There’s no single enemy, no malignancy to rally against.
In a way,youare what’s wrong with you.
And there’s no one to blame but you.
Of the approximately 23 million Americans who have autoimmune diseases, a disproportionate number are women.
Many are in their 20s or 30s, their prime childbearing years.
The guilt that follows seems so inherently feminine to me.
Autoimmune disease: strong enough for a man but made for a woman.
I’m grateful I don’t have cancer, of course.
There is no pretty ribbon to adorn your lapel.
You cannot purchase lovely pink products to help find a cure.
There is a Wegener’s support group and a bigger vasculitis patient data pipe.
But because Wegener’s attacks different systems in the body, sufferers don’t always have symptoms in common.
Our meetings look like a gathering on the Island of Misfit Toys.
My Wegener’s debuted in 1998, when I was 27.
I had a sinus infection that wouldn’t go away.
My main problem back then, I thought, was that at 221 pounds, I was too fat.
I paid $10,000 for a month of supervised dieting and exercise and lost exactly 2 pounds.
Yep, that’s $5,000 a pound.
It was published by Bloomsbury USA three years later.
Maybe I partied a little too hard, though, because I started to get these headaches.
And I had trouble hearing out of my right ear.
And my nose looked like it was caving in.
And damn, I was tired.
He made me have some X-rays and CAT scans instead.
It hadn’t even occurred to me that Wegener’s might be afoot again.
I was at work in the TV studio when the call came.
“Are you sitting down?”
He said that Wegener’s was causing my exhaustion, hearing loss and pain.
My head was reeling.
I started chemo again the next month, and stayed on it for almost a year and a half.
The chemo and the disease itself made me so sick that I had to leave my TV job.
You name it-they found new ways to torture me every day.
Another drug caused an allergic reaction all over my torso that itched like crazy.
I grew fuzz on my arms, shoulders and face.
My hair fell outbut not all nice and cute and bald and sexy.
It was more like I lost clumps from the top of my head.
Forget about dating: I felt about as libidinous as Ellen DeGeneres in a room full of Chippendales dancers.
I wasn’t sick enough to die, but I wasn’t well enough to live my normal life.
I feared the treatment might be worse than the disease.
Daily life was also hard.
My usual exercise routinesomething that kept me sane as well as fit, if not thinwent out the window.
It was all I could do to shuffle from my bed to my bathroom.
Plus, the chemo killed my taste buds so everything tasted like sandpaper.
The only foods that I could stand were cheese and ice cream.
All the encouragement and advice about positive body image that I had written in my book felt like lies.
I could find no beauty, no self-respect.
In April 2004,The Fat Girl’s Guidewas published.
It would have been my dream come true, except my illness turned it into a nightmare.
I looked like a completely different woman than the fat, pretty one in my book-jacket photo.
So I avoided contact with my publishers and publicists.
I skipped photo shoots.
I went onThe Viewwearing a wig and nearly threw up on Star Jones.
I passed out in the car on the way to and from book readings.
I tried every alternative to get better.
A mystical masseuse who was giving her cat an abdominal massage as I arrived for my appointment.
An Ayurvedic healer in New Mexico who gave me my very own Sanskrit mantra to connect body and mind.
An alternative healer who told me that a blockage in my “third eye” (who knew?)
was inhibiting my intuition and making me sick.
I enrolled in a double-blind trial of an experimental drug that didn’t work.
I prayed at the grave site of a Hasidic rabbi in the middle of the night.
Buddhas, mandalas and a saint or two made their way to my bookshelves.
Hey, can’t hurt.
I got antidepressants, acupuncture, acupressure and acute anxiety.
What I didn’t get was a remission.
In April 2005, the intense head pain would no longer abate.
I simply saw no other choice.
I wanted to avoid undergarments and eat carbs and ignore everyone.
I spent five weeks in bed, just lying there and staring out the window.
I didn’t answer the phone, didn’t reply to e-mail and didn’t leave my house.
Every once in a while a friend or neighbor would drop off food.
Felicity and her friends were the only things keeping me connected to normalcy.
My time was supposed to be now.
I was supposed to be singing the body electric.
I adhered to a strict bagel-and-macaroni diet.
Totally unhealthy, bad for my weight and, I’m guessing, it even aggravated my disease.
Is it because I’m fat?
Is it because I’m weak?
You’re not doing everything you’ve got the option to do.
Spending all that time, money and energy, trying and failing, again and again.
All Sick Girl stories, like all Fat Girl stories, are supposed to have happy endings.
Fat Girl loses weight and lives happily ever after.
So what about Sick Girl heals and lives to a ripe old age?
Then last November, I had to go back into treatment once more.
For now, I’m done.
Maybe I’ll be in the hospital and meet a hunky hematologist with whom I’ll later elope.
I simply don’t know.
Whatever happens next, I must heal this wound and find my beauty again.
Speak to myself with kindness instead of cruelty.
I’m learning how to modify my all-or-nothing attitude.
They don’t give up on me, even when I can’t call back or don’t respond.
I panicked when I realized that I could never repay that much kindness.
I’ve since discovered that good people give purely because they want to.
And so I will give back.
Did I mention that I lost my sense of smell?
And that I can’t hear out of my right ear?
But that means I can’t hear that mean cafeteria girl’s whispers.
Because that silence is giving me some room to fight the bigger, badder bullies.
That might just be why I’m still here.
Photo Credit: John Dolan
