The test consists of 567 true/false questions. Some of them are innocuous and easy to answer, though in some cases oddly specific: “I wake up fresh and rested most mornings.” “I like mechanics magazines.” “I am very seldom troubled by constipation.”
Others are clearly red flags: “I am sure I get a raw deal from life.” “Evil spirits possess me at times.” “I see things or animals or people around me that others do not see.” “If people had not had it in for me I would have been much more successful.”
But others are harder to answer: “There seems to be a lump in my throat much of the time.” “No one seems to understand me.” “I have nightmares every few nights.” “I have had very peculiar and strange experiences.” “Much of the time my head seems to hurt all over.” “I get angry sometimes.” “I wish I could be as happy as others seem to be.”
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, I no longer hurt. Lying there on a gurney in the emergency room and suddenly feeling the absence of pain was a legitimate moment of ecstasy, a literal rush of relief, and that’s what I remember now, so many years later, more than anything else: the ecstatic pleasure of no longer hurting. Is this pain that bad? If it suddenly stopped, would I yell out “Oh my god, it doesn’t hurt anymore!” like I did then? I write in “7” for mild, “9” for severe, “8” for average. I’ve got to give myself someplace to go, I reason. Maybe this could get worse, maybe this isn’t a 10 yet. But I don’t know.
Have your headache symptoms or location changed?
_____Yes _____No
This is also difficult to answer. Since the blood patch a few months ago, things have changed. Instead of the pain mostly being centered on the right side, it’s sometimes on the left now, too; and I have the scrapey-head headache now, that’s new. And of course right after the blood patch, I spent weeks feeling as though my head was about to explode, that was a change in symptoms. Too much pressure instead of not enough, like the worst cold or sinus infection, my head as tight as a balloon, ready to pop. But were those symptoms, really? That all seems like a reaction to the blood patch procedure rather than something new, or something diagnostically meaningful. I circle Yes and write in: “Changes in location and quality since blood patch.”
Are you able to work?
_____Yes _____No. If no, please explain why
There is another inch-long line for the explanation. I stare at this question for a while. I circle No, obviously, but I’m at a loss as to what I can possibly say to explain my answer. It seems like it should be self-evident. It feels humiliating to have to answer. I feel anxious even acknowledging the question. Finally, I write: “Because I can’t think.” I don’t really know what else to say.
When I meet with the neurologist, all the prescreen hurd
les conquered, I hand her the questionnaire and she tucks it away with other papers on her desk. I tell her my history: the flu, the cough, the MRIs, the attempts at bed rest and medication, the CT scan that showed I had a broken neck that has nothing to do with the leak, the way the doctors thought the leak might be somewhere in my ethmoid sinus but maybe not, the canceled through-the-face surgery with the ENT, the barbaric blood patch; the way my head threatened to explode after, the way I had more upright time after, the way I was able to do a little bit more but still felt so foggy, still felt so much pain, still got worse as the day went on, still couldn’t be upright for too long at a time. I tell her about the pain, about the drunk feeling, the way it feels like the thinking part of my brain is turned off and I’m just on autopilot, talking too much, just like when I’m tipsy, moving and speaking without thinking; the way it feels as though the part of my brain that’s in charge is the part that can ramble, fake, simulate, literally go through the motions. She listens to me and calls in another neurologist, and I go over it all again as they look at my chart, scan the questionnaire, thumb through my records.
What they tell me is that it sounds like I am definitely still leaking. That the blood patch might have helped, but not enough, because it wasn’t high enough on my spine, and so it can only do so much to create a kind of temporary roadblock, a constricting place that forces the cerebrospinal fluid upward a little bit. These neurologists aren’t confused by my symptoms; the recitation of my history isn’t met with immediate skepticism and doubt. They have encountered spinal CSF leaks before in their practice, and have experience in treating at least the symptoms. They recommend another round of MRIs; a round of steroids; a series of infusion treatments, a bolus of fluids and pain medications to bust through that secondary brain-scraping headache; if necessary, another blood patch. “But can you fix the leak?” I ask, and they say they can’t. They don’t know where it is, and even if they had the diagnostic machines and experience to find it, they still wouldn’t be able to patch it shut. They don’t have doctors here with the training to be able to do that. There are places that do, out-of-state hospitals I could travel to if necessary. “But this is the next step,” they tell me. “It’s still possible for the leak to resolve itself, and these treatments will offer some relief while we wait and see if that happens.”
Wait and see, wait and see, always more waiting and seeing. The waiting seems impossible. But it feels good, a little bit, to be seen.
19
October 2015
More MRIs showing nothing. More CT scans showing nothing. I remember when I felt relieved, at first, that there was nothing, that no one was calling to tell me the scans had bloomed with tumors flowering throughout my brain. But now, after so many months, my unremarkable brain scans feel accusatory. Almost taunting. I haven’t read the literature at this point, I don’t know that it is common for someone with a spinal CSF leak to have nothing show up on an MRI, and so my non-results feel like yet more evidence pointing to this whole thing as mere malingering. Perhaps this is all imagined, this pain. Perhaps I feel compelled to seek out attention from doctors because I am divorcing a doctor. This is ridiculous, of course: but it’s what I imagine my medical notes must look like at this point. Indictments.
