teardrops on my kidney

i feel regret over my last post.

my creatinine was lower, but still not normal. and my BUN was horrific.

creatinines often fluctuate all over the map, and it does not take away from how i feel.

i'm still at 10% kidney function, suffer multiple side effects from my meds, and dream of the new kidney that will give me energy, strength and a new life.

it's a double edged sword. the greater wish is the quick deterioration of my kidney so a transplant can occur. but, there may be dialysis. there may be rejection. so, do i rejoice in results that prolong the life of this damaged organ?

no.

i am exhausted by it all.

the support of my friends filled me simultaneously with joy and broke my heart.

because this kidney is on it's way out.

tonight i lie in bed, sick, after flying on 2 flights to winnipeg. i almost always catch something in that recycled air.

["this is your life"]

but, i love my friends. they are my family. and i would be lost without their support.

was there a christmas miracle? no. but, there was love. you guys gave me love.

and this kidney of mine cherishes every shiny pearl...

miracle on 3rd street

i'm so confused.

my creatinine was 2.2 (normal range 0.5-1.4); down from 2.9/3.3.

but, my BUN was 52 (normal range 7-20)

"BUN is a marker for other nitrogenous waste. Thus, when renal failure leads to a buildup of urea and other nitrogenous wastes (uremia), an individual may suffer neurological disturbances such as altered cognitive function (encephalopathy), impaired taste (dysgeusia) or loss of appetite (anorexia). The individual may also suffer from nausea and vomiting, or bleeding from dysfunctional platelets."

my iron was normal.

my thyroid was normal.

yes, i feel like shit, but this kidney is hanging in there, despite all the side effects.

yes. i have certain challenges; adversity, catastrophic.

but, there was a gasp of happiness.

oh, yes, i'll take this miracle.

2009: my space odyssey

kubrick's film was an exploration of man vs. technology; a groundbreaking cinematic journey of human evolution. innovative. stimulating. thought-provoking.

much like the journey i find myself traveling.

when i saw dr. dauer at cedars-sinai this morning, i was exhausted. a 9:15 am appointment never bodes well with this night owl. but, i was invigorated by my intentions. it was time to lay it all out on the examining table.

now hear this.

i am often exhausted beyond comprehension. unable to work out much, do many errands, and certainly no longer hold down a job. i told him about my constant headaches, insomnia, lethargy, nausea and tremors. and i asked. were we just waiting? waiting to get worse?

["oh, don't you put me on the back burner"]

my blood pressure was 140/90, so we changed my drugs once again.

my hemoglobin was 9.5 (low end normal 12), so i had a procrit shot. i may need these more frequently.

i had an H1N1 vaccine.

when my CBC comes back, he will evaluate my iron level, and there may be more we can do to help my energy.

and we will evaluate when my creatinine comes in.

["doctor, everything'll be alright"]

"I WILL FOLLOW that method of treatment which according to my ability and judgment, I consider for the benefit of my patient and abstain from whatever is harmful or mischievous."

first do no harm, indeed.

and reminding him of the downward spiral i find myself in, he validated, "it's depressing".

many have inquired as to why i am so unwell and waiting. and the short answer is, simply, there are thousands who are sicker than me. higher creatinines, greater nausea and endless dialysis.

so for now, i devolve. and i wait.

but like, the film, i trust one day, this human will evolve. man vs. technology will unite on my journey and i will wait no more.

there will be no HAL on my journey. there's no villian here.

my HAL will give me hope, vitality and sustenance.

and that's a film that's yet to be made.

more is more

the scream

there is no pain like a migraine. when i endure the suffering, i often think of the painting that hangs in the national museum in oslo, norway. "the scream" by edvard munch. it depicts unbearable pain. clutching. grasping. constriction. throbbing shrieks.

i wish this for no-one.

crazy and insufferable.

but, suffering abounds everywhere.

and so my pain is relative. bearable, indeed.

but still i endure, tolerate and survive it all...

migraines-they conquer the best of us.

