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.