The Pain Chronicles (27 page)

I had reduced my pain, but I had never fundamentally shifted my narrative. “Build . . . an illness narrative that will make sense of and give value to the experience,” the medical anthropologist Arthur Kleinman enjoins. When I first got the results of my MRIs, I had resolved to take control of my situation. I felt I was suddenly seeing things clearly: the nature of my pain, the nature of my relationship with Kurt. I made a slew of doctor’s appointments, left Kurt, and ordered a special pain diary from the Arthritis Foundation to document my quest for healing. I loved reading pathographies—first-person accounts of illness. Perhaps I could write one.

The pain diary had an uplifting title printed on its glossy cover,
Toward Healthy Living: A Wellness Journal
, but I added my own title:
Pain’s Progress.
When I was eleven, I had been taken with
Pilgrim’s Progress
, and for a year or so, I had seen my life through its story. Perhaps it could be my model: my pain the burden on the pilgrim’s back as he struggled up the Hill of Difficulty or descended into the Valley of the Shadow of Death. Soon I, too, would arrive at the Delectable Mountains.

But my tale was not turning out like the pilgrim’s. I hated to reread it.

Pain Diary:

I Wish for More Betterness

Toward Healthy Living: A Wellness Journal

You have purchased this journal because you want to take charge of your life . . . Living well with chronic pain and illness begins with action, first by learning about your condition, then by doing something about it . . .

Throughout this book you’ll find wisdom from a variety of people . . . Read their words for what they’re worth, then add your own words of inspiration . . .

“Even comparatively well-adjusted patients can have the idea that their pain physician should be able to eliminate all of their pain and that failure to do so is tantamount to withholding treatment,” the article “Dealing with Difficult Patients in Your Pain Practice” warns physicians. “Some of the primary tasks a pain physician faces as a healer are to foster realistic expectations for treatment success . . .”

The only thing I had wanted from a doctor was a cure. The first seven doctors I brought MRI films to were not inclined to offer this, and neither, I realized ten minutes into the consultation, was the eighth. I had gone to see a rheumatologist (a doctor who specializes in arthritis, autoimmune diseases, musculoskeletal pain disorders, and the like) who had sent me to the Jock, a physiatrist—another specialty I had never heard of, which focuses on rehabilitation. The Jock, as I thought of him (a short man in his early thirties, with an aggressive manner and an alienating buzz cut, whom I dismissively pegged as a former hockey player), was talking to me about the same treatments other doctors had suggested: physical therapy, steroid injections, anti-inflammatories, more physical therapy. I tuned out as he detailed them, because I felt that he was fundamentally talking in the wrong way.

There were two modes of discourse in medicine, I had recently realized. There is the Cure Mode, the one I had always been in before, in which the doctor said things like: take this and call me if you don’t feel better, and we’ll give you something else. “I hate to see it drag on like this,” my primary care physician would say of an ordinary cough that had lasted what I now saw was a paltry few weeks, sounding impatient not with me, but with the cough. Then he would scribble a prescription that would put an end to it. This was the way I liked to interact with doctors: problem, solution, gratitude.

But there was another mode, I now realized: the Treatment Mode. In the Treatment Mode, appointments were long, and they involved an unknown number of follow-ups and referrals to multiple other health-care professionals. Conversation centered on
improvement
and
reduction
and
management
, as in, “the goal is to reduce your pain to a manageable level.”

That was not my goal! I appreciated that the cure for my pain must not be obvious, or the other doctors would have thought of it, but I still felt that if the Jock had realized that
I was only interested in the cure option
, he should be able to come up with something else. I wasn’t asking him to think outside the box: the Treatment Mode simply was not my box.

“Could surgery fix my problems?” I liked the idea of that—cutting out my pain like a tumor.

“Not with a multilevel problem. Surgery can’t fix degeneration of the cartilage, and you can’t go through at every single level and shave off all the bone spurs—and we don’t know which ones are causing the pain, anyway. Now, if the stenosis progressed to the point of impinging on the cord itself, and you were losing function, we’d go in there and open it up . . .”

The old image of myself as a skeleton came to my mind.
This is an example
. . . the doctor was saying to the eager young students.

