These are the practicalities of recovery:
A wedge-shaped pillow, a giant thirty-degree foam triangle, for sleeping and existing in bed.
A grabber stick, with a handle to squeeze and pinchers to grasp, so that I can pick things up without bending.
A giant cooler near my bed with bottles of water and flavored drinks, ice.
A small table within arm’s reach, for all my medicines and chargers and things I might need to get without getting up to get them.
Ice turbans, ice packs that wrap around my head and Velcro into place, encasing my skull in cold and distracting from the ever-present high-pressure headache.
Dandelion leaf tea, a leaker-group standby, recommended for post-patching rebound high pressure, to be drunk in the afternoons, when the headache is at its worst.
Eventually, when I can move around, when I can do chores: a long scooper for the litter boxes, a tall-handled dustpan for the broom.
Some of these things—the cooler, the table—are the same things I used before recovering, when I was leaking. But life post-procedure is the opposite of leak life: All the things that used to help ameliorate my pain—caffeine, salt, lying flat—now exacerbate it. Now I drink water, now I pine for Diet Coke and Doritos, now I sleep on the uncomfortable wedge pillow to alleviate pressure. Sitting—merely sitting like a human—is the worst: It stresses my dura and results in a near-instantaneous headache that can take hours to resolve.
Dr. Kranz advised me to think of this recovery time in days, not hours; in weeks, not days; to gauge my progress in months, not weeks. My brain is still foggy, squeezed by so much cerebrospinal fluid, which my body is still overproducing to compensate for the leak it doesn’t yet realize has been fixed, however temporarily. Recovering will take time.
When the kids come back home, I try to explain to them how I am in opposite-world now, how being upright is still exhausting at this point, but being flat is worse, how everything that helped with the leak hurts it now. I tell them to imagine a garden hose, like the one we have out back on the patio. “Imagine there’s a hole somewhere along the hose, and so when you turn on the water, it kind of just trickles out, because of how the water is leaking through the hole somewhere along the way. And so you turn the water up full blast, just to get something close to regular water pressure coming out of the end of the hose. Now imagine you leave the water running like that while you patch up the hole, put a piece of duct tape over it or whatever. What happens to the water coming out of the hose once you fix that hole? It shoots out at full pressure, now that there’s no hole to drain any water away. That’s what’s happening right now with my cerebrospinal fluid,” I tell them. “My brain doesn’t realize yet that the hole is patched, and it’s still sending that water out full blast, it hasn’t yet realized it can turn the faucet back to normal. That part is going to take some time, and that’s why I have a different kind of headache now.”
They help me through this, step up with the chores and cat duties, abide my funny-looking ice-pack turban, my still-foggy brain, my still-present pain. Gradually, as my spine begins to stop feeling like it’s made of solid lead, I start to increase my upright time. I walk around the house, wiping counters, doing laundry, sorting mail, making dinner. I walk outside for five minutes, ten minutes, twenty. I wear my ice pack around my head in the afternoons, I drink dandelion tea.
These are the impracticalities of recovery:
The way it happens in real time, and the way real time is slow and inexorable.
The way it happens nonlinearly, despite my moving through time on a linear trajectory.
Progress seems to erase itself even as it is happening, and I am only able to understand a sense of momentum, of change, if I look at the points I have plotted along the way as a shape that unfolds over time, without getting stuck in those individual moments that seem to be permanently folded.
The way it is impossible to gauge, no signposts, no red flags other than the new headache slowly, imperceptibly becoming the old headache, the post-patching headache becoming the leak headache.
The way it is impossible to trust. Even if the seal holds, even if my body gradually adjusts, even if my brain returns to making a normal amount of cerebrospinal fluid, and even if my dura withstands the daily ebb and flow of its production, there is no guarantee that this once-torn place will not rip through. I have hemmed a skirt, I have mended tears in the knees of pants, I have knitted up sweaters that have unraveled; I understand the fragility of the sewn-up thing, the new tentativity at the site of the repair. I know the chance exists that this mended spot will always be a tender place.
The way it is a mystery, the path back to baseline health as unfathomable and beyond my control as the journey into illness. I must wait for my choroid plexus to slow the production of fluid, I must wait as my dura knits itself back together beneath the protective layer of my own clotted blood, which over time dissolves away, leaving the torn spot bare. I must wait as my brain re-rights itself, learns what it’s like to float again, stretches the places cramped from months of pain, of sinking. All of this mystery is a grand mystery I myself cannot solve, and cannot hurry.
The way it means relearning, and the way it means forgetting.
Two weeks after my procedure, I
