The me who was still Me, who was tucked away somewhere behind the overwhelming pain of my spinal CSF leak, was not the me that arrived at medical appointments in a daze, everything hazy and unreal, a disconnect between my physical self and my brain, between my brain and my mouth, between my brain and my mind. It was not the me that lay on the floor, waiting, confused, unable to articulate what was happening. It was not the me that went on without me, walking without purpose, talking without thought, words racing ahead of me, meaning things I didn’t intend, sounding strange to my ears, feeling foreign in my mouth.
While I was leaking, the me that was still Me was trapped inside this other me, which kept going even though I couldn’t think. And yet that me was also Me, a me I wasn’t aware of until the me that felt like Me was rendered incapable. Until I was able to see that the me that feels like Me is not the only me in charge of my body, my brain, my mind.
The me that feels like Me is not indisputable, not incontrovertible.
The me that feels like Me is not a fact: it is an opinion.
And if I am just an opinion my brain has formed about itself, then—even if I try to stick to the most basic facts—even the simplest story I tell is called into question due to the mystery of who, exactly, is telling it.
I am an unreliable narrator, but I’m becoming better at making sense of my story. The farther away from it I move in time, the more I’m able to understand it, place it in a context.
There are things I can’t reconcile, and things I can’t explain. But slowly I am coming to accept that this may be what this story is about—acknowledging the senselessness of things, accepting that things are senseless. Understanding that I can try to read my life like literature, perpetually on the lookout for foreshadowing and meaning and narrative arc; but that that won’t save me or protect me from the facts, which exist even without my interpretation.
There was no warning I left unheeded, no heavy-handed metaphor I missed before the day that I coughed and tore a place inside me. I simply coughed.
I am learning how to accept this, how to explain it to myself and others. I go on dates, now, and have to account for the facts of my life, the strangeness of dating after having been married for 20 years, after a year in bed with a bizarre illness, after months of tentative recovery. It is a good litmus test: even just reciting the basic facts, without making it into a story, is enough to scare those people off who I am better off without. And the more I participate in my old life, which is simultaneously my new life—being upright, being outside, walking, remembering things, talking to people, running errands, parenting—the more I am able to consolidate the stories of the me that was Me before my leak, and the me that was Me during my leak year. This is the new Year Zero Me, slowly recovering into one single me, one single story.
I am torn between feeling betrayed by the uselessness of story and feeling grounded in the telling of it. I watch Emi move through her grief, finding her way through panic, dissociation, and anger to a place on the other side she could hardly have imagined, and I’m relieved to recognize the story arc. I watch Nate battle with anxiety, using late nights of video games and YouTube and internet to distract from his own internal windswept landscape of hypervigilance, eternally on the lookout for the tragedy that’s already occurred, and I understand it as a kind of rite of passage.
Their story is a familiar one: the experience of a profound sense of loss as they enter the most tangled part of young adulthood and see their parents, for the first time, as flawed, separate people; the complicated, painful process of maturity as they become ever more increasingly the selves they have always been.
And mine, too, is familiar, though it’s complicated in the telling: the story of illness and recovery, of living with pain, of things ending and things beginning, of learning to ask for help and also how to accept it, of finding my way back to the me that has always been Me, even though I understand now that that Me has also always been a story I told myself, a creation of my mind to make sense of my brain.
I am an unreliable narrator, most of all because I don’t know how any of these stories end yet. I am like a parent telling a bedtime story in the dark, making it up as I go, hoping the sleeping selves listening are lulled by it, far too tired to be alert for discrepancies, errors, failures of the plot. But I am becoming patient with this unreliability, which I realize now has always been there, whether or not I was aware of it before. I am becoming patient with the way life defies narrative. I am becoming patient with the fact that, unreliable or not, I might not actually be the narrator at all; that I may not be the one telling the story; that the story might be telling me.
41
January 15, 2017
A year ago today, I was in a recovery room at Duke University Hospital, still drunk on a blissful mixture of Versed and fentanyl. The doctor who had just performed the procedure to seal the tear in my dura that had been causing cerebrospinal fluid to leak out of my head since March of 2015 stood over me and told me everything had gone well. “What now?” I’d asked, and Dr. Kranz had been honest. He’d told me we’d have to wait and see, that it wasn’t unusual for patients to return two, three, even
