October 29th, 1982
To Henriette on her 13th birthday,
In 36 days you will be diagnosed with chronic kidney disease.
Yes, I know Daddy just died, but this is up next on your docket.
This diagnosis won’t mean much to you right now, because you are finally a teenager! You won’t look or feel sick until you are almost 19. You will get your ears pierced. Win a writing contest. Get head lice from a fedora you bought in a thrift store to totally copy John Taylor from Duran Duran. And you will fall in love.
At 14, you will be prescribed medication to take every day: Prednisone, Imuran and Baby Aspirin. Officially, your growth will be stunted, but at 5’3” you are of average height and this becomes the least of your worries. With medication, Toronto doctors slow the deterioration of your kidneys, but eventually, they will fail.
At 19, you will have 3% kidney function and go on dialysis. A Perm Cath will be surgically inserted into your Subclavian Vein. This lies beneath your Jugular. Just sayin’ because, hell-o, we already know you’re no science whiz.
On Christmas Eve, 1987, you will endure a 3-hour dialysis session. On the streetcar ride home, you will collapse against Mum, barely able to breathe. Toxins your kidneys are unable to clear from your blood will clog your brain. Thought will become near impossible. Through the streetcar window, you’ll watch the white snow fall deathly silent against the dark winter night. There will be much holiday to-ing and fro-ing of the people. You won’t care. Your head will feel like a rock, a weight you are no longer able to lift. You will understand that you are only alive because of a machine. You will want all of this to be over, but it has only just begun.
Your heart will crack.
But you will survive.
At 19, Mum will give you one of her kidneys. It sits in your belly! You are science fiction personified! But there are pills. So many pills and in dosages that change the way you look and feel. Your body twitches, agitated. You cry for no reason. High doses of steroids give you such moonface, you cut your own hair to hide your swollen cheeks. It looks awful. I wish I could give you a big hug right now and tell you, you are beautiful no matter what. Can you hear me? YOU ARE BEAUTIFUL. YOU ARE ALIVE. But you are 19, and your heart is broken and you want to look like you used to. But you never will.
But you will survive.
But hold the phone! Here comes more fun stuff! You will become an actress! Your dream is not restricted to a Grade 3 project where you drew yourself singing/dancing/acting like Marie Osmond! Boy, her brother is cute, right? With your new kidney, you will have boundless energy to do theater, film and TV. You are a medical miracle!
At 21, you will be prescribed a controlled substance called Fiorinal for your crippling migraines. Euphoria will saturate every pore. Rubbery limbs. Soaring soul. She will be the greatest thing to happen to your body ever since…ever. Then you will meet a really cute theater stud named Kevin. Like, really cute. You will marry him, but you don’t give Her up. Kevin will marry You both.
But you will survive.
When you are 26, your platelets will drop so low you are tested for cancer. You will get month-long chest colds and 5-day migraines. When you are 29, you have a kidney biopsy that leaves you bleeding for days. You take Codeine every morning and float away for a couple of hours. You have done this every morning for 10 years. And you will do it for 10 more.
But you will survive.
You newlyweds will move to Los Angeles, the City of Angels! Guess what! You will be on Star Trek: Voyager! You have never actually seen an episode of Star Trek—with the exception of the Shatner reruns you and your brother watched afterschool in the mid-70’s—but still, it’s really cool. You drove yourself to Paramount Studios! Fucking A! You travel. You run 5 miles a day. You are in love. You are a healthy goddess with long, luscious hair, nary a zit and guns for days (The non-NRA kind.).
You will never have children. Are you surprised? It is not easy for a transplant patient to bear children. You are on very toxic medications. You guys will try, but it does not happen to your broken body. You will wonder what that bond would have been like. Your soul will cramp a little, no, a lot, at the feel of your nephews,’ niece’s, and godsons’ newborn-fingered grasp.
But you will survive.
You will have HOUNDS! A whole bunch! Well, five. You and Kevin adopt senior basset hounds. Somehow, you relate to their old and mangy, broken-down bodies, tails wagging at half-mast. Soon their adoring gazes and stubborn companionship will have you wondering who rescued whom.
