What Have I Done to Deserve This?


“What have I done to deserve this?”

In 1988, when I was recovering from my first kidney transplant in Toronto, this Pet Shop Boys hit was all the rage. I dug it, wailing along to the self-piteous phrase. For indeed, what had this 19-year old done to deserve such an immense health challenge?

And I remember the moment I realized with a shock.

Wait. This doesn’t mean I’ve maxed out my health quota. I could still get breast cancer at 32…

Or a second kidney transplant at 42.

Or recovery from drug and alcohol addiction at 42.

Or a mysterious skin condition that has challenged everything I know about myself.

Tonight, nearly 3 decades later, driving home from USC Dermatology as the sun set behind the foothills of the Angeles National Forest, the same track burst forth from my Pet Shop Boys Pandora station.

“What have I done to deserve this?”

I flinched, a flare of heat from my left arm radiating across my entire body.

It’s probably safe to assume the home crowd knows my deal, but for those who don’t, here’s the recap: As of 4 days ago, I have sustained a periodic and painful skin condition for 2 years. It is not a virus. It was not an infection. It is not auto-immune. Nor an allergy. Nor anything immunological related to my transplant. Today the 3rd dermatologist I have worked with over the last 734 days turned to me and said,

“I have no idea what is going on with you.”

At the end of 1986, when I was 18, I was nearing End Stage Renal Failure. As my BP shot through the roof, my nephrologist prescribed an experimental blood pressure med. It was a safer option for my young and totally 80’s bod. He noted,

“In 3% of cases you lose your sense of taste.”

Well, you can see where this is going. All I could taste for the next few months were hard-boiled eggs with salt and French Fries and gravy with tons of pepper. (Ah, the pre-back fat days.)

The med was discontinued, but The 3% Girl was born.

The virus that attacked my kidneys as a 13 year-old girl remains unidentified. What the doctors did learn was that my Glomerulonephritis manifested as 3 different types of scarring, not 1. Very rare. So rare, that my pathology was taken to a medical conference where the only similar scarring was found in a boy from Poland. Random.

If you calculated the odds, they might have been 3%.

There might have been a time—she wrote winkingly—when Henriette might have worn that 3% badge with pride. I mean if you’re going to have Chronic Kidney Disease that results in transplantation, you might as well score with something rare. It was kind of like making the Dean’s List of Diseases. That was all fine and dandy when my Mum’s kidney got me up and going again for nearly 23 years.

But pain? Chronic pain? Sober? For me, it has become the great leveler.

When people ask me what it feels like, I say this, “Imagine the worst sunburn you’ve ever had with an electrical current running through it.” Then I rate it on a scale of 1-10.

Today, I looked my Derm in the eye and asked one more time,

“What does it look like?”

She sighed and looked like she wanted to unleash her hair from its constrictive ponytail and hide beneath her enormous mop of hair.

“It has components of various skin diseases, but like nothing I have ever seen.”

Sounds awfully familiar.

“What have I done to deserve this?”

It no longer serves me to wear the badge of 3% Girl. In fact, I do not want to be 3% Girl. I do not want to be different. To be the unwilling owner of an unruly condition no one can tame or control. I do not want to make any Dean’s lists. I just want to be healthy. For more than what feels like a minute.

But what are the odds of that?

In recovery, I have learned one thing: The question most often asked is the one least satisfactorily answered: WHY? Instead, I must ask: HOW? How do I deal with something that may never go away?

For me there is no alcohol to melt my bones. No opiate waves to surf. There is no sugar to jack up my brain. (At least according to my acupuncturist.) There is no way around the pain. There is only through it. Day–by-day. Hour-by-hour. Minute-by-minute.

And so, how? With friends who ask, "What is it today?” When I say, “7”, they know it’s a dark day, and they comfort. When it’s a “2", they cheer.

Prayer. Meditation. Exercise. Acupuncture. Gabapentin. And an untried ointment I pick up tomorrow.

I do this with a husband who physically hurts when I cry, his love a steadfast salve for this relentlessness.

With inventories, I find acceptance. With writing, I find my purpose.

And in picking up the phone today for someone I love so much it hurts. By maybe helping her. And in realizing that none of us need experience pain alone.

How To Deal With Chronic Pain. (I should write a book!)

Oh, and pending—in April or May—something called Grand Rounds. A once-a-month Tuesday evening down at USC Dermatology. When all the dermatologists come together for a medical pow-wow to brainstorm one. burning. case.

Up next: 3% Girl.

I look forward to every word you post. No matter how busy the Sunday, I find a moment to look for your new posting from “In Pillness.” I love your voice, and I especially love your fierce heart-full courage. By telling your story unflinchingly, you are giving the universe access to your truth - and as you know if we block our truth the world loses it for eternity. You inspire and embolden me, my dear. Love and gratitude. — Christine Oddy Shandel
You make hurting so beautiful... — Shannon Gosch
No words. but I can pray to God for you, and say he has gifted you as captivating writer with your experiences. — Bridget Fogg
You write so incredibly well my little Hennybird. You’re courageous, beautiful, funny and it’s been an incredibly unique and wonderful gift to witness your love story with Kevin. — Suzie Sharratt
Keep strong, keep on hoping and keep writing, as it is a gift that keeps energizing you. — Bonnie Scott