The Ghost in My Brain (24 page)

The key to making sense of this test is in understanding that when the patient's eyelids are closed, no
eyesight images
are registering—he can't
see
—but a significant amount of light is still passing through to the retina. The non-image-forming retinal systems operate with minute levels of light, so they are not affected. In this way we have a quick and easy filter—the eyelids—so we can test the effect of different lenses on the non-image-forming retinal systems, without distraction by the two eyesight systems. We can think of the Z-Bell™ Test as a sort of “vision” test but for non-image-forming retinal processing. This is crucial, because it allows an optometrist to align her patient's three-dimensional
hearing
with his internal visual/spatial map of the surrounding space.

Zelinsky often repeats the test a number of times during
the final phases of tweaking prescriptions for eyeglasses, typically using the phoropter, but sometimes with handheld lenses and filters. Among the treatments she is testing are colored lens filters, prisms, lens prescriptions (possibly including, very specifically, nontraditional balance between the lenses), and translucent occlusions (translucent film applied to the lenses to block, or partially block, light), all later built into the glasses that she prescribes.

The Z-Bell™ Test, already mind-bending to experience yourself, is perhaps equally electrifying to observe. I've now many times watched others being given the test, and what you see is that for one of the bells the patient is waving his finger around eight inches away from where the bell is ringing. He can't find it at all. Then, with just the slightest change in tint, or lens, he is able to touch the bell, right on target, every time.

With no glasses on, and also with my normal prescription glasses for mild nearsightedness, in bright light (and, remember, with my eyes closed), I was not able to touch
any
of the bells in
any
of the quadrants on the Z-Bell™ Test. This was a potential explanation for my great difficulty turning sounds into the visual symbols of thought, and also for my extreme aural sensitivity. Because my visual/spatial system was so degraded, I had to increasingly rely on my audio processing. But, as the Z-Bell™ Tests showed, the 3D spatial world of my hearing was completely out of sync with my 3D visual world, creating an impossibly complex stream of input data that my brain had to disentangle throughout the day. (And we should note that, because of my aural predisposition, and my lifelong study of both sound and music, this integration was much more central to me than it typically would be for others.)

Zelinsky also took me through an exhaustive set of vision tests, such as you might get—in abbreviated form—at a regular optometrist's office (“Which is clearer, A or B?”). Ultimately, she would be prescribing partly for my eyesight, and this had to be taken into consideration, although in my case it was clearly secondary to prescribing for my brain.

Her diagnosis: Except for minor problems with floaters from the crash,
*
my eyes themselves were working fine. Additionally, the chemical and electrical “magic” that performed the filtering in my retinas was also in good shape, so the reduction from 100 million retinal receptors to 1 million axons was happening correctly. The problem was in my brain. Zelinsky now weighed her options:

1. With the
eyesight
part of any prescription she decided upon, she could affect the relationship between target (center vision,
attention
) and background (peripheral vision,
awareness
)
.
She could blur the target so the background was emphasized, or vice versa. The balance between the two would affect my executive function (i.e., planning and problem solving). She also could make changes in my intentional eye movements, such as where I chose to look within a scene.

2. With
nonyoked prisms,
she could affect my
peripheral awareness
processing, and make changes in my anticipatory eye movements, such as when I was automatically predicting the motion-path of an object.

3. With
yoked prisms,
she could affect my postural mechanisms, and make changes in my orienting movements, such as when I turned my head in response to a sound.

4. Using
filters,
such as tints, occlusions, and the blockage of tear duct drains (tears change the way light gets through to the eye and also help regulate body systems), she could affect the homeodynamics of my body, and make changes in my reflex movements, such as those driven by states of vigilance. For example, there are direct connections between the retina and the hypothalamus, which affects emotion states.

One of the principles of Zelinsky's treatment involves making an additional determination of how much discomfort and challenge a patient can tolerate. Mostly this has to do with the wiring between the eyes and the brain, and is beyond the control of the patient. However, some of it has to do with temperament and how much the patient will work with the lenses to push the brain into using new neural pathways. Often Zelinsky will have to “pry open a small window” in which to work with an early prescription, and then follow up later with a more brain-challenging prescription to get the real work done. With some temperaments, she has found there is not much she can do.

Additionally, any plan Zelinsky formed would, like the plans of Donalee, be both long-term in nature and comprehensive, rather than isolated to a specific condition or problem. In my case, this meant that her plans included fixing processing weaknesses that were present
prior
to my brain injury.

