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10:29 AM | 
Posted by
kender
You may be asking yourself about that title.
Romeocat at Cathouse Chat has a wonderful linkdump on eugenics and euthanasia, and since I don't feel like doing all the link work you can go there to chase down more facts about those topics. That is not my goal here.
My goal here is to explain why I am so personally AGAINST euthanasia, eugenics and health care "rationing".
If these things had been standard procedure when I was very young I would be dead.
You see, I was born with a very small birth defect. In the bottom of your bladder is a small flap that drops down to allow urination. My flap didn't drop down, it opened up, like a trap door in a floor.
By the time I was two and a half the constant backflow of urine had extended my ureters and caused hydronephrosis in my left kidney and severly damaged my right kidney. When I wouldn't quit crying I was taken to emergency at childrens hospital in L.A. Rushed into the OR for exploratory surgery, the damage was found, the left kidney removed and as much repair work done as possible. I was in there for 12 hours.
When they wheeled me out I was, in my grandfathers words, "battleship gray", and the doctors tried to sedate my mother before they told her their prognosis.
Their prognosis was I would live a week, at most, and they gave her a card for a funeral home down the street from the hospital. Many months later the Dcotors said I would need dialysis by the time I was seven, and if I didn't recieve a transplaant by the time I was 14 I would die.
I went on dialysis in my twenties.
I have had countless surgeries, mostly standard procedures every two years growing up as the scar tissue in my bladder needed cleaning out. That is how I know I stopped growing around 12 years old. I haven't needed that procedure since.
Side effects have caused me to have surgeries on both of my legs, (dome osteotomy of the lower extremities), my thyroid taken out and a small piece implanted in my arm, a fistula for dialysis in my left arm, and two transplants.
Mothers day weekend this year is the three year anniversary for the current kidney.
All through this I have never taken what a doctor said about my prognosis or abilities as boundries or what would happen. I took it as what they THOUGHT may happen and as a challenge to prove them wrong.
Until I was six I had a nephrostomy tube in my side with a bag for urine output slung over my shoulder. I had the constant refrain during those years of "Be Careful" and "GET OUT OF THAT TREE!!!!!" and "You can't do that".
They were wrong. I could, and I did.
I have lived a great life so far, and have such fulfillment as to be almost unfair.
I have a wonderful wife.
A great son.
I am a great horseman, and the only thing I cannot do with a horse is surgery and slap shoes on them, and I am learning the latter.
I have seen history made, sometimes right in front of me.
I lived to see the Berlin Wall fall and the Soviet union collapse.
I cried when Challenger went down, and cheered when Baghdad fell.
I have seen the sunrise over the spires of Churchill Downs, and sink into the ocean from Del Mar.
I have known tragedy and heartbreak, love and contentment and everything in between.
I have watched friends die and my son be born.
In short I have lived.
My life kicks ass.
If health care had been rationed when I was a child all of this I would have missed.
Who are we to decide, as fallable humans, who lives and dies?
Romeocat at Cathouse Chat has a wonderful linkdump on eugenics and euthanasia, and since I don't feel like doing all the link work you can go there to chase down more facts about those topics. That is not my goal here.
My goal here is to explain why I am so personally AGAINST euthanasia, eugenics and health care "rationing".
If these things had been standard procedure when I was very young I would be dead.
You see, I was born with a very small birth defect. In the bottom of your bladder is a small flap that drops down to allow urination. My flap didn't drop down, it opened up, like a trap door in a floor.
By the time I was two and a half the constant backflow of urine had extended my ureters and caused hydronephrosis in my left kidney and severly damaged my right kidney. When I wouldn't quit crying I was taken to emergency at childrens hospital in L.A. Rushed into the OR for exploratory surgery, the damage was found, the left kidney removed and as much repair work done as possible. I was in there for 12 hours.
When they wheeled me out I was, in my grandfathers words, "battleship gray", and the doctors tried to sedate my mother before they told her their prognosis.
Their prognosis was I would live a week, at most, and they gave her a card for a funeral home down the street from the hospital. Many months later the Dcotors said I would need dialysis by the time I was seven, and if I didn't recieve a transplaant by the time I was 14 I would die.
I went on dialysis in my twenties.
I have had countless surgeries, mostly standard procedures every two years growing up as the scar tissue in my bladder needed cleaning out. That is how I know I stopped growing around 12 years old. I haven't needed that procedure since.
Side effects have caused me to have surgeries on both of my legs, (dome osteotomy of the lower extremities), my thyroid taken out and a small piece implanted in my arm, a fistula for dialysis in my left arm, and two transplants.
Mothers day weekend this year is the three year anniversary for the current kidney.
All through this I have never taken what a doctor said about my prognosis or abilities as boundries or what would happen. I took it as what they THOUGHT may happen and as a challenge to prove them wrong.
Until I was six I had a nephrostomy tube in my side with a bag for urine output slung over my shoulder. I had the constant refrain during those years of "Be Careful" and "GET OUT OF THAT TREE!!!!!" and "You can't do that".
They were wrong. I could, and I did.
I have lived a great life so far, and have such fulfillment as to be almost unfair.
I have a wonderful wife.
A great son.
I am a great horseman, and the only thing I cannot do with a horse is surgery and slap shoes on them, and I am learning the latter.
I have seen history made, sometimes right in front of me.
I lived to see the Berlin Wall fall and the Soviet union collapse.
I cried when Challenger went down, and cheered when Baghdad fell.
