Up until this point in my research into my condition, I had been learning how brain chemistry determines what happens in our minds. What Dr. Theise was saying flipped that around, implying that the mind cannot be explained by just looking at the brain, but rather that the mind itself may be fundamental—that the physical universe may arise from the mind.
In addition to introducing me to a new way to look at the mind, Dr. Theise also pointed me to a different theory on synesthesia. Dr. Theise himself has the spatial-sequence form of synesthesia, seeing his time units out in space around him. So far, I had found lots of research claiming that synesthesia develops when wires in the brain get crossed. But Dr. Theise suggested that it might go deeper than that. In his view, the mind or consciousness underlies all of existence, and the brain is merely filtering out everything that isn’t necessary for daily functioning. He likened it to the way you can tune in to a specific radio station. There are millions of radio signals out there, but the radio is able to filter through them all to zero in on the one you want to hear. “When a radio can’t be tuned,” he said, “it’s not actually transmitting too little information, it’s transmitting too much information. The overlapping, multiple signals collide in our ears. Similarly, in the deeper mind accessed by the meditator, in the mind that is as yet unfiltered by the brain for everyday functioning, there is no separation of one sense or another.”
One thing Dr. Theise told me that really surprised me was that some people think that all babies are synesthetic and that this innate blending of the senses is filtered out as the brain develops. This made me think of some articles I had come across in my research showing that, compared to adults, two- and three-year-olds have twice as many connections, called synapses, in the brain. Scientists say that these extra connections get weeded out through childhood and adolescence. So maybe it was true. Maybe we are all born synesthetes, but most of us lose the gift as our brains develop.
Dr. Theise then described his own experiences with meditation with a tidbit from left field that brought me back to Newton and Einstein: “Without exception, all my best research ideas—the kind that I know are right even before I confirm them experimentally—have come to me while I was meditating.”
Although my conversations with Dr. Bushell and Dr. Theise provided a lot of insight, I felt like I had more questions than ever. The more I learned, the more I realized how much I didn’t know. In my quest to discover what was happening in my brain and how I fit into the world at large, I was beginning to think that I might have to open my mind to a variety of different theories about how the universe really works.
Word was starting to get around about me within this community. Even a top Tibetan lama being studied at New York University by Dr. Bushell and the director of the contemplative Neuroscience Lab at NYU, Zoran Josipovic, had heard of me. A political refugee who had apparently cured his own gangrene by using a form of meditation known as tsa lung, he was being examined in brain-scan machines while meditating. Phakyab Rinpoche is believed to be a living master of the tsa lung discipline. Its adherents visualize moving a purifying air through the channels of the body to cleanse and heal.
Rinpoche sent a message to me and said that had I not suffered through the attack and all the subsequent pain involved, I might never have achieved the ability to meditate so effectively. And I certainly might not have the empathy for others that I now had.
“Sickness is bad, but it made you focus and be strong. If something negative hadn’t happened, you wouldn’t have these positives. It is a gift.”
He suggested that when I meditated I shouldn’t just close my eyes. Rather, he wanted me to concentrate and meditate on a purifying wind flowing through all the channels of my body, clearing out disease. In addition, I might imagine a single pebble being dropped in a puddle and radiating out to cleanse my body from within.
I was very appreciative that this lama had taken an interest in me. He had been through excruciating pain like me and had used the power of his own mind to heal himself. It helped me to forge on. And when I experienced new pain or tremors, I found myself imagining the wind or the pebble. It continues to be helpful to me and lessens my pain and anxiety.
Another aspect of the pain-management clinic that I was learning to enjoy was the gym. I hadn’t worked out for years but I was now lifting weights and using the treadmill available at the center. A big hurdle for me was getting past the idea that if I did something that hurt, like lifting weights, I was further damaging myself. The therapists explained that this was a common misconception among people who’ve been badly injured. Avoiding weight-lifting might lead to muscle atrophy, bone-density loss, and a lack of conditioning, and that was what would really hurt me in the long run, they said.
Though I was making great progress in the clinic’s program, the group-therapy sessions remained a challenge. Before the sessions, I worried about how hard it would be for me and the other participants to reveal the details of our private lives. One day, I arrived at eight o’clock to do my morning stretches before the meeting, and I was already starting to feel anxious. I knew it was going to be a very emotional day for all of us, delving into our difficult histories and speaking publicly about them.
The group convened, and our leader encouraged us to share what was on our minds. The patients began to tell their stories, one by one. One man talked about how exhausted he was living with chronic pain and how it distracted him from his life goals, and I felt myself physically tense up because I so related to him. He added that the sexist myth that men should always be strong and able made him feel doubly bad. I realized I was beginning to feel both his discomfort and my own as I listened.
Then a hard-looking young woman named Sunny began to speak. I had learned from our previous conversations that she used to be in a gang but had left that life behind. Just as she was getting her life back together, she suffered a back injury.
“I’ve been a tough, strong girl my whole life,” she said. “But now it’s so bad having people just look at me and unable to see what’s wrong with me and still expecting me to work like before. . . . People are treating me like I’m a wimp or lazy and don’t want to work. They say, ‘Oh, everyone gets a sore back once in a while.’”
