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Monday, May 10, 2010

Hearing the Worst from Your Doctor

For a long time I thought multiple sclerosis was about as bad as it got.  Then I joined the Council of the Harvard NeuroDiscovery Center and learned about Huntington’s disease and Amyotrophic Lateral Sclerosis (ALS), which is also known as Lou Gehrig’s disease.   My view of my own hardships and really the world, have changed.

I profiled an ALS patient in my second book, Strong at the Broken Places.  I saw a lot and learned even more about the disease.  Horrible.  Maybe the worst.  I met a physician in his late 40s, an academic ophthalmologist living – if that is what you can call it – in Beverly Hills.  He lived in a living room converted to a hospital-like area in the home of his retired parents, who were best able to take care of him.  His wife and children lived in the neighborhood and were frequent visitors.

Neil just lay motionless in bed, an inanimate object that could have been on display in a wax museum.  Though his color was good, a healthy pink, and he was clean shaven, not a muscle even quivered.  Neil’s eyes were wide open, staring straight ahead.  Every five minutes a bell rang.  A nurse walked over and put drops in Neil’s eyes because he could not blink.  “Talk to him, Richard.  We read Blindsided.  Speak.  He will understand everything you say.”

I stepped into Neil’s line of sight and proceeded to tell him about my new book.  There was absolutely no response, though I realized he could understand every word I spoke.  To say the experience was weird does not even come close.  Neil was hooked up to a polygraph for administrating lie detector tests.  He would be asked yes or no questions, and could communicate in a rudimentary way.  Neil’s death was the final fact I was able to wedge into the book a few years later.

Diseases are cruel.  Suddenly, my MS seemed manageable, if not reasonable.  If you are sick, just take a look around you.  Eric Lowen is a singer.  Eric lives in his wheelchair and can no longer sing.  Eric has outlived his life expectancy since his diagnosis many times over.  He can still speak.  I reach him in California regularly.  He wears a headset and can carry on conversations normally.

I don’t know that I could live with that disease past a certain point.  Neil had no exit strategy.  Neither does Eric, that I know of.  I do know that he cannot do it alone.  What a horrible position for a loved one to be in.  I suppose there are ways, with no questions asked.

I just want to know how we can spend upward of $2 trillion on foreign soil fighting an uncertain enemy while we spend $29 billion on National Institutes of Health  and a certain enemy that kills our citizens arbitrarily in the night.  I would like our national leaders to spend a day or two with an ALS patient or some poor soul with pancreatic cancer or any other disease that kills horribly and rethink our national priorities.  Disease is terrorism, too.

Suppose you got ALS or another dreaded terminal illness that was going to rob you of everything you are.  Could you take your own life if you had a horrible disease leading to certain death? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

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Posted by: Richard M. Cohen at 11:50 am