Picking up the Pieces

The war had been raging in my head for 5 years. I had spiraled downward to living in slums that were dens of drugs and prostitution, ending up homeless. My 16-year-old daughter couldn't associate with me unless for her own sake, I took medication. The rift between us completely ripped me apart. I believed that medication was a condemnation to a slow death, and thought that, to my horror, she had come under the spell of my family, human organ gourmets and others engaged in torture and human trafficking. A woman working at the women’s shelter where I was staying sent me to psychiatric emergency in an ambulance. In the hospital, after being put into restraints and isolated multiple times, I gave up my 5-year battle against medication, psychiatry, and most of the outside world. I told the psychiatrist, “Do whatever you want with me.” He was quick to respond by injecting me with an antipsychotic. After a couple of weeks, he said, “You’ll be discharged next week, so you’ll need to find an apartment. If you don’t find one, you can go back to the shelters.” He told me, “You’re capable.” I was not, but I didn’t want to go back to the street. I rented a place that was more than double what I could afford, for 1 month, to give myself time to find decent housing that would be covered by my disability pension. During that month, the shadows of delusions trickled away as I realized that I’d have to start my life all over again, at age 52. There was little money left over for food, so I ran the few blocks to Chez Doris, a drop-in for destitute women that provides free breakfast and lunch every day. Somehow, running was easier than walking. It was easier because suddenly I couldn’t walk straight, put 1 foot in front of the other. I told the same psychiatrist, “I can hardly tie my shoelaces or wash my hair.” He raised his eyebrows and, without a word, halved the dose of my antipsychotic. I guess the dose was too strong, although he didn’t say so. Regaining my voided identity started with a stay with my mother and my brother. For the longest time I was grateful whenever I went to the bathroom, just for having a bathroom to use. But in my ongoing war, I had turned the artillery against myself. In my delusions, I had been a heroine on a mission; now that I was back on medication, I spent most of my days lying in bed, hating myself with a vengeance. Grief? Who knows? Then, one day, when I returned some books to the local library for my mother, I used her card to take out the novel Life of Pi. I read about Pi sitting in that lifeboat in the middle of the Pacific when a ship went by and didn’t rescue him. He had just that small boat between him and drowning, him and the sharks, on a long, solitary journey across the Pacific that he populated with the fantastic imagination of an adolescent. A true story, actually. I felt a bit like him. My delusions were gone, but they had taken me on a fantastic, terrifying, solitary voyage that destroyed me and everything in my life. I had reached dry land, but my existence was like a little puddle that was hardly enough to sustain life. I was housed and fed and that was about all there was to my days. “Just be happy,” my new psychiatrist told me, the summer following my release from hospital. Later on, I would think of what she had said as I sat in the park, watching the yellow leaves falling, smoking, and wondering how my life could go anywhere. Time was passing. Happy? I could hardly feel anything! I wasn’t particularly sad, either. There were just waves of fear of an unidentifiable, impending doom. No gut feelings to rely on. I couldn’t go back to work in science with my feeble thinking and failing memory. I hunted for a job, tried to get used to being around people, and to learn to use a computer again. Nothing came easily—even the dishes I’d cooked for years didn’t turn out. Shock upon shock because I couldn’t seem to do anything right. And I blamed myself. Now I know it was probably partly due to cognitive impairment. And for someone like me, that’s like an injury for a professional athlete, who wants desperately to know if it will be permanent. Will I ever walk again? Run? Run a marathon? Much later, I read about cognitive impairment in people with schizophrenia and reflected on brain plasticity: one can build new neural pathways around the neurons that have died, or are blocked, or whatever psychosis and medication do to them. That is still my hope: new growth. To figure out what it takes to get those nerves firing normally again, the synapses more reactive. All this time, my psychiatrist told me that I was “doing well,” that “recovery is gradual.” I felt like nothing, nowhere, nohow. Those vague expressions of encouragement were not helping. I dreaded the long years ahead that it would probably take me to feel better. After a previous psychotic episode, it had taken me 6 years to feel like myself again. This time I was starting out in worse shape, from less than zero. I gave up on myself for about a year, wishing that I’d be run over by a car, killed in an accident. I did most things because I knew that they were “good for me,” not because I wanted to. I had to force myself all the time. No way to live life! I knew from before that if I did nothing and stagnated, I would only get worse and never improve. I could only stand being around people for short periods. They had no clue about the bizarre, scary world I’d been living in and they weren’t asking. Their world was equally alien to me. But I didn’t want to continue living in poverty