After looking over all the data before her, including my extensive self-reporting notes, Zelinsky made her decisions about
treatment. Importantly, she assessed that I could tolerate a lot of discomfort, and also that I was highly motivated to change. She would intentionally push me to the edge of her working window, and would plan on using a series of prescriptions to move me from one phase of brain reconfiguration to the next. I would continue to work with Donalee to exercise my brain and push it to take advantage of its new cognitive capabilities as I progressed with my glasses.

Because I was completely absent the abilities to multitask and plan, Zelinsky felt there were immediate problems to be addressed in my executive functioning. And she also wanted to address serious problems with sensory integration—specifically between my eyes and my ears. She decided that she would work with my “good side,” and angle the light from my right (that is, bend the light so that it tended to strike the nasal part of my right eye, and the temporal part of my left eye). For this she used very slight lateral, directive, yoked prisms (0.5 prism diopter in both lenses, with the thick part on the left). But, as noted above, even this very slight prescription was enough to make major changes in which cells of the retina were processing the light. In retesting me on the phoropter, and with handheld lenses, the Z-Bell™ Test showed me right on target, suggesting that she had found some good pathways through the brain with which to work, and that my eyes and ears were now synchronized.

I was mildly nearsighted, and ordinarily would have been given a slight corrective lens in order to see better. But instead of correcting me to 20/20, Zelinsky wanted to stabilize the background of my eyesight—the peripheral, context-setting vision (in contrast to the central target vision)—so she made
the lenses slightly thicker in the center, and thinner on the edges. This scattered the light so that it was dispersed toward the corresponding edges of my retinas, which in turn emphasized my background retinal processing, and deemphasized the target. Zelinsky knew that when I focused on the target I lost my ability to organize the scene surrounding it (such as what happened to me in Home Depot). She wanted me to get more of the context, more of the “bigger picture” of the world around me, and not take in so much of the detail.

This second part of Zelinsky's prescription was intended to address the problems I had when I would become overwhelmed with the details of a visual scene, completely unable to create any gestalt meaning of the larger objects the details comprised: parking lots after shopping, food items on grocery store shelves, and so on. In the diary notes that follow, however, we will also sense my frustration at the necessary (for the moment) diminishing of my central vision.

In the initial days after I began wearing my first pair of glasses I went through all sorts of extreme body and sensory changes, both before and after the Ghost showed up. Having found healthy brain tissue with which to work, I was now relearning how to interpret the signals coming in—like a baby exploring the world. This explains the thrashing that I was going through at the time—waving my arms around in wild gyrations, and dancing, just to walk down a hallway—and the low-level chaos I was experiencing with the apprehension of lines, and doorways, and stairs in my environment. But despite the constant effort, I felt good, and was figuring it all out as my brain rewired itself.

In addition to the phenomenon of the Ghost appearing—which one of Zelinsky's interns suggested might have been partially
caused by some strange form of Charles Bonnet syndrome
*
—there were many other odd things happening to me as well. I took extensive diary notes throughout my treatment with Zelinsky. Following are some entries starting in the first week of having my Phase I glasses:

February 8th–25th, 2008: I love the greatly expanded
hearing
landscape I have with these glasses, especially on the left, but I have also considered these to be the
glasses from hell!
It is hard for me to keep wearing them. They make me so tired, and I am always on the border of losing my balance. I find myself shouting “I can't see!” (silently, inside, but also sometimes even vocally, out of frustration) as I try to make sense of the hugely changed world around me.

I am constantly hungry, with an incessant craving for sugar and carbohydrates. In the very few times I have taken the glasses off for an hour or so, the hunger recedes. I am gaining weight (two pounds a week), but also feel that I am consuming many more calories than that.

I am experiencing mild nausea, and mild disorientation much of the time.

I have taken to wearing the glasses twenty-four hours a day (that is, I wear them also when I sleep) because I have found that with the highly visual
nature of my dreams, without the glasses, I regress by the time morning comes. Wearing the glasses at night allows me to dream without visual fatigue, and I feel much better in the morning.

The glasses have felt “right” (correct) in many profound ways. And yet it is true that, especially early on, at times I have been frustrated to the point of yelling out loud, although even at the time it was happening I couldn't quite describe what it was that was so annoying to me. It was like everything was working correctly, but it was all so new, and I could not make sense of the world around me in the usual way.

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: