No one. No one would anticipate that. I could not have anticipated that.
I didn’t have to keep holding myself accountable for failing to prepare for a thing that I didn’t even know could happen.
There’s nothing you could have done, I told myself. Nothing.
And even though it wasn’t exactly a fairy-tale ending to the story I’d been trying to tell myself for so many months, for the first time in a long time, I slept all the way through till morning.
PART SIX
Year Zero
“I have tried to explain over and over again how mind changes brain structure and function, but nobody alive has yet properly defined mind and no one has explained properly how so-called ethereal thought can change so-called material structure. The whole subject is filled with wonder.”
—Dr. Norman Doidge, as quoted in The Guardian, February 8, 2015, “Norman Doidge: The Man Teaching Us to Change Our Minds”
34
April 2016
Words are still difficult. Reading too many in a row makes my brain hurt, exhausts me. But I’m able to tolerate it better now. I find myself slowly returning to the pleasure of reading paragraphs at a time before I must nap to recoup my ability to perceive, to read, to understand, to think in metaphor and simile, to hold concepts in my mind. Writing is harder: Sometimes I can think of a thing, even imagine how it might make sense on the page, on the computer screen, but by the time I get there, language is an impossible mystery. I cannot translate the wordless thoughts in my head into English. Even the thought of trying to explain what I am thinking becomes overwhelming, and I must rest and try again later.
I go into stores now and I remember why I’m there, but the brightness and volume still overpower me. I feel my brain reject the totality of the stimuli around me, feel the gravity of my thoughts sinking into some solid form, coalescing, cementing, becoming impossible to process. I can feel the place where my thinking is done shut itself down like a snail pulling itself back into its shell. Loud people and places assault my brain, and even on a calm day, my best cognitive self is limited in time: It exists from whenever I wake up in the morning until about three in the afternoon, when I begin to flag, when my brain surrenders to the fog, to the rebound headache pain I still grapple with. I need lots of sleep. Not as much as I did right after my procedure, when I slept twelve, fourteen hours at a time, and still napped during the day, but more sleep than I ever used to need. By three o’clock each day I feel my brain slowing and have to lie down; by five o’clock each day, I have roused myself for the process of going through the motions of preparing dinner and supervising homework, desperate for release; and by 7 P.M. I am asleep.
All of this is progress, though. I remember two weeks after the procedure, when Dr. Kranz called to check in on me and follow up, I had a cumulative daily upright time of four hours, total, and was still fluctuating between what felt like leak headache pain and what felt like high-pressure pain. He’d said that was normal, that I should gradually increase my activity level and upright time, if I was able; that I should track my progress so as to note patterns and reassure myself by being able to look at a bigger picture of overall trends instead of just the day-to-day experience, which could seem disheartening. I have done this, I have tracked my symptoms, I have quantified my days, I have tried to take the long view and be patient. Three months post-procedure, I can manage four hours of consecutive upright time and seven hours of cumulative upright time on a good day. At our most recent check-in, Dr. Kranz reassures me that time will continue to be my friend; that he is confident, from what I’ve described to him, that my symptoms will continue to improve; that he is optimistic I’ll be able to get back to normal; and that I should try to continue to take things one day at a time and focus on the progress I’ve made over the past few months.
I have hit many small milestones. Some are physical, like sitting with my children through dinner; attending parent-teacher conferences and surviving the conversation, being able to think and talk and respond without becoming overwhelmed, even though it takes me a day of rest to recover; walking the mile and back to pick up the kids from school. Some are internal, invisible victories. Remembering a PIN code for the ten seconds it takes me to view it on my phone and then enter it on my computer. Being able to read a chapter of something and remember what it was about, have it linger in my mind and make sense, resonate with some other ideas. Watching short television shows on my iPad, in bed, without becoming overwhelmed by the sheer amount of information happening at me, light and sound and smash cuts and musical cues and dialogue and expression. I feel my brain slowly waking up, like a limb that’s been asleep, prickling and heavy with the feeling of sand.
Once I’m able to read more and retain information, I find myself craving stories of explorers. I read books and listen to podcasts about adventurers, both ancient and modern, coming to grips with the limits and capability of the human brain and what is required of it to function. I learn about what happens to brains at high altitudes without oxygen; about monks who light up fMRI machines as they regulate
