tonight i skyped with my family.
and by family, i mean my in-laws, and by in-laws, i mean, my family.
for the most part, we just stare at each other via incomprehensible technology. well, at least i do. i am still completely besotted by the internet and all it offers. admittedly, i am a bit of a dinosaur. i recently eschewed an iphone in favor of a nokia from yesteryear.
so, shoot me.
but, having been alone all week, apparently i had nothing better to do than sharpen my comedic skills, and soon we were all roaring with laughter.
kevin noted, " wow. the less kidney function you have; the funnier you get"...
he continued, "you should do a stand-up routine at cedars...the dialysis unit...you'd have a captive audience..."
har, de har har har...
but what struck me, was why we could all laugh about this...
not too long ago, i read "my sister's keeper", by . the premise intrigued. the younger sister of her older, leukemia-stricken sister, had been held hostage by her parents her entire life. consciously conceived and engineered to be a donor for her chronically ill sister, she rebels at age 13, and hires a lawyer, seeking medical emancipation...
because she doesn't want to give her sister a kidney.
as i recall, the book was fairly balanced in its depiction of modern medicine. but, when i caught the movie on HBO, en entirely different scenario presented itself.
the sisters bonded over their "worries" regarding transplantation. "you can't cheer lead. you can't drink. and you CAN'T HAVE CHILDREN...all of which is false. my skin tingled. nerves inflamed. instantly enraged by these dangerous exaggerations...
mouth agape, infuriated, i was saddened by the misinformation that so many would ingest.
[the only warning to ever come my way, post transplant, was the slightly sarcastic, "well, you might not want to play pro football"...]
the most common question i am asked is, "if you're so sick, why can't they just GIVE you a kidney". and i have always responded, "the short answer is, there are people who are sicker than me"...
the longer answer is more painful. the truth is, thousands will die every year waiting for a kidney. currently, there are 80,000 americans waiting for a kidney transplant because not enough people are willing to be living donors, or have signed up for cadaver organ donation.
and dialysis is not a long term option.
[i don't want to talk about dialysis..la, la, la, la, la...]
and so that's why we wait. and wait. for years.
pardonnez moi, if i sound like a psa, but my attachment to this issue is so intense, visceral. and extremely pragmatic.
i want to live.
[and the idea that anyone will die waiting for an organ...and they do.]
they say that comedy is tragedy plus time. well, how long is enough? when is something funny and no longer deflated by pain?
and so i probe. and question. and challenge.
is time really the factor? or ignorance?
kevin and i can joke about the absurdity of our medical bills, my pill-popping and illness, because he is informed.
and that's why i'm wounded when i watch a rerun of "friends" and they make a crack about selling a kidney. or "family guy". or a dozen other shows that somehow find the need for a new kidney titillating. not aids. not cancer. [have you ever seen these diseases ridiculed on prime time?] for some reason, needing a kidney is hilarity unleashed.
it somewhat breaks my heart. because they think it's a joke. and this is where i get confused.
is it funny that people die waiting for kidneys?
is it funny that the black market encourages sales of kidneys to north americans?
is it funny that people are so desperate for a better life that they are willing to try anything?
really. what's so FUCKING funny about that?
hey. i have a sense of humor with the best of them. but when the comedy isn't rooted in truth, you lose me at "hello"...because ignorance ain't ever funny, honey...especially when stereotypes become fodder for the lamest jokes...
racist, archetypal, sarcastic humor. it just ain't my bag, baby.
and there's lies the rub. kevin is in it full throttle; educated, evolved. and so we laugh, [and try to laugh] over the absurdity of our lives. i need a kidney. i need kevin's kidney. i need my husband's organ in order to live longer.
[this vulnerability makes me want to tear every hair from my head...]
i've come a long way since my 20's when my intense, unabashed need for honesty muddled the subtleties necessary within relationships. i would huff and puff and blow your house down. but, it was kevin who nailed me to the wall like a high powered staple gun.
"you' ve had to fight for everything. fight for a sense of family. fight for your health. you don't have to fight me..."
and with those few sentences i was slayed.
it's a funny thing, consistently having someone in your corner. codependency loses at musical chairs and you're coerced onto an evolved stool in the corner.
you feel alone. but supported. unconditionally.
but, you're still pissed off.
i hear a lot...i mean, a lot, a lot, about how HARD it is for the people who love those who are ill. "it's so stressful; so challenging; so isolating"...blah, blah, blah. it pisses me off, because all i can focus on, is the option they have to walk away from the situation. i have no options. i am sick.
but, i'm jolted into an obvious realization. and this is why i am such an advocate of communication. no holds barred. bare naked.
maybe i need to understand how painful this journey can be for those who love me, in the same way they are trying to understand my personal odyssey...
i recently remembered that my father wanted to write a novel. apparently, he sat on the beaches of barbados, undoubtedly enjoying a brew, typing the next great canadian/british/latvian novel.
i love this image.
it connects me to a man i never really knew.
so, as i awkwardly stumble through these cyber-confessions, my intent never wavers.
"will you tell the truth, the whole truth, and nothing but the truth"...
so help me, god.