I have returned from a visit to the country of pain, a place where all of us stop from time to time, and some of us live. It is a small country, to hold so many of us; small enough to crawl over, to learn each stone and shard of glass in the road with a sickening familiarity.
My own sojourn began without any real warning — just a sharp ache in my hip which soon spread east and west. Friends had advice: “Try lying on the floor with your legs on a chair.” “Try ice.” “Try heat.” “You know, it’s okay to take four Advil at once. My doctor told me once.” Nothing worked. I saw a doctor, who suggested that I might have bursitis, or the beginnings of arthritis, and declined to prescribe any medication. I asked about an injection of painkiller, or possibly an anti-inflammatory. He waved such ideas away. “Let’s see how it goes,” he said.
This was the beginning of my rough education in pain management. Two days later I was on the phone begging for medication, which was granted (albeit slowly through the layers of bureaucracy); three days later I’d received two separate injections, each of which was wonderful… for several hours. And four days later I was a screaming, crying wreck who was taken to the emergency room. Not by sitting in a car seat; that was impossible. I crawled into the back and lay there on my stomach, knees bent.
I’d never gone to an ER for myself before — I’d only brought other people — and I’d always considered it a sort of waiting room for Hell. Avoiding hospitals in general had been a priority. My regular provider, however, was perfectly clear on the phone: “We can’t help you. Go to the emergency room.”
And here is the first lesson: that pain scale from one to ten? Don’t be conservative. Be communicative instead. The scale suggests that ten is the worst pain you can imagine; well, I don’t know about you, but I can imagine quite a lot. So fuck that. Here is my new standard:
(1) If the pain seems unendurable, and you don’t know how you’re going to get through the next five minutes, though you also know you have no choice; and
(2) If you were told you would have to live this way the rest of your life, you would kill yourself —
–That’s a 10. Really, it doesn’t have to mean burning alive while demons eat your entrails. Your doctor isn’t going to understand you grade on a curve. If you desperately need help, let them know you desperately need help.
A few hours later I was discharged from the ER, having had two shots of morphine that just took the edge off. “Get a referral for an orthopedist,” they told me. Also, “A hot shower will help.” My friend explained, “She tried that this morning. It didn’t do anything.” The doctor repeated slowly and firmly, as though no one had spoken: “A hot shower.”
They did offer me a walker: “If you’re willing to have one.”
“Why wouldn’t I have one?”
“Some people associate it with the elderly…”
I suddenly recalled a time, years previously, when I’d been in Chicago to visit the set of Early Edition. I was hit for the first time by a burning case of plantar fasciitis, and needed to keep weight off the soles of my feet. I’d been offered a walker by a man in a pharmacy, and had been appalled. “I am not using a walker,” I’d said firmly. Instead I opted for two canes, which I managed in tandem like crutches.
This time my attitude was different: give me the fucking walker. As I made my way slowly down the hallway toward the exit, I passed through a small group of paramedics, who, seeing my pain, offered to help me get back to my room. “She’s been discharged,” explained the friend who’d driven me here, blackly amused at their taken-aback looks. I crawled into the back of the car again — lying on my stomach provided some relief — and we returned home.
I spent the next five weeks lying on my stomach in my living room, alternating between pain and a pain-nausea pas de deux. It was hard to tell whether the vomiting was caused by the pain or the medication, which was heavy on acetaminophen. (“Am I destroying my liver, or am I just paranoid?”)
My friend/assistant moved in and slept on the floor beside me in the living room, with a Doberman and a Bichon curled around her. She (or sometimes, other friends) got me what little food I could eat and brought it to a table by my bed; I ate lying down, or stood up with the walker for a brief period in an attempt to soothe my digestion. Sitting was out of the question.
Here is what I learned: pain is a box. A light, bright trash compactor that takes your life and squeezes it into about a foot square. Anything outside that box has no interest for you, and soon begins to seem unreal. I’d been negotiating to buy a small place in the country — a place for the future, a place to write those novels that have been stacked up like planes waiting to land; a place with trees and acreage, where I could walk my dogs off-leash. Suddenly it was hard to imagine that I would ever have a life outside the bright white box; this talk of colorful future days seemed like some sort of fever dream. I put it aside. Besides, who could deal with the complexities of buying a farmhouse? I could barely make it to the bathroom and back.
I remember turning my head one afternoon, and glancing from my mattress in the living room straight back through the dining room and kitchen and out the window to the yard, where dappled sunlight gleamed on the waving leaves of a ficus-fig tree. It seemed as though I were looking at an alien planet.
