‘My Uncle, Me, and Psychosis’ by Janet Stewart

My Uncle

 

Illustration by Andres Garzon

 

I’ll always remember when I was three and stepped up onto a new sidewalk that was too high for me, almost to my knees. I can still do it now, figuratively. My uncle held my hand and helped me up; my mentally ill uncle, my favourite Uncle Lloyd. He’s still holding my hand now: we shared the same genes for psychotic disorder. I didn’t quite inherit the destiny of isolation and rejection he experienced. He lived very much alone and my family never visited him.

Psychiatry had improved slightly by the time I came under its care: there were antipsychotics. I mothered my daughterhis child died a blue baby in England just after World War II, which may be what set him off in the first place. He came back to Canada without his wife, behaving strangely, painting the rooms of his family home in Rivière-du-Loup in bright pastels. I was told that it was shell shock from the war. I doubt he ever got a proper diagnosis or medication.

As my predecessor, my true family roots lie in him. My father told me, “Late at night, he used to walk the streets of a small town where he lived near the Veteran’s Hospital.” I wonder how he knew that. He worked on oil paintings at Gran’s place when I was very small, but I’ve never seen any of his works anywhere since. By the time I felt a need to learn more, Gran had died, and no one else knew much about him.

In 1989, I had my first episode of psychosis at about the same age he did, at 33. I had also just arrived back home in Montreal after working overseas. During that first episode, when my daughter was two, I talked my way into a Master of Science program: Virology and Immunology, mainly because I thought I was a genius. I didn’t tell anyone that I thought I was a genius because I believed that I was on a secret mission to come up with a cure for HIV. I felt at home at the Institut Armand-Frappier in Laval and was proud of its tradition of vaccine production and research. It was only after six months into the Master’s program that I was finally diagnosed with psychosis and medicated, and I decided to finish the degree even though I realized that I am not a genius.

I left in good standing with the publication of an original contribution. That led to enrollment in a Ph.D. program at McGill University, where I didn’t fare as well. I didn’t feel accepted there and became depressed. It ended in another episode of psychosis that put a stop to the Ph.D. in 1994. Then, I supported my daughter and myself by eking out a living as a freelance scientific writer, bogged down by the heavy medication. My love for my daughter was my reason for getting up in the morning and overcoming the curse of inertia caused by the antipsychotic medication until, in 2003, I was worn down by a third episode of psychosis struck that lasted five years.

 

2003-2008

When the third episode was building in me in the autumn of 2003, I got into an argument with my father, which I had never done before. It was over why we had never visited Uncle Lloyd, his brother, and why nobody had told me when he died. I asked where he was buried and when his birthday was, and my father didn’t even know. My mother remembered what cemetery he was buried in. So, on the 60th anniversary of D-Day during the spring of 2004, in full-blown psychosis, I went to the Field of Honour Cemetery, where a tent had been set up by the Last Post Memorial people. They looked up the number of his grave for me. R. L. Stewart was clearly marked on the cracked gravestone, with the wrong year of death. I left flowers.

His full name was Raymond Lloyd, and I never would have found his grave if my father hadn’t told me that during our argument. I must be the only family member to have visited his grave after his funeral,  although he had five brothers and two sisters with 18 kids among them. I’m probably the only kid in the family to hold his hand or to ask my grandmother what he was doing when he talked, though he was alone. The only one who would ask her when he would visit her next, the only one of his nieces and nephews to remember him with fondness. He would silently mouth words in a conversation with empty air. I remember the incredulous look on his face when he did. It was as though some arbitrary, crushing injustice was being handed to him by the person he was talking to, and pleading with, although nobody was there.

I was six or seven when he died. In the fall of 2003, I wished I could go back in time and talk to him. I felt strongly that I could get through to him even in his psychotic state and have meaningful conversationstreat him like a sensitive individual, listen to him, make him feel I’m there, find something to laugh about together.

I wrote a little piece about my recollections of him, what I would say to him if he was alive: “Life is better now for people like us.”  I sent it to the members of my immediate family.

I wasn’t aware then of the dire circumstances many people with schizophrenia live in today, nor did I foresee my own homelessness.  My copy got lost along with almost all of my other belongings during the last bout of psychosis and homelessness, but I did manage to save the handout from the Last Post Memorial with the number of his grave written on it. I can find his grave again.

