When you hear the word “schizophrenia” a lot of symptoms probably come to mind. Some of them, unfortunately, are sensationalized or completely inaccurate, like “split personality.” You might have said hallucinations, hearing voices, being paranoid, and thinking you’re God. Sure, that could be schizophrenia. But what about memory loss?
My brother Pat was diagnosed with schizophrenia almost 10 year ago. For a year he thought people were surveilling him, coming into our home to install cameras, listening to his conversations whenever he was outdoors. He didn’t have a reason for it. He didn’t thinking he was a god, a king, or the Second Coming. He believed he was a target for the government — this was around the time the media began to cover the privacy violations stemming from the Patriot Act.
He also believed his coworkers were out to get him. He thought one in particular was sabotaging his work, stealing his clients and invading his privacy.
He thought everyone everywhere was talking about him. If you were speaking Spanish, you were talking about him. If you were 40 feet away and laughing with your friend, you were laughing at him.
He believed he could hear people’s thoughts before they spoke to him. He already knew whatever you were going to say, and every word out of your mouth was only confirmation to him that he knew what you were thinking.
While today Pat’s active psychosis has remitted and he takes a long-term injectable antipsychotic, he has always suffered breakthrough positive symptoms, usually delusions, several times each year. This kind of schizophrenia is often referred to as “refractory,” meaning it has been resistant to every medication regimen used.
As his sister and his closest friend, I read everything written about schizophrenia (I even wrote a book about it). I was ready for the negative symptoms, the anhedonia (loss of pleasure in activities), the lack of motivation, lack of communication, flat affect and anosognosia (he lacks insight into his illness). I was ready for his first relapse, when he went off his medication, even though it reduced me to tears.
What I wasn’t prepared for was the gaping holes in his autobiographical memory. Even at his best, Pat won’t remember things we did when we were young. He may not remember people we saw everyday growing up, even teachers we had. He won’t remember films we saw a hundred times and used to quote.
He has forgotten many of the things we did in high school, things we said over and over again. We lived together in college and spent night after night watching the same movies, sharing what we had learned in class, and discussing our thoughts. But those memories today are only mine. I try to mine them and keep them preserved — I’m not sure why, I guess because I believe someone has to.
There is so much about this disease that one must learn to take comfort in. You have to wrestle with strange occurrences and remake them into something that’s okay. You have to see a smile where there is none. You have to see improvement no matter how small. You take what you can get. Your expectations are completely different than they were before the onset. People outside our situation probably can’t even imagine, and it leaves me feeling isolated.
Watching your brother behave strangely, drop out of his graduate program, stop working and retreat in terror from the idea of leaving the house is bad enough. I listened to his terrifying suspicions, which had no basis in reality, and made those early-day mistakes of trying to talk him out of them. Now the fog of active psychosis has cleared, but the Pat that remains is only pieces of the man he was.
When I moved away for graduate school, a stoic Pat said only, “Goodbye, I’ll miss our conversations greatly.”
He remembers enough to know I’m a friend. He emails me, shares music and films with me, articles he reads online. When I see him, he slides back into friendliness and easily chats with me as if he saw me just yesterday. So there is still some context that tells my brother that I love and care for him. All that has to be enough.
I’ve learned to look for silver linings. No one has been asked to accept more:
Your loved one has this mental illness. Yes, it’s the one that most people consider to be the absolute worst mental illness.
It’s mysterious. We don’t know why it happened to them, but here’s a bunch of books filled with maybes.
We don’t know what it will look like for your loved one. It manifests differently for everyone.
It’s chronic. We don’t have a cure.
We have lots of medication, but we don’t know which, if any, will work.
Your loved one will never be the same and you have to accept that.
Schizophrenia feels like a make or break diagnosis. There’s something in astronomy called supernova nucleosynthesis. This happens when a massive star reaches the end of its life. Fusion is what makes a star burn bright. Our sun is fusing, or burning, hydrogen and helium right now. But what happens when it burns all the available hydrogen? Well, stars will burn helium in a pinch, but that will manufacture increasingly heavier elements in the core of the star.
The star will burn heavier and heavier elements until it reaches iron. Iron is strong stuff. It’s so strong it can destroy a star many times the mass of our sun. (Yes, I’m talking about the same iron that’s in your favorite skillet. Where did you think it came from?)
A star can’t fuse iron. Rather than letting energy out, like our sun is doing right now, iron absorbs energy, resulting in stellar death. An iron core will result in a supernova explosion within milliseconds of being fused inside a massive star.
Is there some kind of human equivalent to something so strong it can eliminate a star? It’s schizophrenia. It changes everything.
That’s actually a silver lining. No, things aren’t perfect. Our loved one will never be the same. But it has made us stronger. It has made us the kind of friend and loved one that they deserve.