god bless you, nannie

"well, i guess we are going to be special friends"...

corny, right?

suave and sophisticated in the field of romance, i was not.

at the impossibly young age of 22, i told kevin we were meant to be "special friends" upon learning his birthday was january 26th.

ugh. what a dork.

[january 26th is the anniversary of my kidney transplant.]

it's been a recurring coincidence within our relationship.

both of our fathers were born on march 8th. his mother and my aunt, t, were born on january 7th, and then there's january 26th.

his birth and my rebirth.

we recently climbed into bed and popped in "valentine's day". how a film with 6 academy award winners/nominees could be such a piece of crap is astounding. and testament to the relevance of an academy award. or the direction of garry marshall. or both.

but, like, i totally, digress.

what is the significance of this date? really?

today, was october 18th, 2010.

because of overcast conditions, hubby was able to join with on another magical adventure down to cedars-sinai medical centre...

our post-cedars ritual usually includes stuffing face at "the soup plantation" and then working off cals. by strolling thru loehmann's:men's store in the beverly connection.

today was different.

today, nannie passed away.

phyllis may scott. kevin's nannie. the mcintyres' nannie. my nannie.

it was expected. it was peaceful. but, suddenly our spheres ceased to spin.

[pause. and reboot.]

let me tell you about nannie.

she was my husband's grandmother on his mother's side.

she was always immaculate in makeup and dress. (a gal after my own heart).

she would palm kevin $50's in a beautiful, heartfelt attempt to ease our financial strain.

she made the best egg salad i have ever tasted.

she kept our gift of a "JOY" christmas pillow out all year long. just because we gave it to her.

and she loved her family beyond comprehension.

her complete joy lay in their happiness and successes. not old school; just immaculate in her focus. relationships are everything. and nannie had her priorities straight.

i was not blood related, but nannie never let my birthday pass without a handwritten card and a monetary gift. ever. in 19 years. she accepted me, no, embraced me as family from the get-go.

how lucky am i? and how amazing was she?

nannie. i will miss you.

i will miss our egg salad luncheons.

i will miss your cozy apartment where that pillow lay.

and i will miss your quiet, gentle goodness. the familial love that emanated from from you at all times.

october 18th, 2010.

i will always remember this day. and i will always remember you.

and now that i have that "JOY" pillow in my home. i will have it out all year long. and i will always think of you.

i love you, nannie.

egg salad will never, ever be the same.

(UN) HEALTH BENEFITS

you know, i think i've been looking at this whole "chronically ill" thing all wrong.

there are actually, many benefits to my situation.

i need to re adjust my attitude; look at it from a "glass half-full" perspective...

FOR EXAMPLE:
-i save money on clothes, as i'm mostly clad in pajamas, or the like...

-i get out of going to the gym, due to lack of energy. (additional money saver!)

-aunt flow comes to town, maybe, every 3 months. no cramps, ladies! (thank you, prednisone)

-prednisone also gifts one moon face and a triple chin. smile lines vanquished! AND the fabulous bonus of appearing younger than one is...

["can i see your id.?"... "oh, really? shucks! me?"]

-you don't have to worry about budgeting, because all your money goes to medical bills.

-immunosuppression is actually light years ahead of its time...with a cold, flu, pink eye, bronchitis; you are laid up for weeks, instead of mere days. confined to bed, so much can be accomplished! catching up on movies, sleep, emails, uh, sleep...

-lying in bed for hours makes it very convenient and comfortable to be on hold with social security; billing departments etc...for hours on end.

-caffeine restrictions aid in avoiding the starbucks syndrome. (more pennies saved!)

-manifestations such as mouth sores, nail fungus, etc...garner pitious head tilts and mouth clucks...oh, and the occasional free meal.

-when admitted to hospital, it’s the famous CEDARS-SINAI in beverly hills! (as seen on beverly hills, 90210)

-when i go on dialysis, I will automatically receive a handicapped placard...bonus!