I didn’t realize it, but tears were running down my face as she said this. I felt sorry for her and was reminded of my own situation with family, friends, and colleagues who still expected me to lift heavy things at the store all day long as I had for years and who treated me like I was complaining for no reason. Most of all, I just thought of my chronic pain and whether I would have to live this way for the rest of my life.
I looked up at my instructor and realized she was staring at me. Then I felt the moisture on my face. I pointed to the door, asking to leave. She nodded.
I went across the hall to an empty office, sat in a chair, and thought about Sunny. She had been kind to me earlier, listening to my whole life story. Tough as she was, she hugged me at the time and said, “I ain’t never known nobody like you before, Jason.” I felt bad for her right now, and bad for the other people who spoke. And then I realized how much I’d been suffering for years and years. I started really bawling, just howling. I hadn’t cried that hard since my son died. And then I remembered him and I let out a wail.
I couldn’t stop. All the tears I had not shed about the mugging poured out of me. So did the anger and sadness over my brother’s and stepfather’s deaths. I realized I’d never properly mourned any of these losses. Now they were all hitting me simultaneously in a tsunami of pain.
My body was shaking and I felt like I needed to run but I didn’t know where I should go. I could barely catch my breath as the now silent sobbing came in waves and my lungs heaved. My whole body alternately lurched and cramped. I could barely sit up in the chair.
A doctor came in and tried to comfort me but I was inconsolable. I couldn’t speak when she asked me what was wrong. I just shook my head vigorously to indicate I couldn’t even talk. She’d been
kind to me in the past and had asked about my drawings.
I barely noticed that she’d walked across the room to the windows. Then I heard her say:
“Jason, how many windows can you count on that building facade across the street?”
I looked up.
With that, I took a big gulp of air as though I’d just surfaced from an ocean dive.
“There are twelve.”
“Great,” she said. “How many panes are there in each window?”
My shoulders were still heaving uncontrollably but I counted them and saw there were eight in each window and I managed to say that aloud too.
The doctor continued to engage me with questions about things outside the window: “How many branches are on the tree? Is it moving left or right in the wind?” and I was able to answer.
She handed me a paper and a pen and asked me to draw her something. I asked for a ruler and was on my way. I sat like this for a very long time until I’d made a pi diagram.
She put her hand on my shoulder when I gave it to her and she smiled.
What just happened? I wondered. I was exhausted—I felt like I’d just run fifteen miles. The staff kept me after hours and ordered me a cab because they didn’t want me to drive home alone. The doctor gave me a Valium to take when I got home so I could sleep, but I just lay in my bed meditating and had no trouble falling into a deep slumber within minutes.
The next day the staff told me it was the worst panic attack they had ever seen. The doctor explained that the reason she asked me to begin counting things was to shut down the pain gateway neurologically. I asked her to explain.
“Constant pain like you have produces the chemicals that cause panic attacks to be released in your body pretty regularly,” she began. “You probably have had stomach problems as a result of this too.”
She went on to explain that there was a neurological gateway for pain, which I had to guard diligently. The basic concept, she said, was that both pain and pleasure signals traveled via nerve fibers in the spinal cord to the brain, but only so many signals at one time could make it through the gateway and into the brain. The idea was to flood the brain with pleasant feelings so the pain signals couldn’t get through. One way to do that was to rub my left arm when it hurt. What actually happened when I did this, the doctor said, was that the sensations from the rubbing kept some of the pain signals from getting through to my brain. It worked for emotions as well, and the doctor suggested I try distracting myself when I was in pain emotionally.
By asking me to count the windows and panes and other objects, she had been trying to distract me from the overwhelming thoughts making me panic and alter the chemistry of my brain. And it worked!
“We nearly called 911, and if you hadn’t responded, we would have,” she admitted. “We were afraid you were going to have a seizure.”
I was not political about many things but I now felt very strongly about the need for pain management for people everywhere. I was comforted to learn that there’s a global organization called the International Association for the Study of Pain (IASP) that’s dedicated to promoting research on chronic pain, increasing knowledge about it, and improving treatment. The group has called for the relief of pain to be a human right. I couldn’t agree more. I felt some relief just knowing that there are people out there who understood.
People couldn’t or wouldn’t stop asking me to do the things I could no longer do, but I was learning to manage my response to their ignorance much better now. I reflected sometimes on my breakdown at the clinic and realized it was the most intense wave of anguish I’d ever felt. It was just raw sadness built up for so long for so many reasons, compounded by the profound empathy I was feeling for the other people in my class and multiplied by all the people living around the world whose suffering was apparent to me at that moment. It was all my pain amplified by all their pain.
When the pain-management clinic was over, I was saddened, though my fellow patients and I promised to keep in touch. When I left, the staff gave me the yoga mat I’d come to love so I could use it at home, and another curious gift—a simple green dot sticker.
“What’s this?” I asked.
