Terri Schiavo: It's Not Just About Terri Any More
A perspective from a 17-year survivor of ALS
by David Jayne

April 7, 2005

I write this with tremendous sadness in my heart and a sense of guilt that I am alive. I am a 17-year survivor of ALS, [amyotrophic lateral sclerosis is a degenerative condition that causes muscles to atrophy], often referred to as Lou Gehrig's disease.

Twelve years ago I made a decision to have a feeding tube placed in my stomach in order to prolong life. I had lost the ability to swallow due to the progression of the disease process. Seven years ago last week I had one foot in death's door, because my diaphragm muscle was becoming increasingly disabled. I was on the verge of respiratory failure.

I made a decision contrary to society, 95% of most ALS patients and against my personal feelings prior to my diagnosis to continue living by means of artificial ventilation.

Flashback to the spring of 1986, I was on a fast track to financial success. I was 6'3", 200 lbs. It was a beautiful spring afternoon that would often find me on the Chattahoochee river fly-casting to a rising trout. The doctor said you have amyotrophic lateral sclerosis or ALS. You may have heard it called Lou Gehrig's disease. Without lifting my head I asked how long? Void of hesitation the doctor said three to five years.

Not long after the diagnosis, 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.

I will not enter the he said she said argument of the Terri Schiavo case. I do pray that Terri did not suffer, but watching videos of her mother able to evoke a smile from Terri, I fear she was screaming silently in her final days. I cannot believe our courts. This was such a cruel death. The judge should have handed Michael Schiavo a gun and let him blow Terri's brains out. It would be less cruel instead of burdening the health care professional with guilt for removing the feeding tube.

I feel our abled society on average is clueless to the value of life and how precious it is, because they never have to seriously face death or an impaired life style personally. I have lived on both sides of the ability/disability fence. While I never took life for granted, I never thought of death like I have been forced to in the last 17 years and would have easily cast off the thought of a life with an impairment.

Society and lawmakers need education and awareness on the many levels of quality of life that exist and are fully enjoyed. The last four years I have fought to leave my home without losing my Medicare funded home health services. When lobbying in Washington many were surprised and amazed with the punitive nature of the homebound restriction. Ignorance is one of the largest obstacles the disability community faces.

I am embarrassed by Congress last hour effort to save Terri when this case has been at a critical point for over a year. Congress and President Bush should now pass meaningful legislation that reflects the spirit of the Constitution to protect the thousands of Terries that remain in our country.

The tragedy of Terri Schiavo should scare the Hell out of all Americans, because our courts have now established what level of human impairment is worth living. Mark my words, this benchmark will not remain static.

 

Published with permission from the author, David Jayne

 

About the author

David Jayne, a 17 year survivor of ALS (amyotrophic lateral sclerosis) is the leading advocate and spokesperson for exposing and changing Medicare's outdated homebound restriction policy which robs people with disabilities who use home health services of the chance to participate freely in their communitiesthat imprisons thousands in their own homes. In recognition of his tenacity and unswerving commitment to overturn Medicare's homebound restriction, New Mobility named David Jayne as their 2002 Person of the Year.

Excerpt: "... It may seem drastic--living totally connected to machines, unable to breathe, eat or communicate without some man-made device facilitating the action, but Jayne says he's not done living. "I honestly do not know what keeps me pushing forward, but I will never give up on anything or any goal ... I am hardheaded as the day is long," he says. Not long after he was diagnosed with ALS, Jayne says he decided that "I had children to raise, life to live, and ALS was not going to take my life."

David Jayne is the CEO of Homebound Solutions LLC

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