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.
Despite my soldiers, I felt so agitated from the massive amount of extra steroid in my body that I was screaming. I screamed until I ran out of breath and then took breath to scream again. I got out of bed and ran in place like a boxer. I was running and screaming because I was full of adrenaline. My body had made a sensible decision.
A nurse heard me screaming and gave me a shot of Demerol to calm me down. I stopped screaming for half an hour. Then she gave me another shot of Demerol.
In a couple of hours I had been given as much Demerol as the hospital would give me, so I spent the rest of the night running in place and screaming. Since I was hoarse, the screaming was quiet.
Lockdown
The next day, I am told, I had several visits and phone conversations with people from my graduate program.
They called and visited because the director of the program had spoken with a representative from the hospital and misheard the phrase adrenal failure as the phrase renal failure. And she had announced to everyone that they should call or visit to say goodbye, because I would soon die.
I don’t remember the visits or the phone calls. Later I heard I’d told a visitor that I’d slept with someone else from our graduate program, which I had, once, a year before.
In a few days I was discharged from the hospital and moved back into my apartment, but I hadn’t recovered from the overdose.
In two months, unable to get out of bed, I called my parents in Massachusetts and said I needed them to come to Iowa and bring me home.
I had a fever, aches, rashes, muscle weakness, and extreme fatigue.
As soon as I was back in Boston I went to see my neurologist, expecting he’d send me right downstairs to be infused with gamma globulin.
But my neurologist said the weakness and fatigue weren’t CIDP symptoms, and he was right.
He said there was nothing he could do to make the symptoms go away, and that it was a separate, probably viral, syndrome, and that I should see an infectious disease specialist.
I got home, got into bed, and began yelling with grief, which was something I hadn’t done before. Again, as it had in the hospital in Iowa, my body decided sensibly on a course of action. I was too sad to cry. I had to yell. The yelling relieved my sadness better than crying would have.
After five more months of the fever and the other symptoms, the cause of which was never determined, and after living at my parents’ house all that time, mostly in bed, I woke one day knowing I couldn’t tolerat
e another day of my life, that this would be the last day. I told my mother. She asked me how I was going to do it, listened to the answer, took away my car keys, locked the garage, and drove me to see a therapist, who talked with us together, and then to my mother alone.
Then my mother drove me home and helped me pack a few things. And drove me to a different hospital from the one where I’d spent so much time being treated for CIDP.
During the evaluative interview, made one mistake. I said I didn’t believe I would ever get better from whatever was wrong with me.
And so I was admitted, with severe depression, to the locked ward.
I was still taking a daily dose of steroids.
Last Words
Wait—what would I have done if I’d been told one of my classmates would soon die of renal failure at twenty-five?
Would I have phoned? Visited? Brought a gift?
I was told that two men from my graduate program called me. One poet and one fiction writer. I don’t remember.
It is sweet to imagine the conversation they might have had before calling me. One of them asking the other if he’d like to come over and talk with their classmate, together, before she died.
Maybe afterward they talked with each other about how I’d sounded—as if I would soon die, or as if maybe I wouldn’t.
What would I have done? If it were, say, the guy from New Hampshire I’d always liked? I think I’d have called him.
What if it had been the girl with the glass eye, whose life seemed so boring, with her fiance and her car and her many hobbies? I’d have sent a card, maybe.
The stunning woman from Brussels—she visited. And brought a pile of magazines. But now that I think of it, she may have sent the magazines with someone else. It is hard to remember. I was blacked out, so anything seems plausible.
I like to think I would have said something to the dying person.
Would I have written about the dying person?
If I were a little in love with the dying person, would I have written little secret poems about this love? Would I have showed them to anyone, submitted them for publication?
Did anyone do that?
How did my classmates experience my death by renal failure in 1999?
Prayer
Once in my life I promised to say a prayer for my Catholic grandmother.
I picked up the phone when she called one morning at seven o’clock. She begged me to come and visit her. She said she was lonely. She was eighty-three years old and her friends were dead. I said I would visit if I didn’t have to go to school. I was in the seventh grade. She said, Oh, school. Then she thought for a moment and said, Say a prayer for me.
I was self-conscious generally, and prayer embarrassed me. I had learned phonetic Hebrew and had been taught Hebrew prayers, which, to me, were just a sequence of sounds, but I didn’t know how to pray in English.
