fast times at cedars high

today i was at cedars-sinai for a "stress test".

there's a twisted irony about it all.

i was in full on panic mode. this gal is not a fan of the unknown. lay it on me, mofo...THEN, i can deal.

when i arrived at cedars, after driving like the baddest biddy in beverly hills, i parked in the beverly centre; and crossed over into the imaging centre.

i always feel so glamorous being treating here...so "beverly hills, 90210". remember "ah-ndrea" had her baby, hannah, here? ah, the dreams i have fulfilled! i am too cool for school...

and so it went.

registration. pulling out the list of now (only 20!) meds i am on. insurance card. wristband.

though, on a voraciously narcissistic side note, my registration attendant thought i was 25...

fuck, yeah. i'll take it.

and so i waited. to get my heart scanned. IV in. injected with radioactive dye, i laughed inwardly at the angst my friends feel over a can of coke, or red meat...

what was swirling through my veins?

though freezing cold, the ridiculous comfort i felt confused this broken soul. i'm so used to these tests. used to the pain of the IV entering my vein. used to the gowns, the questions, the blood draws and the protocol.

doesn't make it any more fun, though...

then there was two, 10 minute heart scans, and then i moved over to THE TREADMILL. once upon a time, i ran 5 miles a day. that machine left me with a painful ache that never dissipated...

[goddamn, i miss my life.]

the other night, kevin and i watched "the road". i cheated as i was 1/3 of the way through cormac mccarthy's novel. i never like to watch a film before i have read the novel.

it's not for the faint of heart. it charts the father/son journey through a post apocalyptic world as they attempt to find better conditions in the south.

at one point, i turned to kevin and asked, "would you want to live like that?"

and so it raised the question of quality of life.

[don't look at me. i'm just a canuck with a big mouth, no kidneys, and a passion for life...]

but what would you put up with?

in this novel/film and margaret atwood's latest musings on a post-apocalyptic world ("oryx and crake" and "the year of the flood"), they challenge the elasticity of our limits.

what would make you snap?

those three novels paint; sculpt portraits of the ferocious will to live that exists within the human condition.

i often feel trapped. my condition dictates a life of drugs and transplanted organs.

i was slightly cynical in my last post. i am grateful for much, but sometimes, sometimes...

much like atwood's books where an entirely new language is created, i feel like i live in the land of the undiscovered; unconquered.

never mind the forest for the trees, where is the goddamn country?

but, it's here where it's always been. within me.

i can do this. but, do i want to?

["i never promised you a rose garden"]

and as i climbed into our station wagon, 5 hours later, i knew the answer was "yes"...

and then brandon flowers serenaded me all the way home...

ahhh...life ain't so bad.

eat. pray. love. vomit.

EAT

thanksgiving.

what a bogus holiday.

years ago, the white man slaughtered a bunch of indians, and now we gobble up long tables crammed full of high caloric goodies, after a brief, redemptive prayer of thankfulness, and some weak mumblings of gratitude.

[quick! think of something! before it gets cold!]

"i am so thankful for my family, my kids, my job, my volunteer work, my exercise..."

and the family clown, throwing out the cynical, "at least i have my health!"; always met with appreciative chortles.

[i do not have one of the above.]

truth is, i don't feel particularly grateful for anything right now. and before you quote me a laundry list of the things i have forgotten...trust me, i haven't.

i know i can walk, and i know i can see. i know i have a roof over my head. food in the fridge and i know i have a family of friends, in-laws and far away relatives.

society's anvil of expectation weighs heavily on me during these randomly designated holidays.

[apparently, no-one is safe from peer pressure]

PRAY

over the last few days, i have received two e-mails from my inlaws. this is noteworthy as k is typically the liason between their household and ours.

