Wednesday, May 18, 2011


I've been trying to decide whether or not this essay will be worth the trouble it will cause my family if or when they read it, and I think I have to get it out of my system, regardless of the cost.

There's an especially poignant section in the novella Flowers for Algernon when the protagonist, Charly, realizes that the procedure which vaulted his intelligence from barely functional idiot to super genius is only temporary.  He feels his gifts slipping away like sand through his fingers.  Lately I have been feeling much the same.

Some years ago, when I realized the feelings of cold in my hands and feet that I was experiencing were not accurate reflections of reality, I went to a variety of neurologists to try and figure out what was going on.  After much testing, some of it fairly painful, it was discovered that I had some kind of neuromuscular degenerative disease.  My specialist at the Hershey PA Medical Center likened it to ALS ("Lou Gehrig's Disease") but of the sensory nerves, rather than the motor nerves.  This diagnosis was based on a biopsy of a small piece of nerve tissue taken from my left leg, which showed deterioration of the nerves, particularly in the myelin sheath surrounding the nerve.  It was probably caused by a side effect of one or another of the medications used to try alter or suppress my immune system in the hopes of easing the symptoms of my Crohn's Disease.  It may have been the result of taking Enbrel, or Remicade, or Kineret, or some combination of them; neurological problems have been associated with all three, and I have taken all three at one time or another.

It was disheartening news, to say the least.  While I am glad that my motor nerves were for the most part unaffected, the constant fluctuation of sensations of cold, heat, moisture, pressure and pure pain range anywhere from uncomfortable to unbearable and continue to worsen over time, moving up from fingers and toes through the extremities to my torso.  Of late I have begun experiencing the early warning signs of motor involvement -- jerky movements of the hands and feet, dropping things more often, and so forth.  At the tender age of 58 it's extremely upsetting to see and feel myself losing function like this.  The Crohn's Disease and rheumatoid arthritis are quite debilitating enough; the prospect of yet another form of disability is quite daunting, to say the least.  More and more I am becoming aware of things I can no longer do, usually when I try to do them.  Things like standing on tiptoe, or running, or my speech slurring.  The command center sends out the signals, but the body refuses to respond.  I experience much the same thing with my intermittent stutter -- which is also getting worse -- when I feel the word there in my cortex but cannot find a viable pathway for it to my tongue.

I wish there was a point to this essay, apart from commiseration with any who might be reading it.  I wish I could end it on a positive, Hang In There, This Too Shall Pass, sort of message.  I am just not feeling it, though.  Along with a lot of other things that I'm not able to feel.

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