death and the maiden

my christmas time has always been riddled with melancholy. consumption. disney-esque enthusiasm. haunting carols. my father's favorite carol was "good king wenceslas". 31 years ago today, i lost my father at age 38. dec. 13th will always be infused with sadness and regret and loss.

and yet, the "true" meaning of christmas is the opposite. joyous celebration. a miraculous blessing and gift for mankind. but, i struggle. how to marry my endless grief with pious bounty.

i have no answers. as i have no answers for his death.

this was the photo displayed at his memorial service. do i wonder why i was the only one included? yes. but does it bring me joy?

yes. oh, yes.

joyous celebration.

my very own christmas time...

house of pain

gimme shelter

drugstore cowgirl

i've never been one to spring out of bed.

2 kidneys, one kidney, 10% of a kidney; i am a certified night owl.

but this morning, lying in bed, eyes fluttering open, it struck me how much longer it now takes me to drag my body up and out. never mind my mood which has always been questionable. "henriette's really not human in the morning". how eloquently my mother warned my future roommate. (for you, j.)

creak. creak. tightness in the hips. swollen fingers. tense jaw. puffy eyes. no, i have never felt "good day, sunshine" vital, but now i feel drained right from the get go.

over to my medication drawer.(yes, i have a drawer), and there it was. the latest addition to my unwanted family. like second cousins one frets about inviting to their wedding; i understand the significance of my drugs, but wish them far, far away.

i am now on sodium bicarbonate. my CO2 level last time was low, indicating fluid retention i.e. kidney failure.

["one step close to knowing"]

recently, i have been taking my pills with strawberry milk. certain juices are prohibited as they interfere with absorption, and water simply doesn't mask the taste of the non coated beast, prednisone. but there's another reason.

daddy used to make me strawberry milk.

it's one of the few endearing moments i can recall. it's like having my hand held, or my back rubbed as i swallow 18 pills in the morning and 10 pills at night. so i spin this twice daily ritual into something slightly comforting. and i take mr. sodium bicarbonate by the hand and begrudgingly say,

"welcome to the family".

ray of light

another day older and deeper in debt

luminous

stairway to heaven

smile like you mean it

it's no secret that i love "the killers".

ecstasy. transportation.

i've seen them in concert 9 times; every time unique. in toronto, my bestest pal k. proudly presented me with a drumstick. i remain in awe as to how she conquered the crazy canucks. battered stick in hand, i promptly burst into tears. oh, how i can gush. an amazing moment. my heart overflowing with so much more than just a concert.

my love for concerts goes back farther than i would care to admit.

is music the universal equalizer? or is that pain?

i am familiar with both.

my first concert was at age 8. the Osmonds. [yes, i was obsessed with donny's purple socks]. ABBA. the only concert they played in toronto. and then pat benatar.

she rocked my world. amazing. exhilarating. powerful.

a role model, indeed. and then i was obsessed with concerts in high school.

"you don't drink, don't smoke, what do you do?"

concerts leave me spent. a high like no other. meeting friends, sharing joy and embracing a shared love. music transcendent.

i do experience joy. it provides me with happiness, contentment and satisfaction. perhaps it's lame, but i'll take any gift offered to me.

and as for the "killers", well, they fill me up. make me happy. and that fuels my soul.

and so i'll take it.

and when i do, i smile like i mean it.

internal clock

i've always been aware of time's fleeting breeze. tick. tick. tick.

perhaps it began when my father died. or perhaps it began when my mother's kidney became mine.

or perhaps i hear it now.

nevertheless, i've always heard a clock ringing in my ears.

life is short, indeed, and to be present in every moment remains a challenge.

i have struggled with this. there is no security. idealism, yes. but there are choices. choices we make, but have little control over.

a long time ago i made a choice. controversial, yes. but it resonated deep within me.

i never wanted children.

ah, i briefly flirted with the idea when k and i looked after our godson, mr. e, one day a week for a year. yes, i fell in love. but plentiful reasons for my abstinence abounded.

my health was first and foremost. exhaustion. disappointment. overpopulation.

