Those seem like traps, those seem as though answering truthfully—yes, my head does hurt all over pretty much all the time, I really have had strange experiences, this entire thing is a strange experience, I do get angry about it sometimes, I do wish I were happy like people who aren’t in pain all the time—would result in a therapist thinking, Uh-oh. And after reading through all these questions, I’m halfway beginning to believe the more obviously troubling ones that suggest a conspiracy may be afoot—A surprise brain leak, of all things? Constant pain? A divorce? Maybe the world really is out to get me! Maybe this is a message from the universe that I am a bad person! Maybe this is some kind of plot!
But I do my best to answer the questions, asking myself, How would a normal person answer these questions, how would I answer these questions if my head weren’t hurting all the time and my brain worked the way it was supposed to?—even though I suspect the test may be designed to take into account people who try to take it thinking How would a normal person answer these questions?
By the time I finish the questionnaire, I have more than surpassed my limit for sitting up, and the scrapey feeling that feels like my brain chafing and grating against my skull—even though it can’t actually be that feeling, I remind myself, my fingers massaging the back of my head anyway, as if I could launch my brain away from the hard edge of my skull like an inflatable toy floating across a swimming pool—is unbearable. But before I can speak with the neurologists, I must meet with one of the center’s in-house therapists. I’m escorted to her blessedly dark office, everything muted and somber out of respect for the migraine patients, and I gamely attempt to answer her questions as I slide farther and farther down the chair, trying to be flat. Eventually, I lie on the floor. Yes, I’ve had a constant headache for six months at this point. Yes, I’ve been told this is due to a spontaneous CSF leak. Sure, I can define what a CSF leak is. Yes, it has been stressful. Yes, I am in the midst of a divorce. Yes, I have a therapist I see regularly. Yes, my headache affects my quality of life. Yes, I spend most of the day flat, in bed, because gravity is a thing, and when I stand up, I lose more fluid around my brain. Yes, I have tried various treatments for the CSF leak. No, they have not worked.
After listening to me speak for a while, the therapist tells me about some yoga and meditation classes the center offers, some biofeedback programs. I nod and comment that right now it’s hard for me to get anywhere or do anything that involves being upright. “I hear that,” she tells me. “In fact, it seems like you are pretty alone and isolated right now. We’ve got to get you out of bed and socializing! Seeing friends! Interacting!” I remind her, through tears, the reason I am here, lying on the floor of her office, is because I literally can’t sit up. That I am at level nine pain on their dumb ten-point pain scale all the time, even when I’m flat. That “socializing” is an impossible luxury for me. That I’m being seen at the headache center to have my CSF leak evaluated, to hopefully get it repaired. Not because I’m lonely. “Ah,” she says. “Right.” Session over!
While I wait for the neurologists, I fill out yet another form, a headache questionnaire I will be asked to fill out every time I have an appointment. It takes a few months of visits for me to realize that this is busywork, that they never actually look over what I’ve written down, despite how much I agonize over getting it right.
Are there any events that have affected your headache?
_____Yes _____No
There is an inch-long line to describe these possible events. I circle Yes and write as small as I can: “I developed a spontaneous CSF leak in March 2015.”
Frequency: Number of headache days weekly_____
Number of headache days monthly_____
This is nearly impossible to answer. I don’t have headaches, I have headache. One long, ever-lasting permanent headache. I write “7” for the number of days a week I have a headache. For the number of headache days monthly, I write, “All the days.”
Have you had any headache-free periods?
_____Yes _____No. If yes, _____hours _____all day
The mere concept of headache-free periods confuses me. I can’t imagine minutes without a headache, let alone hours. The suggestion of a headache-free time that lasts all day seems particularly cruel. I circle No.
On a scale of 0–10, how severe are your headaches?
___/10 Mild ones ___/10 Severe ones ___/10 Average ones
This, too, is hard to answer. There is no difference in the amount of pain I have, not really. When I lie down, I feel better, but the pain isn’t exactly less, it’s just different, perhaps less unrelenting maybe. Pain is a slippery thing. I’ve had two children, I’ve had a kidney stone, I’ve thrown my back out, I’ve had a toothache, I’ve had paper cuts, I’ve had blistering sunburns, I’ve had shin splints, I’ve had my heart broken, I’ve stepped on a Lego—I’ve experienced a spectrum of pain, and I know that in the moment of it, pain doesn’t feel like something quantifiable, it just feels like pain. When I try to remember the acute pain I’ve experienced, like for instance with the kidney stone, I remember in an academic sense the agony, the pain so bad I couldn’t stop vomiting, the intensity. But what I remember bodily, what I have a clearer, more visceral memory of, is the moment that the stone passed and, unbelievably,
