by Lauren Marks
When we assume people will feel uncomfortable, we then start to see them as uncomfortable without realizing that we might be the source of their discomfort, Anne said. Expect the worst, the worst can settle right in.
I nodded my approval.
Over dinner, Anne introduced me to her live-in boyfriend, and we crowded around her kitchen table, talking and laughing over her homemade marinara sauce.
Before I left, Anne handed me a Christmas present she had wrapped for me. Inside was a tartan coin purse. The attached card had a photo of the city under a clear sky.
To remind you, she said. It’s not always raining in Edinburgh.
• • •
A few days later, I went to Priscilla’s Bar, though it was no longer called that. And it wasn’t a dark hole in the wall anymore. It had been painted a stark white, inside and out. Gone were the cigarette machine and the man in the wheelchair with his dog. The column near the back remained, minus the pole dancers. But the stage was still there. So was the karaoke machine.
I had imagined I could linger in the shadows for a while at this place while I built up the courage for conversation. But, this bright blank box overemphasized the fact that I was the only customer. A woman with long black hair and thick eyeliner was hanging Christmas decorations when I came in, and she sighed as I sat down at a stool. She had clearly been hoping the place would stay empty for a while.
She placed herself behind the rows of booze and asked me what I wanted. I should have thought about this ahead of time, but since I hadn’t really come here to drink, I didn’t have a preference.
Umm, er. Well. What about you? I asked. What do you drink here?
I don’t drink here, she clipped. It’s illegal to drink while you’re bartending.
She tapped her pale, spindly fingers on the bar impatiently.
The only thing I didn’t want to order was whatever I drank the night of the collapse. But I couldn’t remember what that was, so I just ordered something I never asked for: a White Russian. The bartender said she would have to look around to see if she had any lemonade.
The only ingredients I knew in a White Russian were milk, Kahlua, and vodka; at least that was the American version. I didn’t want to know where lemonade could feature in this mix, and the very idea of it made me suppress a gag. I canceled the order. If my presence in this bar had initially been registered as an inconvenience, I was being upgraded to a full-blown irritation. I blindly pointed at the first Scotch whisky I saw, hoping to stop offending my host. After a few sips, I was able to form the question I’d been itching to ask.
So, I began. Do you know anything about the bar that used to be here?
The bartender said she had bought the place only recently. She was fixing it up and rebuilding the clientele. Why do you ask? Have you been in Priscilla’s before?
Relieved that I didn’t have to bring it up unprompted, I told her a dramatically condensed version about what had happened in this bar on that very stage.
When I finished talking, the woman seemed to warm up to me a little, telling me that she had a friend who had an aneurysm rupture years ago. Thank God you’re still alive, she said, knocking on the wooden part of the bar. But after that brief burst of warmth, she walked away and went back to hanging garlands.
What did I hope to accomplish here? It wasn’t even the same place. The staff had turned over. I couldn’t ask anyone if they remembered a girl who collapsed in 2007, let alone if they had put aside her shoe for safekeeping. I drained my whisky and got up.
Can I bother you for one more second? I asked the owner. Could you take a picture of me on that stage?
She begrudgingly got down from her ladder again, and used the camera I handed to her.
After she had taken the photo, I glanced at the digital shot. My body looked seriously stiff, my eyes alarmed. I wanted a redo. So I went back on the stage to take another picture, and this one I took of myself, in which I had a little more composure. And as I was climbing back down, I noticed that the platform was only raised a foot from the bar floor. Not a treacherous distance at all. This compelled me to take a photo of the offending step itself.
The bartender became visibly agitated. What on earth are you doing? she asked. What are you playing at?
Confused by the dramatic shift in her tone, I started to stutter.
I to . . . Uh . . . I to . . . told you. Right? Yeah? Didn’t I? A p-p-picture of the stage?
The bartender eyed me with suspicion. She said that my behavior had been far too peculiar for her liking. Was I trying to establish a lawsuit? Because if I wanted to sue somebody, she was not the person to sue.