After my grandmother’s death I remembered my promise and felt sad, but less about my grandmother than about the idea of a young person promising to say a prayer for an old person and then forgetting to do it during the old person’s lifetime.
Twelve years later, in the psychiatric ward, I was eating crackers in the kitchen when two other patients sat down with me.
One woman was my age. She was schizophrenic and had spent her first few days in the dayroom, standing, holding a Bible, reading loudly and clearly, and sometimes singing in a pure soprano.
The nurses asked her to stop. Later she explained, I just wanted to bring the Lord into this place.
The other woman was poor and had a very ill son who lived in a state home. Like many of the patients, she chewed nicotinelaced gum, because smoking on the ward was prohibited. And like all of us, she had no pretensions of superiority to anyone else committed to the ward.
She asked me, Do I seem depressed? I looked at her desperate, ruined face, and answered with careful solemnity, Maybe a little.
The ward was the only true community of equals I have ever lived in. What I mean is that we all knew we had already lived through hell, that our lives were already over, and all we had was the final descent. The only thing to do on the way down was to radiate mercy.
The singing schizophrenic, the sad mother, and I sat quietly for a few minutes, and then the schizophrenic asked, Would you like to pray with me?
The two women and I joined hands. One of them spoke for a while and then stopped. Then the other spoke. They addressed God humbly and directly.
One said, Please take care of my friends Nico and Sarah, and help us leave this place.
Then she said, I love you, Jesus.
I hadn’t ever heard my Catholic grandmother speak to her Lord like that. And the rabbi at my synagogue never seemed to want much to do with a heavenly God.
The schizophrenic was allowed to leave before I was. Her parents came to get her and seemed terribly ashamed. But to me she seemed no more or less joyful, no more or less insane, than on the day she’d arrived and first sung in the dayroom.
The only changes I noticed in her were what looked like painful muscle spasms from her antipsychotic medication, of which she now took a higher dose.
Kimiko
I awoke on my first Sunday on the psych ward to find a roommate. She was Japanese and she didn’t speak. In one hand she held a slip of paper with some sentences printed on it in pencil. One of them, I read later, was I understand I need to talk for discharge but I don’t like to talk when I have pain in my heart. She held up the paper while she sat in a chair, folded almost in half.
Her face and neck were blue.
What I mean is that she had come in during the night and found the whiteboard and the sweet-smelling blue marker we used to write down each other’s phone messages, if anyone called, and if we could remember what to write, and if we remembered it’s a good thing to be seen doing if we wanted outdoor privileges.
Kimiko found the marker and—I was not there, I am only filling in the narrative based on the part I could see—her desolation was so total that the only relief she saw was to scrub her face out with the blue marker. Her whole neck and most of her face: small blue vertical scrub marks.
The doctor was explaining that she had to wash it before she’d be allowed to participate in Group. I wondered what this doctor understood and hoped it was something, because I am not a doctor and I understood Kimiko needed to have a blue face.
Also she would not put on any clothes. The doctor seemed not to understand a person can be too sad to wear clothes. I asked the doctor to go away.
Kimiko wasn’t allowed food unless she left our room, so she sat in the corner of the dayroom all day, naked and wrapped in a sheet, her blue face visible under her white hood.
My parents visited. That Sunday was the day of an important football game, and my father sat in the dayroom with the other mental patients and watched it. While he was there Ed the psychotic came out of his room in hospital pajamas and asked Betty, a near-catatonic depressive, what she was going to be for Halloween, since it was only a week away. Ed said, I’m going as a mental patient. He’d been on electroconvulsive therapy and Haldol since 1976.
On Monday Kimiko had ECT and on Tuesday declared she felt better. Her husband was a scientist in the States on a fellowship. I got her to teach me how to say I am not insane in Japanese: wa-ta-shi-wa ku-ru-tte i-nai.
Darlene and Sam
By Saturday, still on the psych ward, I could feel my hands were weaker, but Darlene said my walking looked the same, no worse.
Darlene was sixty, very skinny, a long-haul anorectic. Did jigsaw puzzles ten hours a day and was thoroughly sweet to everyone, even Betty, who dozed in the dayroom and smelled.
The Two Kinds of Decay Page 9