“So you’ll give physical therapy a try?” he said.

I frowned. “I told you, I already gave it a try.”

I had stopped in at the physical therapy department in the basement of the hospital after a previous consultation, and I didn’t want to go back.

There were old people, and young people whose bodies had been made old with disease, humbly trying to make a little progress—to stretch or strengthen or unshrivel. I didn’t want to work
with
a broken body, I wanted my old, true body restored. Just yesterday (okay, a few years ago), I had had a good body—not especially strong, but at least smooth and sleek. I wanted the Jock to reassure me that we agreed on the same goal.

“If I did physical therapy, would I be able to canoe?”

“Hmm. We have to see how your shoulder progresses,” he said, and began to discuss rotator-cuff disease. “Is canoeing important to you?”

“Critical,” I said with great feeling. Despite my lifelong dislike of canoeing, the idea that I would never be able to change my mind and take an interest in it suddenly seemed terribly sad. “And kayaking,” I added, for good measure.

“Paddling is hard on the rotator cuff. We’ll have to see.”

“If I did physical therapy, how long would it take?”

“You should see improvement within three or four months.”

“But when would it be normal? When would I be able to canoe?”

He demurred.

“I want to set
a definite date.
I’m not doing PT without a definite date.”

“I can tell you in my experience that once these things become chronic, they rarely
if ever
go away,” he snapped.

I began to weep. As I left, everyone stared: the receptionist, the nurses, and the other patients in the waiting room. I went to the bathroom and ran cold water over my face, but tears kept burbling up through my eyes.

“He said that it couldn’t be normal,” I complained to the rheumatologist who had referred me to the Jock.

“He did?” the rheumatologist replied.

I nodded, tears beginning to well again at the memory of the pronouncement.

“I am very surprised. I don’t know why he would talk to you like that.” He looked genuinely perturbed. “In fact, I am going to call him and discuss it with him.”

I sniffled and nodded.

“He says he didn’t say that,” the doctor said when he hung up. “He said he is optimistic about your case.” He waved his hand optimistically. “And so am I.”

So there it was. I had manipulated the senior doctor into criticizing his junior colleague so that the junior doctor would say what I wanted to hear. The absurdity of the Bargaining Mode was suddenly clear to me.

“I know it might not get totally better,” I said in a small voice. “I just want to make some improvements.”

The rheumatologist nodded affirmatively. “Absolutely. You can definitely make improvements. Let’s walk down to physical therapy.” As we walked, he began explaining how strengthening muscles can stabilize joints and compensate for nerve damage. I had heard it before, of course, but this time I began to listen.

AT THE WILL OF THE BODY

I had been struck by how the rheumatologist talked to the physical therapist—respectfully, deferentially, as if the therapist were in possession of knowledge and skills he didn’t have. There is a body narrative, I tried to tell myself: the physical therapist directs the body narrative, just as a psychotherapist tries to improve a psychological one and a religious counselor fosters a spiritual one. A person must be patient with a body narrative. A person must try every single thing with an optimistic—not desperate—attitude, hoping it will help but not being devastated if it doesn’t. Ten treatments that each result in a 5 percent reduction in pain can collectively cause a 50 percent reduction . . . that kind of attitude.

As I did the exercises and built up muscle, the image of the skeleton receded. I still resented physical therapy—I wanted to punish my body for hurting me, not coddle it!—but I did it. I read Arthur W. Frank’s memoir of his illnesses,
At the Will of the Body
, and I tried to accept his idea that we are at the will of—not at war with—our bodies, regardless of whether our bodies are the way we want them to be. Disease is natural, as is death; our bodies have not betrayed us by sickening.

At the rheumatologist’s suggestion, I wore a big white cushioned brace, known as a cervical collar, around my neck that held it upright. It was extremely noticeable. When people asked, “What did you do to your neck?” I couldn’t think of an answer.

“I didn’t do anything.”
It got bad on its own.

“Were you in an accident?”

“No.” The silence was awkward. I experimented with adding, “It’s a treatment for a type of arthritis.”

“Arthritis! But you’re so young! How did you get that?”

It’s a punishment for my sins.
“Bad luck, I guess.”