reduce, reuse, recycle.

will i be met with the proverbial "you'll never know the love of a child?". most definitely.

adoption. fostering. they ignite the soul. valid. practical. spectacular. choices i embrace.

but there is so much more to this decision.

losing my father at age 10 to such a vile, despicable illness scarred my heart. and now i am estranged from my mother and my brother.

lost. floating. orphan.

am i cynical? perhaps. i suffered a painful youth and the present is filled with disappointment and regret. my family unit destroyed. i no longer believe in family. my family are my friends. i love my friends and their offspring. they bring me joy, enchantment, delight, respect.

but that journey is not for me.

not for me.

so my internal clock is not the throbbing of my womb. my uterus lies dormant.

my clock reminds me of the days i have lost. the days i long for. and the days i hope for.

end of days?

ode to pierre trudeau

ah, insomnia. you plague me...

i recently watched a documentary on "cirque du soleil". the spectacular canadian movement troupe. i've seen "O", "Le Reve" and "Zumanity", and my jaw hit the floor every time.

this one was called "all together now" and explored the collaboration between le cirque, the remaining beatles and their spouses, and sir george martin and his son. the dynamic present was fascinating and it renewed my love for beatles' music. i especially loved paul's less than modest comment..."we were a fucking great band!". yeah, you were...

oh, my throbbing heart. tears dropped.

i had an "a-ha" moment, recently. whenever i listen to beatles' music, i am transported. tears well up and my heart is full.

they were my dad's favorite. their melodies often played upon his tongue. he wore out our record player with their albums. and i remember his serenades of "octopus' garden", "i wanna hold your hand" and "yellow submarine" in the car, at home; everywhere. yes, we shared the love of music.

and so much more.

my postings about him have been intense; but i need to embrace his whole in order to be at peace with his legacy.

he loved music. he often sang in the car. (like me). he was outgoing. he was creative. he was intelligent. he was organized. he was adventurous. he loved to travel...and he was chronically ill.

beautiful disasters...

"i'd like to be, under the sea, in an octopus' garden in the shade"...

we traveled to ottawa, canada when i was oh, but just a girl. he wanted to show us the world. england, peterborough, sudbury, washington, d.c. and ottawa... and he taught us so much. he often kept us at home because he believed queen elizabeth's 25th silver jubilee to be more important than school.

priorities.

when we went to ottawa; we were spoiled. but there was a plan in place. we visited canada's parliament; where trudeau reigned.

magic. amazement. humility.

as our prime minister spoke, i watched in rapture. daddy bent over and whispered in my ear. "look how he wears a carnation in his lapel". "it's his trademark". "he's never without it". "it's my favorite flower, too".

i often buy these flowers. they grace my table tonight. i've often bought them for him. and i have placed them on his grave. they last forever, as i wish he could have. and they bring me joy.

i feel pain when i think of him; but my memories are joyful, too. and despite everything, it's time to embrace joy, joy, joy.

i feel so connected to him; in so many ways.

and the carnations bring me home to him.

bring him home.

constant craving

swimming with sharks

vanilla sky

while you were sleeping

yesterday was american thanksgiving. (i make this distinction only because i hold 3 passports). admittedly, i was not feeling very grateful when i woke up. i was on day 9 of a painful stretch of headaches. the first few days were probably rebound headaches (don't feel sorry for me). the next few, a symptom of my long awaited period. (still not welcome after a 3 month drought). and now i wake up with excruciating sinus pain-from a cold or newly acquired allergies, or just plain ol' 10% kidney function, i am not certain.

sigh.

so, i dragged myself around. taking, apparently hours, to make the bed, dress myself, wash a few dishes. stopping periodically to ice my neck and drink some water. no appetite. crawling out of my skin.

but, slowly, the headache began to lift. never quite leaving my body, but affording me the opportunity to rejoin the world.

and through a furrowed brow, watering eyes and roman-column-stiff neck, i realized what a world it still was. and still could be for me.

