A Stitch of Time

by Lauren Marks

  3

  As I flipped through the hefty packet of documents I had been given upon my release from the hospital, it was immediately clear that it still wasn’t comprehensive enough for me. Was I sleeping on the scar correctly? What kind of pressure should I be applying or avoiding? How long did I have to wait before taking a shower? Should the screws be protruding from just below the skin that way? There were just enough rules to keep me out of serious danger, but not enough to help me minimize it during everyday life.

  Mike had returned to Monterey. Jonah had returned to New York. Materson, making the most of his gap year, was off to the Bahamas. I had the house to myself again, and I spent hours soaking in the bath, usually wondering about the proper maintenance of my head. Going through so much trouble and expense, I didn’t want the work to be undone by something as ridiculous as using hair gel too early or picking the itching scar. I needed to talk to a professional. Luckily, my post-surgical consult with Dr. Giannotta was scheduled for later that week.

  Dr. Giannotta’s tie was comic-book blue. His beige slacks and loafers screamed Clark Kent, but the tie, with its geometric patterns and glimmering metallic sheen, was all Superman. He was satisfied with the way the incision was healing, and said I’d have a checkup in July. Another angiogram. Then he went through my questions one by one.

  He said it was safe to exercise again. And if I wanted to return to yoga soon, I shouldn’t do headstands or handstands for the next three months.

  When can I cut my hair?

  In a couple of weeks.

  Can I get on an airplane now?

  No one is stopping you.

  And what about roller coasters?

  Are you kidding me right now? he asked. After all this? His face was so impassive and I couldn’t tell if he was teasing me or not. Grow up, he said.

  •  •  •

  It was the professional opinion of the surgical team at USC that I had undergone two “unfinished” operations—the one in Scotland and the one in Los Angeles.

  They called them “unfinished” because neither one had accomplished what they had set out to do. After the first intervention, the coils had eventually drifted from the walls of the aneurysm, and during the second intervention, the surgical clip couldn’t be set in place. There wasn’t enough research on cases like mine to know what came next—very few people had wrapping on top of coiling—so in many ways, my operation had been successful, but my “success” was conditional. There were two aneurysms in my brain, one that had ruptured and been treated, and another that hadn’t. When an unruptured aneurysm remains in the brain, its risk of rupture increases by .05 percent per year. I certainly didn’t want any more surgeries in my life, but it would always be a possibility.

  And though my language had not been further damaged in the surgery, I still had my lifelong aphasia to attend to, whatever that might mean.

  In an immediate sense, though, I had never paid so much attention to my head. I kept running my fingers over my skull, exploring the terrain that had been added by the surgery and what had always been there. I was like an amateur phrenologist.

  Phrenology is the analysis of the bumps and ridges of a person’s head, a practice meant to deduce inherent traits and abilities. Now debunked as a pseudoscience, there is no legitimate scientist who would trust in the analytic skills of phrenology these days. But the knowledge we have regarding the function and dysfunction of the brain didn’t come to us on a straightforward line. And, in fact, many important figures of modern day neuroscience openly acknowledge the debt their discipline owes to phrenology.

  Franz Gall, phrenology’s founder, was a physician and anatomist who sincerely believed there was a direct correlation between the cranial topography and the actual functions inside the brain. In the early- and mid-1800s, the medical profession considered this approach to be a viable diagnostic tool, and presidents and poets alike consulted phrenologists worldwide. Gall said that the more pronounced the activity in the brain, the more it will be visible on the skull itself. Though this theory was later disproven, it did have significant influence in a sidelong way. Roughly sixty years after the heyday of phrenology, a Canadian neurosurgeon named Wilder Penfield was conducting brain surgeries on patients who needed to be awake so he could accurately pinpoint the source of their disturbances. As a result of this intricate and unprecedented work, he was able to observe which parts of the brain generally controlled which parts of the body. Unlike the phrenologists, who had mapped the outside of the skull, Penfield started to map the inside of it—and he produced something that is still referred to as the Penfield Map. This was a phenomenal leap forward for neuroscience. The brain was divided into specific quadrants, and as scientists started to assign certain functions to these locales, this approach to the brain took on the name localization.

  There were early detractors against the purely localized model that Penfield proposed. Marie-Jean-Pierre Flourens, Jules Cotard, and Sigmund Freud (who was still a young neurologist in Vienna) all voiced their concerns. But they were voices in the wilderness. The prevailing view had become that the brain was overtly mechanical, with a single location, single function model. And although this idea reinforced the discoveries of the language centers by Broca and Wernicke a few decades earlier, it was often disastrous when doctors considered brain patients like myself. The whole principle suggested that the broken parts of us could never be repaired.