“Did you have an accident?”

“It’s congenital.”

“Does it run in your family?”

“No.”

I wanted to take Vioxx or Celebrex—anti-inflammatory drugs known as “super-aspirin”—which, unlike aspirin and Aleve, are designed to protect the stomach. But my insurance wouldn’t pay for them, so I took Aleve until the lining of my stomach wore away and I became chronically nauseated. A camera was sent down my throat to photograph the dilapidation, and lots of expensive stomach work later, Vioxx was approved. I puzzled about this: the insurance mastermind with the incorrect calculus. Since such a large percentage of people who take anti-inflammatories do end up with stomach problems, why wouldn’t my insurance company, Oxford, pay for Vioxx in the first place? Was its CEO planning to cash in his stock before everyone’s stomach problems set in—or would he move to another company where they had been paying for their customers’ stomachs all along?

Then, in 2004, people who were at risk for heart attacks and strokes had a higher rate of them on Vioxx, and the drug was removed from the market. The media coverage presented this as a good thing, which infuriated me. They were at risk! My drug! What the fuck. I called the pharmacy the minute I finished reading the article to see if I could get a refill, but the recall had already taken effect. I had nine remaining pills. I called a friend who took the drug and asked if she had any leftovers.

“Oh, no. Haven’t you read about it?” she said. “Vioxx is dangerous.”

“Do you still have any?”

“I would not be comfortable sharing them with you,” she pronounced primly.

I switched to Celebrex, which was good, but not as good for pain relief (and poses some cardiovascular risks for the same population as Vioxx did). Moreover, although evidence is mixed, one study found that taking COX-2 inhibitors (the category of drug that include Celebrex and Vioxx) for two or more years reduced the risk of breast cancer by 71 percent. And breast cancer, unlike heart attacks and strokes, is a disease for which I am actually at risk.

I tried a stronger anti-inflammatory in an injection of cortisone—a steroid—into the inflamed tendons of my shoulder. Steroids, which reduce pain and inflammation, are more effective when injected directly near the afflicted nerves than when they are taken orally and diffuse through the body. Then a pain specialist recommended a steroid injection directly into the vertebral space of my neck. Unfortunately, the space between the vertebrae is small, and when I was getting the injection, the needle accidentally punctured the membrane that surrounds the spinal cord. I thanked him, got in a cab, and scheduled a blind date for three days later—the time the steroids were supposed to take effect. I imagined how much prettier I would look by then, my head on top of a pain-free neck.

I did not know that the spinal cord (like the brain) is always bathed in fluid, which is held in by the dural membrane. This fluid rises up the spinal column to the brain, where it cushions the brain from the skull and keeps the brain at a certain pressure. In the days after the procedure, the hidden puncture in my dural membrane caused the fluid to slowly leak out of the hole, so that the pressure in my skull changed and my brain no longer floated in the right way. When I moved my head, my brain sloshed around, causing
excruciating pain.

It was the worst headache I have ever had or imagined: the kind of headache that makes one long to be beheaded. I was supposed to be writing an article about vampires, but instead I lay perfectly straight in bed, with the crimson curtains drawn, staring into the shadows. Every time I turned my head, my brain thumped sideways and I wished I were dead.

After three days, I stumbled back to the hospital. I had never felt so thankful to have faith in a doctor. A short, ethnically Chinese man from Malaysia who had done his medical training in England, Dr. Ngeow had a large, saintly sort of presence, upon which it was impossible to project malevolence or carelessness. (And a dural puncture actually is just a risk of the procedure—not a failure of skill—but without his saintly personality, I’m sure I wouldn’t have seen it that way.)

He offered a solution: a “blood patch.” He would pump a syringe of my own blood into the hole in my spinal cord until it clotted and patched it up. In the hours while we waited to get approval from my insurance provider, as the Oxford doctor failed to return Dr. Ngeow’s call and then disappeared for a long lunch and then went into a meeting (“a doctor who keeps banker’s hours,” Dr. Ngeow fumed), we chatted about translations of the New Testament.