Stunned, I continued to stumble over my words. Though I had gotten so much language back, it slipped when I got nervous. It was clear I was not going to be able to convey the message I wanted to get out: I am just here for this stage, lady. Me and this step, we have a history. Floundering more, I tried to explain to her that I was a writer. I just wanted to return to this place, so I could be able to write about it at some point. But I didn’t want this part of the story to end on this miscommunication. Only after I convinced her of my actual intention was the threat between us defused, but it was hours before I returned to the Patersons’.
• • •
It was late when I came in, but Alison was still up, hunched over the computer keyboard. Her weary eyes glistened as she asked about my night. We laughed over my well-meaning but poorly executed bar visit, and I was starting to head to the guest bedroom when something between the desk and the bed caught my eye.
Are those your books over there?
She said she wasn’t sure. She assumed they were her son’s because they’d been there for ages. If you saw something in there you liked, she said, you are welcome to take it home.
I moved closer to the stack, which felt like walking toward a mirage because I had glimpsed something that I never expected to encounter again. Gathering dust, it must have been resting on that bedside table undisturbed for almost six years. I had no idea how it left the hospital. Maybe I took it? Maybe someone picked it up for me?
It was Cloud of Sparrows.
My present vision started to align itself with the one from my memory, two images next to each other, attempting to fuse. I looked for the birds and the man with the telescope, gazing at points beyond. The colors were intensely familiar, as was the font on the front, and the birds were still in flight. But it was the man who I had the most trouble recognizing. The figure was in silhouette, as he had always been in my memory. But his stance was much more active than I recalled, his right leg bent in a deep, almost ninety-degree angle. And, most importantly, the figure didn’t have a spyglass in front of him. He had a sword behind him. The man was ready to strike.
Of course, I was curious what the book was actually about, and whether I would even like it. However, there was something much more to this than the content between its covers. This was a physical object that, until that point, had only existed in my mind. I had plunged into the fog of memory, foraged through an intangible past, and somehow plucked out this article, this matter, this Thing that I was actually holding in my trembling hands. It was not that surprising that I had gotten some of the details wrong. But I had gotten the name right. I couldn’t have been wrong about everything.
• • •
Over time, I’ve stopped making large distinctions between The Girl I Used to Be and The Woman I Have Become. Instead, I acknowledged the multiplicities. The person who drank wine on a rooftop in France was (and was not) the same person who opened her eyes in an Edinburgh hospital, who was (and was not) the same person who was writing about those places on a desktop in Los Angeles. Or Beirut. Or London. It is a continuum of selves. I cannot promise that I am much like the person I was five years ago, or fifteen years ago, or that I will be the same person fifty seconds from now. But I know experiences like this are not limited to people who have had brain injuries. Anytime we talk about our chi
ldhood, or any other distant period of our lives, we have to accommodate multiple versions of ourselves—even though we don’t sound, or speak, or even think, like these people anymore. My changes were more swift than many. But we all contain these kinds of multitudes.
We are rarely prepared for the next stages in our lives, and we lurch forward into positions we are not equipped for, without the expertise we might sorely need. With that in mind, perfection can never be the goal. But fluidity might be. And sometimes without exactly realizing it, in the process of doing what we are doing, we become the people who are capable of doing it.
Language was both my injury and the treatment of that injury, and in many ways, I have been writing my way back to fluency. I suspect I will continue to keep reaching out for language, even when it falls short. Speech, overt or covert, can be such a gift, but sometimes it is at its best when it isn’t being used at all.
How beautiful a word can be. Almost as beautiful as the silence that precedes it.
AFTERTHOUGHTS AND SUGGESTED READING
We lose ourselves in what we read, only to return to ourselves, transformed and part of a more expansive world.
JUDITH BUTLER
Though at the time of writing this final section it has been nearly ten years after the rupture, I feel that my interest in the brain is still at the level of a beginner. I am absorbed more with its cognitive aspects than cellular ones, more interested in manifest behaviors than chemical reactions. I have taken a couple of courses over the years, but my understanding of neuroanatomy and neuropsychology is rudimentary at best. I see memory as a profoundly social thing—language, too. Both involve a lot of collaboration. We build on one another’s language as we build on one another’s recollections, and we remember different things when different language is employed.