I fought off treatment with antipsychotic medication for five years, even demonstrating in court that I did not constitute a danger to myself or others. One of the tenants in the slum I was living in threatened to kill me, so I moved into another slum to get away from him, making trips across the street loaded down with the few belongings I had left. And so it went when I was psychotic: escaping real or imagined threats, abandoning my possessions bit by bit, one crisis at a time, until I no longer had a place to live.

I finally hit the wall and ended up homeless in 2008. I was sent by ambulance to psychiatric emergency by the workers at a women’s shelter and finally came out of the psychosis a few weeks later.

 

2015

Now it’s autumn, about fifty-five years after stepping up onto that sidewalk with Uncle Lloyd and seven years after stepping off the psychiatric ward for the last time. No more delusions, and no more slums for me now, either. I am back among the living, with my old friends, a new career, out of poverty, misery, isolation, and mental instability.

Supposedly I have recovered, I’m often told that I’m amazing and that I inspire people, but don’t feel particularly inspired. Most of the time I hardly feel anything, I don’t feel like myself, I’ve just been hanging on. I don’t cry, I don’t laugh. I’m told I’m doing well considering. I add, “only compared to before.” I silently complete the thought: I am doing well for someone with schizophrenia. It’s as though people with schizophrenia should be content with a quality of life that would be unacceptable to most.

But I’m a success story according to the professionals, probably because I work. No matter what I tell her, my psychiatrist doesn’t seem to understand how slow and painful it is, that something is wrong, or what really keeps me goingwhich is, that I’m convinced I’ll eventually feel good, feel right, and really laugh again . . . feel like myself. 

I’ve recovered from psychosis before, that’s why I’m so sure. It took me six years to feel like myself after the episode in 1994, and this last episode was much, much worse. So, I just keep learning to function better, until I can start feeling again.

Autumn is my favourite time of year. These days, I walk in beautiful weather to the subway on my way to work. I pass the little huddle of Caribbean stores at a corner near my apartment.  I wonder what that restaurant is all aboutmostly men and some gaudy women, drinking outside on the sidewalk on Saturday nights with music spilling out. They seem to be having such a good time that they take no notice of me when I walk through their universe.  

Nelson Mandela Park: in the summer, the older men sit on the benches talking and watching the passersby. Cars pull up blaring reggae, and the few women are all dressed to the nines. I can’t imagine feeling comfortable or welcome sitting in the park, with only the odd woman there and no white people. It’s a public park and I know nothing bad would happen if I did, I just feel that there are invisible barriers that I would breach. I wonder about the story behind naming the park after Nelson Mandela. I feel that he is part of me too.

When Mandela died, in the late autumn of 2013, there were a few dried-out bunches of flowers strewn over the dedicatory plaque, a few candles, trees bare, dead leaves blown across the frozen ground. The park was abandoned and desolate.

Slums to the east and slums to the west of me.  I live amongst a few blocks of middling, trimmed hedges, mowed lawns, and working peoplemostly Asian, brown and black. I’m a member of a visible minority in this neighbourhood, and oh! a member of an invisible minority, an often reviled and hated minority. But I forget about the schizophrenia more and more.

I tap “Create Document” on my iPad, then on “Blank Document,” and bring up a blank screen entitled “Blank 3”. I love the blank page, but have no notion what Blanks 1 and 2 are! I don’t notice or remember much. There are loose ends in evidence all over, the Tupperware I didn’t put back in the cupboard after cleaning it months ago, the shards of a ceramic dish I haven’t glued back together yet, the dead DVD player I’ve been meaning to take to the recycling depotbut I’ve misplaced the address. The dust. Is it only the side effects of the antipsychotic?

I’ve been on and off antipsychotics enough times to know the difference. It’s huge. The people who rejoice in telling me that I’m doing so well on meds don’t realize that I live in a prison of fog. Antipsychotics do get rid of my delusions, but they wipe out a lot more than just psychosis, things like having some oomph and feeling alive. I’ll never cease to hate those pills. They’re a necessary evil, a witch’s spell, almost as destructive as the spell I’m under when psychotic. Added to that, five years of paranoia and delusions thoroughly fried my brain, too fried to work in science, which I was happy doing.

For seven years, I’ve been getting used to people again, no longer so put off by the demands and deceptions required in order to socialize. People seemed so petty and fake in my initial forays into the working world when I came off the street. Then reading, using computers, driving, cooking, working, even just getting a grip, all had to be re-learned.

I work on a mental health team that cares mainly for those most severely affected with schizophrenia, doing home visits. I work with people who live in isolation and misery, in slums that smell, often with cockroaches and bedbugs and filth, the only lodgings they can afford on their meagre disability pensions. I’ve been there myself, partly why I was hired. Having experienced homelessness was also considered to be a plus for this job! Times are changing.

