These thoughts were largely too large to grapple with in my still-foggy state. In hopeless moments of clarity, they would float to the surface, along with worries about how I would work if I never fully recovered, how I would survive making dinner for the kids that night, how I would live the rest of my life if it was going to be like this forever, and I would promptly fall asleep, the pain in my head a flat constant warning buzz, my brain too overwhelmed to think about itself any longer.
But as my brain continued to heal, and as I began to find myself less trapped in my bed and more a commuter between the two worlds of the sick and the well, I found myself drawn to stories. True stories about science’s search for understanding of the brain’s capacity to heal itself; stories of early, technology-deprived adventurers pushing the brain to its limits in the thin air of Everest; the modern spiritual folktales of “mind over matter,” “thinking positive,” and “brain training”; the ancient tropes of fairy tales, making meaning out of suffering, solitude, and transformation. I wanted to know: Where was “I” when I wasn’t there? Who was I when I wasn’t “myself”? And who was I when I couldn’t think? The more I recovered, the more I was able to contemplate these questions, and eventually—gradually, slowly—I began to trust that it was, if not exactly safe to start depending on my brain again, important to reconnect myself to the world as surely as the pathways in my brain reconnected themselves. To get on with the ongoing business of living, which had never waited for me to catch up to it. To stop dreading the seemingly inevitable return of the pain and fog, the clouding of my brain no medical professional could assure me with 100 percent certainty would never happen again. I found myself instead on the other side of the divide: divorced, instead of divorcing; healing, while being mindful of the time I spent unwell. The questions of self and agency and autonomy still haunt me, even as now I have begun to move through the world again and take everything for granted. But I have come to understand that, whether or not the leak returns, whether or not the me that is me is truly the me I understand it to be—this is who I am. A woman standing, leaning into the wind, just like that cold day in March, in the midst of my life, in the middle of an intersection of body and mind and circumstance and history, and maybe even fate.
PART ONE
The Fog
Spontaneous intracranial hypotension is an uncommon but not rare cause of new onset daily persistent headaches. A delay in diagnosis is the norm. Women are affected more commonly than men and most are in the fifth or sixth decade of life. The underlying cause is a spontaneous spinal cerebrospinal fluid (CSF) leak. Typically the headache is orthostatic in nature but other headache patterns occur as well. Associated symptoms are common and include neck pain, a change in hearing, diplopia, facial numbness, cognitive abnormalities and even coma. Typical imaging findings consist of subdural fluid collections, pachymeningeal enhancement, pituitary hyperaemia and brain sagging, but magnetic resonance imaging may be normal. Myelography is the study of choice to identify the CSF leak but is not always necessary to make the diagnosis. Treatment consists of bedrest, abdominal binder, epidural blood patching, percutaneous fibrin glue injection or surgical CSF leak repair. Outcomes have been poorly studied.
—Wouter I. Schievink, “Spontaneous spinal cerebrospinal fluid leaks,” Cephalalgia, 2008
1
I am an unreliable narrator.
And yet, here in the doctor’s office, it is required of me to tell my story.
Where does it hurt? Does the pain change? When did this start?
These are valid questions, but attempting to answer them, attempting to explain from the inside out, seems impossible. At first because the pain is so distracting, a softball-sized hit to the base of my skull, my hands perpetually massaging it at the back of my head, as though it could be possible to ease it out physically, if only my fingers were strong enough.
And then because, after a time, after so much constant pain, it becomes impossible to think at all. Words float away from me, simple questions cloak themselves in impenetrable meaning, I find myself lost in the long pauses I find compulsory to take when answering things like “How long do the headaches last?” or “How many days a month do you have a headache?” or “When did this start?”
And then of course because my narration is suspect. You will have to believe me when I say that it is hard for me to be believed, that I say “headache” and the doctor writes down “migraine,” even though I have no history of migraine; that I describe my symptoms and am asked, a knowing nod, an eyebrow raised, “How old are you again, 43?”; that I present my history and find myself met with skepticism about the veracity of my reporting.
Have you tried ibuprofen? Have you tried caffeine? Have you tried meditation? Deep breathing? Vitamin D?
What they are really asking is, Have you tried not being a 43-year-old woman in the midst of a divorce?
It’s a headache, I’m a woman. How is this a mystery?
“When did this start?” is the hardest question to answer. It should be the easiest, because how else do you start telling a story except at the beginning? I see now the advantage of fairy tales, of the old stories that begin in the far-off haze of “Once upon a time,” because who can say definitively when the start of anything was? When the earth cooled? When the universe was born? Trying to find the inciting event is like trying to trace back the decay of my marriage: Was there
