Kelly Davio’s previous Waiting Room columns can be found here.
The health care system I use prides itself on displaying laminated pain scale cards in each of its offices. Whether I’m in the physical therapist’s room with its suspicious-looking cords and pulleys or in my neurologist’s office being knocked upon with a hammer, everybody wants me to consult the pain scale and identify my discomfort with a number.
The card features a range of cartoons helpfully arranged in order of misery. From left to right, the little numbered faces range from chipper (indicated by perky eyebrows) to suffering grievously (suggested by what are either tears or cheek goiters). I make a dutiful attempt to pick something appropriate, but the only intervals on the scale that make sense to me are zero (“totally fine, nothing to see here!”) and ten (“I welcome the sweet embrace of death”). The rest of the rankings are hazy to me, partly because they move by multiples of two, and the jumps between facial expressions seem a little precipitous; somewhere between 6 and 8, the smiley face looks as though it’s been the victim of an alarming crime. Whatever happened at 7 or 7.5, I don’t want to know about it.
Even when trying my best, I’m terrible at sorting out what’s what on the scale. Is a migraine a 4 or a 5? Is a dislocated rib a 6 or a 7? Experience tells me to just aim for something low unless I want a disbelieving look and a furtive note written in my chart. However I feel, I just call it a 3.
As though the pain scale doesn’t offer enough confusing bodily arithmetic, the more complicated I’ve become medically, the more incomprehensible the calculations I’m asked to do. When assessing my candidacy for a surgical intervention last spring, the head of the department at the hospital asked me to tell him to what percentage I’d been debilitated by my neurological disease.
“What percentage?”
I had prepared myself for all kinds of possible outcomes in this consultation. I was ready for anything, from him brushing me off to telling me that I’d need one of the more gross and undesirable procedures for which he’s known. One thing I hadn’t prepared for was performing quality-of-life math on the spot. I didn’t know how to put a number to the way I lived, or to the extent to which I’d adapted, year after year, to a new and inadequate set of circumstances.
I told him, “I have no idea.” He assured me that he just wanted an estimate, as though that clarified anything. At this point, I was emotionally exhausted, and I was frustrated. As I often do when frustrated, I said whatever came to mind.
“I haven’t been able to chew a salad for three years. I can’t teach a whole class anymore. I can’t walk anywhere without falling. I stop breathing sometimes. You tell me what percentage that is.”
He stopped typing away at his computer, swiveled around in his chair to look at me, and smoothed out his tie. “I think you answered my question.”
He performed my surgery three months later.
For a time, I assumed that my reluctance to get behind assigning numeric values to my life had something to do with what the mathematician John Allen Paulus called “innumeracy,” or the “mathematical analogue of functional illiteracy.” As a teenager, I bought wholeheartedly into what I heard so often: girls aren’t good at math (why anybody was telling perfectly capable girls that they were inherently deficient in any academic subject is a topic for another day), and I expected very little of myself when it came to quantifying the world. I freely admit that I am among the people whom Paulus says “readily understand narrative particulars, but strongly resist impersonal generalities.”
I concluded that it was my fault, this perplexity with the pain chart and my befuddlement with the business of assigning percentages to disability. In fact, I took it as a personal failure that I couldn’t grasp the impersonal generalities folded up inside my experience. What did it matter to the doctor, after all, whether I could chew a salad? Why would he care how long I could lecture to a class before I couldn’t breathe anymore? It had nothing to do with him or with the cost/benefit analysis of cutting me open.
Have I been treating my personal experience as too, well, personal? Is it time to get onboard with those impersonal generalities? Maybe. But I’ve found myself incapable of doing so. And it’s not, I’ve decided, that I’ve got such an extreme case of innumeracy that I can’t deal with reality. Instead, I’ve realized that the medical world’s insistence on dealing with patients by impersonal numbers is quite convenient when it comes to treating us as problems, not as people.
This fact came home to me last month while going through the details of a potential new health insurance policy. Here are a few of the insurer’s impersonal numbers: 0 (the amount of benefit a patient is allowed for incurable illnesses, such as the one I’ve got), and 5 (the number of years I’d have to be medication-free before the company would even think about offering me care). Then there’s 6 (hundred dollars per month for a single drug). There’s also 25 (thousand dollars for the donor plasma that’s a standby of treatment for patients like me). These numbers are not impersonal. They are the equivalent of being told to take a running jump off a cliff. They are numbers that hurt.
I think I’ve had enough of impersonal generalities when it comes to my body, my treatment. I’m not going to be able to convince insurers that my life is worth preserving, of course, but I am going to start where I can, with my private war against the pain scale. In this month’s bevy of appointments, I’m forgoing the little faces on the chart. “Do you mind if we don’t do the numbers?” I plan to ask. “Let me tell you what it feels like.”
