Terri Schiavo: It's Not Just About Terri Any More
COMMENTARY: A perspective from a severely disabled man. By David Jayne
Rex, GA (PRWEB) April 5, 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,
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.
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Source : http://www.prweb.com/releases/2005/4/prweb224700.htm