i watched gloria steinem speak once, perhaps from the naive perspective of someone who has never been chronically ill, about her desire to be alive at age 90, even if only one eye worked. because she "didn't want to miss a thing".

i think of my danish grandparents every day. bedstemor and bedstefar. they are now 91 and 89. bedstefar is now blind and bedstemor was recently hospitalized for 2 weeks because of chronic pain due to osteoporosis. (an argument for exercise to be certain. this is a woman who swam every day well into her 80's). they both suffer from dementia. and yet, it was only a few months ago, that they traveled to sweden for an overnight trip.

yes, i could make a laundry list of the challenges kevin and i have been presented with over the last 2 years. i often refer to this period as our "perfect storm." perfect imperfect. ugh. you know the drill. kidney rejection. plummeting economy. real estate crash. daisy crosses the rainbow bridge. health care costs. debt. estranged family. wildfires. shingles. pills. too much. too much. too much.

TOO MUCH.

"How many times can I break till I shatter?
Over the line can't define what I'm after
I always turn the car around"

[f@*ing great song]

and yet.

i always turn the car around.

when we left the house, the warm 83 degree air enveloped me. end of november. let me tell you, for a canuck, this never grows old. the california sun melted into the hills as we drove to DuPar's on Ventura Blvd. for a very l.a. thanksgiving with very cool friends. drive along mullholland. our pad. grey goose. great conversation. giggles. hugs.

waking up this morning, i snapped this. i still have a headache. (i only had one g. goose). i still have an ice pack on my neck. and i'm not moving much faster. but my thoughts are. zipping in and out of my foggy brain.

friends. a fridge full of food. my fingers that still type. the thanksgiving dinner we are going to tonight. margaret atwood's new book. thank you notes from kevin's clients. a text from m. stupid sitcoms. the view from my house. this great cup of coffee. phone calls from toronto. pictures from tennessee. emails from boston. gift baskets from vancouver. postings from denmark. love from winnipeg.

and this guy.

he smiles when he sleeps. he likes to tease me that it's the only time he doesn't hear me nagging. but he smiles all the time. and there is nothing like his laugh. and his sense of humor. and his own brand of wisdom. and the fact that he is lying there beside me.

hmmm...what's that in the warm california air?

[so i'm a day late]

smells like gratitude.

pop kulture

splendor in the grass

stand up comedy

said the husband to the wife, "i think i'm going to shave my head."

WHY? why. why. why.

"i'm trying to accept my hair loss".

said the wife to the husband, "but you're not bald. i like the hair you have."

"you don't know what it's like to lose your hair".

hmmmmm....

"well, at least you have 2 kidneys".

[I'm KIDDING.]

the wife continued, "i mean, if that's your biggest problem".

the husband mumbled, "that's not my biggest problem".

"oh, am i your biggest problem?".

"you said it".

TOUCHE and well played.

high school confidential

the other day, k waxed poetic about the relative ease that was high school. but for me, it was a troubled time. like many, it was isolating. at 13, i had already been diagnosed with kidney failure. there were clinics, hospital visits and pills. a kidney biopsy at age 14 challenged my walking ability. 10 days on bed rest. bedpans filled with shit. fainting at Sick Kids after one too many pokes. ease was nowhere to be found.

my father was gone. and out of the ruins, my mother built an oasis. back taxes aside.

wicker furniture in the living room. powdered milk. discount blocks of cheese. riding the subway at age 8.

there was no car for me at age 16. no sweet sixteen.

and so, do i long for the days of high school? no way, jose. not by a long shot.

alone. vacuumed away. sucked into a deep, black hole. perhaps we all felt that way. insecure. lost. frightened.

when george orwell wrote about 1984, did he anticipate the mirror of 2009?

government surveillance, mind control, perpetual war and the voiding of citizens' rights.

philosophies that have streamlined over time. blossomed. and prevailed.

my loneliness in high school was a boundless ache. misunderstood. empty. and so, i tried. GO WEST. a mask of second hand clothes, cliques and mooning over the unattainable god. but who gives a fuck. it was only high school, after all.

