I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: HouseOfDialysis on April 18, 2011, 04:51:23 PM
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I was thinking back to the very first time I ever heard the words, "You have kidney disease and this will ultimately lead to failure of the organs in all likelihood." I think it was a good five minutes before I had an actual thought and not just seeing the white of being blindsided by something I should have seen coming. I had just heard my biopsy results and I had a confirmed diagnosis of Alport Syndrome(AS).
I had never heard of AS before but imagiine being in the prime of your life, just graduated with a college degree, newly married, thinking of starting a family, and then hearing that by age fifty, you may very well be deaf, possibly blind, and in complete kidney failure. At that moment, I went through every instance of life where I had done anything to deserve this sentence. What crime in my current or past life had I done to need these outcomes to balance for atonement? This did grow into a momentary depression for about a week. I remember being solemn to myself. I don't believe my wife noticed anything different about me at the time.I still had a Devil May Care attitude about it, but I suddenly had a new appreciation for life and that which I had grown up with already knowing about. My mother went into kidney failure in her forties. I watched maybe less attentative then I should have, as my mother was on hemodialysis for three years. Seeing her washed out after most of her treatments, I grew to despise the dialysis clinic. Being 10 years old and seeing your 40 year old mother having to go into a room with people who look like they are in God's Waiting Room caused more than trepidation in my young mind. My mother's fistula graft alone was something I couldn't even bring myself to look at. Twenty four years later, I look down at my very own fistula as a thing of wonder and assistance. It's funny how perspectives can change at the ends of a pair of 14 gauge needles.
In that one week, I ran scenarios through my head. How long I would live, what things I wanted to accomplish before two of my senses would fail me like my renal system would, and just what was life all about anyhow. Somewhere in that span of time, I compared and contrasted my condition with that of a cancer patient, someone with heart disease, brain tumors, and various other terminal ailments. Then, like a wet sack of hammers, it hit me like a rock thrown from in a glass house... We're all terminal.
To some that may come across as fatalistic or pessmisstic and not quite made for inspirational uplifting, but I find it quite the contrary. To my mind, it is quite a leveling and centering thought and an eye opening perspective. No matter even if I was the pinnacle of human health and physical conditioning, this mechanism that is my body will break down and decline in time, as does every living organism. We are finite manifestations of carbon that can not be destroyed as matter, but as sentient beings with a history relevant to other sentient beings we will no longer exist.
I am by no means embracing my end or that of others, I think it only heightens my appreciation for living not just my own life, but for the collective human will within us all. For those whose quality of life is lesser than our own, do they not take solace in their own lives? Is not a child with mental retardation, immobile except for by wheelchair, still able to laugh and smile at the world they live within? Can not a Stage IV cancer patient still impart a warm and compassionate embrace to someone who just learned they have a growth? My point is that nothing is a death sentence, because death isn't avoidable. We all will breathe a last breath, but I think I can speak for a at least a few billion folks in that we aren't ready to rush off to it. Life is a biological function, nothing more. But LIVING and EXPERIENCE are things that go beyond just mere existence. I am reluctant to quote that noted pop star, Tim McGraw, but he said it best when he sang with a twang, "Live like you were dying." It's often said that we'll never appreciate what we have until it's gone. I disagree. You'll cherish things much more when you KNOW they are going versus when they are actually gone.
I had a confirmed biopsy in 2004, fistula surgery in 2010, PD catheter installed in 2011 and started CAPD on February 21st, 2011. I am now moving towards CCPD next week and have been on the transplant list since June 2010. I have great support from my wife and my four year old son is walking smile factory. I'm blessed to say the least.
This may be one more lost voice in a cacophony of errands to run, bills to pay, and meme quizzes to take, but I can't help but to echo the call of Mr. McGraw. I encourage everyone, not just the ones with biological failures, to forgive, love, assist, and understand more each day to get the most out of others and ourselves. Life is too short to not live it, because we will all come to the end of our lines. Be sure you leave a few good marks on the world. Start today!
Love and Hope,
HouseOfDialysis
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Thank you for that moving introduction.
Brought tears to my eyes. Kind of hard to type with the blurriness. But thank you. Live this life to its fullest.
:flower;
Aleta
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:)
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That is a great intro and :welcomesign; . I am new here also, I just started PD on April 8.
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Adjusting well?
I'm one of the livelier people at my clinic. I introduced the staff to a little thrash and death metal, but I don't think they'll be jumping in the pit anytime soon. Neither will I when I am carrying fluid, anyhow.
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well well, great words and thoughts and feelings you've given us and from me a big :welcomesign; and ~hope~ for more of your thoughts :flower;
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:welcomesign; HouseOfDialysis, what a fantastic intro. I can readily identify with your feelings - what an incredible way to articulate them. I'm pre-dialysis myself and can readily identify with the desire to live my life to it's fullest and appreciate every single day you have.
I'm also reminded of a couple of great quotes from Randy Pausch. He was a professor who gave a lecture called "The Last Lecture" when he was dying of pancreatic cancer. Carnegie Mellon still has his webpage up: http://www.cs.cmu.edu/~pausch/ (http://www.cs.cmu.edu/~pausch/)
“We cannot change the cards we are dealt, just how we play the hand.” I know he didn't come up with this originally but he certainly lived it.
"You don't beat the grim reaper by living longer; you beat the grim reaper by living better."
You have a great voice. Thank you for sharing it with us. I hope you will continue to do so.
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G'day HoD and :welcomesign; :ausflag. Top intro, mate! You have expressed eloquently what I have been trying to say.
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Welcome to IHD, House of Dialysis. Great intro, but I'll talk to you in 10 years! :rofl;
I think they call it "The Honeymoon Syndrome"
Isn't it intersting to ponder death. I've pondered it for 25 years and I can only ponder it with sick people because it doesn't cross healthy people's mind. They just look at you like you are "morbid". It makes me mad that I've had to think about it. What brings me out of it is watching the news. There are healthy people everyday who have never pondered death..... but have now been taken.
So, that got me thinking .... where do we go? So, now I've had a chance to accept Jesus Christ as my saviour. I'm now at peace that when I do go, I'll have a place in eternity.
I encourage you to think about it. It is a whole new peace.
I'm glad you joined us. I hope you get a transplant soon. :pray;
Yes, everyone dies, but it still makes me mad that I have to have 15ga needles poked in my arm everyother night until I leave. :clap;
Rerun, Moderator :welcomesign;
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:welcomesign; HouseOfDialysis! Lovely to 'meet' you ... brilliant intro.
;D
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Welcome to the group, HouseofDialysis. Great introduction. Glad you found us!
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:welcomesign;
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:welcomesign;
Nice to have you on board - literally! Are you a writer? Truly your words are so expressive and deeply touching you could/should be.
God Bless.
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You are a writer. :welcomesign;
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I'm not a professional writer. I just get to my keyboard and go off the tip of my tongue. I actually was trying to get some freelance writing jobs, but the only subjects I know of in any depth are CKD and heavy metal.
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I'm not a professional writer. I just get to my keyboard and go off the tip of my tongue. I actually was trying to get some freelance writing jobs, but the only subjects I know of in any depth are CKD and heavy metal.
Then you have found an appreciative audience! :2thumbsup;
:waving;
Aleta
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I'll try not to disappoint.