(but to receive not one, but two letters, must mean i'm really sick...that's right up there with the "make a wish foundation.")

c. brought up the tantalizing theory that being thankful is a matter of perspective. i believe being grateful should be mandated into law. but despite the countless times i have heard, "oh, but it's not as bad as what you are going through", i have always maintained that everything is relative. if someone's "worst" experience is a bad haircut; what else do they have to compare it to?

one person spews rage through their filter of perspective if a box full puppies is left by the side of the road; another's filter will manifest but a shrug of the shoulders.

we cannot always understand what someone else is going through, but we can be grateful.

and this is what i love about my in-laws.

they are religious in the best sense of the word. whereas i lie somewhere on the spectrum between "i believe in god" and "steer me clear of all religious dogma"; they lead a quiet life of action.

church is their community, not their crutch. volunteering is their call to action, not door to door solicitation. and though sometimes i'm sure they feel a gap between myself and them as wide as the grand canyon, they never stop trying to bridge it.

a couple of months ago, a package arrived in the mail. the customs form said, "shawl". i joked with kevin, "a shawl? what is this 1952, kansas?"

turns out the joke was on me.

inside was a beautiful letter from my in laws explaining that this was a prayer shawl. ladies in their church knit these and then the minister blesses them. they are meant for the chronically ill, disabled, struggling; to give them literal and figurative comfort.

i may not understand all that drives their religious commitment, but it's impossible not to honor what drives their hearts.

and bigger hearts you will never find.

LOVE

some things are sacred.

even i, henriette of the flapping tongue, concede to that.

i want to post a beautiful picture photo of my father and my aunt, t.

but, i know she is very private. especially in regards to daddy. so i will defer to this flower i saw in napa.

yesterday, she sent me one of the greatest gifts i have ever received.

(and i know how hard it was for her.)

7 pages of letters sent to her in israel, written by my father.

it took me all day to open the file.

first time reading them through, i could barely breathe. palpitations and sweaty palms. eyes swimming with tears at the sight of his familiar handwriting. oh, how i wished i could hold them in my hands and smell the pages.

just. breathe.

it was an emotional twilight zone at its most poignant. describing my "so, so beautiful laughing eyes and funny grin" in one letter. and articulating his own laundry list of maladies in another. using the term, "stop the world, i want to get off", as i recently did here on my blog. eerily fantastic. suddenly, nearly 32 years had evaporated and "dadddeeee" was holding my hand again.

sure, it's a matter of perspective, and ours are forever linked in the sphere of the chronically ill.

i may not have known him very well, but now i feel like nobody understands me better.

i love you, t.

VOMIT

yesterday, uberhubby and i were laid up in bed all day. [unfortunately, with colds, and not a second honeymoon]. k popped out to the store and rented 3 movies, one of which was "eat. pray. love.", starring julia roberts.

i turned to k during the opening credits and joked, "let's count how many times she does her horsey laugh."

we were up to #8, before k fell asleep, when julia was prancing around bali.

i did watch the rest of the movie. here's hoping the book is more satisfying, because the movie is ridiculous.

how many people can relate to taking an entire year off, no pay, under the guise of "finding" themselves?

apparently rich, beautiful, successful writers with an itch they need to scratch.

it made me sad that such a basic concept is apparently such a difficult one for women to grasp. this book sold millions and millions of copies. and the "double, double, toil and trouble", all boils down to one idea: love yourself first, and then you will be able to love others.

[you find yourself within, you find God within; not scarfing down spaghetti in italy.]

my friend c, once told me about her distaste for "lost in translation". hailed as original, thought provoking, and oscar bait, c quietly contradicted, "i just couldn't get behind this winey teenager moping around her hotel room all day long. i mean, she was in TOKYO!". the point being, c, couldn't relate to the characters, and thus felt alienated from the story.

ah, perspective.

much in the same way, i could not relate to the superstar, super stunning, writhing around on a changing room floor, trying to zip up her new "supersize" jeans, because apparently-shame!-she had developed a "muffin top."

where do women get these ideas? as with any anthropological dig, it seems to come back to that tried and true combo #2: genetics and environment. well, thanks be to my parents for apparently infusing enough self-esteem in me before everything went to shit. and thanks to the vikings for giving me some pretty kick ass genes...

by the film's climax, julia's face is all scrunched and red, her forehead vein excessively popping, as she sputters the reasons why she cannot say i love you, to her lover.

