I went on disability in December of 2014. I’ve collected disability checks since May 2015. They aren’t much; I only paid in for about 14 years. Despite that, it has really bothered me that my body is completely usable and I’m collecting a check. That’s why I wanted to get off of disability, even if it meant taking a cut in annual pay. That’s why I took a job as the Digital Media Manager for the Ivey Center at Columbus State University. In reality, the job was just a bunch of contract gigs of part-time contract work put together by a good friend who wanted to throw me a bone. I wanted to earn my living rather than sit home and become a ward of the state. In the last few weeks though, it has become apparent that I am not as functional as I want to believe I am.
My body is still not as usable as I would like to convince myself. Following brain surgery I suffered from hyponatremia (dangerously low sodium). It turns out that is something that all brain surgery patients have, but no one warned us. My surgeon apparently prescribed a sodium pill, but Florrie didn’t notice it missing from the 15 prescriptions she had to have filled in the middle of the night on the way to where we were staying post-surgery. Regardless, my low sodium led to me vomiting profusely in my car on the way to the ER in LaGrange and again a few days after I was discharged from the hospital the first time. The low sodium led to a fluid restriction. The fluid restriction led to straining in the bathroom. The straining led to hemorrhoids. The pain was so bad that I required surgery. So a week before my wife had our son I was on the operating table for the second time in 4 months. The surgery took the hemorrhoids away. The problem was that the surgery never really took away the pain.
So I’d been living with that pain for almost a year and a half. I didn’t want to go back to the doctor because I was afraid that he would require another hemorrhoid surgery. I could suffer almost any pain to avoid that experience.
Then the seizures began. Fortunately, there has been a logical reason for each of them. The first was the stress of losing my father. How often does that happen though? The ones recently were likely because we tried changing seizure medicines and the new one apparently wasn’t doing its job. We are still in the process of trying to find a medicine that works and is cost effective.
I live as a prisoner in my own body because of the medicine side effects. I’ve spent the last two weekends trapped in a chair because of vertigo and nausea. The word “vertigo” doesn’t capture the feeling of panic and helplessness that one feels when they can’t control anything in their environment. I began throwing up uncontrollably this past weekend. Every time I take a pill now I live in fear of what the consequences will be. However, I need the pills to keep me level-headed, sane, to not kill myself and not have seizures. It’s a lose/lose situation that I cannot win. I’d like to say that the “trapped in my own body” trope is an exaggeration, but it really is not. It is genuinely how I feel, especially after the last few weeks.
My mind also is short what it was. That’s where I notice the biggest differences. I notice my thinking is a lot duller than it was pre-surgery. Things don’t come to me as fast. I have trouble finding words a lot of the time, especially when I get flustered. It is so bad that I had to go back to speech therapy to work to overcome my aphasia in interviews. Once I got past that I still couldn’t overcome the obvious delays in my thinking and the awkwardness of my responses. I am still 7 for 7 on interviews at schools without job offers. My resume looks incredible. I am not that person anymore though; surgery changed me.
I suppose I’m writing this as a treatise to make myself feel more justified for living on a government check. And I suppose it is that. It goes beyond that also. This is a coming to terms, of a sort. Accepting the permanency of the changes and beginning to love the new person I’ve become. I come from blue collar roots, so it is very hard to accept anything I’ve not worked for. I live in fear of what others will think when they find out that I live on disability (the public nature of this post is kind of addressing that fear). I also am afraid of what others think when they see a ‘perfectly healthy’ young man living on disability. I guess I’m just afraid in general. That needs to change. I’m sure it will. It just won’t be today. Or this week. Probably not this year even. It has to start somewhere though. I suppose this post is the first step in a long journey.