The next lesson: illness begets illness, as other things happened that I could not account for. I got a sore throat and my voice changed. I saw flashing images in the periphery of my vision — not, as it turned out, a sign my retina was detaching, but that the blood flow to my head had been affected; better see a neurologist. Spasms would descend on me suddenly, usually in the evening, getting worse as the hours progressed. I recall one particular night, at about two in the morning, as my friend desperately massaged me in an effort to lessen the pain. I’d mentioned the ER as the pain wall climbed, but she tried to talk me out of it — I know she felt, Been there, done that; let me go back to bed. I couldn’t blame her. “What can they do for you at this point?” But after another hour of screaming I crawled into the car again, and off we went. There was black humor in it; as I paced with the walker, crying, the patient who was ahead of me in line said to the admissions woman, who was asking about his address, “Um, maybe you should talk to that person first.”
They added a muscle relaxant to the morphine injection this time, and it was a blessing from heaven.
Through all this, I would think blankly, “Two weeks ago I was fine.” “Three weeks ago I was fine.” “A month ago, I was fine.” How was this possible?
The hip specialist, when I finally saw him, took one look at me and said, “I’ve never seen a hip patient lying on their stomach. And I’ve never seen bursitis cause this much pain.” He said that he believed the cause was actually in my lower back (which felt fine). “We’ll get you an MRI. I’m betting it’ll show herniated disks.”
So I was scheduled for an MRI… about a week to ten days later. And here is the other great lesson I learned from my sojourn in pain country: I’d always assumed that if someone was in great pain, the wheels of the bureaucracy would turn quickly. In fact, they turn at exactly the same pace as before. You’ll get an MRI in a week or so, unless, as we did, my friend called the MRI place and asked if they had any cancellations sooner. They did — but we had to be active about it, and then beg. So, victory at getting the MRI that Friday… but then, someone has to write up the report. Heavens, you wouldn’t expect that to happen on a weekend. Hopefully he’ll get to it on Monday or Tuesday… if you call and push. But then you’ll need another appointment with the orthopedist (this time, the spine specialist). With luck, maybe you’ll get that another week or ten days after the MRI.
By then, you’ve heard that magical word, “Epidural.” You crawl into the car to see the spine specialist, expecting that now, with the MRI information, he can perform such a procedure. But he doesn’t do that; no, you need to make an appointment with the pain management specialist. By now you’re a few weeks into this, and it’s the first time anybody’s suggested that pain management specialists exist.
“And don’t think you’ll get the epidural then, either,” the orthopedist warned, having heard the somewhat unhinged hysterical laughter made by the two friends who’d brought me in. “That’ll just be the consult.” Which will be in another week to ten days. And unfortunately, nobody can call the office of a pain management specialist and ask to get you in quickly “because she’s suffering”; everybody who sees him is suffering.
And so on and so on. Accompanied, of course, by the requisite bureaucratic torment beloved of my health insurer. Scramble, scramble for those referrals. The first orthopedist’s referral, we found out as we were leaving, was for the brother of the doctor we saw (they share the office, and of course, the same last name). Insurance won’t honor it. Call back the primary doctor and get a new one for his brother, quick, because they won’t honor retroactive referrals either. Then you’re returning to the same office to see the spine specialist? New referral. Pain management? “You’ll need a new referral. His office won’t even book you till they get it.” What about the epidural? “We’ll need to put in for authorization.” “How long will that take?” “Sometimes two or three weeks.”
Phone call after phone call. And I know from experience that my insurer will deny receiving referrals about half the time anyway. I could understand why I’d heard that the mother of a boy with a degenerative disease, who shared my insurer, was reduced to tears at least once a month simply from trying to deal with this.
And then there’s the dearly won knowledge that one must ever keep track of how many pain pills you have, and whether they will get you through the weekend, or rather, whether they will get you through the next four days, as it’s late on a Friday and your orthopedist won’t get the message till Monday and his office is adamant that it’s a 48-hour turnaround. And the many phone calls that go with this, and the constant fear that your request will be declined — not that the doctor’s office will ever call and tell you this; you’ll only find out as you continuously check the pharmacy.
I told the pain management specialist that I didn’t care whether the epidural was insurance-approved or not; I just wanted it, and I’d pay whatever it turned out wasn’t covered. He agreed to set a date three days later. There are people in the world who can’t make that kind of offer. And there are people in the world who’d lose their jobs (and possibly their apartments or their cars) if they were absent from work for a month or more. I am fortunate.
I am fortunate. I have had three epidurals, and physical therapy will soon begin. My dog was able to sit in my lap, briefly, for the first time in seven weeks. The sounds I make have dwindled to the occasional yelp. I am on the tarmac, my plane accelerating, ready to take off from the country of pain and show me the curve of the globe beneath my window. I was only a tourist after all.
Some of us live there.