By early June, it is also nearly six months since my procedure at Duke. The six-month mark has been a milestone looming so far in the future it seemed a myth. When I was leaking, time wasn’t a concept I could fully participate in. I couldn’t think in hours or days, couldn’t make plans for the next week or month; I could only exist in moments, one minute to the next, everything disconnected, discrete. In the beginning days and weeks after being patched, it was still difficult to think ahead, to project myself to a point in time beyond where I was at whatever moment I existed in at the time, because healing was still so new, so fragile, so time-dependent. When I began to feel better, when I began to improve, I began to have a better sense of what I was capable of—I could plan to take a shower knowing I would need a nap afterward; I could plan to be upright, walking around for an hour, knowing I would need to spend a corresponding hour lying down, recovering. And eventually, I could make plans a day in advance, a week in advance. It no longer seemed like an impossibility to think about the future and rely on the fact that I’d probably be able to be a part of it. I could make a plan for a faraway time and assume I might be okay by then, maybe even better than I was when I made the plan in the first place.
But it feels like tempting fate to think about meeting that six-month mark, the unit of time Dr. Kranz said it would take for me to know whether or not I was past the most tentative, risky part of healing from my patch. If I can make it to the six-month mark without the leak recurring, there’s a very good chance it might not recur at all. I’ll still have to hold my breath to make it to the one-year mark, when the chance of my spinal CSF leak re-leaking would be even smaller; but making it to six months without the leak coming back would be a very encouraging indication that my prognosis is good.
Still, it feels risky to hope.
“‘Hope’ is the thing with feathers,” begins one of my favorite Emily Dickinson poems, and right now I understand it, the small bird you hold in your hand, the lightness of it, the fragility, its fleeting nature, the possibility that, at any moment, it could fly away.
In the leaker group, I read posts from people who were patched months before me who never made it to their six-month mark, who began leaking again days or weeks after returning home. I read posts from people who were patched after me who are already leaking again. Occasionally there are encouraging posts from those former leakers who are “sealed and healed,” in the terminology of the support group, and back to living full lives comparable to how they lived before their leaks began; but most of the posts are about grappling with pain, with the uncertainty of whether or not a leak has truly been fixed, with the disappointment and grief of having a blood patch fail, of having a surgery fail, of having everything fail.
My best friend from the leaker group, Nina, the funny, upbeat former lawyer who went to Duke two weeks after I did, has been my patch partner, my partner in recovery. We check in with each other daily, comparing symptoms, commiserating with each other about the awfulness of rebound high-pressure symptoms, reassuring each other when those symptoms subside and seem to be replaced by the old familiar leak symptoms. We make jokes about the medical realities of our lives now, the torture of sitting, the annoying, unyielding slope of the wedge pillow we hope to one day never again have to use. We dream about the day we are both free of headaches, rebound or otherwise, when we can have our lives back. “But this is our life right now,” she reminds me. “We’re not waiting, we’re in Year Zero, the year we start over.”
But as we get closer to that six-month mark, our paths begin to diverge. I’m experiencing far more high-pressure days than leak-feeling days, with the majority of my symptoms being due to the effects of a higher intracranial pressure than I’m used to; and she’s experiencing more leak-symptom days. No longer is she needing to sleep on a wedge pillow to prop her head up, and no longer do caffeine and salt make her headache worse. Lying totally flat now is what makes her head feel better, and caffeine and salt either do nothing, or ameliorate her pain slightly. She’s back to having only minutes of upright time before the headache comes on, looming into sensation at the back of her head. “I’m leaking again,” she tells me, “I know it”; but I don’t want to believe it. She has been suffering with her spinal CSF leak for so long, far longer than I suffered with mine. She’s been leaking for nearly a decade, she’s had multiple surgeries. She deserves to recover more than I do.
“Don’t be ridiculous,” she says when I tell her this, but it doesn’t