  It took more than a century to allow for a more flexible approach to the brain to be taken seriously. In the 1960s, Paul Bach-y-Rita was already an esteemed scientist with expertise in medicine, neurophysiology, and psychopharmacology. His father suffered a debilitating stroke in 1965, losing his ability to use half of his face and body and some language. Very slowly, and with a lot of assistance, his father recovered many of his former capacities, eventually able to return to teaching at the university level and do some mountain climbing, too. Since brain scans did not yet exist, it was only after his father’s eventual death years later that Paul Bach-y-Rita was able to appreciate what had actually happened in his father’s recovery. A colleague of his had done his father’s autopsy and insisted that Bach-y-Rita look over something totally unexpected in the brain sample. He was very reluctant to examine any part of his father’s remains, but suddenly realized why he was being consulted about the matter. If following a localization model, this kind of large-scale recovery could only happen if the senior Bach-y-Rita had never sustained very serious damage to his brain initially. But that was not what the young Bach-y-Rita was seeing under his microscope.

  In Norman Doidge’s The Brain That Changes Itself, Paul Bach-y-Rita explains, “Major brain centers in the cortex that control movement had been destroyed . . .” adding there still was, “a huge lesion from his stroke and that it had never healed, even though he recovered all those functions.” This sparked a revelation in the scientist, who says that in this moment he became aware that his father’s brain “had totally reorganized itself.” These changes in synaptic connections and neural pathways, which could then manifest as changes in behavior and ability, challenged the very idea of the organ as immutable. This perspective of the brain came to be referred to as neuroplasticity.

  To be very clear on this point—localization and neuroplasticity are not mutually exclusive. Localization provides the most basic understanding of the brain/body connection. And neuroplasticity shows the ways in which flexibility can be inserted into these systems.

  It is likely that I was the beneficiary of many neuroplastic changes throughout my recovery. That would mean that some of the speech and language areas of my brain were actually destroyed in my injury, and nontraditional areas of the brain took on their workload. But even though there have been tremendous advances in the years between Bach-y-Rita’s stroke and my own (including the advancements of several types of brain imaging), even the most sophisticated scans can still fall short. If someone wanted to accurately track the neuroplasticity in a single person, the m
ost optimal way would be to have brain imaging made before and after a stroke, for a real basis for comparison. But since strokes are often unexpected, this is very rarely possible.

  For a variety of reasons, I have never been able to adequately discover the extent of the neuroplastic changes in myself—or, at least, as they might appear on brain scans. This means I can only ask questions in a more broad, philosophical sense, like: Why would I have continued to improve after the ruptured aneurysm when so many people in the same situation do not?

  And I think the answer to such a question is probably quite layered. First, the speed of my initial treatment was key, in addition to the fact that I was cared for by medical professionals with the highest level of expertise. Second, the support of my family was invaluable, affording me ample space and time for my rehabilitation. Third, I was younger than many stroke survivors, which has its own recuperative advantages. And some specialists I have consulted with over the years have even speculated that my background in performance or academia, or both, might have contributed to an unusual skill set that I could draw on as a hidden resource, like a cognitive reserve. Or maybe my injury was never that profound in the first place? But as far as I can tell, there is no way to test this.

  As a discipline, neuroscience is still only in its earliest stages. This means that I will always have many unanswered questions about myself. Even though I was taking authority over my own body after the craniotomy, and slowly taking control of the ways I might be able to analyze my progress with my language disorder, this didn’t change the fact that I could not know what was actually happening inside of me on a cellular level. Could never know. And actually, I find that a little delightful. Perhaps it will only be a neuropathologist, handling a few slices of my lifeless brain, who will be the first person to understand what progress really meant in a case such as mine.

  4

  In the weeks after the surgery, I got to work thanking everyone who had been reaching out to me. At the end of every note, I drew a sketch of myself with my stitched horseshoe scar. I thought the cartoon was cheerful, but my mother told me that some people might find the drawing a little ghoulish, so I went back to signing my name instead.

  BJ called me midtask and asked how I was adjusting to life outside of the hospital.

  It’s normal, I guess. Everything is incredibly normal out here.

  You sound disappointed! he said. What were you expecting?

  I wasn’t at all disappointed—my relief was beyond measure. But it was odd to be on the other side of this surgery. My parents and I had spent so much time fixating on it, preparing for it, and now it was simply over and we had been spared all the possible catastrophes we had steeled ourselves for. My cousin Spencer was improving, too. He had been the center of widespread family concern after partially shattering some of his vertebrae on his spinal column in an off-roading motorbike accident many months ago. Like my parents had done for me in Scotland, his father had moved in with him to help with the rehabilitation. After undergoing an experimental neurosurgery on his spine, he was walking again, and he impressed everyone when he returned to work. But progress was slow. I didn’t know how Spencer was dealing with his own medical concerns and—in spite of our strangely similar experiences—I hadn’t reached out to him.

  Our family was relatively small, and for several years, Spencer and I were the only grandchildren in it. I suspect our neurological struggles were too overwhelming, and too internal, to even think about reaching out to each other in the months after our injuries. But he would be visiting LA in a few weeks for business. If I wanted to, I could ask him about his life post-injury in person.

  But when it came to my own body, it was hard not to feel strangely adrift.

  How is your family doing post-craniotomy? BJ asked. Decompressing?

  Not exactly. I laughed. They’ve just moved on to other minor crises.

  Does this mean you are ready to come back to New York? He sounded hopeful. Not trying to rush you. But, I mean, what happens now?