"i don't know why", she gasps...

for this character, it is her fear of losing the newly found sense of balance she believes loving a man, will upend. what she doesn't realize until the film's final seconds, is that our sense of balance is and must always be changing. to deny yourself love because it's not a calm boat ride is enslaving. to deny yourself anything, because you would rather flatline through life is stifling and regressive.

and seriously sad.

it wasn't clear that "liz" got this concept as she literally drove (a boat) off into the sunset with her man.

you can't control your life. you can only live it.

soooo to say, i have nothing to be grateful for...well, c'mon, ya'll know me better that that by now...

[happy thanksgiving xoxo]

encounters of the first kind

"all in the family" was a seminal 70's television show.

underlying racist humor, an unappealing protagonist and story lines that provoked.

even in 1976, that was right up my alley.

one unremarkable day, i was holed up with my daddy in his man cave. it's leathery, malted scent a cocoon that blissfully enwrapped this 7 year-old girl.

the closing notes of "all in the family's" theme song wafted throughout the room.

i commented. "too bad it's ending"... (i had a bizarre crush on carroll o'connor)...

he countered. "it's not ending...it's just beginning".

the ending credits scrolled up the screen, as the final notes drifted away.

and yet peter ivanans lay down a bet with his 7 year-old daughter.

"20 bucks says it's the beginning of another show".

part of me exhilarated to what i knew to be a no-brainer. and let me remind you. $20 was no small change in 1976. but part of me deflated into the truth.

the show was ending. that was clear. why didn't he know that?

but i took his bet, and reveled in our joyous banter and challenge.

["bring it on, daddy. bring it on"...]

scott padmore. that poor soul. back in 1977 he casually tossed out the words, "what's wrong with your dad?... and to this day, i have never been able to forgive him.

or forget.

i wanted to take him out back on those sanctimonious, private school grounds, and unrelentingly shred him to bits. i was nothing if not protective of my father.

a premonition of my own end of days?

or just pure, unconditional love?

first impressions are unfair; imbalanced.

how can we know a soul's true depth; the ocean it swims, in one brief encounter?

ridiculously inept evaluations. and all of us are guilty.

i was admitted to cedars-sinai medical centre in beverly hills, california on june 7th, 2010.

i lay in the e.r. for over 8 hours.

[we now call him "judgmental jeff, the e.r. nurse". oh, the behavior that primed him for his own SNL sketch..."so, you've had 3 abortions?"...she's no longer my patient".]

talk to the hand. god damn.

ok, then.

maybe jeff was having a bad day.

but it wasn't as bad as mine.

a cycle of increased tolerance, headaches, migraines and rebound headaches had insidiously and reluctantly brought me into a world of repercussions...

fuck you.

and so i encountered my own dance with first impressions.

"i have to talk to my supervisor and see if you need to be placed under a 51-50" (involuntary psychiatric hold).

"a 51-50 allows a qualified officer or clinician to involuntarily confine a person deemed to have a mental disorder that makes them a danger herself and/or others gravely disabled. "
no, no, no, no. this is not me...but, to them it was. on paper, i didn't look so hot.
there is a legitimate duality that lies within first impressions. there's the archetypal, cliched response. "oh, she's shy. she's a nerd. she's awkward. 
rarely to we dive below the surface and examine the dysmorphic situation beneath the waves.
but, there's also infinite layers of truth. impossible to dissect without the partnership of time.
i often wonder how my character would have been stamped, had not my husband frantically pulled aside the e.r.psychiatrist and convinced her i was not insane. 
first impressions. precious imprints that we easily cling to.
wipe away the visage and behold the truth.
f-ing ugly, right?

