The Ghost in My Brain (27 page)

Martha listened carefully to what I was saying, and wrote it down. I went on: “Second, I am less responsive to appropriate stress which is, correctly, prompting me to get some job done—I just don't care as much and am more accepting of possible negative consequences.”

Martha, who seemed to have heard this before from other
patients, asked, “Is it like this: People are coming over, and you get your whole house in order, except that you don't get the front hall cleaned? You just don't quite get to everything, but you don't worry about it and enjoy your guests anyway?”

“Yes!” I said. “That's right.”

Then I extended the example. “Actually, it's more like the
first
time they come over the front hall isn't clean, and that's not so great. But my head is less cluttered with things I'm worried about. I have a little bit more time and energy each day, and, as a consequence, over time, I have more time to
keep
my house clean. In a few months, I am not only not stressed about every last thing, but my house is also already clean when guests come over. I can't count on myself to achieve every last goal anymore, but in the end I seem to be coming out ahead.”

Martha continued to write everything down. It was all data to Zelinsky, and also to her then-associate, Lisa Kowar, O.D. How gratifying it was to have people note the actual details of my experience before deciding how to proceed!

Martha then completed my testing with the Padula Visual Midline Shift test, the H-pursuit test, the Visual Localization Test, and so on.

From 11:00
A.M
. until noon I saw the wonderful Dr. Kowar, who carefully reviewed Martha's notes and then performed her own extensive testing with the phoropter, with single-eye occlusions, with eye charts, and so on. She focused extensively on my binocular vision, and on fixation disparity. We tried many different lenses. She wrote up her results and passed these on to Zelinsky.

From noon until 12:45
P.M
. I met with Zelinsky in her examination room.

In looking over the tests that Martha had performed, and the notes she had taken, Zelinsky said, “You're doing very well.
Your brain has changed. It's adjusting.” She referred to my feelings of contentment and peace. “However, you're no longer performing optimally on the Z-Bell Test, or on the Von Graefe Phoria Test.”

She reviewed Dr. Kowar's notes, and performed a Z-Bell™ Test with the lenses that Dr. Kowar recommended. She said, “Dr. Kowar got this just right. She's right on.”

But still she wasn't satisfied. She tried different lenses and repeated the Z-Bell™ Test, and one of the fixation disparity tests. Then she and Dr. Kowar started a long conversation that lasted, off and on, for the next hour. The issue was to make a decision about how much stress to put me under in making further changes. They could make me more comfortable with the prescription, but then would possibly lose an opportunity to push me farther along the path they wanted my plastic brain to travel.

Dr. Kowar decided to retest me with a portable handheld lens apparatus. It was less convenient than the phoropter, but in my case important, because it removed some of the phoropter's blocking of peripheral, nonvisual retinal signals from the testing equation. So I spent another half hour with her, from 1:45 until 2:15
P.M
.

Our dialogue is revealing of the detailed work that went into determining the final prescription. This may sound like something out of a séance, but in fact, it shows the extreme sensitivity I had developed to my nonvisual retinal processing (possibly enhanced by my years of “moving energy around” with my Tai Chi practice?), and also illustrates Dr. Kowar's long experience in teasing out necessary information from her patients.

Dr. Kowar put together the handheld versions of the recommended lenses, and then ran me through the Z-Bell™ Test. “Ah-HAH!” she said triumphantly. “I THOUGHT so!” With
the handhelds I now measured incorrectly on both sides. She made slight adjustments, and asked me, “How's that?”

Me: “Okay, I guess. My hearing/symbol space is tilted diagonally up on the right side, and definitely emphasizes the right side over the left. But it's all right.”

Kowar (laughing): “Well, we don't want you to be lopsided . . .”

She tried a different configuration. “Now?”

Me: “The diagonal has flattened out a little, closer now to being horizontal.”

Kowar (after more changes): “How about now?”

Me: “That opens everything up on the left side. A little narrower cognitive space on the right side. I can't think quite as well over there now.”

Kowar: “How is the diagonal? Are you still tipped?”

Me: “No, that seems to have leveled out. I'm very comfortable.”

Kowar tried the Z-Bells again, checking. I nailed them right on center each time, but even so, she tried a slightly different lens on the left side again. “How about now?”

Me: “It's okay, but I'm not quite comfortable.”

Kowar: “Oh. How?”

Me: “Well, it's a little hard to describe, but it's as though I'm nervous, or unsettled.”

. . . and so on for the next half hour.

Dr. Kowar could have gotten all of the same information by taking measurements on my response lag to near and far focus, looking at my altered fixation disparity, and so on, in addition to using the Z-Bell™ Test, as we tried different lenses. But, because of my sensitivity, the self-reporting dialogue was more efficient.