  It was something I had to consider.

  The Girl I Used to Be had built up a life for twenty-seven years. The Woman I Was Becoming had only eight months under her belt. And these two lives existed in patches and scraps, divided in separate heaps, on two different coasts. Maybe now it was time to lay all the material out in front of me, to see what could be sewn together, and what would be discarded.

  Following the Scottish procedure, everything I did had been focused on the immediacy of my medical and therapeutic interventions. Speech therapy, language rehabilitation, even the craniotomy. It had all been putting out fires. The period after the second surgery didn’t have to be so reactive but proactive. My spoken language was better, my ability to read was improving, which meant my capacity to learn and synthesize more information was promising, too. The surgeon had warned that I might make a significant linguistic backslide as a result of the operation, but I expressed my glee of proving him wrong in my journal.

  I was able to write much before the surgury. There In writing, there is some amount of remedy and there is another amount of poison. But here I am. Lucky again. Sentences, and paragraphs, at the ready. I didn’t know Iwhat would happen in the surgery, in the percentiles? Lose language, lose my life? But I woke up on started cussing up a storm.

  But it became clear that the path forward required looking back a bit. It seemed that whatever I wanted to pursue, I might benefit from knowing more about what had already taken place in my life. What could I still do, and how could I do it? Could I ever return to the life of The Girl I Used to Be? And would I even want to? I took a quick physical inventory. . . .

  Today (2 weeks since brain surgery)

  • still no period (8 months)

  • no job, no swchool, no apt

  • a scar from ear to mid forehead

  • a sliver of blood in my L eye

  • not much super glue on my scalp

  • a tingling plump lip (sexy. plus)

  • no swimming

  What happened now? I wondered. The psychic inventory was not so easy. There was such an enormity in that question that I wasn’t able to even approach yet, but I did scratch out the first and only idea that came to my mind:

  start the memoir.

  5

  It was the first Wednesday of May, which meant that the peace and justice workers across the street would be meeting for oatmeal. Though most of the members of the group hadn’t seen me since the surgery, my neighbors, Russ and Gloria, had checked on me soon after the operation, a little surprised when I had answered the door myself. They handed me some cupcakes and I assured them the black eye wasn’t as painful as it looked. I promised them I would be at their next meeting. It had become somewhat of a ritual for me. When I walked through the door on the day of my return, I was quietly congratulated on the surgery’s success. But the attention did not last for long. Today’s focus was Bob.

  Bob was one of the senior members of the group, who had come in that day with his wife. Between passing berries and multi-grain toast, I noticed how everyone in the room was tailoring their stories to Bob. How they met him, how his service had inspired their own. They talked about the variety of ways he changed the courses of their own missions. I went into the kitchen to refill the creamer, and Gloria snuck in to chat with me.

  We should have prepared you for this beforehand, she apologized. Bob has been with us for years, and his health has been declining pretty dramatically. He’s not long for this world. And . . . well . . . we all wanted to do a little something for him, you know? To celebrate his life.

  It was a living wake. The whole thing reminded me of the e-mails people had sent to me in Scotland, which my parents had read aloud. There were plenty of notes of admiration or encouragement. But a lot of other e-mails had a kind of finality to them, as if it might be the last time the letter writers would ever be able to reach out to me. There was one from my first love, Jason, a lush assemblage of our two years together—the avoc
ados we ate, the art we admired, the ways we once planned to discipline our future children when they were bad. He mentioned that our relationship wasn’t always perfect and it hadn’t ended well, but we had laughed a lot, and more than anything, we were each other’s first loves. No one could take that away from us.

  The letters were unusually direct. As people, we don’t often face one another and explicitly say: you have made an impression on me. My life is different, and better, for knowing you. I hadn’t appreciated the gift of these letters when they had been sent to me initially. It wasn’t that I disliked hearing from people, but at the time, the memories they shared just did not elicit an emotional reaction in me. Later, though, I would come to treasure them.

  Now, I wondered how Bob felt, with his friends around him, reviewing his life as they knew it. He was probably aware of why he was being singled out for this attention—was he annoyed or scared, grateful or curious? Was he indulging his inner Huck Finn, in the rafters of the church at his own funeral? I didn’t ask. His wife told me that Bob’s words had become fewer and fewer. Was it progressive aphasia, like Emerson? I tore out an empty journal page, jotted down the name of my speech therapist, and handed it to her.

  Don’t know if it would help, I said. But in case you need it. It was a small gesture, but it was the least I could do for the community for which I was so grateful.

  I am an honorary grandparent. Mainly, Montday through Friday, I am alone in my attic. I when I do see people, I see old people. My Grandma and her friends Or the member of the peace and justice group next door, first Wednesday of the month. Most of those members have 30 years at least on me. But grandparents I know and I have a lot in common. I have our days to ourselves, filled with thoughts and tinkerings. G The grandparents and I share stories of surgeries and share scars, actual and metaphorical. Grandparents and I look a bit iat the world outside with a bit of bewilderment. The fray doesn’t seem to miss us.