In a way, this CSF leak of mine is almost research. Because here I am, outside of normal time. In the world outside my bedroom, life continues. Alarms go off in the mornings, the mail comes, dinner is made, appointments are kept. But in here, time is different. I feel closer to my main character than I ever had during the writing process as I lie in my bed, unable to think clearly or do anything that requires thinking and sitting up at the same time, like playing the piano, like writing, like parenting, like living my life.
There was a lot I’d gotten right about time, I’m discovering, the way I’d written about it for my protagonist. The way time moves when you’re very sick, the way you can make days pass simply by closing your eyes, the way you float endlessly into the future, arriving from who knows how long ago in the past. The way time bores you but, due to your sickness, you don’t mind being bored. The way you can stare at the ceiling and not be impatient with the way absolutely nothing happens. The way music moves through time and how the sound exists in one moment, and then the next, and the next, and the next, and how we’re able to fool ourselves into thinking it’s a whole thing, when really it’s just a stuttering passage, a succession of moments pretending to be seamless. Sickness is like that, making it easy to glide through time as if it’s not perpetually one moment stitched to another, landing us foggily in the midst of the next moment until we realize, Yes, of course, here I am.
What I didn’t get was the impotence. The way time makes you a prisoner. The way you must lie there knowing that mail is being delivered, that dinner needs to be made, that appointments need to be kept, and you cannot get it or make it or keep them. The way time heals you in real time, and you can’t make it go faster. The way you’re stuck, lying down, staring at the ceiling, feeling your way through the fog, waiting as one moment moves from the next to the next to the next.
Or the dependence, the way you must rely on favors from friends and strangers and the estranged. Your son’s classmate’s mother, whom you barely know, who volunteers to drive him home every day. Your daughter’s friend’s parents, who make food and bring it over in carefully labeled containers. The friend you haven’t heard from in almost a year, who offers to take the kids, who orders in dinner. Your soon-to-be-ex-in-laws, who stay for a week when your soon-to-be-ex-husband can’t, who straighten up what’s been left a mess and cook things you normally wouldn’t want to eat but devour now, lying on your side, since you can’t sit up, with gratitude.
I try playing the piano once, during those staring-at-the-ceiling, time-bound, writing-less days when I rarely get out of bed, when I have maybe five, ten minutes of being upright before the pain sets in. I need to know if I’m still me. And so I go downstairs and sit down at the piano as a kind of test. I rush through thirty seconds of a Chopin nocturne, sketching it more than playing it. It feels like I’m listening to myself underwater, moving underwater, my brain moving so slowly, slower than my fingers, but I’m able to play it, I’m still me, and then my time is up, the pain returns, the pressure in my head unbearable.
9
May 2015
A week before my forty-fourth birthday, I have the “voodoo” procedure. I google it beforehand and find a PDF brochure titled “Let’s Talk About Epidural Blood Patch Information” with a stock photo of a very sad-looking woman holding her head in her hands. As the neuro-ophthalmologist had told me, the epidural blood patch is similar to the kind of epidural administered in childbirth—only instead of a giant needle piercing your back with sweet pain relief, you’re injected with your own blood, which they extract from you at roughly the same time you’re being shishkabobbed in the back. The only plus side of this procedure versus the epidural I had during childbirth is that after this one, I do not also have to have a baby.
Arranging this is only slightly less stressful than my aborted surgical procedure. The day of the non-surgery, Gil and the ENT speak with the anesthesiology team about getting me set up at the pain center for a blood patch, and by the time we leave the hospital, everything is arranged, everything seems to be in place. Then the next day, just as I’m about to leave for my epidural blood patch appointment, I receive a call from the pain center: A team of doctors has reviewed my files and decided I don’t need the procedure after all, have a good day. Gil calls them back, using his doctor powers to argue with them, and finally the head of the pain center agrees to see me—as long as I agree to take migraine medication over the weekend to see if it helps my headache. I’m irritated by this request, as I know it will be fruitless, but I take the medication as prescribed, and, predictably, feel nothing other than fatigue and the constant pain that is my life now.
Finally arriving at the pain center, no more calls to deter us, no more hoops to jump through, the head anesthesiologist welcomes us into his office, his exam table thoughtfully arranged for me as a flat bed. I climb on and apologize for having to talk to him while lying down, but it’s all I can do. I’m weepy already from having been upright to get myself ready to come here, from walking from the car to the office building. Gil and the anesthesiologist talk above me as