the remains of the day

sometimes i feel sorry for the younger generation.

cds, and blackberries, kindles and sexting.

they will never know the poignant crackle of a needle as those first notes float forth from your favorite artist's new release. never experience sprawling on your back, on your bedroom floor; soaking in every detail of a new album cover.

now cell phones replace lighters held aloft during the most profound moments of a concert. those tiny flames flickered in unison; a celebration of the universal power of music.

behold the nerd in me, but how can a computer screen ever compare to holding a novel in your hands? the weight. the tradition. the history.

and love letters. i have several, lying dormant in a manila envelope. and when they are occasionally pulled out, i experience them. i feel his emotions through the pressed pen's ink. ache at the yellowing paper; painfully underlying the velocity of memories. and drift away at the vague scent of romance wafting up-a little bit less, every time...

how can an email ever compare?

yup. i know. i sound like an old fogey.

["you know, i used to walk 5 miles to school and 5 miles back every day. usually in a blizzard".]

and yet, i am the last person who would ever take the industrial revolution, in it's latest or any capacity, out back and kick it's ass.

i know i am here because of it.

i have this strange fascination with jean harlow.

if you break it down, i suppose it is not altogether surprising.

she was a stunning, talented, extremely funny, magnetic actress who died of renal failure in 1937. at age 26.

there was no dialysis. there was no transplantation. they thought she had the flu up until the day she died.

the industrial revolution and its subsequent advancements has stripped us of much. and yet. and yet...

behold it's gifts.

jean harlow could not cleanse her blood.

jean harlow could not pop her pills.

and jean harlow could not accept another kidney and breathe the majesty of life once more.

but i can.

on november 19th, there was much i already knew.

phase 1: a line up of 7 other potential recipients. all waiting to register for evaluation. it could have been early morning sluggishness; but i suspect the energy in the room was fueled by tension and fear.

a gentle hand on my back.

"go and sit down, sweetheart".

and so i sat. and shook. and watched, as uberhubby waited in line.

sign here. wristband there. vitals complete.

phase 2: enter conference room A for a powerpoint presentation a la al gore.

yup, it's all "an inconvenient truth".

so much was familiar; but all of it unwelcome.

when you have had a prior transplant, you fall into a high risk group. you have most likely developed antibodies that could attack your second transplant. fortunately, cedars-sinai has a program (IV drugs) that assist the body in taming these existing antibodies, thereby allowing for the potential success of a second transplant.

but it all depends on the donor and recipient's compatibility.

phase 3: the one-on-one interviews.

nephrologist, fellow, social worker, financial consultant, nutritionist, transplant coordinator and...

surgeon.

who, by default, is required to fall into the "only in l.a." category.

my surgeon will most likely be willem defoe's ("the english patient", "the last temptation of christ") brother, donald defoe.

go figure.

as long as he can cut me an organ, i don't give a shit.

phase 4: a jigsaw puzzle of the most surreal.

i have a few more tests to complete. copies of my recent mammogram and pap smear. a psychological letter of clearance. ("no, dude, it was not a suicide attempt"). and a stress test.

once these pieces have been put in place, we can move onto stage 5.

phase 5: working up any potential donors.

they allow the work up of up to 4 donors at a time.

but tell me, despite the copious offers, how does someone ask someone else for a kidney?

[this should be a scene in a terry gilliam film. suggestions are welcome at the door...]

"hi, how are you doing? so...do you still want to give me a kidney?"

makes me want to puke.

all the jigsaw pieces have been thrown down on the table, and it's how quickly i fit them all together that is the key to the game. but, to my mind, it's no game at all.

for underneath it all lies the death of the american dream.

for those who are young and rich and healthy, a red carpet of opportunity spreads out before you.

but to be sick and financially challenged, you quickly find yourself in the gutter; mere, painful inches from that plush red carpet.

it's a business here. and they really don't give a shit.

there is money to be made off the sick. and when that vaporizes along with your dreams, you are dumped, and left for dead.