To get a feel for the “symbolic working space” we discussed, try the following: Close your eyes and picture, up close, the detailed process of tying the bowknot in a pair of lace-up shoes. As you tie it—in your mind's eye—describe the scene out loud. (This places a verbal-translation load on your brain, in addition to the visualization load.) Push yourself to actually follow all of the bends and twists in each half of the lace. Now repeat the exercise, all the way through, in eight different spots—upper left three feet away, middle far right one foot away, and so on. Can you see the process clearly in each location? Are you comfortable in each part of your symbolic visual field? Most of us will have preferred work areas in the space around us, and some will have zones that are altogether “dead.”

Drs. Kowar and Zelinsky talked over Dr. Kowar's last round of tests. With the lenses they settled on, my visual “working space” was very clear in all quadrants, and just shy of the full 180 degrees wide, stretching from perpendicular outward near my left temple to the perpendicular near my right temple. The new space was also still tilted slightly up to the right, and down to the left. I was, as Dr. Kowar had joked, “slightly lopsided.” Neither Zelinsky nor Kowar had been happy with the tilting, but this was the only prescription that gave me the wide perspective, so we decided to live with it. Importantly, Zelinsky wanted to alter the way my visual target and visual background were balanced. She decided to push me to navigate and deal with
space better by backing away from clarity in the prescription—in particular in my left eye (where I had the astigmatism)—and she made some other, minor changes as well. I believe that some aspect of this backing away from clarity in the center-focus prescription contributed to the sense of “mental fuzziness” I later experienced with these glasses.

This working space engendered by the Phase IV glasses was a marked change from my Phase III glasses, which, while less focused than my Phase II glasses, still clearly emphasized the right-hand side of my visual plane. With the new prescription it was a pleasure to get back the full use of the creative, left-hand side of my symbolic, spatial sense as well.

October 22nd, 2009:
I got my Phase IV glasses today. They are immediately comfortable and do not have the challenging feel of the Phase III glasses.

February 5th, 2011
: [Sixteen months later] These glasses continue to be very down-to-earth. I feel a peace with them that is from being
in
the world, rather than a peace engendered by escaping from it. I am also slightly fuzzy, and a little dull.

June 3rd, 2011
: The Phase IV glasses have always been comfortable enough, but over the course of twenty months I have noticed that my thinking has been—or has grown—“fuzzy,” as though I were getting old. It is always five o'clock on a hot day in August, and I'm looking out from a room with dirty windows. I have also noticed that the
area on my right-hand side is particularly “fuzzy” in an exteroceptive way, and that my hearing in the same quadrant is diminished and not sharply defined. I've also lost my “killer instinct” for taking on, and completing jobs.

On June 20th, 2011, I returned to Zelinsky to be assessed for my Phase V glasses. Things were going well, but I complained to her of my ongoing concern that I was “mentally fuzzy,” in particular in the right side of my vision. I could not “think” in that part of my space very well, could not form mental symbols well in the area about forty-five degrees to my right and front, even though that part of my world was still being emphasized.

On most of the tests I was close to normal. Interestingly, my right eye no longer needed as strong a prescription to see clearly. (That is, my actual eyesight had improved.)

Consistent with the intuition I had expressed in my diary, Zelinsky changed the focusing balance between my eyes by decreasing the prescription strength in my right eye, and increasing it in my left eye, along with a change in the axis value. My mental fuzziness immediately cleared up, and the right-hand side of my world became clearer and more concrete. This is an interesting result, because while my right-side
vision
got less clear, I was
seeing
better, mentally, on that side, presumably because I was better emphasizing the
context
in which my target vision was unfolding.

On June 9th, 2012, a year later, I returned for another checkup, and to see about getting my Phase VI glasses. My chief complaint was that although the right-hand side of my thinking space was clear with the Phase V glasses, it was still not “vibrant.” It was not
alive
in the way I would like it to be for solving
hard academic problems, and, more generally, for experiencing enthusiasm in life, and for finding humor, and novelty, in the world. This may sound like a pretty esoteric complaint, but by that point I had come to know my cognitive space quite well.

Zelinsky said, “Tell me a little bit more about what you are after.”

I said, “I'm productive at work. I feel peaceful. I can reason fine in both hemispheres. I'm not at all fuzzy the way I was before. Nonetheless, there is a sixty-degree pie slice
here
[I held up my hands to the right side of my head, demonstrating], from the perpendicular leaving my right temple and extending forward, that is not too
lively
compared to the rest of the space forward of it, and to the left.”

Zelinsky asked, “Do you feel like you're missing a
vibrancy
or
creativity
in that pie slice? Do you particularly notice it when you're working on complex problems?”

“Yes!” I said. She was putting the right words in my mouth to describe it.

Zelinsky ran through all of her standard vision tests on the phoropter, and then finished tweaking the prescription she already had in mind with the Z-Bell™ Test. She focused only on the high bell in my upper
left
quadrant. She had a plan and knew what she was looking for. In a cursory way, she checked the upper right quadrant with the high bell, but this was right on—as she had expected—and she wasn't further interested in it.
*

She then ran me through the Visual Localization Test (“Look at the eraser on the end of this pencil. Close your eyes.
Reach out and touch the eraser”) quite a few times with slightly different prescriptions before making her final decision.

