In about a week my brother David will be taken to a hospital downtown Chicago, where two highly trained and well respected doctors will wean him from his medication and induce a seizure upon him in order to better understand their cause and effect on his brain.
Here is the timeline. The First One was in 1998. It was furious and unexpected. They continued in equal severity—at least half an hour in duration, blue palms, blank eyes, and flailing limbs—for six years, just once every two years. In 2004 he had to be airlifted to Vanderbilt hospital after seizing while we were vacationing on a lake in backwoods Kentucky. In 2014 my mom and I had to pin him to his mattress while administering Versed—a high-powered amnesia-inducing sedative—up his nostrils to stop his flailing neck from hurling his head against a bedpost. Since then his seizures have lessened in severity but increased in frequency. Sometimes his lip just quivers for about 20 seconds. Sometimes this happens three times a week. Since 1998, my dad has logged each one in a notebook. He’s filled 18 pages.
At a certain point this becomes more than a parent can bear. When my dad calls and says that David had another “mini”—this is what we call the short ones—while watching that night’s replay of Star Trek Next Generation, I no longer know what to say.
And so we’re taking him into the hospital, where presumably he will be brought into a room, made comfortable, and then will wait until the evil that has plagued him for the past decade is invited to return.
Imagine fifty calendars, one for each of the past fifty years, hurled off the roof of the John Hancock Center. Imagine standing at the window on the forty-second floor watching them hurtle toward the ground, their pages fluttering end over end.
Imagine that on three of those fifty calendars a date is circled in bold red marker. Maybe it’s the date your sister graduated high school, the last time you changed the oil on your car, or the date of your grandparents’ wedding anniversary. Imagine standing on the forty-second floor, watching the calendars fall 100 stories to the ground, and having to pick out and remember those three dates. When did they happen? In which year did they take place, which month, which date?
These are questions David can manage. He sees a cloud of flying calendars and can filter dates, appointments, and anniversaries. When was Casimir Pulaski Day in 2003? What day of the week was it? Did he get school off? His memory ticks to the steady beat of precedent.
Then there are the questions he can’t manage. “How was your day?” “Who is your math teacher?” Imagine that the question “What did you eat for lunch?” triggered memories of your last 3,000 meals cycling roulette-style through your brain.
This is what life is like for David. Words, memories, and thoughts that seem so easily accessible to us are hidden to him. When we ask him to recall them, it often seems discomforting. He grunts, sighs and sometimes just inaudibly opens his mouth until we force an answer out of him or just let him retreat.
David has access to the best medicines, the best doctors and the best treatments. Still, there remains so much more to know.
Sometimes today we talk about science in noble, capital-S terms—as if our politics, religion and civics could be saved with just a little more Science. But science is really just truth observed and not yet applied.
To believe in something other than what is materially in front of you is awkward. It likely means that what you expect tomorrow is impossible today. And that whenever we get to tomorrow what we know of today will seem impossibly sad.
It means that though we believe tomorrow will be better and brighter, on the way there we may still find ourselves alone in the dark with a great evil.