Despite the stultifying midday heat, I have remembered to bring my thick, gray cardigan. I need it as soon as I have pulled open the heavy glass door stuck inside its jamb. I try to imagine how anyone with a disability would get past this barrier.
The stenciled gold lettering on the door lists the names of five doctors—only one of which I recognize—although none of the names are those of the two physicians whom I see when I come to this office. No one has bothered to scrape away the names of those who have left or to paint in the names of doctors who don’t seem to stay long. Perhaps this clinic is a way station for physicians on their way to better things.
Inside the waiting room, the air conditioner pumps meat-locker cold air, and its welcome relief from the heat. Thirty seconds later, a moonscape of goose pimples erupt on my bare arms, and I pull the cardigan around my shoulders like a cape as I wait my turn to check in. A middle-aged woman with a gap-tooth smile makes eye contact; she’s rubbing her arms to try to warm them and we both roll our eyes over how cold it is.
The receptionist hands me a clipboard with several sheets of paper. Each month, this is always the first step. The top sheet is always the same: It asks me about any recent imaging tests, physical therapy, or hospitalizations. It also presents me with an outlined image of the human body, obverse and reverse, and indicates that I should mark the parts of my body that hurt. It also asks me to describe my pain, and suggests several adjectives that might capture the sensation: Tingling. Shooting. Burning. Dull aching. Numbing. A series of gerunds, none of which describes what I feel. I write down “grinding.”
I have done this each of the past fourteen months that I have been a patient here, and no one has ever asked me for further details about what I mean. If they would, I would move the flat of my knuckles against each other, running the ridge of each knuckle against each other like gears without lubrication. My pain has a high-pitched sound to it inside my head, that metal-on-metal clanking that makes me clench my teeth against it. If someone were to ask, I would talk about how, even though I know that this is not the anatomy of my forehead, that the majority of my headaches feel as if there are tectonic plates grinding against each other, starting in my left eyebrow. When the cluster headache is full-blown, my nose goes numb, as if someone has punched me, my left eye gets itchy and wet, and my numb nose starts to run.
The new page underneath is a list of questions. I’m asked if I have had suicidal thoughts, but most of the questions are designed to reveal whether I am turning into an addict. Do I count my pills during the month? Am I anxious that I will run out of medication before the end of the month? Do I take more pills in a day than I am prescribed? Do I share pills with friends and family members? Do I use the pills to change my mood? These same questions are rephrased four different ways, asking me again and again whether I feel anxiety about running out of pills before the end of the month.
A third sheet contains a statement that I must sign each month. I am told to indicate that I understand that misuse of these medications can lead to overdose and death, or that I can become addicted. I am also assured that, as long as I follow the rules, I will receive my meds. And, if a time comes that I no longer need to take them, I will do so under medical supervision.
After I complete the paperwork, I may face one more hurdle. At random and without warning, I am required to submit to a urine test. This is to ascertain whether I am using other drugs—street drugs or non-prescribed painkillers—and also to guarantee that I am taking the medication at the correct dosage. The assumption is that pain patients need to be policed in such a way.
Today, it’s not my turn to submit to a urine test, but the woman who checked in behind me, a silver-haired white woman—her head thrust forward like a turtle from its shell, from what I assume to be osteoporosis—is handed a plastic cup and told to go directly to the restroom at the side of this room. The rest of us look down at our laps, remembering how humiliating it feels to be informed each month that we are not to be trusted.
The waiting room offers patients nothing in terms of comfort. It’s hard to tell whether the dust-colored tile floor is clean. The mismatched chairs line three of the walls. The paneling looks like something from the 1970s version of a man cave, back when we called those rooms “the den,” a flat brown that may have once looked like wood. The one decoration in the room is an oversized clock with Roman numerals and a shiny gold face. The first time I came for an afternoon appointment, I wrote down 1:09, which the clock hands indicated, as my arrival time. But subsequent trips to this office have revealed that those clock hands have never moved. The clock is useless.
It’s the chairs that bother me, however. As I watch, a man who must be approaching eighty years old is trying to position his walker so that he can lower himself into the chair. But each time his back starts to bend, he gasps with pain, and he pulls himself back up. In the fancy offices of expensive neurologists, chairs come in different heights so that patients with spinal issues can sit in an appropriate position. Here, in the pain clinic, no such luxury is proffered. I walk over to him, say to him that I think that they need different chairs here. “They told me that I should bring my own pillows,” he says. “I don’t think they’re interested in my discomfort.”
This multi-physician practice has eight separate clinics, but because of a strange hitch in my insurance plan, the three clinics that are closest to my house are not covered. This particular clinic—the closest I am allowed to utilize—is a forty-five-minute drive. The two other clinics where I go when this one is overbooked are sixty and seventy-five minutes away. I make this drive at least once a month. Because I am here for a Schedule II drug, I am required to pick up a paper copy of my prescription that must then be transported in person to the pharmacy. I never leave the parking lot without a careful examination that all the information is correct and that the script has been signed. I do not want to have to make this trip over again to correct errors that cannot be fixed by telephone calls or faxed copies, rules mandated by the state legislature.