and knew that I needed a job in order to escape it. So I forced myself to work, forced myself to be with people. So much to re-learn, repeating tasks until I didn’t shudder with fear and anxiety at the thought of them. I knew I had to complete them, even though I felt numb and rudderless. The light had gone out in me and everything was such a chore without it. I had lost my oomph! I wondered if and when the light would come back on. When would I laugh again? Joke again? I was allotted 12 weekly sessions of cognitive behavioral therapy (CBT), which helped a bit with the negative thinking, but not with being clogged up and frozen inside. The pond: first it’s just mud, then puddles form and get bigger, then before you know it, they’ve all joined together and you have a whole pond to sail around in, a life, some direction. Water: where life began, and it began again for me. Well, not before I knew it, it seemed like billions of years, but all of a sudden I realized that I had a pond, not a puddle, to feed my soul. That was about 4 years after walking off the psychiatric ward. My daughter, now an adult, was getting closer to me—one puddle. I had begun to see my friends, too—another puddle. And I was living in my own apartment—another one. Working and networking in the area of mental health care and research, giving talks to mental health professionals and lectures to students in occupational therapy—trying to generate understanding about what isn’t understood, even by me. Eventually, I became a peer counselor. All these little puddles I’d been tracking around in had merged into a pond when I wasn’t paying attention. But there was still an undefinable feeling of emptiness in me. Outwardly, I was functioning better and better, and the professionals just didn’t believe me when I asked for help with negative symptoms and cognitive impairment. “If you can play Scrabble, you’re not cognitively impaired,” I was told. I was thinking: “You don’t know what an ordeal playing Scrabble is for me, I hate Scrabble, always lose, and just play to be with people. That’s a trial for me, too, and I don’t enjoy it one bit,” I should have explained, but the words didn’t come to me. My daughter said she was proud of me. A friend called me her “hero.” My nephew told me “You inspire me.” I was such a success story! “That’s great,” I thought, “but I feel like a lifeless stone.” I couldn’t express the feeling, couldn’t spit it out. I was tied up and gagged inside. Looking back, I wonder whether the professionals I dealt with were afraid that I would be discouraged if negative symptoms were discussed. It reminds me of how, in the past, mental health providers avoided discussing the side effects of antipsychotics. Just learning on my own that these negative symptoms existed in schizophrenia was a huge load off my mind: the lack of motivation, the apathy, and the inability to express myself—they weren’t from laziness, they weren’t my fault! And… they weren’t only from the side effects of the medication, as I used to think. Just months before the 7-year mark of recovery, I took the plunge and said to my psychiatrist, “I’m getting depressed,” which was true. “I just can’t go on like this.” My daughter had come to the appointment with me to back me up. The state I was in was unacceptable. My psychiatrist prescribed a mood stabilizer, and it nipped the looming depression in the bud. About 7 years after that last stay on the psychiatric ward, I finally began to feel like myself again. I may never come back 100%, but at least now I can think clearly and feel my way through life with enthusiasm and laughter at times, with joys and tribulations. I’m back among the living, not groping in the dark anymore. I’m lucky to have come back at all, but it was such a long haul! Most people want to know what is happening, and what will happen, to them when they are diagnosed with an illness or prescribed medication. Then they are assessed and, as deemed necessary, given rehabilitation, and accommodated at their workplace. Not people with schizophrenia it seems, and why is that? Is it going out on a limb to propose, as a colleague suggested, that there may be an element of post-traumatic stress disorder (PTSD) following a psychotic episode? Along with negative symptoms and cognitive impairment? When I worked as a peer counselor, I saw the same state of being overwhelmed, and paralyzed by it, in some of the people with schizophrenia I worked with. I suspect that the fog and numbness is from the massive punch in the head they get, not just from the medication’s side effects, but from cognitive impairment, negative symptoms, trauma, anxiety, the stress of having a chronic illness, and downright fear, all rolled up in one. You can often add poverty, isolation, and stigma to the mix, too. When they’re left in the dark with all this to manage, not knowing what hit them, and nobody understands, especially themselves, no wonder they sometimes just give up! I long for more understanding of what people with schizophrenia face, once stabilized by medication: more understanding on their part, on the part of mental health care professionals, and on the part of people in general, especially those close to them. For me, recovery was another long, solitary journey, with almost as much shock and fear at its outset as with the psychosis. Clearer understanding on the part of all concerned would go a long way to help. J.S. thanks Melissa Park, Susan E. Stewart, and Orly Estein for editorial assistance.

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