For a long time, when my family and friends told me stories of our “good old days” together, I couldn’t be an active participant in the communal yarns. But now? I have more points of reference and I can take part. I don’t just remember the stories, but also remember the tellings and the retellings. Sometimes, I’m able to initiate these stories myself. Language rehabilitation is not a seamless process, and I didn’t get everything back. Evidence suggests I never will. Still, I continue to see linguistic improvements. Every year, my speed and fluency get better. It’s become easier to recall lines from movies or plays, or banter with a very opinionated friend. I’ve been able to tell a joke that had an actual punch line. Many people who live with aphasia report similar improvements, even decades after their injuries. Unfortunately, there is still a widespread assumption in many sections of care that an individual’s ability to progress in their language just stops at a given time, and many doctors and insurance providers will say that very little can improve six months after the onset of aphasia. This couldn’t be further from the truth. Very slowly, people in the neurological community are reconsidering the time frame of language rehabilitation.
I want to make it very clear that my aphasia has never fully gone away and it never will. I also can’t gauge how much of my inner speech came back post-stroke. I don’t think it is at the level it used to be—or maybe I just won’t let that happen—because I don’t welcome its many negative and self-defeating aspects. But, in recent years, another voice has joined my linguistic mediations: I have text-to-speech software installed on my computer, my smart phone, and everywhere it is available. This enables every word on a screen to be read aloud to me. I use this function when I read other people’s words, but need it just as much for my own writing. Without this compensatory strategy, words on a page can still disappear or warp, and often, essential information is lost in the process. So I type by hand, and I edit by ear. This software is a game-changer for a lot of people with language disabilities and has enabled me to do what I do, but it should go without saying that listening to every word I read and write dramatically increases the amount of time it takes to finish something. It is possible that I might be able to live without this software, but I am also 100 percent sure that I wouldn’t have been able to write a book without it.
• • •
I mentioned earlier that there aren’t a lot of books written by people with aphasia (with some notable exceptions), and this discrepancy carries over into academia since people with aphasia are rarely included in scholarly papers. Their voices are woefully underrepresented in studies, even those dealing with language.
When I was able to access academic reading materials again, I often found myself aligning with people who put forth cognitive models like linguistic relativity, which deals with how language directly affects thought. This view of language’s role in the brain started to shift when I met more people with aphasia. Once I joined this wider community, I realized that other people didn’t always have the same issues that I had. And the more people I met, the more I saw abundant awareness, strategic thinking, resourcefulness, individuality, humor, compassion, and Theory of Mind reasoning, even with little to no language. I had long suspected that my language disorder permeated almost every part of my mind. Maybe it did play that kind of role, but it’s also possible I misunderstood that phenomenon even while experiencing it, and my perception of its role infused the rest of my reality. Regardless, I would never want my opinion on linguistic relativity to be the sole reference point for a discussion on how language works in the brain, mostly because I am compelled to write in defense of my own community and its highly unique members. There are so many people with aphasia, and my experiences with this condition should not be assumed to be anything like theirs.
There were many sources I consulted for the writing of this book that didn’t make it into this final text, but were still immensely valuable along the way. I want to direct interested readers to them here.
ON MEMORY
In an early draft of this book, Elizabeth Loftus appeared a lot, and though she is no longer quoted in here, her memory research was incredibly influential for me. She has written several insightful books, but I’ve found some of her journal articles just as revealing, including:
Loftus, Elizabeth. “Make Believe Memories.” American Psychologist 58, no. 11 (2003): 872.
———. “Our Changeable Memories, Legal and Practical Implications.” Nature Reviews, Neuroscience 4, no. 3 (2003): 231–34.
Loftus, Elizabeth and H. G. Hoffman. “Misinformation and Memory: The Creation of Memory.” Journal of Experimental Psychology: General, 118, no. 1: 100–104.
