I’d have to do harder things before my self-regard lost the mean air that had inflated it.
The Price
Prednisone’s long-term side effects include depression and mania, weakness and fatigue, blurred vision, abdominal pain, infections, painful hips and shoulders, porous bones, acne, insomnia, weight gain, stretch marks, facial swelling, and nervousness. There are others. Those are just the ones I have.
Textbooks refer to the side effects as premature aging of the body.
The sore spots below my cheekbones make it hard to lie down without a soft pillow. I can’t lie on my side on a flat surface. I lie on my belly and rest my skull on the tip of my nose and lift my head for periodic breaks.
When I hold a long melismatic vowel, my facial muscles tire. That is, if I sing Ahhhh for a few seconds, all the little muscles around my mouth start to twitch.
I gobble calcium supplements to keep my osteopenia from turning into osteoporosis, but someday it will. I’ll break a hip and it won’t heal, and I’ll become bedridden and develop pneumonia and suffocate.
In San Francisco I met a man who was missing a big chunk of his jaw. The conversation turned to a certain type of hospital visitor. Have you considered herbal remedies? this visitor asks. Both the man and I had entertained this visitor.
Herbal remedies! They’re less toxic to me and to the earth. If I don’t live long enough to break a hip, it will be because I get cancer, an ironic side effect of Western cancer drugs.
Western medicine saved my ass, the man said. He wasn’t smiling. That’s all he or I needed to say.
Mary
Before there was much of an Internet, I wrote a letter to “Confidential Chat” in The Boston Globe saying I would appreciate hearing from others who had Guillain-Barré syndrome or who knew anything about it.
I received fifteen letters in response. Most were handwritten, and a few were typewritten, with plenty of whited-out errors.
A woman named Gayle wrote this to me:
Prior to GBS I was into weightlifting and Truck Driving. I could lift well over 100 lbs. After GBS I couldn’t lift a 2 lb sand bag, it was very discouraging at first but then I kind of got angry and started working really hard to get my self back to where I was prior well I am half the way on the weight lifting, and back to every activity I was in prior, I just don’t have to much strength I get tired out alot quicker, sick alot quicker. It doesn’t happen as quick as you’d like it to, but patients it will. I do remember the one thing that really got me frustrated though, it was the soda cans, I couldn’t open them, for the longest time.
Besides the fifteen letters, I received a mesh rectangle of gray and white embroidery spelling the word JESUS.
In 1999 I found an online bulletin board for people with CIDP Its posts described even the weirdest and rarest symptoms and side effects, and each post had drawn dozens of responses.
Plenty of adults wrote on the board about themselves or their children.
One poster asked whether there were any young adults on the board, people in their teens or twenties. The woman who’d written the post was named Mary, and she was from Dublin, Ireland, and she was twenty-one years old.
And I was twenty-five, and so I wrote back. We wrote to each other almost every day.
Mary wore metal braces on her legs and lived with her mother and saw her neurologist only once a month or so, and it was only then that she could have apheresis. That was the best her country’s health-care system could do for her.
Mary and I exchanged photos many years later, after she’d moved to Spain and then to France, and had undergone apheresis in four countries, and after she’d taken the braces off her legs so she could try pressure stockings instead, and then put the braces back on after the stockings didn’t work, and after she’d dated two Parisian men at once and done mountains of cocaine and got blind drunk in more countries than I have even visited, and I saw, without surprise, that she is an absolute knockout.
Soldiers
This is how I wound up in lockdown.
First I took prednisone for four years.
Then I had abdominal surgery. There was a tumor on my left ovary. Benign. Lemon sized. I was in the middle of my second year of graduate school, but I had to have it out. My lover and I found it in the usual way. He was lying down. I was sitting up. Then I felt a pain, and we had to stop. Later we found out he had moved my ovary.
So I had the surgery during the spring semester, and because I had been taking prednisone for four years I had to be given a bolus of the steroid to help my body through the surgery. The adrenal glands get lazy when there’s already so much steroid in the body, and when it’s time for the glands to produce a lot of adrenaline, suddenly, when the body is under great stress, stress like an abdominal surgery, the lazy adrenal glands are too sluggish to keep up with the body’s demand.
This adrenal suppression occurs if prednisone is taken for longer than seven days.
Coming out of general anesthesia, I shook so horribly that I went to the ER to make sure I didn’t have an infection. Prednisone weakens the body’s ability to fight infections, and in the previous four years I’d had a lot of them — fungal, viral, bacterial. They were hard to treat. I always had at least a couple of rashes going.
I knew, though, that if I were shaking from a postsurgical blood infection, I could die pretty quickly.
In the ER I had no fever, but the doctors tested my blood pressure lying down, seated, and standing, and saw that my heart wasn’t working very well, so they gave me another steroid bolus. It went in and in fifteen seconds I stopped shaking and felt wonderful. Euphoric. Which is normal after a shot like that.
Then my lover, who had moved my ovary, drove me home.
But in a couple of hours I started shaking again. My muscles were cramping, and the pain got so bad that we went back to the ER for another bolus.
Then the whole thing happened again. On the third ER check-in, I was admitted to the hospital.
We didn’t know yet that it hadn’t been a dearth of steroid that had caused the shaking but an overdose. And that after that overdose, of course, I had been given three more shots.
After the three shots, lying in my room at the hospital, I began to hallucinate. The condition is referred to as steroidinduced psychosis.
I saw soldiers in my room. They were dressed in red uniforms with tails and gold buttons. They were British soldiers from the American Revolution.
They were there, of course, to prevent their territory from being taken over from within. They were my blood, and the revolutionary soldiers, absent from this scene, were my antibodies.
The soldiers paced quickly around my bed, their swords by their sides, looking at the ground, but I could see their solemn faces, which showed me they would fight to keep me safe.