on CBT (Cognitive Behavioural Therapy) for two hours a week for almost eight months. On my first visit to a support group, I was so paranoid that I had my son check out the schematics of the building so I would know where the building was, and where I would sit. At first, it was terrifying – I took extra medication and I managed to find my way in. I went early so that I could find a seat right by the exit doors, but when I got there, someone was sitting in my seat. So I sat in a fetal position in a different seat. I managed to get my name out, but that was about it. Other people in the group talked, and I thought, “Wow, there are people here who are more whacked than I am!” and I felt a little bit better about that. Two people who had been going to the group for a couple of years stopped me afterwards and said, “You know, you won’t believe us now, but you are going to recover, and you’re going to feel better.” I couldn’t see it – I had no hope, no vision. Other than having a good doctor, I didn’t really have any support. It was very difficult.
The support group was a place where I was accepted – I didn’t have to explain anything to anyone. Other people had had similar experiences, and they told me how they handled it. There were people you could actually go out for coffee with and take walks with, and, even if you never said a word, there was this understanding. I developed coping skills, and I learned to laugh again. Other people who had travelled this journey shared their stories. Many times, I set myself up for failure and the people in the group would say, “You’ll get better when you get better. In the meantime, let’s just relax and do some good stuff that we know you can do.” That’s the advice I give to other people now – you can’t talk yourself out of the illness, but you can do good things for yourself like eating well, getting on a routine, trying to get out. I also got a dog, and that got me out every day.
The fact that I could help someone in my limited way was instrumental for my healing. I felt I could benefit and assist others – I’d always wanted to help people, but when I became ill, I couldn’t even look after myself. Helping gave me a sense of purpose, and that validated my existence.
One of the most important things I realized was that I could either feel sorry for myself, or fight back. I’ve always said to people, “If you want to get well, what are you willing to do to get there?” The answer is, you do whatever it takes, and you keep at it, and if something doesn’t work, you try something else. You never give up. It felt good to help people. If I was helping people, then I was getting out into the world and not isolating myself.
Death is never an alternative or solution – sometimes it just takes longer to find the answers. That’s where you need people from support groups, because they give you the encouragement to get past that moment. Churchill said, “If you’re going through hell, keep on going,” and Martin Luther King said, “Your journey begins with a first step.” I had to take the first step, and I had to go through hell. I wouldn’t take any of this away, because now I have much greater compassion for others.
I think we have to learn to dream again. Dream of what it would be like if we were well. Those dreams were what sustained me. I began to think, “When I’m well, I’ll be able to do this.” The next part of it was, “What do I have to do to get well?” I say, “Surround yourself with good people.”
My mood disorder probably started in my teens and I had many ups and downs, although I certainly didn’t know at the time what was causing them. As time went on, I had many successes in business and many firings in business because of my mood disorder. There were times when I was so suicidal, that I’d walk along the train tracks, planning how to die.
I was thirty-seven years old when a doctor finally said, “Paul, you’ve got depression”. It was the wrong diagnosis. They gave me antidepressants, the proper treatment for someone with depression, but not with bipolar, so the medication made my illness much worse. For the next eighteen years I really struggled until I found the right formula to get well again.
The local support group in Midland was started in 1988. I became involved because my doctor was referring his patients, and, in fact, he insisted that I go to the group. At first, I didn’t even go in because they were meeting at a church and I thought they were all a bunch of religious fanatics who were going to heal me by saving my soul or something. But they weren’t. They were just good people. For the first six months I didn’t say a word, and since then I haven’t shut up. MDAO provided the group with a tremendous amount of support over the years, whether it was Karen speaking to our group, or the fact sheets that I’ve handed out by the hundreds. Back then, you went to a doctor, got a prescription, went home, and waited to get well. If that prescription didn’t work, you weaned yourself off of it, and started another prescription. MDAO and the Midland group really helped me find more information about mood disorders. I had felt like I was the only guy in the entire world that had bipolar because back then nobody talked about their mental illness.
