The Side Effects are Worth It: Why I Will Never Stop Taking My Medication

For those interested, all books mentioned are available worldwide through Amazon.

Photo by Oscar Ochoa on Unsplash

I am 54 years old, and I am starting to experience cognitive decline. I have started to do little, stupid things like walking into the kitchen and forgetting what I wanted to do or get there. Often, I will be trying to listen to someone and have something related on my mind, but by the time the person is done speaking, I draw a complete blank as to what I wanted to say. I have been learning some incredible tricks to help deal with this. For example, I often do online classes or support groups, both as a moderator and as a participant, and when I think of something I want to say when my turn comes, I write it down in my own form of shorthand. This is a time when I often become acutely aware of the side effects of my medication because my hands shake enough to make my writing illegible.

I am a huge believer that humans can adapt to just about anything with time. I had a work friend who told me he was once posted to the Arctic while serving in the Canadian Armed Forces, and some strange orders came in transferring him to Cyprus, in the middle of the Mediterranean, in the middle of winter. That came with a temperature difference of minus 40 degrees Celsius to plus 35 degrees Celsius. The first thing he did was go to the doctor and explain his situation. He was given a hospital bed that was the closest one available to the ice machine and told he would be sick for a week. I experienced something similar when I moved from Vancouver on the coast to Edmonton in midwinter, and if you’ll pardon the pun, I shivered and shook like a leaf for weeks.

There are two factors involved in becoming adjusted to something. One is that your body will naturally adapt over time, and the other is that you learn strategies to deal with things like shaking hands or being overly affected by a new climate. I often travel to different climates now, and I have learned that regular swimming—where I spend time shocking my system by going from the extreme heat of the hot tub or sauna to the extreme cold of showers and the cool water of the main pool—somehow improves my circulation. Even in midwinter, I am able to go out in the cold wearing just a light jacket.

Still, with the many side effects of the medications I take, which include:

• the antidepressant Prozac;

• the mood stabilizer Depakote;

• a bi-weekly injection of Fluanxol;

• Clonazepam (yes, a known benzodiazepine);

• Cogentin, which is supposed to help with side effects;

• along with Metformin for diabetes, a cholesterol pill, and high blood pressure medication,

sometimes I wish I could experimentally go off each one separately and monitor which side effects they cause. Instead, I let my psychiatrist and God do the miracle work.

Some of my side effects include constant thirst, brought on by dry mouth, which in turn affects the health of my teeth. Then there are the tremors, or shaking hands, which Cogentin is supposed to eliminate but doesn’t work fully to control. They make my handwriting horrible and are embarrassing when people notice them and either ask about them or think I am extremely nervous or hung over. I also need a lot of sleep, yet the sleep I do get isn’t always as refreshing or restful as I would like. Perhaps the worst part is the loss of balance I have, which makes people think I am drunk and definitely keeps me from doing something I once loved: riding a motorbike.

Photo by Nazmi Zaim on Unsplash

But what I really wanted to discuss is what keeps me taking all these medications, and why I won’t ever stop them. The first aspect of the situation is that they work. I don’t hear voices, although I am still sometimes prone to manic episodes, which can make it very difficult for people to talk to me or be around me. I am so glad I don’t drink alcohol anymore because it would often send me into heightened feelings of mania followed by deep feelings of regret.

What I have learned about my own illness I actually first learned from Alcoholics Anonymous many years ago. My favourite part of the book they use for meetings and give to newcomers, talked about all the benefits and joys you accumulate the longer you stay away from alcohol, and that we can only keep those gifts by giving them away whenever we have the opportunity.

I didn’t continue attending AA meetings after a year of going every day, but I have made it my goal to help as many others with schizophrenia as I can by giving away my knowledge, financial support, my writing, and my time. To that end, I have written three books about my life journey, including two conventional memoirs and one very unique one. I also contributed to a book I helped distribute called Awakenings and have written many articles and essays on the subject, some appearing as far afield as The British Journal of Psychiatry and Schizophrenia Bulletin.

One of the things that makes me very happy is that there is an almost limitless number of places and people I can continue reaching out to. Recently, I have started booking more speaking engagements where I hope to sell my books and eventually earn professional speaking fees. For now, though, I am grateful for any opportunity to work in the field.

Currently, I have a job with the Schizophrenia Society of Alberta, which helps me come out of my isolating apartment (isolation is practically a death sentence for people with schizophrenia) and get out into the public. We present information about different aspects of mental health and how to help someone in crisis, and then another presenter and I share our stories of lived experience. I have now been doing this for over 10 years, and even though I am only paid minimum wage, it is a huge part of what keeps me personally aware that I have a severe mental illness that requires treatment.

Photo by Romario Roges on Unsplash

When I’m not doing that, I am often searching for places where I can share my lived experience through talks or articles (yes, and I also devote a great deal of time and energy to this Substack). This has also led me to volunteer for The CureSZ Foundation, a nonprofit organization in Ohio that serves people with schizophrenia and their families.

There have been many times when I felt like I wasn’t doing enough, when I felt I was stagnating. Despite working as a peer support facilitator, a telephone support worker, and a presenter, for The Schizophrenia Society, I wanted to do more. Without asking for any extra money, I have been visiting places such as mental health clinics, psychology offices, and even my local bank branch, explaining the services the Schizophrenia Society of Alberta offers and encouraging them to book presentations.

It may seem funny that I would approach my bank, and to be honest, I was pretty apprehensive at first. I expected the bank manager to dismiss me rudely, but I wanted to try. After I finished telling him about the SSA, he was almost in tears.

“I’m so glad you’re doing this,” he said.

I was touched but asked, “Why do you say that?”

“Because I have a daughter who has schizophrenia.”

This bank manager turned out to be an incredibly kind man. I often stop in to give him books and other literature about CureSZ and the SSA, and I like to consider him a friend.

The honest truth is that until we step outside our comfort zones a little and openly talk about treatment and the stigma surrounding mental illness, we are never going to realize just how many people it affects. Almost everyone will experience some form of mental health challenge during their lifetime, and many of those same people will also face the tremendous challenge of raising a loved one with a serious mental illness.

I should say that for quite some time I have been tormented by memories of my last hospitalization—not the one I wrote Alert and Oriented x3 about, but an earlier one. I was not given the medication I needed. I was treated very poorly and placed in isolation rooms, which was exactly the worst thing that could have been done to someone with schizophrenia.

I have been finding a way to process those awful memories through a therapy called EMDR (Eye Movement Desensitization and Reprocessing). I am far from being a doctor, and even further from being an expert on EMDR, but I am now listening to my second audiobook on the therapy, and it has been lifting a huge weight off my shoulders. I bring up a traumatic event, visualize it, and then use processing techniques such as rapid eye movement or rhythmic hand tapping while continuing to visualize it. Each time I revisit one of these memories, it seems to become just a little less stressful. For a long time, I kept reliving the many painful moments in my life—from relationships that were destroyed, to friends I lost, to receiving a letter from people I once considered friends telling me I couldn’t attend a high school reunion.

For anyone dealing with anxiety, depression, harsh memories, or even unexplained phobias, I would strongly recommend looking into EMDR. Some people begin to notice benefits surprisingly quickly with a trained counsellor, and reading or listening to books on the subject may also help prepare you for working with one.

As always, I would love your feedback or suggestions about how you feel this blog is going.