Not long after the diagnosis [of ALS], my wife at the time and I were discussing my future with the neurologist. He began going over the disease progression in a matter of fact way. He said your breathing muscles will become paralyzed and you will go to sleep and die. He quickly added that some patients decide to go on a ventilator, but there is no quality of life living that way. I shook my head in agreement.
It is extremely easy for a healthy individual to say how they would not live. I am guilty myself. If someone had told me prior to the diagnosis that I would be totally paralyzed, fed by a feeding tube, communicate via computer with a voice synthesizer and tethered to a ventilator that I would find more meaning in life and living I am certain that person telling me such a tale was insane.
Yes, my life is very difficult and requires a lot of resources to keep me alive, human and financial. I have considered disconnecting from the ventilator several times, but the reason is never because I had lost my appreciation for life and living.
I was admitted into the hospital and scheduled for tracheotomy surgery the next morning. That night my now ex-wife told me how selfish I was for wanting to live. That my young children had suffered enough and it would cause them only more pain. It was a sickening sense of abandonment. I have absolutely no doubt if I did not have the ability to communicate my desires the surgery would have not taken place.
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David Jayne
See? The pressure to die is fucking everywhere. My experiences aren’t unique. Medical professionals tell you there’s no quality of life. Your own family calls you selfish. It’s everywhere. And for some reason feeding tubes are right about the first step along the way where you really start getting pressured to die rather than accept a medical device into your life. My experiences are the norm not the exception and disabled people are pressured into death constantly when otherwise we might choose to live.
(via youneedacat)