When the approval finally came, he withdrew some blood from my arm and pumped that blood into the dural space (with a splitting, violating, penetrating pressure). Then I lay prostrate on a hospital bed, feeling like a vampire enlivened by blood, rising from the dead. Once an hour, a nurse came and raised the headrest of the bed a few inches, as the fluid regenerated, rising up the spinal column into the skull, until at the end of the afternoon I was sitting up, my brain buoyed, images of the vampire dispelled, and my thoughts returned to normal.

They did not stay normal, however, because over the next month the steroids slowly diffused through my system and made me crazy. I suffered from a side effect called disinhibition, which was like being drunk in a way that I was never drunk: aggressively. I told an editor his publication sucked. I told an American Airlines representative she was scum. I would wake up the next day and recall fragments of what I had said the day before and blanch in shame. At that time I was in the habit of going out every night. I didn’t want to stay home until I was no longer crazy—I wanted to avoid being alone and in pain and to avoid thinking about the future and how I would be older and still alone and in more pain. But each time I went out, I alienated someone else.

In the steroid state of mind, social occasions struck me as opportunities to air old grievances—grievances I had successfully kept to myself, but suddenly felt compelled to expound upon at great length. When I went to dinner at the house of an old boyfriend and his wife, I was reminded of their wedding years before, where I hadn’t been allowed to bring Kurt, on the grounds that they didn’t believe I would marry him and didn’t have room for stray dates. So I went alone, and the groom’s family came up to me and said, “This must be
so
weird for you,” and I had to smile blithely and say, “Why, no,” instead of,
You are making it weird right now.

It had all happened years before, and the groom had been right: I hadn’t married Kurt, so if that was the selection criterion for their guest list, he had selected correctly. And it was their wedding, so the guests were theirs to select. But under the influence of the drugs, those things only irritated me more. And it suddenly seemed urgent to communicate to them the full extent of that irritation.

When the drugs wore off, I found these conversations impossible to retract, because the feelings I had expressed were ones I actually felt—but shouldn’t have shared.

In the years that followed, I tried to stay clear of invasive interventions and to focus instead on treatments that had no side effects. I counseled myself in a chirpy, women’s-magazine be-your-own-life-coach manner on the value of small Lifestyle Adjustments, such as replacing my heavy leather Coach handbags with nylon fake Prada ones from Chinatown. I was chary about medical expenses, shunning treatments that insurance didn’t cover, and avoiding doctors who were out of network, because the reasonable and customary charges Oxford covered were not reasonable or even customary. Yet I had two savings accounts: one to save money to buy an apartment (a goal I never got closer to realizing as my savings grew incrementally while the price of real estate in New York City grew exponentially) and the other for a rainy day.

One day it occurred to me that my priorities were absurd.
It was raining
. This was my body—my permanent residence! As long as I didn’t go into debt (or perhaps even if I did), I should spend all my resources trying to shore up the house of my soul—the only place we ever truly dwell.

I began having weekly massages and taking Pilates lessons to supplement physical therapy, and I found an osteopath who told me she was manipulating my spine into a better place and that it would stay that way. Did it? Who knew. The important thing was to keep trying things and stay positive. I set a timer and took twenty-minute showers while stretching under the running water. I used heat therapy with an ingenious product called ThermaCare, pads that adhere to your neck or back that interact with the air in some way that makes them stay hot for hours. I love ThermaCare. I bought carts full in fear that one day Proctor and Gamble would callously discontinue it and I would be left with—what?—only a few years’ supply. But sometimes the depth of my feeling for the product depressed me, and I thought,
How did my bodily welfare
(which turns out to be the same as my welfare)
come to depend on
ThermaCare
?

The treatments were all so modest, I felt that none of them addressed the depth of my despair. In being grateful for them, I was aware that I was conceding (to myself, to the universe) that there was no cure. Sometimes I’d hear patients talking about magical cures—urging me to try this healer, this diet, this technique—but I didn’t believe they would help me. I’d think of the joke in which a patient consults a doctor about a problem. “What do you think I am? A magician?” the doctor declares, throwing up his hands. So the man goes to see a magician. “What do you think I am?” the magician says. “A doctor?” Just because Western medicine was failing me didn’t mean alternative medicine would not also fail.