This frustration especially tends to happen when I am trying to perform some detailed task like threading a needle, or a cognitive-visual task like finding a particular record album. I have to be careful about knocking things off counters, have trouble getting through doorways and down stairs.
I can’t make very good sense of the center of things, what a sequence is, or the way shapes are placed in relationship to one another, but it is very different from the agonizing trouble I’ve been having for the last eight years. Now it is like having an explosion of joyful curiosity as I flail around and suck in the meaning of these concepts. Several times I have burst out laughing, reflecting that I must look like a crazy person swinging my arms around, dancing, as my body explores its new world.
On the downside I have noticed that I have begun to have some minor short-term memory problems, and pronounced trouble in retrieving nouns.
On the good side, I very distinctly notice the return of a whole memory-scape of symbols based on visual memories from my childhood (say ages 3–12) that make me feel connected, wise, smarter, and as though I can see the world with greater depth. Many symbolic memories from childhood—scenes in which I first formed the symbols I later would use for complex cognition—have become re-accessible to me. They tend to be very specific visual scenes, but are abstract in their nature, and I am now, once again, able to use them as part of the core of my representational thinking.
I also have the sense of a shadowy presence over my right shoulder about thirty feet back.
[The Ghost!]
I think of the “Quantum Symphony” device I own that does electrical line conditioning for my stereo system. It is hard to describe what this device does, but when you turn it off, all the music just gets “sad” by comparison. This is wonderfully analogous to what I experience with the glasses / return of the childhood-memory-symbols: without the glasses on, and without the increased symbolic processing ability I get with them, everything just gets sad. The vibrancy is drained away from life.
I especially notice the memories, and the “broad, deep, thinking scape” when I am listening to music. I can once again sink deeply into the space of what makes music meaningful, spiritual, and uplifting.
I also notice that there is a pie slice on my right side where cognition (the ability to conceive of, and manipulate symbols) is still fuzzy. It is better with the glasses, but still weak compared to my new, explosively vibrant left-hand side.
Ultimately I have really grown to love these glasses, and they have made phenomenal changes in my cognition, peaking in the emotional reuniting with my old self during the second week. I hate to take them off. When I remove them, within just a few minutes I start to sink back into the mire of concussion.
On February 20th, 2008, after wearing the Phase I glasses for only twelve days, I noted the following in an e-mail note to Drs. Markus and Zelinsky:
All of the following occur off and on. With periods of rest (as in no cognitive demands or brain-controlled physical demands on me), the symptoms recede. Under brain stress the symptoms become increasingly dramatic.
1. I find that I am “throwing myself around” to get from one location to another.
2. Connected with the above, my muscles are slightly (but . . . pleasantly?) cramped up so that I am hunched over when I stand. [ . . . ] I don’t really walk, but rather shuffle/jog/dance to get from one place to another, using my arms to help with locomotion.
3. I turn corners, or change directions, by flinging my arms in a gross hurling motion that alters my course.
4. I am experiencing an increase in the number of incidents of being unable to get through doorways, start down stairways, and so on. I have trouble “initiating” movements that have a low-level connection between shapes/lines in the real world, and being able to move toward, or through, them. I am having trouble turning right more often, so end up dancing around in circles to the left all the time as I navigate through the work day. All this, however, is very much unlike how I used to get stuck, and have trouble initiating. Then I was just bone-achingly depleted, and it sometimes took weeks to recover my energy. This, now, is more like normal fatigue because everything is so new and interesting. ‘like a little kid getting worn out by bedtime.
5. I am much less able to “fake” looking normal. It is hard to disguise looking like a weirdo throwing his arms around, dancing down the hall, head and eyes shaking around. However, with mild to strong effort I can force myself to quiesce. But then as soon as I relax, my body starts off again, flailing around like a four-month-old baby playing with his environment.
[ . . . ]
7. I have been more productive at work than I would have expected.
8. It is more like I am worried that I am inconveniencing others by being such an eccentric, rather than that I am suffering. In fact, in a strange way, I am celebrating being alive again.
[ . . . ]
11. My eyes sometimes wander around as though I am agitated, and I find myself visually examining every facet of rooms into which I have just come. I find myself vacantly “looking” at things when listening to others, though this is a function, actually, of doing nothing except attending to what they are saying.
12. Interestingly, I cannot see the Gregory’s Dalmatian* image very well with two eyes, but I see it passably with just my right, and more clearly with just my left.
