Saturday, 2 August 2014

Brian Fender, Guest Blogger - Killing A Healthy Body

When you get diagnosed with ALS, you join a pretty exclusive club, one with a very diverse membership, the club of PALS. One on the People with ALS I have had the pleasure to meet online is Brian Fender, an artist and writer. Brian, and his partner Ron, lived in New York until Brian was diagnosed. They've returned to Little Rock, Arkansas to be near family and friends. In the cruelty that is ALS, he is bedridden and no longer able to hold a camera, but he is very thankful that he can still type and create. The other day he wrote the following.

I have been telling myself little lies. I have been able to maintain my weight on less calories for over a year now. Thoughts of “maybe the disease is sedentary or even reversing itself” flow in and out of my consciousness. Maybe if I get stung by a bee or bit by a poisonous snake it will change everything and cure will be found right under our noses. But after several days of not being able to push myself up in a sitting position I know these little thoughts are delusions.

My muscles are deteriorating and I have to sit in this fact and learn to accept the whole truth that I will soon be stuck in this body. Many others have done it before me and done it beautifully I might add. I have met a couple this month that doing amazing things that keep them going.

I sometimes wish that everybody would become paralyzed for a year. I think that if everybody experienced the loss of their free will there wouldn’t be all this destruction we seem to be hell bent on doing to this planet we have been give or to each other. People would just be happy to be able to hold and kiss their loved ones. I can’t pucker to give a proper kiss. Just be happy to speak to their loved ones, happy just to be able to get up and walk out the door. Instead we habituate to everything around us and need more shiny things to keep us from habituating. I’m still guilty of it.

A young employee of my brother’s killed himself the other day. I don’t want to know the details I am going to have enough loss to deal with, with my ALS friends. All I know is that it was a shock to everyone. I am quite certain that if he had lost the capacity to do anything for himself for a year he would never have ended up killing a healthy body.

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