by Lauren Marks
If I could have chosen the details of my closest brush with death, they wouldn’t have included a seedy stage, a gay bar in Edinburgh, or a karaoke night. And I would have selected something a little more dignified than a nose-dive in the middle of a cheesy 1980s power ballad. But it was the role that picked me. Now, I realize that I could have blacked out anywhere. On one of my solo ventures into the streets of Paris without Krass. Or in my New York apartment, when my roommate was out and Jonah and I were taking a night off. Considering all the possibilities available, Priscilla’s Bar was not at all the worst place to have an aneurysm rupture. Because if I had been somewhere alone, I almost certainly would have died alone.
There is at least one virtue in falling from a stage—one I never would have thought of before. If you are in front of an audience, there will be someone there to see it. There might even be someone to help you up.
• • •
It’s difficult to pinpoint the role language plays in our memories—I certainly can’t. Ongoing studies of the brain will probably yield fascinating insights into these dynamics at some point. Until that time, I live inside this curious little paradox: my pre-rupture memories are much clearer to me now than they were soon after the aneurysm’s rupture, but more time has passed from actually experiencing these events. This means that even though the memories may feel sharper and better defined to me now, other aspects of them are going through the natural process of deterioration.
Writing things down makes this only more complex. Am I remembering an event, or am I actually remembering something I wrote about that event? There is a strange boundary between recollection and creation, too.
And these days, I find ideas of “the right place” at “the right time” deeply uncomfortable. To feel faithful, or to sense the working of a kind of fate in your life, comes with a significant ethical catch, because it is not accounting for the people in the same situation who didn’t have such good fortune. Why did I live through a ruptured aneurysm when so many in the same situation don’t? Why did I recover so much language when so many cannot? I know people personally who have worked harder and longer at this than I have, people who are more intelligent, and probably more deserving, who haven’t been able to achieve the kind of fluency I have.
All survivors ask questions like these, though it is a peculiar thing to investigate too much, since it is a temporary situation. I still have two aneurysms in my brain and always will. They will be the cause of my demise or they won’t be, but regardless, I won’t remain a “survivor” forever. No one gets a pass on death.
Still, there is a great indignity borne by some, which is entirely escaped by others, and this justice is not evenly divided. Money, resources, and privilege all factor into this inequity. Unfortunately, when well-meaning people insert a spiritual dimension into conversations about things like this, they often only complicate the matter. When people say things like “all is as it should be,” or “everything happens for a reason,” they tend to unwittingly highlight the cruelty of these imbalances. And the person administering these platitudes is all too often the one who has been entirely spared from this suffering.
With all of that in mind, how do I address a thought pattern that has played out in my own life, one that I cannot so easily dismiss? Because when I believe in order, order appears. When I believe fate exists, I see its workings everywhere. I can’t always muster these senses of the world, sometimes lasting, sometimes fleeting. But I find both of these states of being equally fascinating. And the fact that my sentiments shift back and forth, unable to fix themselves on a single judgment, is comforting in its own way—this is a mirror to the brain itself. It’s not that I don’t have fear or anxiety or frustration these days. I certainly do. But experiencing how flexible my sense of self can be, and the variety of thought patterns that can play out inside my skull, emphasizes the relativity of it all. That makes it a little easier to shepherd my own thoughts. I try to nourish the ones that are productive and helpful, and starve out the ones that aren’t. The Quiet is no longer my baseline, but it is something I try to nurture, and the moments when I connect with it feel sacred, if not sublime.
The human trait of leaning toward faith may simply be a delusion, or a bug in the machine, or an evolutionary adaption for the preservation of our species. After all, it is much easier to live in a world when you can see certainty amid chaos. But if this is only a slight of mind, I’m still grateful for the neural mechanisms that produce it. Human beings meta-cognate—we can think about our thinking. We concoct stories. And when we do that, we get a chance to cast ourselves in leading roles. That is just what our brains do. There are so many systems around us that don’t easily follow our personal laws of narrative, or obey our senses of fairness. Yet the brain compulsively searches for meaning, regardless. The fact that a mind, any mind, could produce a sense of faith, or that a person can feel fateful in spite of the churning turmoil that surrounds them, is a miracle in and of itself. What could be more divine than that?
23
SPRING 2009
I sat down in Dr. Catherine Jackson’s lecture hall on the campus of California State University, Northridge, my first classroom experience since I had left my PhD program. Even then the prospect of keeping up with the workload was daunting, and I was right in anticipating that difficulty.
I’d met Dr. Jackson through my friend Betsy’s father while I was on a visit to the department of communication disorders. He informed me that Dr. Jackson was writing a book about young stroke survivors. We met at a restaurant soon after, and it was instantly clear that we had many overlapping interests. She wanted to understand more about communication disorders from the patient’s perspective, and I craved more clinical information about aphasia, which I had felt disconnected from because of my own linguistic weakness. Dr. Jackson laughed easily and without abandon, and I liked being in her company. It didn’t take long before I confided in her about a conundrum with which I was struggling. I felt that though I had rebuilt my vocabulary and skills, I wasn’t even close to the level of language recovery I wanted. If a full recovery was never possible with aphasia, when should I consider myself recovered enough?
