A.S. Face 1099: Chris Russell

Face 1099

It still irritates me to see perfectly healthy people (95% of the population can’t be ailing) use automatic doors when standard doors would be quicker, taking elevators one floor when stairs are available and using wheelchair ramps as transits when only a few stairs would get them to the same place.  With occasionally breath-taking back pain, hip pain that forces me to use a cane for (slight) help, and knees that get sore more often than when stairs have to be climbed, it would make sense for me to use these disabled access points.  Usually, I couldn’t if I wanted to, as there is generally a line-up to get through; even though two doors stand available and unused, they remain unused.  I refer to these people as lazy bastards; I would appear to be one of them if I followed them, as the invisibility of my illness does not show in any way a need for help at all.  I often force myself to take stairs and open doors for myself.  While this is not a necessity, it is a choice that I make for myself.  Even as I write this, my wrist hurts.  I have tried voice recognition with my laptop, but it takes way too much effort for it to write or type words that I actually say.  So I do it the old way.  Pen to paper.  I still want a typewriter, but have no room to store it.

I am not one to do nothing.  Since being on disability (something that my doctor more than believes I should be on), my days have been essentially “free”, but I like to fill them, in part with household chores, and working on a book with my cousin.  I do my own writing on the side, but the book with my cousin I consider more valid and important.

At times, I do force myself to work through the pain, taking breaks as required.  While distractions are many (television, video games, books), I always make time for cleaning the bathroom, washing the dishes, making the bed, etc.  I also do the weekly grocery shopping.  I used to work—generally harder than others—when the cause of my pain was undiagnosed.  The pain was something that I assumed everyone went through, and thus not worth complaining about.  I tried to make up for the physical slowdown with harder work to make up for it.  It made me feel like I earned my money.

While I do recall feeling painful back spasms as a teenager, when I did complain about it to my mother nothing was suspected and nothing came of it.  I did, in later years, visit my doctor for back and hip pain; they seemed too severe for someone my age.  After complaining to him several times, I was put on ever-increasing strengths of painkillers, x-rayed and sent to other doctors, specialists, and even a massage therapist once.  The specialists were generally foot specialists, as my feet hurt severely while I was working.  While I did confuse a lot of people with my mysterious ailment, when I was finally sent to a rheumatologist, it took him about five minutes to diagnose me after I had explained the symptoms.  This was after spending $400 on insoles to, presumably, help my posture and relieve the foot pain.

The drugs I was given (for the arthritis, not the painkillers mentioned earlier) took most of the pain away.  This let me work without as much pain (although not fast enough, as I was to find out), and bettered my agonizing walk to the subway that I had to do every day.  Climbing stairs was what hurt the least; at work there were stairs that needed climbing, so some vague relief was possible.  Far from a cure, though.  My back still hurt enough at times to immobilize me.  I lay on the floor due to the pain often times.  I figured that a straightened back would make the pain less.  Once, I had to crawl to the bookcase as walking—everything—hurt too much. I am on anti-inflammatories and a drug to somewhat reverse the effects of arthritis.  These make my days usually tolerable, although I have yet to have anything to remove me of symptoms or pain.  A new fear has just evolved as well.  I have epilepsy.  While it is quite controlled with more medication, I cannot be certain that I will never have another seizure.  If, as the goal of ankylosing spondylitis is the fusion of my spine, then a seizure could break my back.  Something else to look forward to, like uveitis or iritis, whichever it is called, a potentially blinding problem.  Like heart problems or posture damage.  Nothing is certain, but the likelihood exists.

“Just because you’re used to it, doesn’t mean it doesn’t suck.”  A close friend said that.  Truer words have rarely been spoken, but, as I am used to it, I rarely mention it and consider it a part of life.  Occasionally, I look like I’m about to have a heart attack, as the pain can be bad enough to feel the need to put a hand over the sore spot on my chest.  But the familiarity doesn’t force me to make a show of myself. It is almost amusing that, when I look at pictures of John Merrick’s (AKA Joseph Carey Merrick or the Elephant Man) skeleton, apart from the skull, the structure of the bones looks like how I often feel, and how I stand when looking at the mirror.  My posture has been compared to that of his.

Until the worst happens, the pain will be a continuous partner, sometimes agonizing, sometimes taxing and tiring.  Every day is different, as this arthritis is a roamer, affecting various joints, my back, my ribs.  At times, it is like having a screwdriver jammed into my chest and several broken ribs.  It is the used to it that makes me suck it up instead of exclaiming “That hurts!”

Ontario, Canada

One Response to “A.S. Face 1099: Chris Russell”

  1. Dear Chris,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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