Loftus, Elizabeth and J. E. Pickrell. “The Formation of False Memories.”
Psychiatric Annals 25, no. 12 (1995): 720–725.
Two other journal articles, from other authors, deserve special mention too:
Garry, Maryanne and Kimberley Wade. “Actually a Picture Is Worth Less Than 45 Words: Narratives Produce More False Memories Than Photographs Do.” Psychonomic Bulletin and Review 12, no. 2 (2005): 359–366.
Wade, Kimberly, Maryanne Garry, J. D. Read, and S. Lindsay. “A Picture Is Worth a Thousand Lies: Using False Photographs to Create False Childhood Memories.” Psychonomic Bulletin and Review 9, no. 3 (2002): 597–603.
And Oliver Sacks has written about the limitations of memory, examined from his own life.
Sacks, Oliver, “Speak, Memory.” The New York Times Review of Books (February 21, 2013): http://www.nybooks.com/articles/2013/02/21/speak-memory/.
See also this book:
Fernyhough, Charles. Pieces of Light. London: Profile Books, 2012.
ON NEUROSCIENCE, NEUROANATOMY, NEUROSURGERY, AND NEUROPHILOSOPHY
Costandi, Moheb. He writes the always-fascinating “Neurophilosophy” column for The Guardian, and is also the author of 50 Human Brain Ideas You Really Need to Know. Quercos, 2013.
Diamond, Marian, Arnold B. Scheibel, and Lawrence M. Elson. The Human Brain Coloring Book. New York: Barnes & Noble Books, 1985.
Goldberg, Stephen. Clinical Neuroanatomy Made Ridiculously Simple. Miami: Medmaster, Inc., 1979.
Luria,
A. R. The Man with a Shattered World: The History of a Brain Wound. Cambridge: Harvard University Press, 2002.
Marsh, Henry. Do No Harm: Stories of Life, Death, and Brain Surgery. London: Weidenfeld & Nicolson, 2014. An entire chapter devoted to aneurysms.
Ramachandran, V. S. The Tell-Tale Brain. New York: W.W. Norton & Company, 2011. He includes some fascinating discussion about “mirror neurons” in the brain and how they contributed to the foundations of language, and civilization itself.
Sacks, Oliver. The Mind’s Eye. New York: Alfred A. Knopf, 2010. He devotes an entire chapter to aphasia called “Recalled to Life.”
ON APHASIA
Parr, Susie. The Stroke and Aphasia Handbook. London: Connect Press, 2004. Helpful for people living with aphasia and their caregivers.
Tesak, Juergen and Chris Code. Milestones in the History of Aphasia: Theories and Protagonists (New York: Psychology Press, 2008), 109.
And as a final suggestion on the topic of aphasia, I strongly recommend readers seek out the writing of Rosemary Varley, currently at University College London, namely because she is one of the very few researchers in the world who works with profoundly aphasiac patients in her linguistic studies. I didn’t find her research until the very late stages of writing this book, and have to admit I found her viewpoint on language and cognition initially frustrating because it flew in the face of many studies I had relied on up to that point. But after reading more of her work, and meeting with her several times, I found her incredibly persuasive. Not only that, but she clearly believed in the intelligence and agency of her subjects with aphasia. She knew that they could think clearly, even if they couldn’t speak clearly, and she designed her work with that in mind.
Varley questions a lot of studies that are taken as canon in the academic world. For instance, the Spelke/Blue Wall experiments that I so admired. Varley takes issue with inducing this “artificial” aphasia in people, and complains there were no longitudinal studies. What if people actually got better at the tasks with more practice, and just as little language? She also mentions it has been difficult to replicate these experiments. Varley also doubts the paramount importance of language in Theory of Mind reasoning. She and her colleagues suspected that the linguistic framing in most ToM tests was why aphasic subjects often failed at them. When they devised new tests, actually designed with people with aphasia in mind, their test groups improved in ToM tasks significantly above chance. Below is a primer of her work, but of course, there is much more where this came from.