but as i sigh, i realize, like "1984", not so much has changed after all.

i still feel misunderstood. insecure. and alone.

but, now, instead of sobbing over a misplaced zit, or the glance he didn't send my way, i ache for the understanding that no-one can provide. when george orwell wrote about mind control, i'm sure he didn't mean expectation.

but, perpetual war. i've got that one covered.

father figure

my father looms large in my life.

memories sting. consume. ache. throb. throb. throb.

he was mysterious; unknown. an enigma.

how i long for unwrinkled, silken times...painful recollections.

vomiting into a paper bag at a soccer game. asking me to identify money. a 10 or an 100? was he too drunk to tell?...my mother turning him away from our temporary home because he was too drunk to drive. beer bottles scattered throughout our car. some for drink. some to pee in...2 months in the hospital. loss of teeth and short term memory loss. a father with dentures and a pad in his pocket to help him remember. losing teeth at the dinner table as my mother giggled in embarassment...clenched. bent over the toilet in pain. an accidental drop of feces observed as i peaked through the door's open crack...the weekly visits to The Beer Store. never ending cases. endless. the musical roll of the the track. the leathery, medicinal smell. these were our field trips...the diamond/sapphire heart he threw my way because my mother didn't want it.

she didn't want it.

and then there was Scott Padmore.

once glance at my father and his big trap flapped, "what's wrong with your Dad?". Fuck You.

what was wrong, indeed.

31 years later; painful revelations. was he really being investigated by the RCMP for drug abuse? and did he really sneak out to his jaguar for covert sips of his golden nectar?

my heart ached all over again.

a diabetic, alcoholic, drug abuser.

am i my father's daughter?

i watched him prick for sugar levels, eat a candy bar when low and suck back the Molson Goldens.

and through a toothless mouth, he would smile and declare his love for us. a stumbling frame wrapped in a robe of alcohol, cologne and warmth, he would enfold his babies. bending over my bunk bed with a goodnight kiss dancing upon his lips, he hit his head. i softly whispered "i'm sorry", and the words i will never forget. "henriette, it was my fault. you are too sensitive for this world".

maybe i am. and maybe he was the only one who ever understood me.

a chronically ill, drug addict.

31 years later, i still miss him.

waiting for a star to fall...

i am a drug addict.

i wrote about this a year ago and comments abounded.

but, nothing has changed. contact brings silence...they never ask; when what i crave is support, help. understanding.

i am weak. desperate. and lost.

but is it up to my friends? no. it's up to me.

yes, there are therapists. but the brunt of the work is mine.

and with these headaches; this apathy; i often turn to the one thing that will briefly ease my pain.

no, it's not a long term solution; but for a few days, i forget about my world.

i hate the world i inhabit. am i my father's daughter? perhaps.

and perhaps it's the only way i can connect with him.

he was weak, lost and desperate, too.

release the hounds!

100 homeless hounds. volunteer work was never so heartbreaking...

halo

maybe i'm unfair. intolerant and impatient. but i must confess that a fire often fills my veins along this road...

i have a blog. i have facebook. and over the last (almost) 2 years, i have informed many as to my condition. people throw such vague comments my way. casual. unspecific. and callous? and it drives. me. insane.

what am i to do with "tell henriette i hope she feels better"?

i won't feel better for MANY, MANY years.

but maybe, it's the best they can do. i try to see it this way, but it still breaks my heart.

disconnection.

some friends have dropped by the wayside, yet others have risen up. with light that infuses me. angels i adore.

the best thing i once learned in yoga was to release all attachment, and honor your body. droplets of wisdom that have stayed with me.

pearls. crystals. they sparkle deep within my soul.

it's the little things that stay with you. but as i've said before, they are really not so little after all...

stay with me along this journey...

i am not perfect, and i need you angels.

carpe diem

forgive me.

little girl lost.

i pound my fists. tantrums ensue. WAH! love me. love me. comfort. sooth. connect. please reach out on my blog/fb...