[canadian death panels? ha. don't make me laugh.]

how can one get well, when they are consumed by financial strain?

and how can one continue to play, when you realize the pieces of the puzzle add up to an entirely different picture than you imagined?

and so i wonder. what is better? the ignorance that jean harlow lived? not knowing what lay ahead? or the dreams that are placed on hold because of what you do know.
 

and then i realize, what i do know trumps any starring role, any red carpet premier and any veneer of glamour that may cloud my judgement.


doctors may suffer from a god complex occasionally, but that doesn't mean we have to nurture it.
[do not feed the animals...]

we have come so far with scientific advancement.

but in the remains of the day, there is no text, no email and no surgery that can replace the simplicity of the heart.

at one point during that power point presentation, the transplant coordinator spoke of a potential 5-8 year wait for a cadaver. she then spoke of the additional wait that high risk patients, like myself, must endure.

15-20 years.

k turned to me, with glassy eyes, and whispered, "are you ok?"

equally glassy-eyed, i whispered back, "yeah".

for i was.

jean harlow never had a shot.

but i do.

one in, all in...

the other day, i was telling our friends t and s that my transplant evaluation meeting had been moved up to november 19th. tomorrow.

t turned to me and deadpanned, "do you think you can make it to friday without overdosing?"

i laughed and laughed and laughed...

you know the kind. pure exhilaration that comes from trusting your friends have your best interests at heart.

[lock up your medicine cabinets, boys and girls. but, i'm giving it my all.]

6 months and minus 2 days ago, i overdosed on my migraine medication.

i have yet to blog about this, save a few vague references, but this was the reason my originally scheduled evaluation was postponed from june. i ain't no therapist, but even i can see the timing was no coincidence.

i told a few people; and even fewer people really asked; despite my personal, lifelong "open book" mandate. but that's ok.

i was hospitalized for 9 nights. it was the worst period of our marriage. my self esteem registered @ less than zero. and i felt like i had broken up with my best friend.

albeit, an incredibly dysfunctional bitch of a friend, who gossips about you behind your back, and sleeps with your husband. but regardless, she was gone. cut off from me forever.

never mind not seeing the forest for the trees, i couldn't find the g'dmn planet...

yet through it all, i finally felt connected to my father in a way i never had...

this is one of the last pictures of him.

for so long, i have been denied so much about him. and even if my ostrich of maternal persuasion, with her head buried so deep in the sand, ever decides to come up for air and talk, i now know this.

it was the best he could do. and it was the best i could do.

and when you know better, you do better.

the sun is going down on another beautiful california day. when i next see the sun, i will be embarking upon a new chapter in my renal magnum opus.

my hands are shaking. my heart is racing. i can't eat. and i am compulsively listening to "hallelujah"(k.d. lang), "la cienega just smiled"(ryan adams), "smile like you mean it"(the killers) and "running to stand still"(U2).

exhibit a: a barely 19 year old girl, weeks away from her first kidney transplant. [ralphie!!!!!]

exhibit b: a barely 42 year old woman, weeks (?) away from her second kidney transplant.

["one of these things is not like the other. one of these things just doesn't belong..."]

ahhhh....but, do not be fooled by the shiny, pseudo-70's jumpsuit or the shiny red hair...this is a woman with a uti infection. fungus and bruises. nausea and swelling and a killer headache. a panic attack that left her fetal this afternoon. and a mo-fo list of 22 officially prescribed medications.

[yup! for those keeping track! 2 more have just been added!]

but, DAMN, does she like to dance...

i loved my daddy so much. he was creative, intelligent, funny, adventurous, outgoing and loving. all the things i aspire to be. i loved every second with him. through the silly, the pathetic, the tragic and all the love. oh, the love...

but, let's face it.

he blew it. 38?

you don't have to die with chronic illness. you may want to sometimes...(hello, 120 fiorinal?)...but, you don't have to...

