Many people with schizophrenia claim they are in recovery. I don’t know what recovery means because my illness can be gone for a few minutes, a few hours, but never a whole day.
Schizophrenia is like a body part. For example a finger, you aren’t always aware of its existence until it aches and then you are hyper-aware that it is a part of you and that something is wrong with it.
I could spend all day trying to come up with sentences, similes or metaphors for what it is like to live with schizophrenia, but in the end, you would simply get a flash of it, a small sense of it, a bit of understanding. That is why I have over four hundred essays on this blog, and I am still able to write about things relating to schizophrenia and mental illness. Although it isn’t all of me, schizophrenia is a large part of my experience and how I approach, interact, and exist in the world.
I frequently say, all the things that define me are many, wife, sister, daughter, friend, etc. but the whole truth is that schizophrenia belongs in there, too. Because as much as I am all of those things, schizophrenia clouds, and impacts each one of them. I am a sister a certain way because of my illness. I am a friend who cancels many dates because of my illness. My husband lives with symptoms I have every day. He talks to me when I am paranoid. He tries to calm me when I am overwhelmed by anxiety. He helps me monitor my medications, and he attends my doctor’s appointments with me.
I had my first psychotic episode at approximately twenty-eight. I remember what I was like, what life was like before schizophrenia. I find that truth to be surreal – something that is so much a part of my everyday existence, so much of how I see the world is not always how it was for me. I was a different woman before I became ill. I understand parent’s grief when their successful, athletic, happy, academically gifted (or whatever else) child all of a sudden turns into a different person. I understand their grief and their panic. In the first few months after their child is first diagnosed it may seem like that child will never take a shower again, or meet friends for coffee, or read a book.
The good news is there are many excellent medications out there, and if someone can keep from having episodes, they may be able to function at the level they did before the illness. I know during most of my thirties I worked a full-time job, volunteered on boards, had a wide network of friends, took classes, traveled, and was married. I lived a full life. Unfortunately, my doctor took me off medication, and the results were disastrous. I was psychotic for over six months, and I never regained that high level of functioning. It is unclear if that long period of psychosis is what “damaged” my brain or if it is just the progression of the illness. The symptoms of schizophrenia change as people get older, so it is possible my illness is different in my fifties than it was in my thirties. I’ll never know the answers; I can only speculate.
Even though I never live a day without being aware that I have schizophrenia, and one symptom or another is almost always my constant companion, it isn’t as if my life is less valuable or less meaningful. I often think mothers and fathers have built-in meaning in their lives, but for those of us who are not parents, we must sometimes search for meaning. For me, my life’s meaning has changed with each decade.
I am currently working on increasing my writing and advocacy about life with schizophrenia, or a severe mental illness. The more voices like mine that get out there that people can relate to, the more humanized the severely mentally ill will become. If only five people read this blog (and other work I have coming) and those five people change the way they feel about schizophrenia or feel like they have a different understanding of people with the illness, then that is five more people who can tell five more people, and on and on and on.
I think that is how the world gets changed, and although I’m not suffering from feelings of grandeur, I do think I am doing my small part to change the perception of a feared, stereotyped, and misunderstood illness. I would say that everything happens for a reason, but truthfully, I don’t believe that at all. I believe we do the best with what life gives us, and life gave me schizophrenia, so I do the best I can living every day with that.