Goin' Up


She was a total beeyotch.

I had an appointment. It was the yearly follow-up for my kidney transplant. But she kept insisting it had been moved to August. I agreed. I had been here last summer to see Dr. Jordan, head of transplantation at Cedars-Sinai and pioneer of IVIG—an IV antibody treatment that boosts patients’ acceptance of second or third (or more!) transplanted kidneys. Back in August, Dr. Jordan ran a slew of immunological and viral blood tests for me, hoping to uncover anything that could be treated with this groundbreaking therapy.

Nothing. Skin burning aside, I was as healthy as a horse.

[Hold that horse thought.]

I knew the look. Instant dislike. Disdain smeared all over her face. I have no idea why. Maybe it was the polite way I asked her to accommodate me, even though I wasn’t on the books. Maybe it was my comprehensive explanation as to why I desperately needed to see a physician: that I had recently been pseudo-diagnosed with Erythromelalgia and needed an extensive list of medications reviewed and “kidney-approved” before my USC appointment this Thursday.

I sat in the check-in section, hands folded primly in my lap, making occasional and bewildered eye contact with the administrator who, quite frankly, looked scared.

Where was old Henriette? The one who used to spread herself wide across pharmacy counters like a pharmaceutical whore bellowing for her scripts to be refilled.

“Can you check again?”

“It’s too soon to refill.”

“WELL, F*** YOU!!!”

Ah, those were the days.

But She was gone, and in her place, I sat there meek as a mouse, indeed a spiritual giant, even as my brain whirled with, “Why are you being such a BEEYOTCH?"

She was not having me. She was not hearing me. All she wanted to hear was the sound of her own voice.

“Your follow-up is in August,” she insisted one last time as she strode away, the wings of her lab coat fluttering like a bird’s rising for take-off.

“Does that mean you’re going to be seen?” my partner-in-confusion asked. I shrugged.

I was seen. By the same lab technician, Sebastian, who asks every year how I look younger, while I roll my eyes and tell him to clean his glasses. (It’s our thing.)

Blood pressure 119/77. (WCS be gone!)
Temp: Normal.
Weight 124.5 lbs. (No comment.)

A different check-in girl confirmed my current medications. Another kinder, gentler transplant coordinator updated my records, and then, finally, Dr. Stanley Jordan.

[Insert horse thought now]

Remember the movie Seabiscuit? It was huge. A blockbuster. I never saw it. I remember thinking Tobey Maguire was perfect casting for the jockey because he’s such a little dude. And I never read the book. But I did read an essay by the novel’s author Laura Hillenbrand.

I subscribe to The New Yorker on line, and every Sunday they send out 6 past essays bundled thematically. On Jan 22nd, the bundle was entitled, “Medical Mysteries.” When the title, “A Sudden Illness” popped from my screen, I froze mid-scroll. Hillenbrand’s 17-page essay had won a national prize, but this was what impressed:

“...One morning, I woke up to find my limbs leaden...”

...I couldn’t hang on to a thought long enough to carry it through a sentence...”

“...He once said that he could sense the disease on me. I knew what he meant. I was disappearing inside it...”

In 1987 at age 19, Hillenbrand would be diagnosed at Johns Hopkins with Chronic Fatigue Syndrome. CFS is still one of the most frustrating diseases out there. It incapacitates and little treatment exists. Some recover. Others don’t. Like Hillenbrand.

Vertigo. A constant shrieking sound in her ears. Bedridden. Weeks pass, then months. Then years.

She would write for papers and magazines when she could.

“...Because looking at the page made the room shimmy crazily around me, I could only write a paragraph or two a day...”

Then, on a cool fall day in 1996, Hillenbrand discovered Red Pollard who would become Seabiscuit’s jockey, a man as physically tormented as she.

“…in one lucky moment of his unlucky life he found Seabiscuit, a horse as damaged and persistent as he was. I hung Red’s picture above my desk and began to write.”

And in one unlucky moment of my life, I discovered the Hillenbrand essay and put it on my desk. This. These lines. Sometimes they keep me going when nothing else can:

“...If I looked down at my work, the room spun, so I perched my laptop on a stack of books in my office, and Borden jerry-rigged a device that held documents vertically. When I was too tired to sit at my desk, I set the laptop up on my bed. When I was too dizzy to read, I lay down and wrote with my eyes closed. Living in my subjects bodies, I forgot about my own...”

And that’s what Life looks like when you are willing to go to any lengths to live.

Pollard found Seabiscuit. Hillenbrand found Pollard. And I found Hillenbrand.

[We now return you to your previously scheduled post.]

My life has been filled with medical forces. Dr. Stanley Jordan is one of them. The doc is a dude. I mean LOOK at this guy. Because of his work, patients who need multiple transplants actually have a shot because of IVIG. (It’s all about dueling antibodies, which I really don’t have time to explain here.)

He scanned the list of Derm meds up for discussion on Thursday. He nixed calcium channel blockers because they might make my BP drop too low, which happens to be wunderbar as is, thank you very much. Then we talked. It was after 12:30 pm now. I was the day’s final patient. But he wouldn't let me go. He didn’t have to tell me. It was smeared all over his face.

“This is terrible.”

I told him about winning an award for the book I’ve been trying for write for almost 2 years now. That on days when my pain is a 4.5 (interferes with tasks), I wear ice packs and stay the literary course. But when my skin burns into the 6 zone (interferes with concentration), I can’t work. I didn’t have to tell him how that breaks my heart. I knew it was smeared all over my face.

“There’s an author, who wrote Seabiscuit…Hillenbrand…” he began.

Goosebumps. They exploded all over my skin.

“Oh, my god,” I said. ‘I’m going to burst into tears.” But I didn’t. OK, maybe a little. I am after all, The Emotionalist.

“It is the hardest thing as a physician. When you see someone is suffering, and you don’t have the means to help them.”

But you do, Dr. Jordan, and you did. You listened, and you heard me.

Goosebumps were still percolating—somewhat soothing and altogether wonderful—as I got into the elevator. The doors opened on the 2nd floor and guess who walked in? Ye Ol’ Beeyotch herself. She noticed me, and quickly turned her back. Apparently, she is very good at this. At the lobby level a teeny woman got on, her brow scrunching as the elevator plummeted downward to P1.

“Oh, is this going down?”

“Yes, but don’t worry, “ I smiled, “What goes down always comes up!” And then the two of us bust out laughing.

Hey lady. I’m counting on it.

Always reading. Always sending love and admiring your skill and tenacity. — Carmen Leilani
You have such a talent, Hen. I am always enthralled, but I so wish this was not happening to you. — Lesley Traynor-Smith
I got goosebumps, too, my friend!! You’re incredible! — Debra Stricklin
I cannot even put into words how much I love your writing. When your doc started to mention “Seabiscuit” and Hillenbrand, I got goosebumps, too. And I love, love, LOVE your attitude! I hate your disease and what it is doing to you, but I admire you for how you have taken it and used it to educate and inspire others. —Tanya Gregory Tomlinson
Oh, those goosebumps! I got them while reading your wonderful gifted way of expressing yourself. — Ann Lantello
I feel like a broken record of intense admiration for you. What talent you have. I’m so sorry for the difficulties, but boy, do you have story to tell, and a gift for telling it. — Katherine White
Keep writing. Keep fighting. — Amy K. Pearson