Sunday, March 14, 2010

How Dare You

Addendum (March 25, 2010):  Since writing this post, it was discovered that the person I knew as Mark, about whom this was written, was nothing more than a figment of the imagination of a woman who feigned having ALS for the purpose of getting attention and sympathy.  "Mark" is apparently not her first fictional identity, nor do I believe he will be her last.

Despite the discovery that the entire scenario described below and character at the center of it are fictional, the outrage I expressed is real, so I've decided to let this entry stand.

For more about the revelation that there is no Mark, please read my follow-up post: Butte Münsch, or How Dare You, Part Two

There is a doctor in Butte, Montana, who’d better thank whatever god he prays to that he’s several thousand miles away from me, because he is now a marked man.  This doctor, supposedly a practitioner of the healing arts who swore an oath to “first, do no harm“, decided earlier this week that it was time for one of the loveliest, most vibrant men I have ever known, and one whom I’m truly honored to call my friend, to die.  To make the effort to prolong my friend’s life, he implied, would be “a waste of resources.”

To quote Eric Cartman, “I.Am.So,Pissed.Off.Right.Now.”

All the doctor knows of my friend Mark is that he was admitted to the hospital unconscious with raging fever from an undetermined infection, and that he has Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s disease.  ALS is a progressive disease that robs its victims of their ability to move, to speak, to eat, and to breathe on their own.  There is no cure, nor is there a treatment that can halt the progression of ALS.  It is a fatal condition. 

The fact that Mark is in the advanced stages of ALS was all this doctor needed to know before he told my friend’s family that it wasn’t worth the effort to try to treat him and try to save his life because, in the eyes of the doctor, Mark doesn’t any semblance of a life worth saving.

It didn’t matter to this this doctor that Mark is an incredibly witty, smart, engaging man who thinks, dreams, lights up a room with his presence, loves and is loved.  The doctor judged the value of Mark’s life by what his body could not do, and found him wanting.

It’s not the first time I’ve encountered this attitude from medical professionals -- it’s something anyone with a disability will face, to one degree or another, at some point in their life.  It’s happened to me -- the worst example was when a DNR notation was slipped into my hospital chart even though no one ever discussed the subject with me.

But familiarity with this attitude that we are somehow less deserving of the best care available because our bodies are damaged in some way doesn’t ease the blow when it happens.  It’s a kick to the gut to be reminded that others, especially those charged with managing your care, have already decided that your life is so inferior that you’d really be better off dead.

But it doesn’t make me sad when this happens.  It makes me angry.

So, Dr. Butte, you are on my list of those who will be the first up against the wall when the revolution comes.  And as the blindfold is tied around your eyes, you will hear my voice asking how dare you decide who is and isn’t worthy of saving?  How dare you pass judgment about the quality of a life, or the contributions someone adds to the world, based only on their physical being?  How dare you decide someone should be left to die without ever knowing anything of who that person is?

How dare you decide that my friend Mark was worthy of anything less than the best you had to offer?

How dare you.

Post Script -- Thanks to the advocacy and tireless efforts of his wonderful family, Mark regained consciousness.  The first thing he did after waking was crack a joke.  I hope the last thing he does before leaving the hospital is to rip Dr. Butte a new one, provided there’s anything left of the “good” doctor after Mark’s sister is finished with him.


ENV said...

I share your feelings. I am quadriplegic on a vent due to ALS and intellectually my life is somewhat better than before. My attitude is summed here;

Enjoy USVI. My last vacation with my wife was sailing a 50' Cat around BVI!

kickals said...

Oh please- tell us his name so we can send him some "info". How horrible!!

Stephanie said...

I am thinking that you don't have to worry about this anymore. :(