Living With Pain


I’m not convinced that there is any “disability” be it sensory, mobility, or cognitive that doesn’t come with some side effects. Accommodating for a disability is very hard on the mind & body. Besides the fact that most disabilities don’t come without some spice, there are generally some other issues associated with the disability.

Having ocular albinism means that I am hugely sensitive to light. I will get severe sunstroke symptoms from being outside too long or even if I go outside without a hat. If I don’t wear eye protection in the form of a significant UV filter I will spontaneously go to sleep. These UV filters aren’t the two dollar variety that you buy at the drug store, these are significant investments up to $500 each, I use four. Ah big deal you say, in the grand scheme of things your right, sun sensitivity is manageable. As long as I manage it I’m generally O.K..

Significant to chromic eyestrain is a given. What can I say. I work until I can’t work anymore. Who wants to know that every day you get out of bed you’ll be guaranteed to be in significant pain by the end of the day just by going to work. My headaches generally range from a 3 to a 5 on any given day. Then there are the special occasions where I’ve had to pay attention visually where I’m toast I’m so mentally exhausted I can’t really see anymore and I’m averaging between a 7 or a 9 on the pain scale. Finally there are the disaster days where the only thing to do is go back to sleep the raging nasty 10 headache or migrate or whatever you refer to it as. When it hits I’m out of business for a few days. Reading has become nearly impossible, I’ll ready but there must be significant reward for doing so, its like razor blades to the eye’s. Thankfully with an understanding employer I can work.

Being blind you tend to have a lot of little injuries, sometimes more major ones. Nearly every time I go outside, go to work, get out of bed I will bump into something or crash and burn. The other day before I arrived at work I walked into glass walls there separate times during my commute. Most of the time, not all the time, but most of the time I will have wounds of some kind on my shins. Bumping into things is very common. My poor feet, I’ve broken or sprained my ankles so many times. I know how to put the casts on and how to do my own physiotherapy afterwards. I’ve injured my feet so much I’m like a leaper and have lost feeling in them. I’m not kidding I have significant nerve damage in both of my feet. My left foot has especially, since it is my sensor, takes a tremendous beating. At the moment I’m in a cast again, a sprain a brake who knows. My ankle has been rebuilt once, it looks like its coming apart, what do they do next? Cut it off? I hope not…

Then there is the self inflicted torture you put yourself through to accommodate our disability. I’ve undermined my spin. Leaning forward to try and read a computer screen and type have misshaped my neck and back. My shoulders don’t function properly and I’ve messed my hips up entirely. I spend thousands of dollars to be able to work. Little tiny things that seem totally insignificant to you or utterly senseless and utterly irrelevant mean the difference of being able to do a job or not do a job. I have to do exercises to retrain my body how to function normally. If I do the exercises I’m good to go If I don’t I’m in pain very simple. If I don’t exercise Its medication, serious pain killing medication that leaves you in a stupor like you’ve been drinking all night long. Where was the party? There wasn’t one. Why do people pay money to get high. I hate the rush and I hate the feeling wasted on pain meds, I don’t get it. I’d rather live in pain then reduce myself to a mindless unfeeling meat sack. If the pain meds don’t work, then the piece de resistance injections right into your spin. That alone might have you wiggling from being squeamish but wait to get the needle just right they have to hit the needle to the nerve. This I can tell you is the single most painful thing I have ever felt in my life.

Each of these things I’ve learned to manage over time and with experience. It’s the fact that I live with chronic pain that gets me down occasionally. Pain is something very hard to live with. Pain for months on end wears you down, dulls the mind, ruins your mood. I’m so lucky my wife walks with me through these dark times. I’ve come to understand why someone would choose to end their life. Pain is a big deal. Each of these things I’ve described can bring me pain. As long as I’m good to myself and take care of myself I can avoid any major pain issues. Getting to this point I’ve had to learn the hard way from my own mistakes. Frankly if I was just “blind” that would be easy. It’s the physical byproducts of being blind that are hard

Posted in: Pain

About the Author:

Kyle has ocular albinism and has been legally blind since birth. Kyle leads a very active live and is besides his professional career involved in many projects for persons who are different.

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