For now, I go back to my seat. I watch as someone else struggles with the door, but before I can jump up, she’s managed it. Another older woman, who I’m guessing to be in her sixties based on her hair color and the lines in her face, approaches the receptionist’s window. “Is this the pain clinic?” She sounds harried. She is told that it is, and then she explains that she got lost, but now she’s going to go out to her car to bring in her friend. When they return several minutes later, the friend turns out to be a woman dependent on a walker. Her ankles are so swollen with edema that a layer of skin seems to hang over the strap of her sandal.
Many of the people I see in the waiting room are at least thirty years older than I am, and the person who accompanies them is often someone I assume to be the daughter they gave birth to as teenagers. Thus women in their sixties bring in their eighty-plus-year-old mothers. These elderly women’s bodies twist in various ways—the heads that jut forward from osteoporosis, or the uneven hips that cause them to swing one of their legs in an uneven gait, or arms held against their bodies like bird’s claws—all testament to the long-term effects of how pain and injury transmogrify bodies into grotesque structures that have lost their utility.
One element of pain is that it seems to have erased class differences. The people who come into the clinic all dress in similar ways, intended for comfort and ease of dressing. Women don’t wear heels here, and if a man comes in a suit, I know he’s a drug rep and not a patient. We are a waiting room full of pull-on pants with elastic waists, shirts without buttons, and sandals or flip-flops. We have been sent here by family doctors, neurologists, rheumatologists, orthopods, and oncologists—any doctor who has decided that Florida’s draconian response to the opioid crisis has made it too risky for them to prescribe these legal medications to their own patients. Instead, they have all made the decision to ship us off to the pain clinic, the last place in Florida where we can get prescriptions for the medications that make a difference between functioning and not functioning.
I have written in other places about my own pain story. The TL;DR version is that I have a combination of headaches: clusters, migraines, and cervicogenic headaches. On any given day, I’m experiencing discomfort that ranges from that of a mild bruise to the worst possible pain that you can imagine. Despite twelve years of treatments that have included every possible modality, drug, and alternative medicine available, the only relief I get is from opioids.
Still, on many days, the meds don’t eradicate my pain; they simply make it more tolerable. In this way, I’ve been able to keep working. As I write, the screaming headache I awoke with three hours ago is now a moderate pain centered in my left eyeball, its orbital bone, and the left side of my forehead. If I was asked to rate my pain right now, I would give it a “5”—it’s noticeable, it hurts a lot, but it’s also possible for me to power through it enough to continue working. I took thirty milligrams of morphine when I woke up, and now, I’m trying to continue working for at least two more hours before I take another dose.
The truth is that I do count my pills later in the month. I’m prescribed a set number of pills, and state law says that I cannot obtain a refill, even if my doctor were to write me a new prescription, until twenty-eight days have transpired since my original prescription. If I take extra pills on bad pain days, I must take fewer pills on moderate pain days in order not to run out prior to the twenty-eight-day mark. When I run out early, because I am physically dependent on the medicine, I will start to experience withdrawal symptoms, which always begin with drenching sweat and proceeds through body trembling, diarrhea, muscle spasms and, of course, the untreated headache that I will experience until I’m able to fill my prescription. So yes, I count pills.
What those who write about the opioid crisis do not understand is that there is a huge difference between addiction and physical dependence. If you take any medication for a long time, you will most likely experience some kind of withdrawal if you stop taking it. A few medications have no side effects if you stop taking them, but for many, doctors will advise you to taper off over a period of time in order for your body to adjust to the changing levels of drugs in your bloodstream. It’s the same process for opioids: Over the years, I have tapered off several of them when the doctor and I have opted for different treatments.
Addiction is a different animal. It is physical dependence plus a psychological fixation on the medications to change moods and feelings; the addict comes to believe that they cannot live without the drugs. Addiction to opioids is real, and yet studies have consistently shown that the people who become addicted to these medications either had a history of addictions prior to taking the meds, or started using the meds not for therapeutic purposes, but as recreational users who used the drugs to get high.
I’ve rarely gotten “high” off my painkillers. I have felt relief at having my pain levels drop, but that fuzzy, ecstatic sense of well-being, of flying, of feeling on top of the world, is not part of my experience. I remember having that feeling once when I was given codeine after a root canal as a teenager—a sensation of happiness, silliness, giddiness—but the only thing that happens to me if I take more medication than I am supposed to now is vomiting and nausea and a desire to sleep.
I used to fret a lot more about becoming addicted, worried that perhaps I took pills to lift my emotions or “check out” when life felt too tough. It can be difficult when my head has been hurting for hours—not at an excruciating level, but enough so that it’s always in the background—to know whether I “really” need to medicate at that point or if I could continue to tough it out. Sometimes, when the pain will not break, I feel depressed and hopeless, and I long for something to make me happy. But happiness is not in an opioid. I try to stay mindful about all of this. (Of course, when I really start thinking about pain and pain relief, I wonder why it is that we valorize those who can withstand pain better than others, as if it’s some kind of competition. But that’s an essay for another time.)
My name is called. I will talk to my doctor for ten minutes, updating him on any way that my pain may have changed. I tell him that I have started going to the gym again, working out so that I push my heart rate up into my mid-aerobic zone and keep it there for sixty minutes. I tell him that I’ve noticed that after my workout, I’m infused with a sense of happiness, that I recognize that I’m getting some endorphins from pushing myself that hard. I tell him that all my life, exercise has supplied the best way I know of getting high. He smiles, and writes me another script. I will do this all over again in four weeks.