oh, i need to release expectation; attachment.

maybe the stars are my audience. the milky way. yes. the black holes hear my heart.

yes, something does. something bigger than me.

so here are the latest stats...

i haven't had my period for 3 months. my headaches and migraines are common, as is my insomnia. my tremors come and go, much like my exhaustion. but i am always tired. i bruise easily. my appetite has been better, but it often wanes. my blood pressure is more under control, but nothing like it used to be. the diastolic still 10 points higher than i would like. i often get pains in my kidney. OW. ow. ow. ow. my latest creatinine was still 2.9 and i can't shake this cold.

but, these are the facts. only the facts.

AH.

the day before my 41st birthday i went to cedars-sinai. routine check-up. unfortunate high blood pressure. biggest destroyer of the kidney. the lab. 3 pokes. blood. flu shot and an epogin shot. and i still need an H1N1 vaccine.

par for the course, now. but for me, not status quo. never status quo.

and then, an appointment at the social security office. i had applied for disability benefits.

oh, how the mighty have fallen.

the timing was poignant. my 41st was hours away, and i couldn't help but reflect.

sometimes i lie awake at night, scared and overwhelmed. my doctor's ridiculous description of dialysis, "renal replacement therapy", swirling through my mind. eroding, prevalent change. shifting topsoil. a slippery slope.

an avalanche.

i never believed in society's agenda. graduate. get a car. get a job. a house. have kids. a 401K/RSP. acquire, acquire. acquire. consume. consume. consume.

illusions of the mind. meaningless.

i loved my life. my husband. my work. exercise. my hound. my family. even my home. my sanctuary. joy. joy. joy.

compromise. despondence. painful loss. OW.

when my social worker inquired as to the last day i had worked, i quivered, "nov. 1st, 2008". surreal and strange, my heart fairly broke. and once again the tears flowed. the lovely woman offered a tissue. compassion flowed. but when i left, i couldn't help but ache.

ache for all i have lost. ache for the life i miss. and ache for the 41 year old who needs financial help and feels like cedars-sinai is her second home.

and yet, i am aware of how blessed i am. my husband fills my soul, as do my friends. i still love my home. california continues to amaze. sunsets, warm breezes, endless exploration, amazing people, our view, and unknown opportunities. things could be so much worse, and i hold this close.

it's my one true thing.

i'm not in an animal shelter, not in foster care, not starving in africa, i have all my limbs and i am loved.

and so i'll take this compromised life. despite my fears and worries. needing to let go of my self judgment, i look up to the stars above.

"the night is full of holes, this bullet trippin' sky of ink and gold".

do i feel like i'm falling? all the time. there could be another 1-2 years ahead before i am on a list.

and so i look to each daily moment.

a bouquet of flowers on our table. a text from m. massages from k. a great meal. a good day with harnessed energy. my new margaret atwood book. calls from my friends. music. the california sunsets that never grow old. the fact that i am not on dialysis.

the fact that i am not on dialysis.

at the end of the day, i'm alive. i'm not thriving, but i'm surviving, like so many others, and they are often in my thoughts.

life. she's a tricky one.

and here's to her.

owner of a lonely heart

i had a moment today.

i'm not looking for pity. sympathy. or empathy.

i'm not being maudlin.

but please, just let me share.

despite this lingering cold, i plugged away at some errands today and then arrived at the gym. the errands challenged me in a way that is becoming more and more frequent. last week, the same thing happened. i got up, dressed, pulled myself together and piled into the car. errands on the post-it; attached to the dashboard. but when i arrived at the supermarket, my body betrayed. limbs moving through tar. sluggish. i pushed forth, an unrecognizable feeling spreading through me. i moved at half speed; slow-mo.

it frightened me. it was 1987 all over again. sitting at a performance of "old river" with my dear friend, n. resting on her shoulder during the entire performance, because the alternative was impossible. regretfully leaving a u of t psychology class. i poured a swimming head and staggering frame into a cab, because the streetcar seemed like too much effort. leaning, depending, on my mum as my beagle ralph, charged through high park. bundling in my bed. radiator blasting. countless blankets that ralph would snuggle under until he could bear the heat no more...

