Sunday, February 26, 2012

The story continues...

So now I knew I had MS but simply knowing did not prepare me for what lay ahead.  And before I go on, I think it's important to explain what MS is, for those who do not already know.  Please know that I am going to describe what it is in my own words, but still encourage everyone to "google" it or go to your friendly library to do your own research.
MS (multiple sclerosis) is neurological, which means it is a disease of the brain and spinal cord.  It is also chronic, so to be afflicted with it is a lifelong journey.  Since our nerves are EVERYWHERE in the body, MS affects every bodily function at some point but tends to begin in the legs and/or eyes.  Optic Neuritis is a very common first symptom of MS, as it was for me.
What happens in MS is this.. our nerves are covered by a sheath called myelin and the messages our brain sends out to other body parts travels down the myelin to its desired destination.  In MS, our bodies are eating up the myelin so there are gaps and the message is not arriving to the destination in its entirety, or else it's not arriving at all.  That's basically the short, simple explanation but what it does to our bodies, and our lives, is far more complex.
Over the years I believe I've experienced most problems that come with MS, with the exception of paralysis.  My first five years or so were the hardest, where I spent most of my time either using a "quad" cane or wheelchair, experiencing new levels of pain in my legs, falling into a world of depression I had never known existed, feeling lost and alone and knowing the world was moving on without me.  I'm sure some of it was my fault since I chose to isolate myself, but it still hurt when people I thought were my friends no longer called on me because I wasn't fun anymore.  But how could I be "fun" when I was dealing with a life sentence I could not fully comprehend and in no way deserved?

The one who was my "saving grace" during these hard times was my dad.  My mom had started working full time at a local bank and my dad had recently gotten early retirement from his work since they were closing the foundry where he was employed, and this gave us a lot of time together.  Almost every day, he would take me to the mall and wheel me around and buy me most anything I'd see that would catch my eye.  Pretty much every employee began recognizing us after a short time and would wave at us or smile and say hello, which always made me feel good.  I felt like a celebrity of sorts and would chat with many of them.  The only time I would hate being there was when we would run into someone we knew and I would get looks of absolute pity.  Some would even start to cry.  What were they thinking?  As if I didn't already feel bad enough to be fucking crippled at such a young age!

And then one day, I asked my dad to give me his arm and I would try to walk.  It probably took me 20 minutes to walk the distance that would take most only three, but I was so proud and then Dad and I both cried.  We were so happy that I was able to do it, no matter how difficult it had been.  I'll never forget that moment.  This happened either at the end of 1992 or the beginning of '93.

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