-there is a light at the end of the tunnel...although I think it’s the bill collector’s headlights coming up the driveway…

for further details on the benefits of kidney failure, please call 1-MYL-IFE-SUXS.

it's all in the details...

when i was a young girl, not even the age of three, i joined an institution i'd be forever linked to.

b.s.s..

the bishop strachan school. a private school for girls in beautiful forest hill, toronto, ontario, canada.

for 11 years i was a proud student. hubby likes to tease and label me as bookish, well, fine. step aside as i wholeheartedly embrace the stigma. i loved school.

we wore uniforms. learned etiquette. took pride in our appearance. and were cerebrally challenged at every turn. james herriot at age 11?

bring it on.

one of my "chores"...["chores"...honestly, like i grew up on a farm or something instead of in a downtown toronto apartment...] was to safeguard my uniform. iron my shirt, knot my tie correctly, replace worn laces and polish my shoes.

sure, pride goeth before the fall, but it was worth it.

to take a pair of tattered, worn out black loafers and take them from dull hibernation unto exhilarating sheen was empowerment personified.

and we were rewarded for it. bestowed with ribbons embossed in gold.

effort and consideration. good grooming. and courtesy.

one student, received one ribbon, every three months.

i proudly accepted the "effort and consideration" and "good grooming" ribbons on more than one occasion. but "courtesy" somehow eluded me.

[maybe i should reconsider that potty mouth, after all...]

tonight it was reported the chilean miners are hours away from rescue. one by one they will be lifted up within a shaft, not 22 inches wide, to be finally reunited with their families.

their suffering unimaginable; but somehow their last requests instantly humanized it all.

is vanity the great equalizer? no rather, humanity.

shoe polish. they asked for shoe polish. and shampoo.

an eventful night for news, indeed. the first american was injected with embryonic stem cells to help heal a spinal cord injury. based on encouraging data from mice who walked again (thank you, thank you, sweet mice...), one american will be injected every month for the next year.

expectations are low. but aspirations are high.

although knowing we are a long way from organ development vs. tissue development, it's beyond exciting to imagine a day when i will no longer have to take medication.

the dawn of a new age of medical therapy.

leaving the days of pills behind and entering a world where living, human cells treat symptoms instead.

at the risk of invoking sleep, embryonic stem cells are coveted above and beyond the adult ones that have already formed "blueprints". embryonic stem cells can become anything you direct them to.

much like a desperate actress splayed across the proverbial casting couch.

[oooh. low blow, henny, low blow...]

the crux of the controversy confounds me. these are embryonic cells discarded after use in IV fertilization...

hey, it's late. i'm not up for the debate. it's just where i stand.

a bunch of cells. and shampoo. and shoe polish. details disguised as minor, but actually enhance, celebrate and define who we are:

-the smell of freshly washed hair.

-the pride we take in our apppearance...right down to our shiny shoes.

-and the subtleties of science that can make or break your life.

the details are not all i have left. they are all i ever had...

skin deep

the whistle has blown. the tape has fallen. and we're off.

into the final portion of this marathon run towards another transplant. and as this run downgrades to a jog, then a walk, then a limp, we now move into the crawling portion of our program...

ladies and gentlemen, in fabulous technicolor: "end stage renal failure" , sponsored by: "cell cept, cyclosporine, prednisone, propranolol, norvasc, nortriptyline, zanaflex, lexapro"...

[well, you get the point]

today is canadian thanksgiving. apparently we feel the need to celebrate our holocaust of the natives on different days; but that's a diatribe for another time.

[yeah, i'm feeling saucy tonight]

although, i don't pigeonhole my identity as canadian, american, danish or latvian...somehow peer pressure pervades and on this day, i am coerced into reflection.

"what am i am thankful for?"...hmmmm...

yesterday, through the looking glass, the above images were unrecognizable unto myself.

[down the rabbit hole, indeed..."drink me"."eat me".]

like alice, from moment to moment i grow, then shrink. she was bored, looking for adventure. but i wasn't bored, now left with no adventure.

save an odyssey i'd rather not undertake.

those images vaporize my self-esteem.

[do i really look like that?]

usually a lean 115, i weighed in at 127.8 lbs /15% body fat /bp 145/95.

but, vanity's no longer invited to the table. health prevails as master of ceremonies, but he's flailing.

bloat. discomfort. irritation. pain. engorged tissues that can't release. a clogged system beyond repair. forget the drano. don't call the plumber. and lasix ain't working, babe...

[la, la, la, la...dialysis...la, la, la, la]

none of my clothes fit. i mean, none of them. i can't squat because gravity drags unfiltered fluid down to my ankles, up through my calves and throughout this exhausted shell. my skin so tightly stretched across this bloated frame, explosion seems imminent.

