Sunday, June 21, 2009

cycle of life.....

on facebook tonight, one of my friends asked me how i coped with my deadly illness of a few years ago.  
i rarely mention my illness because it was/is particular to me - it was a rare illness, so why tell the story - no one will benefit from hearing about it.  in fact, it will probably bore readers.  plus it is a real downer to talk about illnesses.  but my friend made me see that he would benefit because, although he does not have the same disease, he does have a debilitating one and wanted to know how to cope.   how. to. cope.  this is a good question....
so, the story is.....
 i nearly died of acute kidney failure in 2003.  i am OK now -my kidneys are stable, functioning at 30% which is enough for me.  i hardly think about it now.
but what happened? i hardly know, see, i had been working non stop for about 3 hours on my artwork one day, when i looked up and could not see clearly.  everything was fuzzy.  i had the light bulbs changed in my studio, but realized that was not the problem.  so, i went to the optomistist - she examined deep in my eyes and found i had uveitis - inflammation of my irises...which meant, she explained, that i had some sort of overall body inflammation, signaling something like an autoimmune disorder.
and so it was an autoimmune disorder - my body suddenly an without warning attacked my perfectly good kidneys and rejected them.  also, my eyes were attacked and my intestines were inflamed to boot.  i had been feeling fine - well, sort of, i was feeling tired, run down and a bit stressed..., also i was not very hungry and began to lose weight (i liked that part) but it turned out i was anorexic - not so good.  the problem worsened because i was not diagnosed immediately.  there was trouble identifying what was ailing me.  finally a topnotch nephrologist at scripps in la jolla figured it out.  the disease was called TINU (tubular interstitial nephritis and uveitus) meaning- inflammation of the back of my eyes and kidneys - which meant - my body was killing itself - identifying my eyes and kidneys (and intestines) as alien or foreign bodies and thus it needed to destroy them---- and rapidly went to work doing just that.  
medical book wise -  only 12 adults in the world have ever had such a problem! or i should say only 12 had been recorded.
 fortunately for me, my nephrologist had remembered such a case he had seen once in an emergency room or somewhere and was able to diagnose it in time to save me.  (he was vague about how he knew actually).  i was not a candidate for kidney replacement since my own good kidneys were being attacked - transplants would never survive....(but  deep, deep thanks to daughter brooke and brother danny for offering) .  i underwent 2 years of chemo - lots of prednisone 60 mil a day i think and the anti-organ rejection medicine called cydpro (?sp).  i did not, could not have dialysis because my situation was too dire.  instead, the prednisone began to work and stopped my body from attacking itself and started to allow some swelling to recede so that my kidneys could begin to function again.
god, i was so sick.  i could not move my head from the pillow.  my days were morphed into a different dimension - i viewed the word through tiny slits of eyes - i would blink and there would be my daughter (9 years old then) talking before her daddy took her to school, then blink and she was gone, blink she was back but it was bedtime......days, weeks - then months passed.  the dog stayed by my side at all times.  he knew.  i really love my dog for that.
prednisone has some horrific side effects.  one is-- it deforms you - giving you a moonface and swollen back and arms, weakens your thighs since it feeds off your large muscles.   plus, it makes you crazy.  for me, it had the queerest side effect -it compelled me to clean the house!!! that was totally uncharacteristic of me, as everyone knows.   when i started to feel better, i would try to buzz around with the vacuum cleaner - ah, but mostly my strength failed me and the house stayed a wreck.
so how did i cope?  well, i didn't have to cope, i was too sick to know i was sick.  but when i began to feel better, i cried and fought and was angry for my body failing me.   i freaked out a lot.  since i never felt it coming and it hit so fast -for years i was on edge worried that any little sign could mean death.  i  remained on constant vigil with my body.
 then i went through a long period of feeling embarrassed that my body failed me.  i could not speak of it.  
and finally, like all struggles in my life, i began to try to forget about it.  buried it, so i rarely talk about it.  this is not good either - it wreaks havoc on my memory.  (glad neither of my parents were alive to witness this).  not exactly great coping guidelines for my facebook friend, i'm afraid.
so, i try to acknowledge it - it is part of my physical history.  this brings us up to date.   so there you have it - my story of my rare disorder.....if you ever wondered why my output of art seems to be at a maniacal rate, it's because i have been too close to the other side - i feel i was giving a second chance do fulfill my passion and that life is short - all those cliches.  
and personally, i blame it all on peri -menopause - that stuff is shit.

*** this painting was creating about 2 years after my trauma - this painting  is about mankind -small, but many as in  fish  roe and my deceased dad (many of him) raising up on the left side like hooked fish and above middle is  my mom as the lure to the "other side".   it is entitled "fisher of men". 
Happy Father's Day, Daddy.  oxoxoox, forever.
as for rosie's dad - i hope he will share his gifts of chocolate and aged whisky with me.


Ted said...

Thank you. Thank you for sharing your feelings. Thank you for being so open about your life. Thank you for your art! And I Thank God you're
here to make the world better and especially because you're my friend!!


verobirdie said...

As far as I know, I'm healthy. But I thank you for this post, to remind me that life can change in a glimpse, and that this does not mean the end of the world.
This post is a great lesson of life.
Thank you for sharing it.

fredg said...

Dear Lisa,

Well, I can't possibly love you any more than I already do but I guess I do love you more for your courage and willingness to share. You life and wilingness to let us enjoy your art and writing and have a glipse of your life is very inspirational. Be assured that everyone you touch is a better person and now we have a better undertanding of just how fragile life is and how fortunate that we have you with us.

Love, fred

halcyon40 said...

Thanks for sharing Lisa. I too suffer, but mine is from severe degenerative disc disease that affects my entire spine causing constant pain in bones and muscles. Such a drag. It has been my life for the past four years and I try each day to find a way to live "around it" and not let it be my focus. Really challenging as you know. I find art to be such a joyful escape and it takes my mind to happier places. Now if only I were as talented as you! lol Thank you so much for sharing. It is helpful to know your story because it brings a sort of strange comfort to know I'm not alone in feeling at the mercy of a less than perfect body.

lisa bebi said...

hey halcyon40, thanks for sharing too. i do know what you mean, i also feel comfort and alliance with others who have suffered similarly. it's not a case of misery loves company, it's a case of i feel so alone because no one else in the world has this problem - and behold, someone has something at least a little similarly and maybe i am not so alone afterall. the alliance is a big comfort.

our bodies. sometimes i'm in awe of how well most human bodies perform considering the amount of neglect and harm we cause ourselves. and imagine the heart ticking away constantly without pause or breakdown for years and years without much or any maintenance. it is a miracle really -

Colette George said...

Look what happens when I leave you alone for 5 minutes..all hell breaks loose. (a little levity) My friend- I'm in total awe of you already-now you've become a god. I had no idea you've been coping with something like this...ahh jeez. You have been so on my mind...and now I know why.
Damnit BS Disease...I will carry you to our margaritas.

I've thought so many times how we abuse our bodies and how they continue to serve us.

yours, colette

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