Oct. 25, 2012 2:56 am
Updated: Mar. 17, 2013 5:47 am
As my supporting membership is winding down, and things are about to become very busy, I thought I would write one last blog to share with you in case I am unable to get to it before it is too late.
I have loved coming to AR since I stumbled upon it, oh, seven years ago or so. I was a very active member at one time, but unfortunately got a little turned off by some of the unnecessary drama and found myself better occupied by other activities. I have
since started coming back here and there, and am delighted to see some familiar faces, as well as some new ones. And, as in days of yore, I see much more of the friendly, helpful advice and caring friendship than the nonsense none of us need. I do hope that
continues to be the case, as this site, I believe, is meant to be a respite from the real life drama most of us have enough of already. A place to commiserate with good people about our commonality- food. And along the way, it becomes place to rejoice over
the good news, cry over the bad, and catch a few laughs along the way.
I have some news, and because so many people here have supported me from the beginning, I thought I would take a few minutes to share it here.
As some of you know, I have a very sick boyfriend. I have told the story of my "Kidney Boy"...how we met as young teenagers while I was on vacation, spent one glorious week together, and then lost touch for over a decade only to be reunited by the wonder that
is Facebook. Tentative at first, we quickly realized that our whirlwind week together was not merely a fluke...we were and are still very much in love with each other. This time around, as adults, geography could not and did not keep us apart, and we have
been happily living together ever since.
Sadly, medical issues are not quite as easy to remedy as logistical ones. Kidney disease is a nasty thing to battle. In our case, as is often the case with debilitating diseases, the doctors have no explanation as to why it developed...but reason or not,
deciding to rekindle my romance with my boyfriend meant jumping into a whole new world, wrought with uncertainty, frustration and just plain fear.
At first, it was hard to tell there was anything wrong with him. You had to spend a lot of time with him, live with him really, before the limitations became evident. Fatigue was the biggest one, and even that wasn't so bad at first. Then, he declined into
Stage 5 renal failure...end stage. Dialysis became necessary to keep him alive. It was an adjustment to be sure, but once the routine was set and we grew accustomed to it, we simply went on with our lives as best we could.
But this past year, things took a turn for the worse. I don't know how it happened- his numbers have been incredible, the best out of any patient at the dialysis clinic. Still, the weight started falling off rapidly and fatigue turned into exhaustion. He
has good days and bad; some days when he sleeps longer than he is awake. A lot of days like that. When he does have good days and we venture out to do something fun, it takes a good couple of days for him to recuperate afterwards. More and more frequently,
his body is wracked with cramps, his eyes ache too much to keep them open...he just HURTS. And throughout it all, the pounds keep dropping off, exposing more and more of his skeleton beneath his sallow skin.
Throughout this time, I have marveled at his incredible spirit. He is infectiously optimistic and outrageously funny. I am not going to sit here and paint an entirely rosy picture- he can be a total jerk sometimes, and I can be difficult and frustrating.
We have had our fair share of arguments. In the best of circumstance relationships have their ups and downs. But this kidney thing- that is never going to define who he is. He won't let it.
Having kidney disease does not have to be a death sentence. Which is both a blessing and a curse. It is a blessing for obvious reasons, and a curse for reasons not so clear on the surface. Imagine knowing full well that you are deathly ill but you don't
HAVE to die. That all it would take for you to live is one surgery, that one surgery could save you...but you can't have it. Imagine loving someone who means the world to you and watching them fade away right before your very eyes, knowing that it doesn't
have to be. There have been times when I just want to run down the sidewalk with a bullhorn and say "Look! Look at this man! If a train were barreling down the tracks and he were in its path, you would push him out of the way to save him. Why won't one
of you save him from this?!?!" Of course, in my rational mind I know better. To save someone from imminent doom is quite a different situation then the one we are in. And being an organ donor, especially a living one, is a monumental decision and one no
one should take lightly or be faulted for deciding not to do! Still, at times there is this almost animal-like desperation, this frantic panic when you are looking at someone you love so much getting weaker and weaker and you are powerless to stop it.
Of course, the blessing far outweighs the curse. And I am in no way trying to draw a comparison between people who have or have loved ones with terminal, incurable diseases. That is to be TRULY powerless, that is to have come to the heart shattering conclusion
that goodbye is coming no matter what...that hope is gone. In our case, through it all, we have had hope. A mere glimmer at times, but there nonetheless.
And it is so that I am sitting here writing this through tears I did not expect to come. Because my hope was at a glimmer point...a barely flickering point, really. I was watching this steady decline and bracing myself for the worst, fearing if too much more
time passed, that flicker would be extinguished, the chance for a blessing too late for us. But then we got a phone call that changed everything...
It is quite a series of events that led us to where we are now. Circumstances had to be just so...stars aligned...prayers answered. It is a long story, the story of how one man who has never met my boyfriend has decided to donate a kidney to him. How he
heard about my boyfriend and decided he wanted to do something to help. How he asked his family what they thought of the idea, and how they instantly and without question supported him. How it came to be that on January 3rd a man we do not even know will
give my boyfriend a second chance at life.
There is a lot of nonsense in this world. There are a lot of people who want to stir up drama where none exists. A lot of unsavory people doing ghastly things to others. Many senseless tragedies. It can be downright overwhelming and disheartening. And
then along comes a person like this man. He has nothing to gain from what he is doing. On the contrary, he is putting himself at risk and undergoing a painful surgery to save another man's live. A stranger. A complete and total stranger. It is the most
amazing and astonishing thing I can imagine...I could fill pages with what is my head, but when I put pen to paper (or fingers to keyboard), I find there are no words I know that can adequately express what I feel in my heart. This man and his incredibly
selfless gift has restored my faith in humankind. I am eternally grateful.
Because of this man, this journey I have been on with my beloved Kidney Boy will continue on...and that is all I have ever wanted since that warm summer day years ago when he first smiled at me, with a sparkle in his big brown eyes...