A Life With Congenital Adrenal Hyperplasia

The Mayo Clinic website insists that with treatment comes a normal life.

What do they know?

I’ve got congenital adrenal hyperplasia (CAH). That means my body isn’t balanced when it comes to hormone regulation.

Blame enzymes.

Point at recessive genes.

Shake your head at my parents who knew the problem, but never lifted a finger to fix it.

Instead, my mother teaches me to shave my face, stands over me in my pink-and-green bathroom, 1980s hits coughing out of the tinny AM/FM radio on the counter.

Every time I hear Rick Springfield or Depeche Mode, my chin reflexively stings.

Tricks Under the Tree

Excess hair growth: one of the dubious gifts bestowed by CAH. Add in obesity, male-pattern balding, and infertility, and you’ve got an entire Christmas tree of goodies.

The fact that we’re Jewish only enhances the irony.

To understand CAH, think of its more popular cousin, polycystic ovarian syndrome (PCOS). My bud PCOS is estimated by the U.S. Department of Health and Human Services to hit 10 percent of women in their childbearing years.

CAH is far less common.

See, we make insufficient enzymes. Instead we mass-produce androgens. And androgens mess up our development.

I also have luck on my side.

I could have been dead.

These things happen.

A Course Toward Understanding

Winter 1995.

I am 20, half-clothed, lying on my bed at the University of California, Santa Barbara.

I am losing my virginity.

My partner in crime is kind, gentle, entirely tactful. His silence says everything.

Hair. Everywhere.

Breasts.

Buttocks.

Chest.

Even little tufts on each finger and toe.

There’s no relaxing into an embrace when you know your skin is like sandpaper, no marveling at new sensations when the act itself is a redefinition of pain.

For that is another of CAH’s gifts: an enlarged clitoris blocking much of the vaginal opening. Hello, sex – you’re tricky at best and traumatic at worst. Hello, would-be partners on my seaside campus. I’m literally closed to one of the most primal acts of love.

At 3 a.m., he kisses me goodbye.

The door closes quietly.

We never repeat the act.

Picture This

An exam table.

A sunlit room at Santa Barbara’s Sansum Medical Clinic.

A doctor with a question.

“The textbook wouldn’t show your face,” Alex DiPaoli says. “Just your body.”

He is young, dark, boyish in a way that scares the hell out of me. Why couldn’t he be old, craggy, grumpy?

Just your body. Like that isn’t bad enough?

Winter quarter has given way to spring. It is still 1995 and I am still on my back, but this time it’s on a crinkling roll of butcher paper.

Somewhere there is a radio and it is playing.

Of course.

Jesse’s Girl will always be in demand. Meanwhile I can’t even get a repeat hookup.

“No,” I say.

The word wants to come out bolded, underlined, italicized. Instead it collapses into two weary lower-case letters.

I’ve been fighting a very long time.

Hope, Encapsulated

Summer in Santa Barbara. Everything the clichés tell you, plus a little June gloom that somehow manages to surprise everyone year after year.

The same exam table.

The same crackling.

The same question.

“No,” I say again, the letters neither upper nor lower case. They are a font yet to be created. They are a sentiment all their own.

I stand in the glassed-in pharmacy with my fellow patients. The automatic door slides, slides, slides. I exchange my credit card for vials of what I hope is a new life. I swallow as directed.

Two things happen.

First, my testosterone levels take what DiPaoli calls a spectacular fall.

Second, nothing. Nothing at all.

I look no different than when I first walked into his happy office.

I still shave twice a day, the shadow ever-present under the makeup I slather atop it.

I still shy away from intimate contact of any kind. I’m not simply afraid of revealing myself. I’m terrified by the pain.

“It’ll take time,” he says, palpating my abdomen. There on his desk are his kids’ pictures. There’s a little girl. She looks like me.

He would have fixed her.

Right?

Zap and Sizzle

I lie on a table in Berkeley’s fancy district. Somewhere out there is the iconic Claremont Hotel. I can’t see it. I’m wearing dark glasses and what I imagine is a ridiculous look of, “Oh God, what have I gotten myself into?”

It’s late 2000. I stopped purchasing pills of hope, moved to the San Francisco Bay Area.

Land of the different.

Home of the outsider.

And still I lie outside the realm of normalcy.

But there is a difference.

I’m in love.

Because I’m in love, and because I want him to reciprocate, I’m taking a bold step. If I can’t cure myself from the inside out, I’ll try it the opposite way.

Laser hair removal. Here we go.

The concept is simple: fry the hair until it tumbles from the root.

The execution is awful. After more than an hour I resemble nothing so much as John Hurt from “The Elephant Man.”

He doesn’t love me back.

It’s a relief.

Breaking the Wall

A ring winking on my finger.

Fire rising in my cheeks.

Late 2007. My teeth are grinding.

I cannot look like a man in my wedding pictures.

Does anyone?

My husband-to-be, next to me on our crappy futon, idly web-surfing shots of brides and grooms.

We won’t be like that.

We are going to be cool.

One minute I’m happily ridiculing a bride whose boobies claw for escape from her bodice. The next I’m face-down on the futon.

The sobs tear me in two.

The story emerges.

He waits until my last hiccup, then speaks.

“I think,” he says, “it’s time to try again.”

Internal, External

Another table.

Another room.

Another part of Berkeley.

This time it’s Labor Day Weekend 2015. An apt time to have a child.

It’s not going well.

“Push,” my obstetrician says.

“I am.” I bite back the string of nasty words begging to follow that one simple statement.

“Push harder.”

Out comes the nasty. She shrugs: heard it all before.

The person on the table has no beard. She is normal-sized. It also appears she is not infertile.

Eventually this child will emerge.

One minute internal.

The next, external.

His story: love.

Caretaking.

Vision: see what exists, fix what’s hurt.

My husband did that for me. And God as my witness, I will always do that for my son.

Follow this journey on The Volcano. 

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