Tracy's Story

So who am I and what is my story?

Growing up, I was always an exceptional student with a tendency for perfectionism. I graduated at the top of my high school class. At one point in my adult life, I was working two jobs and one of my jobs became very stressful because of being understaffed. By the summer of that year I had my first psychotic episode.

I had not used drugs, but I did have an aunty who had schizophrenia. To date I have had four psychotic episodes, and I also have a diagnosis of schizophrenia.

I have experienced many different symptoms including a variety of delusional beliefs. One was that I felt something really bad was going to happen if I did the wrong thing; that I was at the center of a big experimental conspiracy and I absolutely had to do everything right. I would sometimes become almost nonverbal and frozen as I tried to process reality.

By my third episode, I started to have hallucinations. I would hear things inside my head – sometimes sounds and sometimes voices. I thought that I was getting them “beamed” to me by satellite.

I was also getting visual hallucinations that looked like transparent, ghostlike figures. I would fight the transparent figures, alone in my room at night. I wanted them to leave me alone, so I would punch and kick at the air. (I never saw ghosts in public, so I never acted this way in public – keeping up the façade that I was ok.)

I experienced tactile hallucinations – feeling things on the skin or around you that aren’t really there.

When I would be in public around children, I was really worried that they were in danger. Specifically, I thought that someone wanted to dig their eyes out. So whenever I walked by a child, I would say in my head “No one digs their eyes out,” as if my words could protect them.

At my worst point I was living in a state of constant fear and paranoia, absolutely unable to trust other people or reality as a whole.

While my symptoms were getting worse, my life was falling apart. I lost 5 jobs due to mental illness. I also moved 4 times because of it; mostly because I couldn’t trust my roommates. I had problems in almost all of my close relationships – with family, with friends, and with partners.

It took me 4 years to get diagnosed, but eventually I did end up in the hospital. I stayed there for a month and started on medication. But the journey did not stop there.

One of the struggles that I experienced in my recovery was adjusting to life on antipsychotic medication. I feel like we are all made up of many things – thoughts, feelings, beliefs, values, opinions, and interests. Imagine a white board with all the important things about you written up on it. At my most acutely ill, everything about me was influenced by the illness. But my medication took it all away. It was like my personal “white board” had just been erased, and I was left an empty shell of a person.

Instead of positive symptoms, I now had negative symptoms or side effects. I was slowed down in movement and speech because of the sedation. Poverty of thought, poverty of speech, no motivation, no energy, depressed mood, loss of interest in life, flat affect, the need for way more sleep. Some of these symptoms have gotten better over time and as my medication was adjusted.

In the early stages of my recovery, I would stay in bed all day with the shades drawn and try to sleep the illness away. I would wake in disappointment, my life still in shambles. I had suicidal thoughts for the first year of my recovery, but I never made a serious plan to act on them.

I began to educate myself about my illness. I would do research at home and attended the early psychosis program here in Winnipeg called EPPIS. This was important as it has helped me have insight as to when my symptoms are coming back.

I feel fortunate that all of the relationships that were tumultuous at the time of my psychosis have been repaired. I can see how a person with psychosis/schizophrenia can easily lose their support system.  When I go out with my friends, I have a better time than I did in the early days when it was difficult for me to have a conversation.

The Manitoba Schizophrenia Society has helped me in my recovery to rebuild my life. I think part of having this illness is that it can feel like your life gets ripped away from you, and it is up to you to get it back.

I eventually started volunteering with the Society. I helped to facilitate the “Hearing Voices that are Distressing” workshop – a simulated experience of the audio hallucinations of schizophrenia. I also began sharing pieces of my story and speaking to high school psychology classes.

Volunteering was a good first step that has led to me working for the Schizophrenia Society, in the role of a Peer Support Worker. As a peer support worker, I’m not a counselor or a therapist, but I can offer the perspective of someone who has lived experience with the illness and with the process of recovery.

As I continue to help others, I feel that the years that I spent dealing with illness were not wasted – indeed they were a valuable learning experience. I am proud to have a supportive workplace that hired me, not in spite of, but because of, my lived experience with this mental illness.

I really struggled with writing this because I don’t necessarily see myself as doing “well”. I feel like I exist now but I’m not alive in the way I was before. I feel like the part of me that creates meaning out of my experiences has been altered, and every day feels the same.

I have to tell you, that recovering from schizophrenia is hands down the hardest thing I have ever done in my entire life. I have been recovering for about seven years, and I have struggled, every day, for the past seven years.

BUT I can tell you that I struggle less today than I did when I was first diagnosed. I struggle less now than I did when I was acutely psychotic. And my hope is that as time goes on, I will struggle less and less. I am by no means complete; my recovery is a work in progress.

There are many other people, just like me, who turn to mental health organizations like MSS to try to get back on their feet again.

Your contributions help us keep our programming going, and ensure that it remains free for the people who need it: like our peer support groups, family education, public presentations to high schools and universities and first responders, one-on-one consultation and various other workshops we offer across Manitoba.

I would like to end with a quote that I wrote shortly after my most recent hospitalization as it sums up the process of recovery for me: “Sometimes life gives you lemons. And sometimes life gives you a handful of gravel, or grass clippings, or heavier things, and says, ‘Here. Make something of this too.’”