“Place it somewhere you’ll always see it,” said a staffer as he shook my hand in farewell. “And when you look at it, remind yourself to breathe deeply and relax.”
The green dot decorates the rearview mirror of my car to this day.
Chapter Fourteen
It’s All Relative
SOMETIMES I PICTURED my brain as a cloud producing a multitude of thunderbolts—the lightning radiating throughout my nervous system. These bolts from the blue could be moments of pure inspiration some would call genius. Other times, the lightning storm just rattled my body.
I was just beginning to feel hopeful again when it started once more: fasciculations, from my tongue to my toes. Like little earthquakes all over me, hundreds of them a day, they reminded me nearly constantly that my brain was still experiencing a kind of thunderstorm.
This had been going on for years, since right after the mugging, but lately it had become more pronounced.
The most frequent tremor I experienced was in my upper left thigh, just below where I used to keep my cell phone in my pocket. Now I couldn’t keep my phone there because I’d likely ignore it, thinking it was my condition. Friends told me they also sometimes heard phantom phone rings or felt vibrations in the places where they usually kept their phones. I found it fascinating that a similar phenomenon was affecting them (it’s known by various inventive terms, such as ringxiety, hypovibrochondria, and faux-cell-alarm), but in my case, the sensation could occur anywhere on my body—not just where I kept my phone—and never with disembodied sounds, like my friends reported. Both conditions are mysterious and not yet well understood, though mine is neurological, and ringxiety may be either neurological or psychiatric in nature. I was told there was nothing doctors could prescribe for my condition. I would just have to tolerate it. It was not painful; just annoying.
I worked on distracting myself when it happened, remembering to breathe from my stomach to draw in more breath and relax, and I did my best to ignore it. It would have driven me crazy if I acknowledged it fully every time—it was as if someone were poking me, again and again and again.
One thing the doctors did tell me is that in most cases, the symptoms can be greatly reduced by lowering overall daily stress. Stress can wreak havoc on your muscles and nerves, they told me, due to a rush of hormones and increased blood flow. I would need to exercise, get plenty of sleep, continue with my meditation practice, and lower my caffeine intake.
Adrenaline plays the most central role in creating the tremors—adrenaline is another name for the hormone epinephrine, which is released in response to any kind of stress. It serves to increase cardiorespiratory abilities, making it easier to fight or flee.
I’d been exercising again, and that might have been contributing to my tremors. Exercise caused higher adrenaline levels in the body, the doctors said. Untrained people will have a greater rush of the hormone than athletes. I didn’t want to stop exercising, so I just had to hope the tremors would improve along with my conditioning level.
Little is known about the origins of fasciculations; no one is sure if they’re brain-based or muscle-based, but the fact that they started so soon after my head trauma made me believe they came from the brain. I wondered if the seat of this phenomenon could be the parietal lobe—the very same area that likely gave me conscious awareness of the processes of math. It remained to be seen what that part of my brain looked like in depth; I hoped the testing in Helsinki after the Stockholm conference would give me some answers.
As exhausting as my challenges were, and as sad as they made me, I continued to try to move ahead. Sometimes my life felt like one step forward and two steps back. I regained my ability to draw—a giant leap forward—then had the biggest panic attack anyone had ever seen at the pain-management clinic. Must I forever push the boulder up
the hill only to watch it roll back down and then have to begin again?
I knew that I was much more fortunate than most savants, many of whom struggle with overwhelming disabilities; some, like the sculptor Alonzo Clemons, are barely able to form sentences. The man on whom Rain Man was based, Kim Peek, couldn’t even tie his own shoes. My tradeoffs might not have been as severe, but they were legion. Some days they felt like death by a thousand paper cuts—tiny but really annoying little wounds, sharp as knives.
Though my muscle twitches were ever present and distracting, they were not the worst of my tradeoffs. The majority of the unpleasant side effects of becoming a savant had to do with my OCD. It thickened the atmosphere around me; made it seem as if I were moving through molasses. I used to move through life like quicksilver, darting from one experience to the next, and now it was like my feet were in cement. When I climbed stairs, I had to count the steps; when I brushed my teeth, the brush had to go under the water a specific number of times; when someone shook my hand, I practically had to bathe in antibacterial lotion afterward. I even counted the waves of my muscle twitches when I was unable to ignore them. All of the things most people do in the course of a day without even noticing—insignificant little actions—stopped me cold. Everything felt so damn slow, despite a mind, or part of a mind, that moved faster through intellectual pursuits than ever before. It was very frustrating. The most curious thing about it was that I was totally aware of it and desperately wanted to change it but was powerless to do so.
A couple of weeks out of the clinic, I hit a wall. All of the physical and emotional burdens were adding up to a funk that I knew I must finally face—it was depression. I’d battled it after the mugging and had overcome it, but it was back, fogging up the windshield of my mind. I spent more time now in sadness and found it harder and harder to recover. The panic attack in the clinic made me realize things were getting to me deeply and I must face the fact that my new life didn’t come without costs.
Struck by Genius: How a Brain Injury Made Me a Mathematical Marvel Page 17