Support groups were a safe haven for me. It didn’t matter what I said or did, or whether I laughed or cried or fell asleep during a meeting, nobody judged me. It was one of the few places where people only wanted to help me. When I go to see my psychiatrist I am judged, and when I fill out my disability claim forms, I’m judged. When you’re ill, you’re always being judged, and you judge yourself all the time. “Did I do that right? Should I have gotten out of bed? Should I have forced myself to do this?” But I could go to a meeting and try to learn. I would not be judged if I failed to learn.
You always have to have hope. One part of my recovery that took me a long time to understand was that this was my illness, and I was going to have to learn to live with it. If my wife left me, or if my friends didn’t talk to me, I was still going to have the illness so I had better learn, maybe not to enjoy the illness, but to enjoy my life again. I can’t get my old life back, but this new one is pretty darn enjoyable for me!
Although I can’t make a contribution to society by working – and that bothers me - I do make a contribution by volunteering. I volunteer all the time and partially for selfish reasons – because it makes me feel good about myself and this illness often takes away your feeling good about yourself.
No organization is perfect, but the Mood Disorders Association of Ontario comes close. The support groups, I can’t say enough about them – they literally saved my life. If it weren’t for the support groups, and MDAO, I would not be sitting here today, I’d be dead. They taught me how to have a plan to stay alive.
As a young child I was sexually abused and that brought on a lot of other conditions, such as anxiety and depression, and a feeling of alienation. I’ve never really felt like I belonged among people. I never gave it much thought, just figured that was the way people were. I self medicated in high school and drank a lot of alcohol to get rid of the anxiety so that I could communicate with people.
When I went to university, I got a diagnosis and some medication and almost immediately I felt all this heaviness just drop away from me. I was able to see everything around me more clearly, and it was the first time I felt like I was actually alive. But my treatment while at university was only intermittently successful. I was definitely not in recovery and I got to a point where I really didn’t see myself living in this world. I made a decision to take my life after my parents passed away so I wouldn’t inconvenience anybody.
After a couple of hospitalizations, I went to CAMH and the psychiatrist there said she believed I could live a better life. I didn’t believe that but I trusted her and just did what she wanted me to do.
I went through the programs that she suggested, and it gave me tools to cope when I was feeling extremely depressed or anxious. But I still was just meandering through life until I came across WRAP (Wellness Recovery Action Planning). There I learned about self-determination and self efficacy, and I really felt empowered to do things and take charge of my recovery and my life. With that, I kept looking for more recovery based workshops, and now I have my facilitator’s certificates for Pathways to Recovery, WRAP, and I attended the Like Minds facilitation workshop.
While I was at CAMH, there was a tour of the MDAO. I went along and saw all the flyers for their interesting programs so I signed up for two of them, Drumming and Stand Up. Those are really fantastic programs. I met people from all different backgrounds who had so much to offer me in terms of life experience. Through them and the programs themselves, I learned to think of myself in a better light.
When I was doing Stand Up, I thought, “Why don’t I volunteer here?” To me, this is now like a second home. They don’t treat me like someone who is a second- class citizen, or on their way to becoming fully developed. They just treat me as a person with ability. They validate me when I come here.
Three and a half years ago I was living in a dark basement room, because that’s all that I could afford on Ontario Works, and I was right beside the bathroom with a toilet that always overflowed, so my room stank of feces and urine. That was probably the lowest point in my life. The person Michael, who had a family and went to school, was a stranger, a shadow. Comparing that point to being here where I’m doing so many different things is kind of amazing. It’s hard to believe that I was that person.
I really believe in recovery. I’ve been facilitating groups, and I have a bi-weekly group here. I’ve seen so many people who have recovered so tremendously. It’s unbelievable that they were the same person that they were the previous year, so I know it happens all the time and I really want to be a part of that.