It’s a good question, she said. Recovery looks different for different people. For someone who wasn’t interested in language in the first place, they sometimes feel like their language is as good as it will ever be in the first months after their stroke. But someone who made their career in words? Who is to say when they are recovered enough?
This statement surprised me, and actually, it completely reframed my own sense of trajectory. This was an internal problem, so I wouldn’t find an external solution. I would just have to keep doing what I was doing as long as progress was being made.
During the course of the discussion, Dr. Jackson looked through my journals a bit, and we asked each other questions. The lunch hour came and went, but we were still talking, and we had not at all exhausted our interest in each other. She mentioned that she taught a graduate course in aphasia. She asked me if I might be interested in auditing it.
I accepted her invitation without hesitation, but was nervous, too. How could I possibly keep up?
She promised to make all of the reading materials accessible to me, and attending classes and listening to lectures could supplement the readings if they became too difficult. And I could ask all the questions I wanted, just like any other student. She had only a single condition: I didn’t tell anyone that I wasn’t a student enrolled in the school.
It’s a quirky request, she admitted. But I think these grad students need to see that someone with aphasia can look just like them. You can sit among the class as a student, and then you can later address the students as a guest lecturer.
The idea couldn’t have pleased me more.
• • •
When it came to schoolwork, the smallest parts of sentences often escaped my first read. Words like of and for disappeared from the page, which was hugely prob
lematic in scientific texts, because missing them could mean the difference between understanding a cause or an effect. Whenever possible, I bought digital textbooks and enabled their “text-to-speech” functions. I had the books and articles read aloud to me, so I could listen and listen again. I read and re-read. I made prolific notes in the margins. Though it was a lot to take on, it was revelatory as well. I was seeing a personal experience through the lens of academic study, and realizing that issues I’d assumed were unique to my case were not so strange after all. It was like finding some old family album and seeing a portrait of a relative you have never heard of, but who shares a noticeable resemblance to you. I suddenly recognized myself in a much broader context. Dr. Catherine Jackson couldn’t possibly have known, but she was igniting a fire inside me, a desire to explore all of the medical, therapeutic, and academic implications of this perplexing condition. It was in her classroom that I started to acquire the skills I needed to engage with this sort of material in the future.
On the final day of the course, I took my place at the podium. I began to read a journal entry from September, approximately one month after the rupture.
I could almost remember writing this, and what I was thinking as I did so. I was recognizing the strides I had made since waking up in the Scottish hospital—from not being able to identify if a book was written by Agatha Christie to being able to actually read the title of a book I had no exposure to previously. Little did I know how much work I had yet to do. Still, I had already experienced a substantial return of my former abilities, and here, even at this very early stage, I was explaining that language wasn’t an issue for me anymore. 3 Weeks, no problem, I had written. Remarkably, and mistakenly, I assumed my recovery was already over.
It was a splintering experience. It begged the question: If I was like that then, what must I be like now, and what would I be in the future?
At Cal State, Northridge, it was my first time speaking in front of an audience like this, but the students looked rapt. And the Q&A went better than I could ever have hoped. I was grateful to discover that other people found these linguistic issues intriguing, too, and I no longer felt I had been wasting my time wondering about them. It gave my confidence a needed push, the confirmation that it might be worth it to keep pursuing my interests in this way.
Afterward, a girl with a shiny mane of hair came up to me. She didn’t expect me to remember her, but she explained that we had been at NYU together, in the same small sub-division of Experimental Theater. We worked on a production of Orpheus Descending, she reminded me.
It was a Tennessee Williams play, not the Greek myth. But it struck me that the ancient Orpheus was a fitting enough analogy for my post-rupture life.
How utterly bizarre, she said. We met in theater school in New York, almost a decade ago, and then our next encounter is in an aphasia graduate class in Southern California. Only after I’ve changed careers. Only after you acquired the kind of brain injury that I happen to study now. It’s kind of crazy.
I agreed; meeting this way, after all this time, did feel a little uncanny. There might not be such a thing as a “path,” but it was in moments like these I felt I was on it. I had been plumbing the depths, trying to resurrect something dear, and in the end, there would be a lot that I would have to leave behind. And like Orpheus, I was bathed in sunlight again, with no going back to where I had come from. But I was a little more sure about what direction I could head toward.
There might be a hidden sense in what initially appears to be senseless, a brilliant kind of order that is invisible to most of us, most of the time. But ultimately, I know that everything doesn’t have to happen for a reason. We are more than capable of creating that reason for ourselves.
EPILOGUE
RETURN TO EDINBURGH
I didn’t go to the moon, I went much further—for time is the longest distance between two places.
