I'm going to put in my $.02 on Terry Schiavo. You should actually listen to this, because I'm about to talk from deep experience. I feel great sympathy for the husband and her parents. The following is not addressed to them, because they have to live through this. To all of those non-family members who would re-insert her feeding tube I have one thing to say:
Fuck you, you have no idea.
Now, to understand how I reached that conclusion I'll tell you a story, a true one. Listen.
My father was born in 1938, he was raised as normally as possible I suppose, at 13 he started smoking, he got married straight out of high school and had two kids. He later got divorced and eventually married my mother. He was an avid outdoorsman. He hunted and fished. In 1960(61?) he won the national amateur title in archery for animal shooting, he took second in target. He was active.
One night in 1966, he had vision problems driving. I don't think he or anyone else thought much of it. He went to doctors throughout the years and they couldn't diagnose it. Eventually one of them came up with the idea that these problems were occuring due to an old football injury. In 1971, he had a metal rod inserted in his neck for stability. The symptoms did not vanish.
In 1972, a doctor finally made the correct diagnosis. He told my father that he had Multiple Sclerosis. Not much was known about MS then, and only little more is known now. MS attacks the nevous system. It damages the mylin coating of the nerves leaving plaques or scars. When this happens the nerves short-circuit, losing the transmissions from the brain to the rest of the body. The MS sufferer tells the body to do something, and the body ignores him.
From 1972 onward, my father died one day at a time in front of me, my brother, and most of all his wife. My father lost some normal abilites that we all take for granted. He couldn't run. He had problems standing on one leg. He had a low tolerance for heat. He could still walk, talk, and drive a car, but his interaction with his young children was severly curtailed.
I'm sure he couldn't express this when he was alive, but the inability to teach his children the simple athletics he had enjoyed as a youth must have hurt him badly. My brother and I never learned as a child or adolescent how to throw a football, swing a golf club, and a myriad of other things that normal active fathers teach their kids. My father just didn't have the ability to do that. I remember the one time he tried to race my brother and I; he almost fell over trying to run. He did teach us the few things he could - how to shoot a gun, archery, fishing, and fly-tying - mostly activities that didn't require balance.
Our lives continued apace, we took vactions he went to work and we lived a normal life, but he got a little worse each year. It was hard to tell day-to-day, but it was happening. His body continued the rebellion - eroding his abilities. In 1982 he was forced into disability retirement by his employer. This was back before the Ameicans with Disabilites Act. His workplace didn't have to make reasonable allowances for him, which they could have, but they encouraged him to go. IMO, he could and should have worked another five to ten years. I think that would have kept his brain more active, but I'm getting ahead of myself.
As I mentioned the progress of the disease was slow. When I was in elementary and junior high school (1976-1981), my father walked with a lift in his shoe to help his balance. When I was in high school, had started to use brace and cane(1982-1986). When my brother left high school(1989) he was using a wheelchair for his primary mobility, using two leg braces and walking crutches for the shorter distances. By 1992, he was limited to a wheelchair for almost everything, his upper body coordination had started failing by then too. He was sleeping in for longer in the morning. This was a man that woke up at 5:30 a.m. every day to go to work. Sometimes he wouldn't get up until 11:00.
The decline started going faster after that. In about 1995 he became fully bed-ridden. He wasn't able to feed himself, or bathe himself. My mother had to do all of that for him. My brother and I helped from time-to-time, but she bore the brunt of it. I admire my mother more than any charity on earth. She lived a thankless dirty job.
Let me explain what bedridden is for those people who don't want to confront the reality of a terminally ill person. Fully bed-ridden means that you can't feed yourself. You can't bathe yourself. You can't urinate by yourself. My father had to be catheterized 2-3x/day so that he could urinate. You can't defecate on your own. My mother, brother, and myself changed my father's diapers. Toward the end of the illness, he had to have enemas to help things along. His meals were made softer and softer. Eventually we were feeding him ground up food by the teaspoon-ful. My mother took over 99.9% of this task on her own. She didn't have the help of a nurse or a full time hospital staff to help her.