I returned to Zelinsky’s office on February 26th, 2008, and my brain had already changed significantly—after only two and a half weeks with the glasses. I was comfortable, and balanced, on both the right and left prism walks. My habitual position for eye aiming, as tested with Von Graefe, was now normal: in the distance I was aiming straight ahead, and up close I was just slightly outward, exactly as I was supposed to be. My plastic brain was performing its magic.
Zelinsky noted a high AC/A ratio when she put light on the center of my eyes (having to do with eye aiming), but when she used temporary lenses to change my focusing system just a little, it changed my aiming system a great deal, showing a high connectivity between the two systems. I had a hairpin trigger between my focusing and aiming systems. Zelinsky also measured a cyclotorsion (a slight rotating inward of the eye when the eyes look up close and downward)—more in my right eye than in my left.
With the Phase I glasses, my Z-Bell™ Test was stable, and much improved. I was also much better at visual localization, and could now readily find the pencil eraser with my eyes closed.
Zelinsky decided that it was already time for me to move to Phase II. For the new prescription, she kept the light angled from the right with the directive yoked prisms. Then she added a bifocal reading prescription, and also a slight (but not full) nearsighted prescription to give me a little better focus on targets at a distance, correcting me to 20/30. She did nothing to help my background vision, which was now better balanced.
Zelinsky had several goals for Phase II. First, she was going for a little more comfort by giving me better focus on near and far objects. (That is, I could see better.) But she was also, at the same time, pushing me to be more flexible in being able to shift my gaze from near to far. By not emphasizing the background, she was pushing me to reorganize the surrounding space on my own, because I was now already reorienting internally. Her thinking was that because the background was more comfortable, I would be able to shift my gaze within it more easily.
I was immediately comfortable with my Phase II glasses, and they always felt well balanced, though I did miss the wild, creative left-hand space of the first pair. With these glasses, and the work I was doing with Donalee, I was rapidly progressing back toward normal life. Along the way I experienced some rather striking symptoms during the process of change. And I found that in addition to restoring cognitive abilities I had lost, the parallel treatments also started to correct attention weaknesses that had been present prior to the crash.
Several themes were dominant: In th
e early days of adjusting to these glasses I had mild full-body spasms wherein all my muscle groups took turns flexing, though in an almost pleasurable way—the feeling was like stretching in the morning. The contortions lasted all day long, though there was an ebb and flow to them, increasing as my brain grew fatigued under cognitive load. My knees and toes were turned inward—the left more than the right—and this left me with a strange loping pigeon-toed gait when I walked. Although I had no trouble keeping my eyes focused on objects, my head was often in constant motion, rolling around on my shoulders in all manner of odd postures. A mild version of the side-to-side seizures also appeared from time to time. At my most affected, walking down a hallway became a strange comical dance as one set of muscles flexed all together, and then another. The biggest problem was that it looked really odd—it was difficult to suppress and impossible to hide—though there was a surprising grace to my movements as I bobbed along.
After several weeks I began to experience a Zen-like calming of the inner dialogue I had been listening to in my head since my earliest memories of childhood.
The “dark” slice on my right-hand side began to open up (though not all the way), and with these Phase II glasses my hearing and ability to think in that part of my world was emphasized. Accordingly I found myself more grounded, with a tendency to be more logical and less dreamy than I was with the Phase I “left-hand-side” glasses. I was able to effortlessly turn right when I needed to. I could see the right-hand side of complex symbols, like lists and sequences, in my mind’s eye. And though I tired if I had to focus too hard on the right-hand side of one of these symbolic objects, it was a normal tired, as though I’d had a broken arm, the cast was off, and my arm was still just a little weak.
Despite these and many other symptoms, my work was not negatively affected, and I was becoming more productive. While sometimes startling, the changes nonetheless felt intuitively “right.”
March 14th: I hear more intellectual detail in music, but it is also less emotionally engaging. I hear more of the structure of the sound, but am getting less of the deeper thematic meaning. I also hear less of the rhythmic interplay than I did with my Phase I glasses, which rhythm I now understand is more about a pulling, tugging kind of passion.
When I look at objects, especially first thing in the morning, there is a strange, rapid shaking/blurriness for a moment, and even then I do not always fully focus. The effect is like when trying to adjust one’s eyes for stereoscopic photos, but it happens automatically.
My reading has changed. I usually do not read particularly fast (~350 words a minute), and tend to hear the words in my head—though my reading pace is two or three times that of my speech. In the past, to speed-read—which I’ve several times studied recreationally—I have to work at “getting over the hump,” where I just put the words in front of my eyes and see the images they generate. It always takes days of work, and I never have gotten to where it becomes automatic; I have always had to keep pushing myself.
