Sensation

I’m roughly four months into my recovery. Several weeks ago I created this site so that I could write about my experiences both suffering and recovering from an autoimmune encephalopathy. As I got better, I thought, this would become a forum for other thoughts and essays, even those unrelated to brain disease. But the initial goal was to capture some artifact of my experience.

The first piece I wrote described what happened as it might appear to someone else. I described dates, circumstances, events. I enumerated specific cognitive tasks that became difficult or impossible. But what I failed to provide is the sensation. How exactly it felt to lose my mind as well as all the sensory phenomena that have accompanied recovery.

I always had difficulty with more personal writing. My talent as a writer, since childhood, has been a mechanical efficiency best suited to describing facts, details and relationships of the mathematical variety. Capturing an emotion or sensation, subjective experience, never agreed with my sensibilities. The logic in my brain insists that such a task is impossible. The lack of any real measure of success leaves me clueless as to how to approach it. Nevertheless, I find myself saddled with experiences whose nature I am compelled to describe. Ironically, it is only now, with impaired cognition, that I can attack the challenge posed by this sort of task.

Cognitive Decline

At first, all the changes were subtle. My sense of smell mostly disappeared, but I never knew for sure when it happened. If I put food up to my nose, I could smell it, but the smells of people, rooms, places, these were gone.

I remember being in a subway station during my senior year of college, noticing a sort of unreality about everything around me. At first I attributed this to my higher thought processes conducting an exercise on the limitations of human perception. I thought that this existential angst might be causing me to feel that everything was somehow low-res, flat, lacking in depth. The word ‘cartoony’ came to mind. The feeling never quite went away.

Later, in the summer of 2007, working memory became the first disabling casualty to my cognition. I remember losing the ability to practice music. Playing long-tones, I forgot what note I had just played when it came time to play the next note. Sight-reading music was never my strong suit. It was easy to attribute to this my sudden inability to read at all. But something else was afoot. Keeping track of beats in a bar became a chore, playing in any meter besides common time or three four became impossible.

I moved into my apartment in Washington Heights in the fall. My struggles to practice became more pronounced. I hardly listened to music, or even thought to. But I could still read, program. Time slipped by, I applied to Juilliard, a process that required more effort than it would have taken when I was seventeen. By the time the application was in the mail, I had ceased to be a saxophonist, and began working at the New York Observer.

Then began the first of a series of sensations that corresponded to a tangible feeling. When experiencing the world, assuming it is the same for everyone, we have the sensation of existing in a ‘headspace’. Thoughts, imagined actions, the perception of where it is that ‘I’ exists gets mapped into this headspace. I remember sitting at my friend Sebastian’s Brooklyn apartment, awakening to an eerily new sensation. Somehow, I was only in the left side of my head. I know of no other way to communicate how it felt. I had visual input from both eyes, could move all my limbs, I hadn’t had a stroke. But I felt a though I only existed on the left side. There was a big thick cloudy nebulous feeling in the right side of my headspace. I tried unsuccessfully to force my consciousness into the sensation of being in the right side. I tried futilely to picture objects in the right side. In what later became ritual, I tried to picture a rope, one end affixed to my nose, the other to the back of my head, and swing it around my head. I couldn’t picture it on the right side. As soon as I managed to place its center at the very top of my head, it became stuck, I could not force it any further.

Weeks rolled on and I failed to improve. Sometimes, the feeling, which neurologists have later told me is referred to as ‘neglect’, persisted in the right side of my head, but occasionally it migrated to the left. Additionally, a new feeling emerged, a continuous, dull pressure on the right side of my head starting at the temple and extending behind my right eye.

While doctors stumbled, trying to find answers, my consciousness was altered further. The headspace problems grew worse. I dedicated hours of every day to trying to focus on a line on a wall, I was not always able to do it. I tried to imagine a line moving along a wall, orthogonal to the floor. It required the entirety of my concentration to maintain the exercise for more than a couple seconds.

A new problem emerged, I lost language. I could still speak, and hear. Many people, principally those who had not known me before, were unable to detect that something was horribly wrong. But there was no longer in my mind that I made a horrible transformation. While, I could still speak, even articulating complex ideas, finding the words, sentences and organizing ideas into language became a monumental task. You could think of it as being extremely resourceful in a randomly half-stocked kitchen. The paprika was there, but I lacked salt. Forming sentences required mental gymnastics, replacing missing words, lines of thought with others that could be rigged together to produce the proper result.

The pressure grew, the language faded, and disturbances in visual cognition entered the picture. Things seemed to be shaking, slightly blurry. Also, I could only focus on one small part of the picture at a time. Often, it seemed as though the world was scrunched together, collapsed in on itself. All the right sensory input was there, but my mind didn’t know what to do with it. I constantly shook my head to the side violently, trying to see what was there before I lost what was in front of me. Friends and family were convinced that I had developed a twitch. But the act was voluntary. It was the only way I could respond to my diminishing cognition. By refusing to accept it.

At my worst, I was incapable of a real conversation, barely able to play a video game, disoriented even when driving locally. I felt less than alive; unsure what I was or what my life had become. The inability to think made me feel incomplete in a way I doubt even the loss of a limb could. I had become dependent, feeble, able to hold fear in check only by clinging fiercely to a stoic philosophy. The remains of the logical center of my brain, once built for math and music, worked tirelessly to produce assurances that I had nothing to gain by worrying about events outside of my control.

Recovery

The path to recovery began in May. My newest doctor, suspicious of an autoimmune basis for my encephalopathy, started me on a course of high dose steroids and immunosuppressive therapy. Within a couple weeks, improvement was drastic. I had fallen so far that I didn’t know what recovery meant. the earliest initial improvements concerned my vision. Suddenly I could see normally. Before, to make the world stand still long enough to allow me to drive, I had to place one hand firmly on my forehead, applying pressure in a way that somehow made it easier for me to focus, stabilizing the shifting visual to render the world temporarily comprehensible. After two weeks of treatment, everything slowed down, incomparably more intelligible.

The feeling of pressure that had plagued the right side of my head began to fade, replaced by a strange tingling. As I continued treatment the tingling expanded, reaching beyond isolated areas to form what felt like spider webs shooting through my brain. A disagreement between doctors led to a temporary weaning of my treatment, bringing about a complete relapse of my symptoms. Then, in July, treatment was reintroduced in full. The effect was gradual but dramatic. At times the experience of healing has been more jarring than the feeling of losing my mind ever was. I had rarely been aware that I had been losing my mind before suddenly losing the ability to do things that had always been routine. Getting better so quickly, after being compromised for so long, I felt each day to be waking into a new state of being.

Nights have been particularly strange. The tingling, weblike sensations erupt at night. Often it feels as though there is a fireworks show in my brain. The webs feel as though they coalesce, forming thicker, more liquid bodies, rolling rather than shooting. Early on these feelings were accompanied by dramatic changes. Even now, occasional lurches forward in lucidity are not uncommon. Suddenly I would feel as though in a different part of my head. An old, forgotten part of my head. An emotion would surface that I had not experienced in recent memory. Smells would come rushing back, some stirring deep childhood memories. Still, other times, either as part of some manner of flashback, or due to the waxing and waning nature of the healing process, I experience momentary disturbances in visual cognition, pockets of time in which I cannot follow relatively uncomplicated conversation.

The path continues to be significant, challenging me to function in an inconsistent environment, not knowing what the world will look or feel like next week. I know that this is an unsatisfying place to end this installment, but more shall follow when there is more to tell.