The Ghost in My Brain (26 page)

Zelinsky also added components for clarifying the target both up close in the reading prescription, and also at a distance, continuing the theme of requiring me to cover a greater range of shift in my focus. Lastly, she added a component for an astigmatism in my left eye. This last sharpens the central eyesight, but distorts the peripheral eyesight. Previously, when she had measured me in her office, I had not been able to tolerate this distortion.

So I was going to be pushed again, in several ways, and I would lose the prisms, which meant that I was now going to have to find the new brain pathways on my own.
*

However, in a revealing twist of fate, a week before my Phase III glasses were shipped back from the lab, disaster struck: I lost my Phase II glasses, and made an important discovery. Despite the monumental changes the glasses were making in my life,
they did not seem to provide “residual” benefits when I wasn't wearing them.
Through a series of coincidences, I ended up, briefly, without any brain glasses at all. I regressed dramatically, and almost immediately.

May 6th, 2008:
I lost my Phase II brain glasses yesterday at 11:00 AM, at the bank, probably from leaving them on top of the car when I was
struggling to get Erin out of her car seat. I have now gone thirty-three hours without them. I no longer have access to my Phase I lenses, and my Phase III glasses will not be here until the end of the week.

I have remarkably regressed, although the “echo” of the magic glasses remains. I find myself anxious, afraid about an uncertain future. By the end of the day, and in the morning, after sleeping, I am just worn out, in the old, bad way. It is just so much work, again, to be alive.

I am starting to feel non-human again. I am sad that I can only see “locally” and have lost my global, magic, bigger-picture, overview vision. I feel disconnected from the universe and lonely.

Small tasks are harder for me to initiate (grading papers, deciding what to do today, working on Donalee's exercises). I am avoiding them because they are just “too hard.”

I cannot
hear
in the same way. I cannot make sense of the sound picture in the world around me.

I am anxious, as though my eyes, and my attention, are darting around.

I am fearfully avoiding conflicts, because of my weakened state.

I cannot get “home,” and I am not sure where I am.

May 7th:
I continue to feel the loss of my “magic glasses.”

My reading has changed back. I am hearing the words in my head as I read and this slows me down and reduces comprehension. It is less fun to read, more work.

My handwriting has regressed. It is noticeably more work to write neatly. It is as though I am in too much of a hurry, and my body is cramped up from brain to shoulder to arm to hand, making it an effort to follow through on writing out the full sweep of letters.

. . . worn out just trying to figure out what to do next . . . hard to keep doing whatever it is that I am engaged in instead of thinking about doing something else . . . have to keep a hand on the wall for balance . . . struggle to remain calm instead of anxious . . . don't look forward to tasks because they all seem to involve pain of some kind . . . my head hurts often . . . I am dreaming more about frustrating events . . . waking up early with anxiety and not going back to sleep . . .

I am inappropriately and over-vigilantly concerned about the well-being of others around me: Erin at the baby-sitter's, Qianwei in China, Paul's math, Lucy's friends, Nell's schedule, Peter all the time . . .

May 9th:
I had more anxious dreams that did not resolve: my dreams are again not productive. I've lost the NSEW grid that connects them to my life.

As a scientist, I've had to allow the unlikely, but
possible
chance that my impairment and recovery
were psychosomatic in nature, and that even when I lost my glasses I was simply psychosomatically re-creating the original symptoms of my so-called brain damage. However, given the steady re-onset of the original symptoms over the course of three days, and the complete lack of any psychological charge one way or the other, and the nature of the experience, this becomes ever more emphatically unlikely. And how likely is it that I could psychosomatically affect my dreams? I also had the evidence of the visually triggered seizures, which I could not reproduce on my own. Much more reasonable an explanation is that the light entering my retinas is no longer being rerouted, and visual signals are no longer traveling along the healthy pathways, thus re-triggering my brain dysfunction.

This also lays to rest the idea that my recovery was a coincidence, and I was going to spontaneously get better at this point in my life (eight years later!) on my own.

Besides the re-onset of all of the original symptoms, my over-arching experience is the stark realization of how extremely
difficult
just getting through the day has become. I am again exhausted by the simplest tasks. I have a sense of being “done for the day” before the first hour has passed.

May 9th, in the afternoon:
[I had been without any brain glasses for fifty-two hours at this point.] I put on my new Phase III brain glasses, and within
ten minutes have started feeling better. In an hour I am mostly back to normal. Such a short time for me to again have my vision into this alternate universe!

What a relief . . .

I feel at peace all over my body. This is not a drugged feeling, but rather just a deep quiet
normal-ness
with good feeling in it. My mind is quiet. I feel quietly happy. I am looking forward to the rest of my life.

Despite the bad start to the day I am now feeling physically energetic, like a rocket heading forward.

I came home from Zelinsky's and played Beatles songs on the piano (by ear) with great enthusiasm. I am distinctly less chaotic in my musical
thinking.
I also have a strong feeling of being so internally quiet that I can now better hear the joy actually present in the musical fabric itself.

These Phase III glasses, like the Phase II glasses, also emphasize the right part of my world, but the delineation lines of the magic world are significantly less well-defined. The Phase I glasses had a very distinct left pie slice. The Phase II glasses had a clear right-ish pie slice, but while these Phase III glasses are also to the right I cannot feel, or describe, the demarcation of the space very well. They are also broader from top to bottom—a wider (cognitive) vertical band.

Additionally, they feel
unbalanced
from one eye to the other, in an unsettling and challenging way:
Zelinsky has made it clear to me that she wants to make some very specific changes in my brain, and that my brain is now ready to have her make them. I suppose these Phase III glasses will achieve the results, but it is clear I am going to have to work at it.