Now I notice myself almost naturally speeding through passages without the aural accompaniment of the words, as though I am simply gracefully floating into speed-reading. Intuitively, this is connected with a lessening of the constant dialogue—chatter—in my head that has previously always attended my normal activities during the day.
March 17th–31st: I continue to be very grounded, and comfortable in my body. I have more energy. Today I slept later than I have in a year. I am distinctly getting more satisfaction from my dreams.
I still feel starved for calories, and am consuming large quantities of Coca-Cola and candy. But I have also lost three of the six pounds I gained last month. Am I burning up the calories in my brain?
There have been changes in my sexuality. I am (and think most males are . . .) naturally interested in the beauty of women in a very visual way. When Qianwei happens to be in town, I notice that I am now seeing her in a different and more sexually-enhanced way. I sense her walk, her scent, the sound of her voice, and so on, differently/better because I “see” her more clearly. I can “see” her femaleness. That is, I have a sense of her (and others) being essentially different from me in a male/female way that is one component at the heart of attraction.
April 17th: It is no coincidence that I have not updated these notes in more than two weeks. My inner dialogue has considerably slowed down. Along with the slowdown, I am much more comfortable letting things go. In this case, I have let the notes go.
What I notice is a peacefulness in all my muscles, as though I had just taken two Ibuprofen and had a glass of wine. I am able to just sit and look at people, at situations, at the world, in real time, without continually thinking about everything, and talking it over in my head. I can’t ever recall such an extended period of internal quiet like this in my life.
I am also very specifically less vigilant. For example, when driving I am not continually checking left and right when it is not necessary to do so, such as when waiting at a red light. Instead, I’ll sit calmly and look straight ahead. I am getting much more information from my peripheral vision without having to turn my head and eyes all the time. I am no longer prompted to attend to all manner of unrelated objects that grab my attention beside the road (and about which I have no interest, such as advertising billboards).*
My memory is noticeably malfunctioning, specifically for the retrieval of names. I am experiencing roughly twenty-five such memory failures a day.
I find I must be intentional about moral choices. Ordinarily there has been an inner dialogue that “tells” me to do the right thing, constantly. Now that dialogue has lessened, and so I have to choose to be moral. I just do not care as much. It’s as though I trust who I am more than I used to, and don’t need to always prove it by doing the right thing.
April 26th: I continue to have a Zen-like absence of inner dialogue. I am very alert. When I need to start my mind for something, I do. I estimate that my ongoing inner dialogue is 1/5th of what it has been my whole life. There is much less use of my mind’s eye for visualizing, ruminating, worrying, judging, seeing future outcomes, etc., all the time.
Qianwei is off to China for several months, so I am parenting on my own. Lucy, Paul, and Erin all needed rides, help with schoolwork, and so on this weekend, but I was still able to complete long and difficult collections of Donalee’s follow-the-rule exercises each evening. I was tired afterwards, but had no breakdowns of any kind. My cognitive stamina is phenomenally improved.
On Donalee’s exercises I am getting much better at figuring out the rules, following them, performing the necessary practice, and THEN moving on. In the past I would jump immediately to the solution phase, and skip the deep process understanding phase that comes with repetition. I do not seem to mind the intentional rote work as much because I do not have such a strong need for novel input. That is, just doing the work is satisfying in itself. I don’t always need something new to distract me.
Rather than trying to “fix” chaotic social problems that arise in my environment, I just notice (“see”) the bigger picture, and move on to something else, or wait quietly until others calm down. In the end this is likely to be a good thing, but it does require change in others around me. I feel increased freedom to choose my actions, and am much less driven by anxiety over what others are thinking, and anxiety about the future.*
The memory difficulties are a downside. My intuition is that I’ll figure out how to start remembering things again, but without all the chaotic, vigilant refreshing of every last damn thing in my life.
I can summarize my state as “I no longer care [about the details].” But this is a positive. It was exhausting to care about everything, so now I choose not to, and I am not so worn out all the time.
On May 1st, 2008, in assessing me for my Phase III glasses, Zelinsky repeated only my eyesight tests. I had been in regular e-mail contact with her, so she already knew of the relatively dramatic cognitive changes tha
t had been taking place.
She noted that there were three choices of action she could now take: First, she could emphasize the background again. Second, she could angle the light straight from the front (by removing the prisms), and lessen it from the right, removing the crutch I had been using in jump-starting the use of my new pathways to the visual cortex. Or, third, she could angle the light from the left, pushing me into the “bad” area, to force more adaptation to the new signal paths. She decided on the second option.
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.
The Ghost in My Brain Page 23