I have seen the sunrise over the spires of Churchill Downs, and sink into the ocean from Del Mar.
I have known tragedy and heartbreak, love and contentment and everything in between.
I have watched friends die and my son be born.
In short I have lived.
My life kicks ass.
If health care had been rationed when I was a child all of this I would have missed.
Who are we to decide, as fallable humans, who lives and dies?
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9 comments:
Thank you so much for sharing your story. Only a perspective like that could have come from someone who has lived it. Your story only comfirms what many of us feel about the issue, but could not know without the personal experience.
You are the reason we know eugenics is wrong. My girlfriend was told to abort her baby in the 6th month because it would have anecephaly/severe brain damage. She would essentially be giving birth to a "vegetable." She didn't and the baby was born normal...but all the in utero tests said otherwise...they prepared her for the worst and the pictures were so clear to the doctors showing the damage to the baby's brain yet they were WRONG! When I think about it now she may never have had her baby girl.
Your stories and the others like yours are the ones we never hear about.
With the rising costs of insurance on employers, etc. I am scared we are just headed more towards the other way. Right now...if you have a baby they want you home in 48 hours to cut costs...pretty soon if you fall into a coma and you go more than 7 days...I guess they will just "pull the plug" because someone needs the bed and the HMO stops paying after the ninth day for coma patients...
It is scary to think that some day there will be "someone" determining what "quality of life" means...literally...and if you do not fall into the categories...lots of luck...
Thanks for the powerful testamonies to how miraculous life really is. Our premature baby Alex is now ninteen years of life later on and even when his tosses up the good food his bro brought home last night. (temporary bug I believe) Even the nasty clean up has elements of triumph in it.
Wow! Kender! Interesting to get to know you a little more personally there. Of course you know my opinion on euthanasia is one I share with you. I was wondering how drinking alcohol affects your situation. Just curious. Very well written, and a very good argument. I'm glad you are alive! And glad we have been able to cross paths. Keep up the great work you alway do! I have no doubts!
I would be interested to know what you would respond to the argument for euthanisa/eugenics by this site...they argue the tragedy it would be without it?
http://elektric.kat.free.fr/index.php/legalise-euthanasia ?
Wow, Kender, what a testimony. Thank you for sharing. You are indeed a testiment as to why eugenics and our drift towards euthanazia are so horrific and must be stopped.
take care,
Wow - you guys have been busy over on that site that georgina posted.
Kender - thank you for sharing. I applaud people who are told they will never be able to do certain things. I was born with feet that pointed almost right at eachother. My parents, in their love and wisdom, worked with our doctor to come up with a solution. The doctor told them that I MAY eventually walk relatively normally and would almost certainly never run. I wore casts and braces and cables for much of the first 3 years of my life. By the time I was 7 I was skiing and playing soccer like every other kid my age.
I have a question for you Kender...
if the doctors could have diagnosed the "flaw" in your bladder as it developed and fixed it before you were born (hypothetically of course, because we don't, yet, have this technology) would you have preferred that? Its awesome that you were able to oversome such an obstacle, but what else could you have put that energy to in your life? I guess what I am asking is if you are also against gene therapy - the ability to fix diseases and alleviate pain and suffering through genetic manipulation? I'm not sure if there is a difference between this and eugenics?
Anyway, here are my wishes which I just laid out in my Living Will that I completed yesterday and copied over to here. Should I not be allowed to choose them?:
Under no circumstances would I want to be a financial burden on my family or loved ones. If I have no measurable brain activity, I would not wish to be kept alive artificially. If I am in a coma or PVS I would like my agents to choose 3 doctors to examine me. If all 3 agree that I am unlikely to recover from that state, I would not wish to be kept artifically alive. If all three do not agree, additional doctors shall be brought in to examine me until 3 do agree one way or the other. The courts and/or hospital will not be the ones who choose the doctors that examine me.
My designated agents in this case are my parents followed by my girlfriend.
K1...thanks for the reply.
We usually cruise by whynots site and pester them in waves occassionally. And they return the favor.
As to your questions:
If they had found that defect when I was born a simple operation would have prevented my problems.
When my wife was pregnant this was a MAJOR issue, and in-utero surgery was an option. However intense scrutiny through ultrasound was conducted and our son developed normally.
Research conducted by our neo-natalogist found that my condition was rare, (the defect itself that is), and only ONE time did it appear within the same family, and that proved to be cousins, but it has never known to happen father/child or with siblings.
I am NOT against gene therapy, for medical reasons, however I see no reason to go fiddling with things like height or the color of hair or eyes.
I had a dear friend growing up that had the same problem you had. HE wore braces also.
I went to a school for the handicapped until I was in the 5th grade, so I was raised with kids that were different from normal kids in many ways. Not one of us ever whined about our conditions. A great friend of mine named Shane Losier (name for google purposes as we have lost touch and I want to find him), was in a wheel chair with a major deformity from the waist down, was an excellent skateboarder way back in the early days of skateboarding. He could outride most kids with the use of his legs. I am laughing from remembering the time he broke his arm before school when, as he put it, "a curb just jumped out in front of me".....thanks for that K1.
"EuthaNAZIa".....I like that spelling best.
And alcohol doesn't affect the kidney...that is the liver...believe me, I should know.
BEERTIME!!!!!!
Kender, I love you. As a friend, you are awesome. Thanks for sharing your story. I wish more people would share their stuff...makes us all human and that is so important!
God bless you.
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