I recently shared my anonymous blog with a few people that I know in real life. This was a big and risky step for me. I fear being publicly known as schizoaffective (let’s just say schizophrenia to keep it simple). This could have an adverse impact on my job search. But I realize that just an introduction to my blog is a big thing now that I have more than a handful of posts. As a fan of top-ten lists I thought it best to come up with 10 things to know about my schizophrenia. This is all specific to me and not to schizophrenia in general. If you want to know everything a layman could want to know about the disease I couldn’t recommend Surviving Schizophrenia, 6th Edition: A Family Manual more highly.
1 – I have good days and I have bad days
But they are all tough. In many ways, the good days are toughest because they are a reminder of how I once was when I was healthy. The good days are still riddled with delusion and The Dragon, my schizophrenic entity, is still waiting in the dark corners of my mind.
The very nature of my disease is that each day is a new day and can be completely different. It is like a roulette wheel where the previous spin doesn’t impact the results of the next. Maybe a better analogy would be Mad Max: Beyond Thunderdome’s wheel and every morning I bust a deal.
Some days wind up in the middle. Those are the best days. They are easiest (but still difficult) to manage because they are what I am prepared for. However; I seem to operate mainly on the extremes.
2 – Relaxation is nearly impossible for me
I might appear docile since that is what I strive for. But in my head, there is a near constant pull and tug with The Dragon. When I’m quiet my mind is loud. In my youth introspection was a time when I built fantastic worlds in my mind that I would write about. As an adult looking inward is dangerous. Inside I dwell on delusion, paranoia and shame.
I try to relax in the ways I used to with TV, video games and reading but they just don’t work like the used to. I can’t concentrate on what I am doing. In fact, my reading speed is about a quarter of what it used to be and my retention is poor.
There might be some hope here though. I was just switched to Klonopin from Ativan and took my first dose to see how it will affect me. I feel good. Maybe this med can be a key to me getting the relaxation time that everyone requires.
3 – Happiness is also just about impossible
Once back in therapy, after my retirement leave is up, and I belong to the VA, this is going to be a big focus area for me. It’s called anhedonia, the inability to feel pleasure, and I have it in spades. It feels like the pleasure centers of my brain are turned off. Maybe choked off makes more sense. Just when things are starting to go good The Dragon is there to destroy them. Happiness is quickly replaced with guilt, shame and disgust.
Happiness is what I want back in my life. I have so many reasons to be happy. I am a lucky guy, just unlucky in mental health. I can absolutely see that I have all the ingredients for happiness but my kitchen is lacking the pan to bake it. I’m hoping that under the help of my new Klonopin I can begin to tend the paths to pleasure and again feel genuine happiness.
4 – I think of The Dragon as a living thing inside of me
The dragon is very smart, wickedly devious, adaptive and creative. It doesn’t just project voices inside my head but the voices are accompanied with the entire mental experience of feelings and emotion. I can hear it and it causes me much mental anguish.
I don’t always hear him, but I can always feel him. If I’m feeling down or bad, it is there to add to it. If I am feeling relatively good, it is there to contradict it.
As I build new tools to counteract him such as those in cognitive behavioral therapy he develops new ways to attack me. It is a battle that I cannot win. All I can do is live on to fight another day.
Schizophrenia means “split mind.” A popular misconception is that this means multiple personalities. My mind is absolutely split. There is me and there is The Dragon. I completely understand that he is a part of me and in many ways, I need him. But the adversarial relationship makes him the ultimate antagonist. He knows all my weak points. The Dragon knows the things I’m the most ashamed about, the most afraid of, the things I hate the most and the things I love the most. He uses them all against me.
5 – My delusions are very real to me and numerous
A delusion is a firmly held belief despite being contradicted by fact, generally accepted as reality, or rationally understood. This means that you shouldn’t waste your time trying to explain away my delusions with rational argument. All you will do is frustrate me and yourself. I’ll meet you half-way though, I won’t try to explain away the things that you firmly believe in.
Now if you want a fascinating conversation about aliens I’ll happily talk all day and maybe you can join me in being a little delusional about little grey men.
6 – More than anything I fear I’ve passed this on to my children
There can be a genetic portion to this. Although, to my knowledge, I have no schizophrenic relatives. Statistically there is a 10% chance of a child of a schizophrenic developing schizophrenia. I wouldn’t wish this curse upon anyone and I’m terrified that I’ve given it to the two little people I love the most.
This disease makes it so I’m not the best parent. I try my hardest to be a good parent despite it. But I often fall short. What I do is I only hide the worst of it from the kids. Even in their young age they both know their dad suffers from “thought monsters.”
By my example of fighting against it, and helping them through times when their smart brains get the best of them, they can learn to fight before they have to. If they do develop it, I’m the best equipped person to help them. If they don’t, then they will have learned a lot of tricks to maintain a positive mental well-being.
7 – I don’t trust you
In the house of schizophrenia I live in, amongst the foundation stones are paranoia and distrust. The Dragon plants seeds of distrust in every relationship that I have. I only have the strength to keep those weeds from growing in one relationship. My wife is the only person that I trust completely. In the schizophrenia world I am so lucky to have someone that I trust. This is rare and I am truly blessed.
I want to trust you though. It just stands that there is a large part of me that harbors deep waters of paranoia and conspiracy. You can’t take it personally. This is a part of my mental illness that I wish others could understand and accept. Radical acceptance is a strategy that I try when I am hit with hard thoughts to overcome and this is where I need it from you.
8 – I want to isolate myself from the outside world
The very nature of my disease makes me want to isolate myself completely. I would be perfectly comfortable walling myself and my family away in the house and order all our groceries online.
The outside world is filled with the unknowns that the Dragon can pit against me. I think that strangers are watching or even following me. The government has plots against me. I even believe that aliens have me under observation in some experiment. I even believe that they made me schizophrenic. Yes, this sounds ridiculous. Reread number 5 above.
But isolation is exactly what I don’t need. It isn’t healthy. I need to get to know my neighbors. I need to get a job that forces me to be social. I need to find volunteer activities or organizations to be a part of. I need to be involved with my children’s lives. I need to be a part of my wife’s social circle. I must do these things even though they are very difficult for me.
9 – You won’t hear from me on my bad days.
I won’t call, I won’t text, I won’t post on Facebook. When you do hear from me it’ll be on my good days and I’ll say that things are going well. I still carry with me a lot of pride and I want it to seem like I’m on top of this thing. But most often I am not.
It’s those periods of time when you aren’t hearing from me that I need to hear from you. Just a quick note goes a long way to boost my spirits and help me to keep up the fight.
10 – There isn’t a cure for me
There isn’t a procedure or therapy or medication or faith or epiphany that can cure me. Some people grow through it with time, but that is exceptionally rare in cases of late onset like mine. The best I can hope for is management.
In the world of schizophrenia, I am not that bad. But I can remember what it was like to be healthy and compared to that, I am awful. This is a severe mental illness and it is crippling. The roller-coaster of symptom inconsistency is going to make it difficult to work. I will be working for as long as I am able though.
I remain the same person. I am safe and I am not aggressive or violent. I still care very much about the people that I love. Even though the Dragon has a specific end-game in mind I will never stop fighting him.
I don’t believe that someone without schizophrenia can truly understand what it is like. I don’t expect you to understand my schizophrenia, but if you care about me, I expect you to accept it.