end of days.

or the days of carefree health to be certain.

and so it seems i am faced with that again.

when i arrived at the gym, i was already spent. overwhelmed by my limitations. i know i need to give myself permission to be ok with this. but, fuck. i feel cheated. robbed. and alone.

the thought of climbing the stairs up to the cardio room seemed insurmountable. could i really be the same girl who used to run 25 miles a week...? now "swallowed in the sea"...

and so i sat. in my car. pondering. attempting to ignore the ache in my heart.

and then the phone rang. my husband. pouring out affection and support and the tears streamed down my face.

a precious gift.

like out of a movie.

kleenex in fist. dab. dab. dab. sighs from the great beyond. quick glance in the mirror. i summoned my courage and guess what, i climbed those stairs.

and for 10 minutes, i gave myself permission.

i may not be a marathoner anymore, but i am a goddamn fighter.

red ants marching into the night...

hot zone

hail to the peeps

toxic blossom

fountain of Youth

beloved

empty chairs at empty tables

house of sand and fog

heart of darkness...

dead man's party

cherry and leonard

hope springs eternal?

birthday girl

bloodlust

things that make you go hmmm...

i was supposed to go to cedars-sinai today, but i'm not strong enough to drive myself. my hands are really shaking and it's an hour's drive away. unfortunately, it seems par for the course now, after any trip, i have a period of "recovery". a two day migraine upon arriving in winnipeg last month, and now today, in bed for the second day after a few days in vegas/san diego. to be fair, i had been in bed for 5 days straight with a brutal cold before we left for vegas. i certainly wasn't 100% when we left.

but 100% has not been my percentage for some time now.

when i was in toronto last month, i saw dr. cardella who has been my nephrologist since BEFORE my transplant. we met when i was 18 years old. i was 3 months away from dialysis. i had just been transferred from "sick kids" (the hospital for sick children) and away from my beloved dr. balfe. bill balfe. bill balfe. i adored him. he managed to endear a frightened 13 year old to him through teasing queries over my obsessive use of hair products. (mousse WAS all the rage!) and suddenly, now "of age", i was at the toronto western, a very ADULT hospital, with a very ADULT doctor and a very ADULT health problem.

i preface this by heralding my utmost admiration for dr.cardella. he has given me phenomenal care and never treated me with anything less than total respect. but it has been a growing process for both of us. i had to become a proactive, engaged, infomed patient and he needed to humanize his massive intelligence. but on that first day, i think we were both trying.

as any well brought up danish-latvian-canadian hybrid young girl does, i had pulled myself together in my best 80's green paisley business suit, slapped on a coat or two of "cover girl" and sprayed my duran duran bangs within an inch of their life. my mother had accompanied me to my first meeting with the renowned cardella. to say i was nervous is an understatement. in part, because this was to be my new health venue, and in part, because i was becoming increasingly sicker. i wanted to be heard.

and so i told dr. cardella how i was feeling really tired. so tired. like sleeping 12 hours a night tired. and with a dismissive flick of his wrist and an invisible roll of his eyes, that only i managed to see, he proclaimed, "oh, all teenagers sleep until noon".

well.

the waterworks started. and once they started i could. not. shut. them. off.

god bless my mother, who stepped in and calmly started to explain that this was just not in henriette's nature. that henriette was a "winnah!", and a go-getter who usually slept 6 hours a night. how she managed to explain this with the background symphony of my sobbing and snorting and sniffles, i'll never know. needless to say, it was a pretty short meeting.

on the streetcar ride home, my mum turned to me and said, "you know, i think you look too good. next time don't wear any makeup". at the time, not wearing makeup, for me, was like, god, not using toilet paper. it simply wasn't done. and 22 years later, i get it, but i resent it.

a few months ago, i wrote about how frustrated i was with the change in my appearance. how prednisone gives me "moon face". now EVERY SINGLE TIME i see a photo of myself it's a reminder of the battle i am losing. there's a reason i haven't posted pictures on FB since april. one friend commented "if i have to read one more post about how you don't feel beautiful...". did that hurt my heart? yes. because it reinforced the disconnect. i suppose it was a backhanded compliment, that she thought i was beautiful, but the difference is for ME, any feeling of beauty comes from feeling healthy, headache free, strong in my body, clear of my mind, and i just never feel that way anymore.