I’m on a course of dexamethasone steroids, and mostly what they’re doing is keeping my thoughts in motion. I now have impulse, energy, but still no clear brain to execute my plans. I feel compelled to organize, as though the part of me that can still kind of think is seeking out ways to control this, and this translates to me as ideas like clean out the closet, find a better system for the recycling, fix the squeaky table, gather up those cords, put things in order, make everything clean and understandable, even if it hurts my head to be upright and doing things. Which makes sense because everything is such a fog, everything is floating away from me as I lie in bed after organizing things, my head aching, even as the steroids course through me. I listen to podcasts and play Tetris-like games on my phone, fitting things neatly into other things, puzzling things into place until there’s no more room to fit them. It’s satisfying because right now nothing’s fitting, or perhaps because so many things are flitting away from me. And so it gives me a feeling of purpose, to do things, even if I’m doing them on autopilot: get the plate, put food on plate, bring to table, clear away, place in sink, fold laundry, put laundry away. The pleasure of things where they belong.
It’s helpful, this impulse to do things, but it’s also dangerous, because I can’t properly evaluate whether or not any of the things I’m doing are worthwhile. Some of them are, of course—making dinner for the kids, being guided through the steps as if I’m a vessel receiving instructions from beyond—but maybe if I were fully me, my brain fully working right now, I’d be realizing No, that’s not a good idea, order pizza, don’t stand up and waste time draining more of your precious brain fluid away. Or I’d be making lists of things I’d like to organize and clean and accomplish once I’m feeling better instead of just going along with this primal organizing brain and doing things I don’t really have to do. I go to the paint store and buy paint and paint a bathroom. I spackle the holes in the wall where the towel rack fell out, and I sand the spackled place, and I tape up the molding, and I paint with bright blue paint, and I climb on a ladder, and I get tiny blue spray dots on the ceiling, and in between all of these things I lie down on the floor, listening to podcasts and waiting for my brain fluid to regenerate a bit before I get up and keep going. I go back to the paint store and get more paint and start painting a wall in the basement. The steroids keep me going, but I know it’s not a good idea, that every second I stand up, my cerebrospinal fluid is draining away, my headache increasing. And yet I paint until the small bucket of paint runs out. I lie down on the floor and decide it’s fine to leave the wall unfinished. It’s not even a major wall, not a wall someone would even see if they walked downstairs into the basement. If they happened to go to the basement and turn a corner and then look to the right, they’d see it. But it’s not like it matters. This makes sense to me. This project is done for now. I can finish it later, when I’m healed.
Am I ever going to be healed?
I’m worried I’m going to be trapped here forever. I’m worried this will never go away, that I will always be leaking. How messy of me, how clumsy, how gauche, to be leaking, uncontained, how undignified. I’m worried if it does go away, it will happen again and again. I’m worried I may never fully recover from this. I’m worried about it lasting so long that my symptoms become permanent, even if I do manage to get healed.
This worry isn’t anything that can be seen on an MRI. But that doesn’t mean it’s not there.
The steroids are helping me power through this, but I can still feel everything slipping away. And what happens when this course of medication is over? Will I be debilitated like before? Will my headache return to being unbearable, will my hands disappear, will I be back to being in a permanent state of confusion? The steroids are giving me the imperative to Do Things, but I know how this works. This, too, will slip away, and then it’ll be back to bed, staring at the ceiling, listening to podcasts, tethering myself to the sound of conversations even if I can’t really follow what’s being said.
I can’t stay like this. I need this to be fixed. It’s taking so long. I’m worried it won’t be fixed. The doctors here can’t fix me, they can only give me steroids, pain medicine, blood patches. I’m afraid of having another blood patch, straight-up terrified. And I’m worried that it will fail once again.
Who am I if I can’t think like me? Who will I become if I keep thinking like this?
20
I am an unreliable narrator.
My children bear the burden of my flawed storytelling.
Is the story I’ve been telling them about this divorce, the timeline, the breakdown, the true one? No. But it is the story they can bear. And the story of my brain, of what’s happening to me, of this leak: I don’t know enough to tell them
the true story, the full story. I can only flesh out what they already know: that I’m in pain, that I am unavailable to them in a way I haven’t been before. That I look like me, but I am a poor facsimile of myself. My imagined story of what their story of me is now is one of anger and betrayal. How dare I become a ghost, how dare I haunt them from this body that looks like their mother but has somehow given up on being their mother, at the same time their father has given up on being their father. They do not tell me this story. But over and over again, I imagine it.
How fitting a metaphor, this losing of my mind; how else must it appear to them? Of course their mother has lost her mind. What other explanation could there be for suddenly abandoning this marriage, abandoning the stability of their lives? Of course their mother’s brain is struggling to function, the mother they knew slowly leaking away, a bathtub draining, a blown-up raft deflating. That is the only way this could be happening. What other explanation could be possible? That I would choose this?
And in their story, if I become fixed, does that fix them, too? There could be a version of this story in which instead of this family leaking away, becoming smaller, it comes together, it rallies, their dad sticks by me, we stay together. They don’t understand that this part of the story has been foretold, that developments have taken place in a prequel they haven’t read. The only way this comes together is by breaking apart, reconfiguring. But they can’t see that. They see me flat, or standing, confused, my illness becoming a part of the general parental drone. Lights off, take a shower, get your shoes on, brush your teeth, eat your food before it gets cold, take a sweater, my head is killing me. I worry this is killing them.
The Beginning of Everything Page 11