[at least, not right away... ;-)]

"one in...all in..."

this was how he would coax my brother and i into the back of our old jag. everytime.

forever branded on my heart...for he meant; all together or not at all...

so tomorrow, that's how i'll roll.

"one in...all in..."

for whether ya'll know it or not, you are all coming with me...

every text, email, fb post, call, letter and visit has resonated as deeply as my daddy's words. and i'll carry it all with me...

[and i don't think i can walk through those doors tomorrow without it.]

i can still hear his lofty, british accent...

but, what i hear more loudly is my own desire to live.

shit. there's never a fairytale ending. (c'mon, guys, give up the disney while you're ahead...)

but, tomorrow, i have a second chance. at even more life.

tonight, i say goodbye to almost 23 years with my mother's kidney.

i say goodbye to a compromised, difficult existence.

and i say goodbye to the idea that you can't survive addiction.

[for i am!]

i grieve for her. my beautiful, broken, damaged, struggling kidney that kept me alive for another (almost) 23 years. i love her so much. she gave me so much. and i did everything i knew how to do to keep her with me. she even has a name.

sophie.

["run from the darkness into the night..."]

it's less than 12 hours, now. somehow, i thought sophie would last forever. but, she's done.

spent.

so tomorrow, if you're with me; hold my hand. and hang tight.

for it's not "one in." it's "all in"...

organ [market price]

yesterday, this was my day.

got up @ 11:30 am. did laundry. "putskied" around house. packed for trip to marin county.

fell asleep on bed, while kmac finished shoot. [hum of client conversation makes for great background noise.]

arose at 4:30 pm. drove to northridge. dropped off houndie, mags, with besties s and t.

got on 5 north and promptly fell asleep again.

awoke at 9 pm. still on 5 north. chit chatted with uberhubby, until irritation overwhelmed.

[are we there yet?]

arrived at sheraton, pleasanton, ca. 11 pm.

nibbled, giggled and shortly dozed...

asleep by 2 am...

the other night, my favorite show, "modern family", stooped into lowest common denominator territory, and took at cheap shot at organ donation. some crack regarding selling an "organ".

synthesizer in hand, his dad replied "i think they mean a different organ, son".

WHY IS THIS FUNNY?

it fairly breaks my heart. because the devastating truth is that i have already been contacted on my blog, by someone in india who would like to sell me his kidney.

no lie.

i need a kidney. and he needs income; sustenance. a life.

yet this desperate need continues to be fuel for sitcom fodder.

why not aids, cancer, m.s.? why are these travesties exempt from hollywood's clutch?..

[AAAAAHHHHHHHH........]

tonight i was witness to a pre marital celebration.

our beautiful friend, s, is getting married tomorrow.

and i am thrilled; present. reveling in her happiness.

but, the greater part of me wanted to lie down and sleep. sleep for days on end. sleep until the pain dissolves and the agony fades away...

5 days.

5 days until i know the truth. 5 days until i learn my fate. 5 days until i have some answers.

there is power in knowledge. but. there is sadness there, too. for the microscope held up to the truth is powerful, yet painful. for who really wants to see the truth?

[i do.]

and on friday the 19th, i'll get a big ol' dose...

["a spoonful of sugar makes the medicine go down"...]

give me some sugar, baby...

stop the world, i want to get off...

there once was a girl with red hair, big opinions and broken kidneys. at age 19, she had her first kidney transplant.

i remember that girl. and at age 19, she naively believed this brutal disease would somehow exempt her from all further illness. that her quota had been filled.

a few days after her transplant, 2 of her 3 iv's had been removed. slowly, painfully, she made her way to the bathroom, and caught the first glance. of her new self.

distorted. disfigured. who is that?

plummeting guts.

insomnia embedded in her dna. 11pm, midnight, 1 am, 2 am. her recently hacked up mother snoring contentedly in the neighboring bed...

