A Problem, A Community, A Vision Of Change (for those experiencing mental health stigma)

This is a copy of an essay I recently wrote and sent to The Stanford Social Innovation Review, which they declined to publish in their magazine.

Photo by Angèle Kamp on Unsplash

I know it may seem a bit lazy, but the following essay was rejected for publication but I still feel it has a lot of merit that could benefit my readers. Just as a quick note, it is my 54th birthday on December 2nd and it would be so amazing if, at this yearly milestone, if I could get one or two paid subscribers, or even someone pledging a gift of any amount you feel comfortable with. I have had so much good luck with my writing and I have been getting praise and recognition, but I feel it is important to note that writing can be a very solitary activity unless you connect with your readers. This solitude can really wear a person down and wear them out, so in reality what would be even better than getting a pledge of a few dollars would be something as simple as best birthday wishes and a compliment or positive comment about something you like about my blog. Best to all my readers, but extra special mention to my co-worker Michelle S., who took time out of her evening to write and catch up.

A Problem, a Community, a Vision of Change

By: Leif Gregersen

Schizophrenia is a chronic and highly debilitating illness that to this day causes those who are diagnosed with it to face highly damaging stigma. A colleague who I worked with giving educational presentations about schizophrenia, (my current job for over 10 years) often would mention that in the recent past, cancer was a subject that was just not discussed in polite company. People would avoid the topic, consider it too dark and fatal an illness to have conversations about, but this changed.

In more recent times, people started talking about cancer. They would discover how it was detected, what the people were going through. These conversations helped large numbers of people to better understand the importance of awareness and many lives were saved. Also, as more people became aware that cancer could be treated, large amounts of money was raised for treatment and research. I recall ad campaigns as a child which changed the public conception of the illness and gave hope to the hopeless. This phenomenon is something I feel could happen with mental illnesses like schizophrenia.

I have a friend named Tabitha who had been afflicted with schizophrenia in college. All her family could do was watch her world crumble. She lost interest in school, gave up a promising side career playing the cello. Her illness brought on paranoia, which her to refuse all contact from her parents who desperately wanted to help. Practically giving away the last of her money prompted by delusional and grandiose ideation, she soon went from being a beautiful young person with the world at her feet to sleeping in alleyways, bathrooms or libraries and living off edible garbage for years before there was an intervention so she could get treatment. Now, her parents could finally help her. She experienced recovery, but not a full one. Even her doctor had told her parents not to expect her to return to work or school or do anything but avoid all stress and continue to take medications whose side effects left her in a zombie state.

Thankfully, after a year of living a barely tolerable existence, Tabitha found a new doctor who went the extra mile for her. He found a medication that allowed her to function and helped her to reframe her ambitions. This led to her returning to the cello and completing her degree. Tabitha now is a person who has fully recovered from something many would have thought was akin to a death sentence. She now works for a nonprofit that serves those living with schizophrenia and their families.

In my own situation, I was hospitalized after a very serious mental breakdown at 18. I had no idea of what stigma was. One of the things that happened while I was ill was that I walked off the job while working at a local grocery store. At the time, I loved my job, greatly enjoyed being part of a powerful union and was making better money than anyone I knew. While experiencing my first ever episode of psychosis, I was unpacking a pallet of boxes, loading them onto a cart to bring to their respective places in the aisles and I just started thinking that I didn’t need money. Even though my school days were over, I thought to myself that all I wanted to do was to go to school and play sports. I also felt I didn’t need the stress of working a job where I had to constantly deal with a supervisor who promoted people ahead of me because of my age. There was also the constant threat of being fired by a head supervisor who was simply a very nasty human being. At the time, I desperately needed the job and the income it brought in could have helped me leave the toxic situation I was going through at home.

Shortly after walking off the job, a few other episodes led me to be certified as a formal patient in a psychiatric facility. I had a lot of delusional thoughts but with time, medications worked incredibly well and after perhaps 6-8 weeks of treatment I stopped hearing voices and stopped having delusional thoughts and ideas. Not understanding stigma, I returned to the grocery store and filled out a job application. I stated that I had been treated for a mental health condition with medication and occupational therapy and that walking off the job was part of a medical condition (a mental health medical condition). I somehow thought my managers would accept this and understand I was ready to return to work. I heard nothing back from them. I simply had no clue that a person can’t just tell someone they are mentally ill, although they may be in full compliance of treatment.

A good 11 years went by, and many things happened. I lived for a long time very isolated and reeling from the side effects of medications, punctuated by periods of me lowering or stopping them and ending up needing to return to the hospital for treatment for psychosis or depression. Until a major change happened, the direction my life was taking was a very harmful one.

At 29, I entered the psychiatric hospital and wasn’t released for six months. It was a horrible time, and it didn’t seem to allow me to make any progress. After all that time, I had been broken. I didn’t challenge anyone because in my time on the locked ward, I had been trained to think that if you challenge someone in any way, they will assault you, inject you with major tranquilizers, and lock you in an empty isolation room. I was a mess, but the medications did allow me some sanity. The most important thing they allowed me was a chance to accept my illness despite that most of the people I had as friends no longer wanted anything to do with me.

Accepting my illness meant one critical thing: I was now ready to live in community with others who lived with a mental illness. I went to a very well-run group home and for the first time since I became ill, I had regular food, regular sleep, regular medications, as well as activities such as movie or sports nights. But perhaps most important was that everyone in the group home (around 20 males) also suffered from a mental illness. It was in this environment that I was able to finally make some true friends, always have someone to talk to, and feel accepted despite the differences in my brain chemistry.

Because I was a person with lived experience of mental illness who still could function well, many opportunities soon came up. Despite that I had no degree, I was pegged as being a good teacher. I taught poetry and creative writing classes, and I resumed work on a project to write a book about my teen years living with a brain destined to fail me which I eventually completed.

Then I found the Schizophrenia Society and at last I felt as though I had come home. One of the first things the staff did was encourage me to take a recovery journey class. Once I went through it, they decided I had done well enough, plus I had experience teaching, so they had me facilitate the next class, and the next. They even paid me. There were so many opportunities that came up in the years to come. One of the foremost things the Schizophrenia Society does is give educational presentations to any group that requests them. I have spoken to medical students, doctors, entire police recruit classes. Even full lecture halls at universities. I now also work in peer support to people who are isolated or live in remote areas and I have a province-wide online support group with people who have come to be almost family.

The relevance of the journey I took to recovery isn’t just about schizophrenia. It is about people who see a need to help a segment of the population that share a common denominator. It could be single mothers. It could be young women trying to escape prostitution. The initial factor is that a leader must have the initial vision, the core goal of the organization. Perhaps more critical is these people must be made to see that, with guidance, they can recover, largely because they all can help each other. A support group can be formed; funds can be raised. The Schizophrenia Society I work for even has three housing units that each help around 10-15 people who would otherwise be hospitalized or unable to take care of themselves. If you can house these people, you can keep them out of a hospital, jail, or early grave. The most important part: if there is any afterlife, or karma in our short existence her, you will be able to honestly say you have made the world a better place and a reward, here or in the next world will be waiting.