Zelinsky found that by inserting small vertical directive yoked prisms (thick part on the bottom) into the lenses, and making some other small changes, she was able to perfectly increase my right-side awareness. The prescription also tilted my posture slightly backward (posture angle affects the central nervous system), and thus made me more comfortable.

When I got my Phase VI glasses back from the lab a week later, they immediately added back that spark I had been lacking with the Phase V glasses. This was the final tweak. It is these same glasses that I continue to wear today.

Donalee Markus's plan and Deborah Zelinsky's plan for me were now both complete. I was balanced, had clear logical thinking, was able to create mental images with clarity, and could feel that coveted mental vibrancy in all areas of my thinking. I felt
normal
.

My experience at the Mind-Eye Connection was far from unique. Dr. Deborah Zelinsky cares deeply about the well-being of the people she sees. She believes that the research data she has collected, the clinical case notes she has kept, and the continually refined techniques she uses can help thousands of people to lead better, happier, more productive lives. She has worked unceasingly for years because she is passionate about the work she does with her patients, and also about the vast potential for neuro-optometric rehabilitation in general. And, too, there is the constant battle in her own schedule to make time for her research when there are people who so often desperately need her help as a clinician. Like Dr. Donalee Markus, she is one of the heroes working on the leading edge of modern brain plasticity clinical research.

Wabash Avenue

As I write these closing paragraphs, I am, except in a few small ways, free from concussion symptoms. I can focus on complex problems again without pain or nausea. I can work for long periods of time. I can multitask, within reason. I can again say prayers and meditate. My balance problems are not significant. My sense of direction has returned, and I can make decisions without difficulty. And, too, because I have addressed dispositional attention difficulties as part of my treatment, many areas of my life have even improved over how I was prior to the crash: my house, my life, and my relationships are significantly less chaotic because I
see
my choices more clearly.

As I think back to how far I've come, I recall a concussion scene from winter quarter, late at night, after teaching an evening class at DePaul.

I had been sitting in my eleventh-floor Lewis Center classroom for an hour after class, staring at the wall. Now, I had trouble getting through the doorway, and also had to hold on to the wall to make it to the elevator foyer. Taking the elevators to the first floor would leave me unable to walk, or to stand, and I felt I couldn't risk making a scene with the security guard. So I took the stairs, holding on to railings the whole way down, and guiding myself step-by-step along the wall. Several times I had to crawl, and several times I got stuck, unable to move at all.

About forty minutes later I left the building through the Jackson Street doors—headed for my office in a building on the next street. I was moving in slow motion, holding on to the building's outer wall for balance.

The tracks for the Chicago El train ran along Wabash Avenue, and I had to pass under them when I crossed Wabash on the way back to my office. Several lines ran on those tracks, and trains also came around the turn at Van Buren to the south, so it was not always possible to know exactly when the trains were coming, or when a hidden train, stopped just a block north at the Adams station, might start up and head south over the Jackson intersection.

Because the tracks were perched on steel pillars (that is, you could look up and see the sky through the tracks), the sound of the trains could be very loud. The wheels sometimes emitted a loud squeal as the trains made their way down the tracks or came around the bend. If this caught me off guard, I would clap my hands over my ears and double over—the same as I did with Ramon's disc brakes. Sometimes I would fall to the ground holding my head. As long as I was on the sidewalk this was merely embarrassing, but otherwise not so much trouble. On this evening, however, I miscalculated, and was under
the tracks, in the middle of Wabash Avenue, when a squealing train came by. I felt an explosion go off in my head as I fell to the salty, wet pavement, and curled up on the street in fetal position, covering my ears.

The train passed, but my mind and body were moving in slow motion. Before I could get up, the traffic light changed. Cars traveling down the one-way slalom on Wabash—avoiding the steel support pillars for the El—started swerving past me on both sides, in the dark, their horns blaring only a few feet away from my head. Each time they did so, with their headlights also blinding me as they passed, another cognitive explosion went off, flooding me with a brain-piercing stream of unfiltered sensory information. Other cars came around the corner, making the turn south from Jackson. Startled, their drivers too honked impatiently as they rushed past.

It was a bizarre fantasy sequence out of a Hollywood nightmare scene—except that it was real.

But this had happened to me before. I thought that at some point the traffic would clear and I would make it to the far sidewalk. I would prop myself up next to the streetlight, hope that no one I knew was around at that late hour, and then go about the rest of my much-altered life.

Yet even then, amid the chaos of my life—but also within the larger mystery of compassion that can ever reach back and find us—the Ghost was there perched in the distance, still tethered to me by the merest thread of possibility, waiting for the miracle.

 • • • 

I dedicate this book to you, Dr. Donalee Markus, and to you, Dr. Deborah Zelinsky. Thank you for coming to get
us.