The team’s goal is to keep our clients stable enough to get into a routine, to help them care for themselves and live in the community. I shudder at the thought of how most will end up in old age, with health and quality of life deteriorated from decades of neglect and poverty.

Claire is around 50. Many of her teeth are rotting and coming loose. She refuses to go to the dentist though it’s covered on her disability pension. “Nobody likes to go to the dentist,” I tell her. I had woken her up in the middle of the afternoon pounding on the door to her apartment. “I’ve come for our appointment to clean your place together, remember?” I say though I know that remembering appointments is the furthest thing from her mind. She goes back to bed and soon I can’t shake her awake again. She’s on the verge of being evicted because four times she’s left things on the stove that started fires. The team decided to take out the stove’s fuse and I went with Claire to buy a slow cooker that shuts off automatically.

According to my team, my work is “superb.” I get through to people that the other members of the team can’t. One, in particular, doesn’t respond to medication:  he’s delusional but he listens to me. Sometimes. He doesn’t like the team; I think he finds it intrusive. But he knows he needs people he can depend on and that his parents, whom he currently relies on, won’t live forever. That much I’ve got across to him in his more lucid moments. But he still doesn’t like the team. He wants to get laid and I’m way out of the right age range so I’m not a target. The younger women on the team feel it though.

I’m beginning to realize that I have the wrong attitude for this job. My co-workers are dedicated to making our clients’ lives the best they can be. Buried deep in me is the knowledge that I barely escaped the fate of my clients and still only just manage to take care of myself properly. don’t have much in the way of solutions for our clients, as I don’t for myself, either. “Just force yourself to do things, until they’re second nature. It may take years. You have to force and push yourself for the rest of your life, in fact: it’s a chronic illness, a disability.”

That’s what I feel like saying when I see some of them.  I also tell myself that when I get home to my own dusty, cluttered apartment that I am so careless about. But I never tell my clients that they need to push themselves, it’s not the recommended approach. Most of them aren’t ready, according to the recovery model of peer support. Will they ever be ready? I’m supposed to be the bright light of recovery and hope, an inspiration. Talk of the miracle of recovery, perhaps, when I really don’t believe in miracles. Give hope. Be a role model. I don’t think my clients would want the kind of life I lead now.

The suffocating silence that surrounds schizophrenia stifles me too. My friends don’t ask me what I did during those five years of delusions, and they change the subject when I bring up my present challenges, though I listen to all the details of their ailments. Nobody sent me flowers when I finally ended up in the psychiatric ward, no Get Well cards, and only my daughter visited me there. People had given up on me, had stopped contacting me, and had moved on during the five years I was psychotic. I didn’t exist for them anymore.

“Now you’re doing great, you’re okay now,” a friend said, as though all those traumatic experiences don’t take a toll.

There’s too much, it’s too big for me: five years of psychosis, the medication change that caused the episode (a medical error), homelessness, emptiness: no connection, no drive, no motivation, no direction, no feelings, just groping in the dark for so many years, no laughter, no joy, no pleasure. Not even any tears. All these thoughts and feelings crowd together, I want to get them all out, but they leave me paralyzed, and I can’t find the words to answer him. I am also responsible for the silence that I hate so much.

Where to begin? In the full knowledge that the people around me don’t want to hear or think about it. Instead, “You’re rocking!” a friend said when I got the job on the mental health team. But when I told her I never feel like doing anything, that I have to force myself to do everything, something it’s hard to admit to because I feel so guilty and ashamed about it, she quickly changed the subject. Friends only want to hear about the successes. “It’s too hard to hear about how much you’ve been suffering,” she finally told me one day. Another friend told me, “Just don’t talk to me about mental illness.” A very good friend.

Uncle Lloyd was even more hidden behind, what I’ve come to consider, a wall of fascist silence. It has denied us our identities to the point that I am probably the only person alive who ever thinks about him. As a family, we learned nothing from the way he lived and died. He was erased by the silence. So far, I haven’t broken through the walls around my own schizophrenia. I’m waiting for the right opportunities, the right moments, the right words, the right audience. So I write. I’m starting by writing this. I hope that someday we’ll all know what to say and how to say it.

 


JANET STEWART works in the areas of mental health research, teaching, and care and in scientific writing.

Copyright © 2020 by Janet Stewart. All rights reserved.