Dawn. I awoke at 5, in tears that somehow would not stop. Last night Danielle put me back on my regular meds, along with something to make me sleep; and the onrush of side-effects, combined with the emotional experience of being here, under continuous monitoring of brain, heart, physical movement, speech, and sound, is unexpectedly profound. The word that comes to mind is “umbilical”. At first it is incredibly invasive to have not just your physical person but also your inner functions continuously under view, like the total-surveillance “panopticon” device that Michel Foucault conjured up in “Discipline and Punish”. But after a while, you just give into the fact that you have literally no privacy at all, either externally or internally. And then the surveillance becomes almost motherly, with all the nursing care and worry over your every movement and need. The bed breathes with you like some kind of womb, and you have to contend constantly with the cord connecting you to the electronic mother behind the wall. If I stayed here much longer, I would become an overgrown fetus!
10 a.m. This morning, when it came time to disconnect, after my wave of sadness and gratitude for all of the tender care I have received, I itched with impatience to get the electrodes off, unhook the EKG, comb the glue out of my hair, and remove the IV shunt (this last they won’t do until I am finally discharged). It was not just to get the friggin’ wires off my body. It was also to reclaim my individual self, to climb back to adulthood. I’m still in pyjamas and slippers, waiting for them to wheel my off to my final examination: a repetition of the MRI I had last summer. It will determine whether my epilepsy is “clean” or “lesional”, a further narrowing of categories into which to corral the emus of my brain. Smaller boxes, clearer choices. But given my weariness, I am not thinking about further diagnosis — only the MRI is the last thing standing between me and sunlight.
5:30 p.m. The wait for the MRI, the scan itself, and the further wait for Danielle to explain the results, takes the remainder of the day. When I am in trial, I often oblige witnesses to wait outside the courtroom for hours on end, sitting on a hard wooden bench in a corridor, because the unpredictability of the process makes it impossible to know exactly, or even approximately, when they will be called to testify. So I have no issue with the fact that mine is the least valuable time in the geometry of the day. The hospital staff and MRI team are dealing with patients sicker, and priorities more urgent, than I. So I doze, pack, read, chat with the nurses, do laps around the floor in my re-assumed street clothes (Lili, my Ukrainian day nurse, exclaims “You don’t look like a patient anymore!”) and practice having no expectations. After yesterday’s positive result, I consider the MRI almost a footnote, albeit a long, noisy one.
Danielle arrives at the end of the day, cheerful as usual. “Do you want to see the scans? They took a lot.” She knows I’ve been reading on medical sites which are mostly over my head, so she takes me on a show-and-tell tour of the different views of my brain. There are multicolored slides that morph as she slides the mouse, and others that look like static Rorschach splatters. Then she stops on a greyscale view and announces, “So here’s the one thing. This is the hippocampus. Do you see the two sides?”
“Yeah.”
“Well, it’s not at all clear, and I just got off the phone with the radiologist. I guess I’ve developed a reputation for being persistent. But there may be a difference between the left and the right side. Do you see — the left may be just a little bit smaller?”
I did. “So what would that mean?”
“Well, again, it’s a maybe. The radiologist didn’t see it at all the first time he looked, so then when I pressed him, he looked again and thought it’s possible. We’re going to review it in a couple of weeks at our next case conference, to see what other people think. But if it is – then — hippocampal sclerosis.”
Yesterday, when we were talking about my seizures and where the focal point was, I had mentioned reading an article on hippocampal sclerosis, a progressive loss of cells in the hippocampus, the site of long-term memory storage in the brain. In trying to prove to Danielle that I was not a reflexive gloom-and-doomer, I had said, “I read that article, and I decided, that’s probably not me.” At the time, she agreed. Now, she looked at me with a new seriousness, lips pursed. I asked, “So, do the treatment options change?”
She nodded and thought for a moment. “Well if it’s not hippocampal sclerosis, then no. But if it is, then we probably need to look at other options. We’ll see in a couple of weeks. Let’s not get ahead of ourselves.”
“Absolutely. I won’t go re-reading that article.” Yeah, right.