[and we're off.]

pacing the sterilized tiles of the toronto western; an iv of immunosuppressives lagging behind...

"honey, you need some slippers...stay warm..."

but, she wanted to feel. she wanted to hurt. she wanted to revel in the agony.

reaching the end of the hallway, she stopped and gazed out into the early toronto morning. dark, empty streets. random cars navigating. piles of fluffy white decorating either side of bathurst street. through double paned glass, the cold pierced through.

palpable.

and it was beautiful.

she could feel the peace of the night. the thick silence that pervades; post snowfall. and she wanted to be a part of it.

but life had posted a roadblock.

and this wave of realization washed over and pulled her under.

this is your life, now.

this girl. barely a woman; just wanted it all to stop. sweet release.

no more pills. no more doctors. no more illness.

sorry.

sweet, brave 19 year old, henriette.

it was only the beginning...

i often think back to that night. the night i realized there was no escape. no escape from illness, doctors, drugs, surgeries. they will always be a part of who i am.

ah, but, that night. the snow cascading down like a melody. the romantic silence when a city grows still upon nightfall. and the eerie calm of the sick within transition.

it was all there.

but it was not enough.

and today, at cedars-sinai, my head congested with more, yet even more information.

"let's try hytrin"...

a third blood pressure medication. this ain't good, kids...

[...but, i want to be around when your kids have kids...]

so bring it on. officially, 21 prescribed medications.

fingers that crack open with cuts. fungus. mouth sores. bruises. protein in my urine. undetermined bacteria. low hemoglobin. high creatinine. swollen face. lethargy. confusion. tremors.

ok. OK.

but, it's all me.

i'm still the girl with red hair, big opinions and broken kidneys.

nothing to fear, but november 19th.

there have been 3 events in my life, that have left me terrified.

on an inbound flight into denver, our pilot attempted to land twice during a tornado warning. descending within inches of the tarmac, we would violently lurch upwards into the turbulent skies. twice. and then endlessly circle around. the flapping of airline safety cards the only sound; as pin drop silence and heated panic infiltrated the cabin. sporadic moans and sighs riding parallel to this flip-flopping tin can. after years and years of flying the skies, i felt unspeakable fear. dry mouth. sweaty palms. drained blood. the works. and the periodic gasps from my husband left me feeling even more desperate, albeit somewhat amused.

"are you ok?"

"don't touch me!"

got it.

flying for 41 years doesn't prepare you for feeling so wildly out of control. no where to go, but deeper into your seat. nothing to do, but marinade in your own panic.

when we finally landed, the pilot soberly announced that had been his most challenging landing in 27 years of flying.

no shit, sherlock.

sitting on the tarmac, the plane rocked back and forth with the violent winds. ah, but even the lightning strikes that prevented us from deplaning and the nausea that soaked me from head to toe, felt like a safe haven after the chaos in the skies.

[not so friendly, after all...]

the second time, was on a winter road trip back from winnipeg, canada. (and undoubtedly our last). merging onto the 29 in south dakota, an oncoming storm picked up strength.

let me preface this by clarifying kevin is a cautious and responsible driver; unlike myself who occasionally gets caught up in the beat of my tunes, rather than the rise of the speedometer's gage.

[oopsy. hee. hee.]

it's a g-damn cliche, but it came out of nowhere. with flat, endlessly, flat plains surrounding us on all sides, the sideways winds streaked white across the car; windows, doors, everywhere. and too suddenly, there was nothing but white. crawling along at a snail's pace, i plastered my face up against the passenger window, desperately searching for the shoulder lines.

