“Do me a favor and don’t wear any eye makeup when you come in,” I recall the receptionist having requested over the phone. “It messes with the goggles.”
Instead of saying, “Goggles?” as I was thinking, I said, “Eye makeup?”
“Mascara, eye shadow, eyeliner,” the receptionist said.
I’d been to this functional neurology center in a suburb of Portland, Oregon, several times since 2007, when I was diagnosed with having a puddle of cerebral-spinal fluid—the water that your brain floats in—about the size of a lemon where my right parietal lobe would be. The parietal lobe is the part of the brain responsible for judging time, space, distance, and the location of the body, among other tasks. I was diagnosed only a couple of months before leaving for grad school in Southern California; I had been hoping to get to the bottom of why learning to drive had proven impossible for me. Since then, I’d moved to Santa Barbara and my visits to Northwest Functional, back in Oregon, had become more sporadic.
When given shocking medical news, people expect a plan for healing to follow. In my case, because I’ve had this condition since birth and my brain found its own methods of coping as I developed, there is no clear-cut rehabilitative path. Still, I’m interested in strengthening my brain as much as possible—even though it’s hard to quantify what “as much as possible” really means, given both how much and how little scientists now know about the brain.
When I first started seeing the neurologist shortly after my diagnosis, his main diagnostic tools were a book of portrait photos that he used to check my gaze as I followed the pictures while he moved the book around the room, and a pencil and paper. He would tape the paper to the wall and ask me to follow with my eyes the dots that he drew on the paper.
He would ask me to recite timetables or the alphabet backwards as I walked toward him. I would struggle. He would make some corrections by tugging on my hand and I’d be able to do it. In the absence of any traditional rehabilitative tools or exercises since my diagnosis, the straightforwardness of being incapable of a task and then capable of it after a few tweaks is a relief. Since those recent visits, his office has grown dramatically. He now has a couple of interns, staff who focuses solely on rehab exercises, and another doctor. (The team sees a variety of patients including those recovering from traumatic brain injuries, stroke survivors, and people born with unique brains.)
On my most recent visit, while I was home for the holidays, the doctor suggested that I come back for a week-long intensive in the hopes of making more lasting changes in my brain’s pathways. In order to compensate for how my brain re-organized itself in the wake of the atrophy that I was born with, the plan was to exercise my brain—“waking up” the slower parts of it. I sort of think of it as the neural version of decluttering my desktop; my brain gets easily overwhelmed by an average amount of stimulation (crowds of people, traffic heading toward me), which slows me down. These exercises may help declutter my overworked brain, so that the whole system functions more smoothly. For me, that would mean managing time and getting around without a map more efficiently.
That said, he had mentioned nothing about goggles.
* * *
I arrived on the first day of my week-long intensive naked-faced and nervously curious. As foretold, the rehab specialist strapped a pair of goggles, attached by wires to a laptop, to my head.
“This is like those laser pointers that people use to play with their cats, but just follow it with your eyes,” the rehab specialist explained.
The laptop recorded and graphed my eye movements as I followed a laser-image dot that darted around the wall. These quick eye movements are called saccades, which is French for “jerk” or “twitch.” The data collected about what my brain tells my eyes about how to navigate is especially important given that the right parietal lobe, where my difficulties stem from, plays a major role in how the brain orients the body in space. The test showed that, depending on the location of the dot, I sometimes followed it more slowly than usual or just totally spaced out without realizing it.
After the goggles, the rehab specialist brought out a metal device that looked like a stubby metal tuning fork. The electronic stimulation from the fork would stimulate part of my brain, to juice it up, to in a sense wake up the weaker parts.
“Ok, we’ll start with your tongue.”
“Yup, it’s just one of the pathways to the brain,” she said, matter-of-factly.
Obediently, I stuck out my tongue to receive the stimulation, which felt like a steady but light pulsating buzz, not painful at all. She then gently smeared ultrasound gel on the sides of my face and my chin pressed the fork lightly against each spot. I sat in the chair as she did this and pretended that it was totally normal, like I was getting a haircut.
Doctors have experimented with all kinds of electric stimulations to improve brain function. One 2010 study showed that stimulating a person’s tongue over the course of a week helped patients who previously had trouble balancing. (Brain imaging demonstrated that neurological activity had in fact changed before and after the treatment.) I can't speak to why this might work beyond my understanding that the brain is electric as well as chemical. But if this electricity came in cream or pill form, I would probably ingest it.
Next I was passed on to a young doctor who had been an intern last time I was in the office. He showed me a laminated piece of paper taped to the wall with three big black dots spread diagonally across it. I followed his finger as it grazed the dots. He watched for any jumps in my eyes.
