Raul Desikan, MD was a researcher on ALS. He became a victim of this disease and is now going through its progressions. He wrote a Washington Post article dated April 28th entitled “I want out of this body: I can’t move, talk, breathe on my own. But I’m still in their remembering my old life.”
According to Dr. Desikan-he tried to explain, “What it is like to be locked into your body, to be alive but not living? In my mind, which is all I have left…I am so good at imaging the old me that I see, taste, hear, touch everything. And relive every single detail. I miss my yesterdays.” Two years ago, he was hiking and running with his kids and wife. “My body no longer moves. I cannot talk-my only voice is the one in my head, telling me over and over that, I am going to die. Soon, I can’t even breathe for myself anymore-I am tethered to a ventilator that breathes for me.”
It has stripped him of his emotions. He cries and laughs at inappropriate times during movies or conversations. “Swallowing has become increasingly difficult, eating and drinking is a battle of continuous bouts of choking, vomiting, crying, sweating, drooling-until finally it goes through. It is not a pretty picture. I dread nights when I’m in bed alone for a few hours because I have no way to communicate my needs. No one can hear me scream: I want out of this body.”
“It is hard to let go of the anger and injustice at what has happened to me that I feel. Most of the time, the sadness is unbearable, and I can’t find the strength to face it.” [End Dr. Deiskan thoughts.]
If you lived in a few states where the residents have compassion for their fellow person, you would have a choice. You could let ALS take its certain and deadly course, or you could obtain a prescription from a doctor for pills to go peacefully. The drugs would be taken by you, at your time of choosing-would end your life with dignity. YOU get to decide.
Or, in most States, you have no right to decide for yourself the course you wish to take. Religious belief trumps personal liberty. It is a sin to go sooner, to cheat the disease of its most painful and cruel tortures. To spare your loved ones from witnessing the brutal ending. To make society pay enormous sums of money, keeping people alive when many of these people wish they were dead.
If your religious beliefs feel you must “suffer” to qualify for heaven, or that it is a sin to end your life, or a miracle will save you, good for you. If you should be so unfortunate to be afflicted with some terrible disease, you can choose to let nature take its course. That is your right.
But you should not insist that others also go painfully. You may believe in miracles; some people don’t. True conservatives believe in liberty. True liberty is the sensible freedom to avoid inevitable painful deaths for a planned compassionate dignified one. I hope someday compassion will replace ignorant myth.
This letter is written in memory of my friend Tom and all the other ALS victims that went before him. No human being should have to die this way.