"keep straight. a little to the right, a little more. no, too much."

and suddenly, i couldn't see the line anymore.

and then there they were.

one.

two.

three, four, five...twenty.

abandoned cars in the ditch.

the more cars we spotted, the quieter we got. even miss daisy got very, very still.

this was bad.

and then from the great white monster, emerged mechanical insanity. an 18 wheeler speeding though on a diagonal. coming within inches of contact, kevin slid us over to the edge of the shoulder and we stopped.

but, if we stopped, we could get hit. if we continued, we could get smashed from behind.

our engine light was on. we were running out of gas. and i thought "uh-uh. i am NOT going this way". and so, i said, "let's go".

and with reprieve from the winds, and some stellar -ass, kmac driving, i was able to guide him to the next exit.

i think that gas station is one of the most beautiful things i have ever seen...

the third time is, i imagine, every woman's nightmare.

my darling piper of a husband was crashing at the "queen mary" ship, down in long beach, after a long day of drinking, uh, i mean, piping. all was good. i was to come down and join them for sunday's festivities.

and so off to bed i went.

but, crazy-like, in a haze, i awoke. to the creak of my bedroom door opening. to a sliver of light that sliced my eyes awake. and to a shadowy, back lit, male figure that stood in the doorway.

"aaaaaaaaaahhhhhhhhhrrrgggggghhhhhhhh.....!!!!!!!!"

[or something similar.]

stone cold frozen. "fight or flight?. neither. i was decimated by fear.

of course, it was my dorky husband..."but i called you!"

yeah, great, dude. i was ASLEEP. sigh.

so those are the top 3 times i have been truly terrified. BUT, there was an end in sight for all of them. despite the circumstances, i knew, only subconsciously perhaps, that things would end one way or another. but, now i live in the land of vagueness. capital city-limbo. planet-unclear.

my latest creatinine was 4. (normal range 0.5-1.4).

my last blood pressure was 160/100.

i am on 19 prescription medications.

these are the things that terrify. there is no resolution in sight.

last night, i celebrated my l.a. bff's birthday, (m), with a brandon flowers concert. in bed, on a post-concert high, i posted a few pics on face book. with a furrowed brow, hubby voiced concern. "you look too good"...

"but, i had a great time. i don't care what people think".

all of us that reside in the land of the chronically ill, have good days and bad days. i don't need to prove anything to anyone. i know what my life has become.

-i need to sleep 12 hours a night.

-i slept until 4 pm, the day after my birthday party in toronto. and afterwards, i spent that day lying on l's and c's couches respectively; half present at best.

-brandon flowers was the first rock concert i have ever sat through. [for a concert groupie; not my proudest moment...]

-and the day before, i vomited all afternoon and missed m's birthday celebration in hollywood @ the roosevelt hotel.

look. i know the truth. and that's all that matters.

i have enough fears i am trying to navigate. i am not concerned about "proving" my illness to the ignorant; and engaging in fear over their judgement.

so if i have a few good hours, let me celebrate them. and hold my hand through the rest...

no resolution in sight.

when i hear the pat, "there's a light at the end of the tunnel", i cringe. kidney disease is a life long, endless, sometimes unbearable journey. immunocompromised, drugged within an inch of your life. ok. yeah. i get it. this is my life. doesn't mean i have to like it. or not resent it. so, please, don't patronize me with meaningless platitudes.

sorry. just can't stomach it anymore.

our medical bills are endless.

my guilt is bottomless.

and my health is hanging by that proverbial thread.

there can be no "light", no hope, when so much is unknown. and unless you have been chronically ill, please spare me the "everything happens for a reason" or the "god has a plan" crap...ask anyone who's been chronically ill...well, it just doesn't wash with any of us. nobody willingly subscribes to this....

no resolution in sight. (third time's a charm...)

but ahead lies november 19th. bumped up from december 1st.

on november 19th, i will meet my pre-emptive transplant team at cedars-sinai.

one week.

holy shit.

is this really happening? is this really my life?

yeah. it is.

ok. yeah. NOW i'm terrified.