Sunday, July 7, 2013

My Disabilities

Five months and 130 or so blog posts after starting this thing, maybe I should tell a little about myself and my disabilities. First the disabilities:

This condition can have different causes and an assortment of affects. For me, Arthrogryposis manifests itself in:
  • Muscle weakness and stiff, less flexible joints.
  • I'm short ... 4'1".
  • Significant spine curvatures, both front to back and side to side.
  • Reduced lung capacity caused by the spine curvatures.
  • My type of Arthrogryposis is genetic, which is one of the rarer kinds.
From birth to around the start of my teens, the most significant affects involved my feet and legs, which initially were in a state that would have made it impossible for me to walk. Physical therapy, multiple surgeries, and and an assortment of
medieval torture devices braces very early on were successful, and I started walking at age 3. By the time I was 8 or thereabouts, the condition of my legs, feet, and ability to walk were no longer significant issues.

As I grew, my spine curvatures increased and the impact on my lung capacity "took over" as the most prominent aspects of my condition, which they remain to this day.

When I was 9 years old I had surgery to fuse my spine and attach a supporting rod. This mostly stopped the increase in spine curvature where it was, which probably means that my condition today is better than it would have been without the surgery. The fusion and rod also further limited my growth, and of course, I can't bend my torso. My spine was never all that pliable though, so I rarely notice this lack of flexibility. That old piece of advice, "lift with your legs, not your back", is unnecessary for me.

Despite the surgery, I still have low lung capacity, which results in significantly reduced endurance for physical activity. Mostly this means I can't walk long distances. I can walk the length of our local shopping mall, but I have to stop six or seven times to sit and rest, and most days I make good use of handicapped parking. Also, due to sleep apnea, I use a ventilator at night, attached to a tracheostomy. The ventilator and trach themselves require care and maintenance, although they are fairly easy to deal with, and don't restrict travel. Having a trach does increase my risk of lung infections, which has over time caused disruptions and probably some long-term effects. The kind of trach I have can be capped during the day, so I have no trouble speaking.

When I was in college, before I had learned to drive an adapted car, I used a mobility scooter for "walking distance" travel. Once I started driving, I mostly gave up the scooter, though I still have one I occasionally use on trips and outings with lots of walking and no place for driving.

For more details on dealing with low stamina, I recommend reading about The Spoon Theory. My symptoms are a lot different, but I do have to hoard and ration my spoons carefully, every day.

The restricted and distorted space inside my torso also restricts my stomach and digestive system. I can eat anything I want, but not much of it. It's sort of like an involuntary version of one of those gastic bands people get to lose weight. As a result, I've always been shockingly thin. I'm sure that has also further decreased my muscular development. Still, it doesn't affect me much beyond my appearance, or on Thanksgiving when my eyes are bigger than my stomach.

My general muscle weakness affects my daily life in various ways that I've adapted to, but which still occasionally causes unexpected stumbling blocks. This is especially true with my arms, hands, and fingers. Mostly it comes up when doors are hard to open, and when various mechanical controls are stiff or hard to operate … doorknobs, switches in awkward places and positions, and of course, mayonnaise and spaghetti sauce jars.

I experience some back pain, though far less than one might expect to look at me. Advil does the job.

My overall appearance is noticeably different, which does effect my social interactions, though the effect is usually short-term, at least as I experience it. The effect on my own body image and sex life is a question I'm only belatedly starting to think about seriously.

Another time I'll share some of the non-disability aspects of my life.