That night, in the hotel, my sister brings in food, and a friend I’ve only known from the internet comes to meet me in person, and, buoyed by a floaty brain from the bolus of fluid injected earlier, which has not yet had a chance to fully seep out, I sit up while I eat dinner, for the first time in months, stay up talking and making jokes, for the first time in months, sit up on the couch instead of lying down and follow the thread of a conversation for more than an hour, for the first time in months. The fog lifts, briefly, and, for the first time in months, I feel almost normal.
The next morning, before returning to the hospital for the procedure that will hopefully fix me, I get a phone call from the therapist’s office where I’ve been trying to set up an appointment for Emi, so she can talk with someone besides me about the stress and dissociation of dealing with a sick mom, divorcing parents. The normalcy I felt the night before has drained away, and my brain is back to its fuzzy functionality. “What is your daughter’s birth date?” the receptionist asks me, and I pause for an embarrassingly long time. You know this, I tell myself, and I know that this is true—I can feel when Emi’s birthday is, I can feel the feeling of what the words are that might contain that information, I have a sense of what the numbers would feel like to say out loud. It is there, somewhere, in my brain. But I can’t remember. I can’t say it out loud. It stays formless inside me, a mere suspicion, a hunch, while the receptionist repeats “Ma’am?” and I say, “Sorry, one moment,” stalling for time. I’m just about to ask my sister if she might remember when Emi’s birthday is, when I hear myself beginning to say “June?” And then I remember: “June 3, 1999, six-three-nine-nine.” I say it both ways, words and numbers, and somehow that unlocks the door to the other fact-based answers I must give—our address, a date and time that works for me to bring her in—and I am able to finish the phone call successfully. I remember to say goodbye. I remember to tap the red phone icon to hang up. After today, I think, as I get ready to go to the hospital, a conversation like this might be a thing of the past. After today, I might be better.
But at the hospital, my hopes are dashed when Dr. Kranz returns, pulling up a chair beside the recliner where I, too, have returned, his baby-face forehead now creased with concern, and tells me he was not able to visualize the leak. I am in the 50 percent or so of people for whom the leak site is not observed on CT myelogram. It is all I can do to keep myself from crying. This is my worst-case scenario: that they are unable to find the leak and thus unable to treat me. That I will be like this forever.
“Are there stronger tests, finer tests?” I ask, and he says, “Yes, we could do an MRI myelogram—although of those patients who go on to have that done, only 20 percent have a positive result or identifiable leak.” So that’s it, I think, it’s over, and I struggle to keep my face calm, my voice even, as I ask, “So now what?”
“Now,” he says, surprising me, “we treat you.”
Even though they can’t see the exact location of the leak, he tells me that in his experience, most patients with symptoms like mine are leaking from somewhere in their thoracic spine, the upper and middle back area that extends from the base of the neck to just a few inches below the shoulder blades. So what they’ll do today is patch me there—inject my own blood into the epidural space along my spine between my shoulder blades, and also several other places along my spine, so as to seal the dura, creating a kind of Band-Aid of blood to clot over any torn places. “If we knew exactly where the leak was, we’d do a more targeted patch, with a mixture of blood and fibrin—an insoluble protein that impedes blood flow—right in the leak spot. But since we don’t, we can patch more generally in that area, just using blood.”
“So you can treat me,” I say, and he nods. “Even though you can’t find the leak.”
He nods again. “I don’t have to see the leak to know that you’re leaking.”
Again I am in the procedure room, again with the friendly nurses making jokes over my head. This time I am instructed to lie on my stomach, a blood pressure cuff on one arm, an IV in the other, so they’ll be able to access my IV for blood as the doctor needs it to inject into my back. This time I get a mixture of fentanyl and Versed (midazolam), and it feels like nothing. I don’t think it’s working at all, until I find myself struggling to get comfortable, facedown on the table, and hear myself saying too loudly that I wished there were some kind of hole for my face. “Does anyone know, is there, like, some kind of face-hole, does anyone have a hole I could put my face in?” I ask, and everyone laughs, and then to my amazement someone does indeed produce a hole I could put my face in: some kind of massage-table contraption thing one of the comedian nurses brings over and helps me settle my face into. I can’t
