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Jun

23

What’s going on?

Posted by: mose

Posted in: Mind & Body

I’m not necessarily overly enamored with my job right now, but I like working. I enjoy getting up, going out, and earning a living. Being able to use my talents to contribute to my family’s well-being brings me pride.

What if that was all taken away?

For those that don’t know, I was in a “car accident” of sorts 13 years ago in which I suffered a rather serious brain injury. ([Thanks, Mike & Tyler]Kids, if you pit your skull at high speed versus a concrete curb, the curb will win every time.) It took a long time to recover from the coma, paralysis, and other lingering effects; however, in general, I’ve pulled through okay. I can walk and talk. I was able to land a beautiful, wonderful wife and have two wonderful children. I finished high school and mini-college.

There’s a lot of lingering effects that, while they go mostly unnoticed by the majority of people, cause a significant disruption in my life. The clinical term is “permanent post-concussive syndrome.” All of the problems are cyclical these days. I’ll feel pretty good for a couple of months, then, every six months or so, the proverbial crap hits the fan and it’s a month or two of madness. I get dizzy spells, and I get “cloudy” sometimes. Having to write cloudy in quotes is one of the more frustrating things about this. I have all these feelings and experiences that are impossible to encapsulate in specific terms that I can’t convey the problems properly to my neurologist. “Fuzzy” and “cloudy” and “buzzy” are as specific as I can get in some instances. For elaboration, the best I can do is the feeling you get standing under high voltage lines or next to some high powered electrical equipment, but way more intense. When these episodes happen cognitive ability is lessened. Balance is impaired.

I also developed some other fun brain quirks. My left shoulder intermittently jumps up in the air of its own volition. I think this typically goes unnoticed but sometimes people ask if I’m cold. When things are going well, they’re rare and I hardly notice them. When things are bad, it seems like my left arm will never stay still, causing shoulder pain and headaches. I also developed epilepsy a few years after the accident. This is controlled for the most part by medication, but I ended up with the photosensitive type, so strobe lights, fluorescent lights nearing the end of their life, people with crappy Autozone blue headlights that flicker with each bump in the road all allow me to take a ride on the dizzy train. Being in the pool facing the sun causes the reflections off the water to flicker and set me off. The oddest of them all is grocery stores. My doctor has never heard of this, and I can’t find any reference anywhere else, but being around commercial refrigeration is an annoyance in the good times and all but disables me during the bad cycles. When things are going bad, I can sense the refrigerated section from across the store. As I get closer to the frozen section, my head starts buzzing. I get dizzy and weak in the knees. I can’t think. As if trips to Walmart weren’t excruciating enough…

The main problem I’m having these days is one of personality, even though the underlying cause is still medical. I was lucky enough to smack my head right up against parts of the brain governing emotion and self-control. Now, I’ve always been a bit of a hot-head, but I was typically able to control it before the accident. That’s somewhat of a problem now, though. I get angry in an instant. Little things set me off. Impulse control goes out the window. Situations escalate before I can get a handle of my emotions. My wife doesn’t like it. My kids don’t like it. My boss certainly doesn’t like it. I’m finding it harder and harder to control though. When I asked about progressive degeneration a few years ago, my doctors advised that I am how I am and it’s not going to change. It won’t get better, but it won’t get worse than it is. I don’t buy that any more. I’ve definitely noticed a decrease in my ability to control myself. If I sense a blowup coming, I try to search internally in my little Superman Fortress of Solitude for the off button, and sometimes I can stem the tide. Sometimes I can’t.

I. Hate. This.

It’s a crutch. I hate crutches. I hate people who use crutches to justify inappropriate actions. Because of this, I don’t play this card. Because of that people think I’m just a jerk sometimes. What good would it do to use this ‘excuse’ at work. “Sorry I was rude to that guy. I’ve got a brain injury.” “That’s too bad. Get out.” What am I supposed to do with this? Claim disability? Screw that. I don’t know what to do.

The worst part of it is the uncertainty of the future. It wasn’t this bad before. If it’s gotten this bad, who is to say it won’t continue this downward spiral? How bad will it get? How long until I can’t function any more and just lay around the house? Will my children still have a father in 20 years?

Maybe I’ll call the doctor again. Or get a new doctor.

I don’t know.

2 Comments to “What’s going on?”

  1. Ann Says:

    I sympathize; especially as a frontal lobe PCS sufferer. So many questions, and not only no answers, but the accompanying sense that no one gives a damn. My doctor seems downright smug about it, and my psychologist says all I have is my injury and my response to it! As if I COULD or SHOULD be responding more favorably than I already am? It feels something like one would imagine drowning to feel.

    Relaxation and focus seem to help. Focus on relaxing, letting go. Hold on to hope, and believe in yourself. We are changed, dramatically. But deep in the core, we are still our old, hardworking, highly motivated, bright selves.

    I understand the wacky spells. My hearing drives me nuts. I have this frequent scraping kind of feeling…so annoying i don’t even want to talk or think about it. And, to do so only makes me sound goofy, yet the experience is so physical. No one understands, except another sufferer. We are the experts. My doctor looked at me very puzzled when after eight months I said I still had pain at the site of the injury, and said, “I don’t know why that is.” NO KIDDING…HE WASN’T HIT in the HEAD! How could he know? NO book or research can put into words the complexity of physical discomfort, especially if authored by someone who has never experienced the sensation. And here I am babbling. I USED to be so much clearer, more concise. So frustrating. At least we can still write. You write so well. Do that. Doesn’t that help some? A bit of a meditation of sorts. Godspeed. Live your life in as much fullness as your heart allows. I know you can’t count on your head, if it is like mine; it just messes everything up now. Let yourself rest as often as possible. Peace awaits deep within.

  2. Gini Says:

    I think you should try yoga–and no, I’m not kidding. It forces you to take your time and concentrate, and incidentally centers you. With time it yields great results, physically and mentally. The very basis of yoga is to reach your inner peace and bring it out into your daily life. I had a friend years ago who used to be a complete scatterbrain until she started seriously getting into yoga. After a few months, she was much more organized, rarely forgot anything and almost invariably radiated peace. She didn’t, however, work in a call center with d-bags and general dastardliness. Anyway, my point it, I expect yoga might have a similar smoothing effect on your temper. But that’s just my opinion.

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