At 40, all health will break loose. Your transplant will go into rejection, and you will fall into the gap. Even your husband turned Prince will not be able to find you. Or Codeine. Or Fiorinal. Darkness will sear your soul. Isolation becomes your friend. You will add new friends: Xanax and wine. Then a couple more still: Vodka and Vicodin. And so on…
They are cunning companions. They offer momentary Euphoria, untold and repeated release from the prison your body and mind have become. Then, they will thrash your soul until it is bruised, bleeding, and welcoming of Death. Aloneness consumes your every pore, so incomprehensible that finding comfort in the company of worms six-feet-under flashes through your mind as an option.
[Hang on, sweet girl, hang on.]
Your heart will crack.
You will overdose, but you will survive.
At 42, your Prince will become even more Charming and offer you his kidney as Glass Slipper. You let him rescue you, but you want more, more, more. You cannot get enough. There is never enough—of pills or what’s-your-poison? Or both. You want it all. And more still.
At 42, you will overdose for the second time.
At 42, you will go into rehab.
At 43, you will relapse.
At 44, relapse still.
At 45, you will get sober.
You could write a book about the road to recovering—present tense, please note. “One Day at a Time” turns out to be for realz, not just some clichéd bumper sticker slapped on the back of a VW Bus. The 12 Steps give you mad skillz. And guess what? You write a book for real. First it was called, “The Glass Slipper,” then “Every Pill Has a Story,” and now, “In Pillness and in Health.”
You will finish that fucking book, no matter what.
Because your first 45 years were just a warm up.
One night in the bathtub, at 46, you will go to town on itchy forearms with an old pumice stone from the side of the tub. Two days later, what looks like an enormous sunburn covers most of your left forearm. The next day it spreads to your right forearm. Horrified, you watch as little red dots swarm across your skin, penetrating nerve and sinew.
You are now in pain. Burning/Itching/Pinpricking/Stabbing pain.
Over two and a half years you will see: Three dermatologists, your nephrologist, neurologist, an acupuncturist, allergist, immunologist, naturopath, and your transplant team. It is not autoimmune. It is not a virus or infection. Not nerve damage. Nor any skin condition any East/West doctor has ever seen.
It is their nothing. It is your everything.
It is chronic pain.
The rash will disappear as will your hope, but your “invisible” pain will persist. Fabric chafes your skin like sandpaper, as if thorns are poking up through your skin. You wear your husband’s underwear around the house, and when the band snaps you will hold it up with a clothes peg. It is ridiculous. It is your life.
This pain will bring you to your knees. You beg for direction, abandoning yourself to something you have always believed in, but never been able to access. This source of strength will fill you up every time you ask. It will not kill the pain, but it will kill your fear. If only for a few moments. You call it God.
You are grateful for this. So incredibly grateful.
(Oh, and BTW, you are also very dramatic.)
Why, why, sweet girl, am I telling you all this?
Because through all this pain, you will be the happiest you have ever been.
On your 49th birthday, you will struggle to wake up. Your eyes will crank open and your skin will alight. But as you turn to your right, your heart will crack. He’s still there. In the bathroom mirror, the woman you have become will both startle and impress. Your puckering lips can no longer be moisturized away. Your hair no longer grows, but you’re rockin’ the pixie cut. And look, look at the spark in your eyes. You can see the miracle. You are the miracle.
You will never look like you used to.
You will never feel like you used to.
Thank God.
You do not want to die.
You do not want to use.
Your heart cracks over and over and over again.
Because the light is coming in.
[Hallelujah.]
You will survive.
“Yet again, your strength at storytelling astounds me. In this short piece, I experienced laughter, tears, heartbreak, and inspiration. You are a blessing to so many.
— Tanya Gregory Thomlinson”
“Wow, this brought tears to my eyes.
— Robert Freud”
“ Incredible. You are truly a miracle.
— Shannon Sabelline”
“Happy birthday, sweet friend. I wish I could take your pain away. Your writing is so incredibly beautiful.
— Amber Wallace”
“How beautifully this is written. My eyes were glued to every character of every word and my heart ebbed and flowed with her every emotion.
— Linda Law”
“Amazing. She doesn’t just share her journey, she takes you for a ride in the backseat.
— Sheila Jones Corrigan”