Final stages.
In 1997, my father started to get sick. Just normal colds an flus, but it hit him hard. They got worse in 1998, he had to be hospitalized for treatment. His words to my mother while he was there were that he wanted to go home. You must understand that by that time his speech was limited to 2-3 word sentences that took a lot of effort from him. They were the slurred words of a declining human. After that sickness he went home, but he became less and less communicative. After June of 1998, I believe he stopped talking at all. He lived in a state not unlike that of Terry Schiavo, but he didn't have to have a tube to be fed.
In February of 1999, he caught another flu/cold. He went to the hospital once, then twice, then a third time. The third time they told my mother that there were no more anti-biotics that they could give him. He had taken the strongest stuff they could give, and that was all they could do. The inevitiablity of death sank itself in. The debt of life was about to be collected.
My mother called me, and I drove like a madman down to Warrensburg to be there the first night. We met at the hostpital and started the death-watch. It's a morbid, horrible feeling to know that you're only in a room to watch someone die. My mother and brother left for the evening, and I took the night shift. I've always taken the hardest tasks when I could. It was just my father, his morphine drip, and I watching late night TV. My mother told me to hold his hand while we waited, so I did. That first night passed relatively uneventfully. He was breathing and comfortable.
My half-sister and my mother came in the next morning to spell me. I went to my girlfriend's house and slept. I woke up and went to my mother's house where my family was and talked to them. My grandparents came down that day. I have no idea how they held up. The had buried their youngest child a few years earlier due to alcoholism, now they must wait as the second youngest died.
I went to the hospital for the night shift. Everyone who was there left and it was just my father and I for the night. During the day, he had started to die. His legs and hands started to get cool as his body shut down the blood flow the extremities. The nurses had prepared us for this, they gave us the picture of how the end would come. This was my hand off for the evening.
My father and I were lucky that there was a Clint Eastwood film-fest on cable that night. He and I are both fans. We watched Clint do his thing as we waited. During High Plains Drifter, his morphine ran out. I'll explain what morphine helped us miss. My father suddenly awoke with his green eyes bulging out. He gasped for air as if he had just been thrown up from the ocean. I would expect if we could hear a fish out of water that's what it would sound like. The gasping pained breath was made all to plain. I called the nurse in to give him more morphine. He was in pain, that much was apparent, but he was without a soul so-to-speak. It was the pained gasping of an automaton, a body that hadn't given up yet. If you want to feel similiar horror in regards to Terry S. listen to this. It will give you an idea, but my father didn't make the moaning noises.
The morphine calmed him down, and we got back to normal. In the morning though, you could tell that it was going to be soon. I asked the nurses and they said I should call my family. We waited and held his hand as he expired, watched as his organs failed, as the sallowness of death made its way up his torso. On 9:25 February 25, 1999, David John Sader took his last breath and went on to whatever awaits us all.
A few months later, my mother and I were talking and we both agreed that we were glad it was over. I think that we both silently wished that he had passed away sooner. The endless waiting was worse than the actual event itself.
I am sad that my father isn't here to enjoy his grandchildren. I now wish he was here so that I could ask him for the advice that all young men spurn when it's available, but I wouldn't wish him here in the condition he left this earth.
My father took thirty-three years to die. Terry Shiavo has spent half of that incapacitated. I was lucky in that I got the interaction with him that I did, for all of his and my faults. Like my father, Terry isn't getting better, and I can't be cruel enough to force another family to go through the long death like my family did. It may hurt now, but the suffering while waiting is a thousand times worse. The parents and husband have been through the courts, the parents lost. Now they must take the final steps, and get on with their lives afterwards.
Is there a lesson to be learned from this? Maybe, you'll have to figure that our for yourselves. I lived it, and live with it every day. Those who don't have to live this be thankful, and leave Terry and her family alone. It's not your business, it's not your life.