(there has also been disturbing focus on my weight loss. that anyone views that as a positive is alarming to me. first of all, i didn't need to lose weight. and secondly, the reason i have, is because i am SICK. but i'm not going to analyze that here.)

and yes, i am going somewhere with this.

before i decided to reschedule with cedars, i was dressing in the bedroom listening to the morning news with a segment on breast cancer. before the tired diet and nutrition tips (yes! fruits and vegetables are loaded with antioxidants!), was a wonderful piece on "dressing the part". they claimed "if you look sick, you will feel sick". "YES!" i screamed at the television set. these breast cancer patients spoke of the jump in their self esteem when they made an effort with their hair, makeup and clothes. in no way am i minimizing how i know they suffer. i had a round of anti viral/chemotherapy drugs and it slayed me. i didn't do much else but lie there with an ice pack on my head for 4 days. i can't imagine months of it. but when these patients spoke about how seemingly superficial acts like "dressing up" became so significant to them, it resonated with me. 100%.

i used to be a gal loaded up with self-esteem; the afterglow of caffeine addicts guzzling of their morning brew. jacked up and ready to go. there is not one aspect of my life untouched by my compromised health. and that includes my self-esteem. so if i want to pull together that maybelline look, even if i'm only hitting the grocery store, try and stop me. but the compromise may be, that the disconnect will remain. that the omnipresent comment "well, you look great", will prevail. but maybe, that's ok.

maybe.

and so last month, my friend, m, eerily echoed my mum's words of 1987. "henny, you look too good. you need to wear no makeup and a fat suit". i love her for her ferocious protectiveness, but i will tell you, as i sat in dr. cardella's office, looking cute as a button, feeling about as energetic as a snail, i told him how tired, headache-y and nauseous i felt. and he told me, without an iota of patronization, that these were the symptoms i would feel at 10% kidney function. that this could go on for another 1-2 years. that in order to get on a list in canada, you must be on dialysis.

no flick of the wrist. no roll of the eye. not one sob, snort or sniffle.

we've come a long way, baby.

friendship

thank you, l. thank you, a m.

it's the little things...

there are some pictures that are worth a thousand words, and others that need a bit of explanation. back in 1992, i was a recent theatre school graduate, working at the shaw festival with gobs of enthusiasm and a healthy dash of 23 year old cynicism. one day, i flounced into rehearsal in one of my many floral print dresses that i had a fondness for.(thankfully, i have outgrown this prairie girl phase). fellow thespian wendy thatcher, the much admired, husky voiced talent remarked on my wardrobe. "why, henriette, don't you look lovely today". sighing heavily, i rolled my eyes heavenward and pronounced "i guess it's the little things". i have told this story countless times; if only wendy knew how significant, how poignant her words were to me. "you know what henriette, it really is the little things, because there aren't that many big things". there was no bitterness, no sadness, just pure generosity of spirit. and the wisdom that her pearls offered me.

and for the past 17 years that exchange has resonated like few others.

and so, i try every day, to find something to laugh at, a reason for a smile to tickle my lips. and if that means...photographing-my-husband-in-some-random-corner-of-a-holiday-inn-hotel-room-in-san-diego-that-seemingly-has-no-other-purpose...i'm going to do it. and i'm going to laugh. and i'm going to look at it again in the view finder. and i'm going to make him pose again. and we're going to laugh. 'cause all those little things, make one really BIG thing.

welcome to the pleasuredome

i'm a loser baby, so why don't you kill me...

the devil's work...

livin' on the edge

run neon tiger