Pretty consistently, I spaced out on the top dot. Then, he spun me very slowly in an office chair as I held an iPad with cartoon pictures of animal heads floating from the bottom to the top of the screen. I was to count the heads, which gave my brain something else to do as I was spinning, testing my ability to do a task while moving in space. Not surprisingly, this was the toughest test for me.
“I’m feeling pretty dizzy,” I reported.
“Ok, thanks for letting me know,” he said. “That’s important. If you feel like you’re going to puke or like, ‘I’m going to punch you,’ let me know.”
“I’m pushing you. My job is to push your brain, but not push it too far. It can bring out an emotional reaction.”
“Ok, I’ll let you know if I want to puke or punch you.”
After each exercise, I stood on a foam mat and looked forward, then down, then up, to check my balance. Almost every time that I looked up to the ceiling as I stood on the mat, I quickly started wobbling and almost fell down. I felt like that breed of pygmy goat who I’d seen video of online, who falls down and faints when startled. I met with a friend in the city for lunch and tried to explain to her what I was doing in Portland for the week. “So, sometimes he tells me to look at his nose or follow his finger while he looks at my eyes, and I have to walk up and down the hall a lot trying to say the alphabet backwards …”
“So basically it sounds like you’re submitting yourself to a drunk test repeatedly from nine to five for a week.”
“Kind of, yeah. But with more chair spinning. And electronic stimulation.”
At the end of the day I’d be exhausted and useless and a little wary about returning. But once I got to the waiting room, I found that I was looking forward to the session. For that week, my life was the least complicated it’s ever been. I was doing nothing but staring at dots and lasers, spinning in chairs, forced by each task to remain in the present. By the third day, I’d established a sort of patter with the staff, trying to make small talk while dabbing at my routine ultrasound-gel facial with a Kleenex after each electronic-stimulation session—of which there were several a day. Then the dots, walking up and down the hall, the chair spinning, checking my balance on the foam mat after each exercise, and the goggles on alternating days.
Toward the end of the third day I hit a slump. I felt listless and a little snarky, though I perked up when I noticed that spinning in the chair didn’t make me as dizzy at it used to.
“So, what does it mean for my daily life that I’m getting better at spinning in a chair?” I asked, a little more pointedly than I had intended.
“I’m not trying to get you better at spinning in the chair,” the doctor explained. “This fires the neural pathway so that you’re better at knowing where your body is in space.”
On one of my breaks between tests I passed the main doctor in the hall.
“Hey, let me grab you for a sec,” he said.
He pulled me into an empty exam room and asks me to stand in front of him.
“Close your eyes. I’m going to snap my fingers and I want you to point to where you think the sound is coming from.”
I closed my eyes, heard his snap, and pointed.
“Ok, now open your eyes.”
My finger was way off-base, many inches away from where he had frozen his hand post-snap. We did several rounds of this, on both the left and right side. Each time I was terrible at it.
“Ok, now I’m going to shine a strobe for a sec.”
He took a tiny flashlight out of his pocket and flashed it on the side of my face. “Ok. Now again.”
This time, I hit his hand almost every time with my eyes closed.
I was flabbergasted.
He brought the younger doctor in to show him what we were up to. “Add that to her regimen.”
I slept really well that night, and on the fourth day I had more energy than I’d had in quite a while. I felt strangely “switched on.” The exercises had gone from intriguing to routine to boring, and I began trying to chat with the doctor to pass the time. Between spins in the chair or counting dots, we talked about everything from the effect of social media on the brain to the secret to healthy skin (vitamin C, he said). I noticed every time he asked me to complete an exam, he ended the request with “for me.” As in, “Ok now, cross your legs in the chair for me.” “Stand on the mat for me.” “Focus on this dot for me.” I wondered if this was taught in medical school as a way to soften the authoritarian tone of a command, perhaps to bridge the gap between doctor and patient. I didn’t ask him. We had another day to go and I didn’t want to start making him feel self-conscious about it. My balance on the foam mat had improved. I wasn’t falling over any more when I looked up. We’d added the snapping to our regimen.
By the last day, I still felt surprisingly energetic, given that I’d gone through several days of intense cognitive training. We did the goggles for the final time, followed by the usual sets of electronic stimulation, following dots with my eyes, and chair spinning.
It’s hard for me to say for sure if we made any permanent changes in my brain’s neural pathways. The efficacy of this kind of alternative treatment is hard, if not impossible, to quantify. I can say that I left with greater sense of both my potential and the brain’s capacity for healing. In the line for security on my flight home to Santa Barbara, I approached the X-ray machine. “Okay, miss, step up for me,” the uniformed TSA official commanded. I walked forward and through the metal detector, on my way home.