[los angeles, we have a problem...]

so, i'm not exactly in the mood to be all dewed-eyed and mushy about all of life's blessings.

ah. but then life throws you a curve ball.

from jerusalem via tel aviv came a ray of light.

["faster than the speeding light, she's flying"...]

you know, i don't miss being an actor. i miss being creative, which is why i write. and paint my house. and was a makeup artist for as long as possible. but i don't miss being an actor. especially in hollywood.

many, too many, moons ago my friend, j, commented upon my future plans to move to l.a.

"i just don't see you there"...

instantly wounded and hyper sensitive as i was in my 20's, i took offense. but her reasoning was complimentary, if not enlightening.

"you're just too real for a place like that".

[isn't there some platitude about people knowing you better than you know yourself?]

there's a inauthenticity in this business; insidious, as it invades and spreads quietly and steadily like a fungus.

"you look 18. say you're not married. take your wedding ring off. lie about your age. wear no makeup. look young. pretend you just got here and haven't been struggling for years. schmooze. get new headshots. you need retouching. whiten your teeth. straighten your hair. workshops. work out more. take classes. you're not pretty enough. you're too pretty. fuck. off. fuck. off.

FUCK OFF.

there is no artistic, emotional or psychological fulfillment in compromise.

breed art with business and your offspring is compromise.

when i look at my cousin, j's, painting, i feel his joy, his torment; his soul. no compromise.

and that's where i want to be.

so this weekend, while uberhubby piped artistic fulfillment throughout his lungs, i sat, legs elevated, alone, attempting to redefine it for myself.

my kidney is pooped. she's done and she can't keep up.

but, she's trying. so i will, too.

i can no longer be beholden to a philosophy; the unexpressed mandate that governs commercial artistry. i will no longer pretend to be something i am not.

so despite the eye rolling and deep sighs i am narcissistically convinced i evoke, i challenge with my own version of "survivor", the following...

take one week of your life. sleep 10-12 hours a night. include a 90 minute nap. you can't work. you can't exercise. you can't drive long distances. medical bills...side effects...food restrictions...

take away everything you love to do, then add 19 prescribed medications and a body you relate to in no way whatsoever.

[it sucks, right?]

it just plain sucks.

like modern art, my body is foreign to me now. at first glance, a canvas of chaos and confusion. but, in staring at j's work; i find the calm, vibrancy and beauty underneath the superficial violence.

and through my own effigy of disorder, i have evoked the same.

admissions of addiction, profound emotional connections and liberation.

liberated from a business i wasn't comfortable in from the beginning, and now liberated from myself.

i feel terrible. like elastic bands are twisted around every muscle of my body. tomorrow, i confer with dr. dauer over the anticipated increase in lasix. the reduction of nortriptyline to reduce my tremors. and what lies ahead.

[la, la, la...dialysis...la, la, la]

so i stare at this painting; enthralled. and i stare and stare at my body. foreign. strange. beautiful.

for there is beauty in authenticity. unretouched, raw, naked. that is where beauty lies. not in the retouched neck of "sex and the city"'s sjp. or on the glossy covers of magazines. or in any idea of what it should be.

beauty lies in acceptance of what is.

and what i am now is swollen. uncomfortable. scared.

authentic hen.

there is beauty in my triple chin. my swollen feet. my distended stomach. my high blood pressure. and my sweet prednisone mustache.

because it's all authentically mine.

so, this thanksgiving, i might have something to be grateful for after all:

my husband steading my tremoring hand as i ate my soup tonight.

the medications that labor to keep my kidney alive.

and the fact that i still have the opportunity to try.

all in a day's work

TO DO LIST:
thursday:

1) negotiate unrecognizable body part, due to loss of kidney function/swelling...check.

2) appointment with neurologist regarding control of headaches...check.

3) complete breakdown in therapy...check.

4) oct. 1st enforced transfer from mediocre health plan (cobra), to beyond pathetic health care plan (HIPA)...check.

5) purchase of one month of 5 of my currently prescribed 19 medications at $192.39...check

6) filing taxes with $12,771.00 in medical deductions.

soooo...it's 5 o'clock somewhere...anyone want to buy me a beer?

"you can't handle the truth..."

tonight i skyped with my family.

and by family, i mean my in-laws, and by in-laws, i mean, my family.

so there.

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 jodi picoult. 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...

[ah, homer...]

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.