TENNESSEE WILLIAMS (Tom, in The Glass Menagerie)
NOVEMBER 2012
I had always planned to return to Edinburgh, to visit the hospital that had treated me and spend some time in the town that gave me another life. I just hadn’t realized how long it would take to get back there—five years and some change.
When I made arrangements for the trip, I thought of the people who had populated the city for me before. BJ and Laura, on our short-lived tour. Jonah, after the rupture. But now BJ was finishing up his final year of medical school at Yale, Laura was working on a farm in Northern Massachusetts with her partner, and Jonah and I had fallen out of touch. We had tried to stay friends, but when both of us started dating other people, a close dynamic was too tricky to maintain.
Jonah wasn’t the first person I had loved, nor would he be the last. There was also the man who would become my husband. Sev and I met in 2011, while I was traveling abroad for a friend’s wedding in Beirut. Though he had pursued his PhD in Chicago, he wasn’t from the US, and he wasn’t living there at the time. There were plenty of logistical challenges in the beginning, but he was soon offered a job in London and we moved in together in the UK. Our courtship had spanned three continents, and eventually our son, Isaac, would be born in a country foreign to both of his parents. Though Sev’s English is exceptionally good, Armenian is his first language, so I still joke that no one in our household will ever acquire a mastery of American idioms. And after our move, Sev and I tackled a new linguistic challenge of learning all of the new Britishisms, too. But being located in England made it easy to return to Scotland in 2012.
The architecture of Edinburgh’s Waverley Station was all glass and stone, full of wide corridors with large swaths open to the elements. There was a dramatic difference, I realized, between the temperatures in Scotland in November and the temperatures in August. As I stepped off my train, I could see every breath I took.
I had traveled by myself, but Alan Paterson was there to greet me. Our families had grown even closer over the years, and their home was much as I remembered it, although Materson had started and finished university by that point. He now had his own place in London. Alan still had the hectic workload of a professor, and Alison had added on even more responsibilities as a teacher and administrator, so their piles of papers were still in every room. The drawers in the kitchen still stuck. And I noticed that the burn mark made by my mother’s dropped iron remained emblazoned on their carpet.
Alone on the streets of Edinburgh the next day, I wandered spectral routes. Edinburgh calls itself “The Festival City,” and though the Fringe wasn’t going on at that time, there was a lively winter fair set up in the center of town. Past the Scott Monument, I navigated through the stalls filled with knit hats and braided necklaces, the air suffused with the smell of sausages and mulled wine. I found my way to the stone stairway that led up the hill in the direction of the Royal Mile. I did eventually stumble upon the theater we had used during the Fringe, but it had been returned to a simple church basement.
Before making the trip, I had been in contact with Anne, my former speech therapist. She seemed overjoyed to hear from me. Though I had expected to visit her during office hours, she said we could meet at the hospital, but after I had caught up with my former nurses and doctors, I could just come home with her and she would make me dinner. I took her up on her generous offer and went to the hospital the day after my arrival.
It was lovely to have an opportunity to meet Dr. Salman, the consultant neurologist who managed my case. Though I had hardly known him in the hospital, my parents remembered him as being inexhaustibly patient with them, responsive to their questions long after my discharge, and he remained in e-mail contact with them for more than a year. Unlike the neuroexperts I had interacted with in the US, he looked directly in my eyes when we spoke and was engaged and reflective with my questions. He was even kind enough to introduce me to the neuroradiologist who had actually operated on my brain. Afterward, I visited my old room with the bed by the window, and handed out chocolates to my former nurses on the ward. Then I l
ooked around for Anne’s office. Soon, we were on a bus together, headed to her home. She told me that she’d been so happy to work on my case all those years ago. Many of her patients in the hospital needed help breathing or swallowing and it was somewhat rare that she was able to even start speech exercises with them.
I am so glad you decided to come back to Scotland, she said. Even after such a distressing experience.
It made sense that Anne thought of my circumstances this way, but I wanted to finally set the record straight, and began by taking issue with the word distressing specifically.
Actually, I think that whole period after the aneurysm’s rupture was much more upsetting for those around me, I explained to her. In fact, most of my memories of the hospital aren’t bad at all.
Oh no? Anne was surprised. But you seemed to get so frustrated sometimes. . . .
That was probably true, but I told Anne that left to my own devices, I was usually pretty content. Blissful even. The things that most disturbed my equanimity were often initiated by other people, who were—ironically—motivated by their concern for me.
Anne seemed to consider my comment seriously, and then explained to me that speech and language therapists are often stuck in a very difficult situation. Just because someone couldn’t communicate effectively didn’t mean that you should speak to them as children. But when you think of them as adults, as people just like you, your empathy engages. You imagine yourself facing such an appalling situation. Sometimes, this thought experiment accurately corresponds with the patient’s experience, but then there is the inverse situation, too.