As a professor, I recognized a rare research opportunity: given what had happened when I lost my glasses, I suggested to both Zelinsky and Markus that I stop wearing my glasses for a while, and have them take careful, possibly daily measurements and assess the changes that were taking place during my regression—sort of a temporary
Flowers for Algernon
case study. Each of them was independently aghast, considering me essentially out of my mind for being willing to take such a risk. They are, first and foremost, clinicians in the business of making individual people better, and their ethics forbid them from taking a chance with one of their patients in the interests of research, however tempted they might be as scientists. With the thought of providing what might be extremely valuable research data, I considered forcing the issue by making a unilateral decision to present the opportunity to them if they wished to record the data (that is, I would stop wearing the glasses on my own), but in the end decided I could neither go against their wishes nor take a chance with my brain because of my responsibilities as a parent. But I was tempted!
*

It was very hard for me to adjust to the Phase III glasses. My intuition is that it was because of the loss of the prisms.
Wearing the new glasses was unsettling, and with them I felt a change in my personality. From my notes:

May 22nd, 2008:
I find myself dreamier in very specific ways. It is harder for me to attend to narratives when people are talking. It is not so much that I drift off, but rather that I pay attention to other parts of them—who they are, what they look like, and sound like—rather than just what they are saying.

I am more annoyed by noises such as lawn-mowers, refrigerators, a noisy computer fan . . . I have less sense of my left and right magical hearing spaces . . .

I got into minor social tussles with two difficult people. I was clearly in the right in both cases, and also very reasonable. However, I noticed that I was more reactive, and concerned about “fairness,” than I would have been with the Phase II glasses. Wearing those I would have been calmer, and would have just patiently listened to the unfair things being said, without responding. While the issues were each resolved quickly, and amicably, I was disappointed: first that the tussles occurred at all, and second, that I was bothered about it when they did.

My handwriting has deteriorated again. While it is
possible
for me to force myself to write neatly, as with the Phase II glasses, it is not natural. I am again dropping pieces of individual letters, taking shortcuts in my cursive writing. I am in a hurry
when I write, and my muscles aren't working in the same way.

I am quite productive. I've gotten much done this week. I've been able to prioritize, and then calmly choose victim tasks that I won't be able to get to, without worrying about them. I have a strong sense of intentionality and choice.

May 29th:
I've experienced a natural and striking increase in my ability to find keys on the piano and to play simple pieces by ear in twelve different keys. It is significantly easier for me to “see” the notes in relation to one another as I pick out tunes, counterpoint, and chords. I am more easily absorbing the visual patterns of the keys, and the sounds are more accurately linked to those patterns.

Because I could see better with the Phase III glasses, I tended to wear them at night while driving.

From the beginning I found the Phase III glasses “unbalanced,” as though one eye was seeing the world differently from the other. Each time I changed my focus from near to far, or vice versa, there was a lag before my eyes agreed on what they were seeing.

I picked up my Phase II replacement glasses on May 27th. They were immediately more comfortable, and because there were so many end-of-the-school-year demands on me, I mostly went back to wearing them, though I still wore my Phase III glasses when driving at night. I sent a note to Zelinsky explaining, but she verified that this was the correct prescription. She suggested that I continue to trade off between the two
pairs until I could make the transition. I had work to do. The timetable was up to me.

In late June 2008 I began a regimen of wearing the Phase III glasses a few hours a day, and the Phase II glasses the rest of the time. This lasted for more than a year. Then, during an extended August 2009 working vacation at my mother's rural property in northern California, where the demands on me were lessened, I put the Phase II glasses away and forced myself to wear the Phase III glasses for long periods each day.

August 26th, 2009:
During this whole month past the Phase III glasses have continued to feel “unbalanced.” I have to work hard at wearing them. Over time, however, I have grown to tolerate them. When I tried going back to my Phase II glasses a few days ago I found that it was like regressing from being a responsible adult back into some sort of adolescence: although it has been painful to move on to a more profound state of recovery, I no longer find it attractive to go back. Time to grow up!

After that month in California I was able to wear the Phase III glasses all the time for several months. I was never comfortable with them and how they presented the external world to me, but I
was
happy with what they did for me internally. My cognition was again further improved.

Zelinsky later explained to me that my lopsided feeling was because, in fact, the targets in the two eyes
were
sharpened in different ways. One was magnified slightly more than was the other, intentionally forcing my brain to readjust the balance
between one eye and the other every time I changed the near/far focus of my gaze.

On October 15th, 2009, after fifteen months with the Phase III glasses, I returned to the Mind-Eye Connection and was tested for my Phase IV glasses.

From 10:15 until 11:00
A.M
., I went through preliminary review and testing with Martha. I filled her in on some of the observations I'd been making in my diary. “On the good side,” I said, “I experience a general state of joy, peacefulness, and calm well-being. I feel much less need for vigilance. I have more choice in what I attend to. My house is significantly more ordered.

“On maybe the bad side, but also maybe still good, I'll report two strange things: First, the
quality
of my listening to people is different. When people are talking to me about themselves, I am noticeably less interested in the story—that is, the ‘drama'—and in the context. Instead I find myself paying close attention to the person speaking, and the qualities of
who they are
as they speak. But I am no longer
compelled
to
become the story with them.

“This might be bad in that I am just a less compassionate person. It might be good in that I can choose to be compassionate, but am not driven to be. I have more choice. It might be good that I'm attending more to the actual people, and their immediate experiences, than to the stories they are telling, which might even be a better form of compassion.”