A Stitch of Time

by Lauren Marks

  I was even more surprised at his characterization of my expressive aphasic symptoms:

  “Her mispronunciations and torturing of innocent words are often classic. Like beginning the word ‘socks’ with a ‘c’ instead of an ‘s.’ Or her invention of a whole new and exciting ailment by changing the ‘H’ in Huntington’s disease to a ‘K.’ ‘Did I say it wrong?’ she asks, as I dissolve in laughter. ‘Tell me!’ And I whisper it in her ear, and she guffaws. ‘Let’s try this word later,’ advises Suzanne, knitting furiously. How can something so inherently frightening and frustrating be so hilarious. The only answer I can come up with is ‘LAUREN!’ ”

  As lively and loving as the portrayal was, I found it quite alarming. My dad was suggesting that all of my pre-stroke personality traits were still pronounced in me—I was opinionated, driven by humor, and very much in control. It was as if he had only seen what he had expected to see—or wanted to see. And I got the impression that his desire to entertain his readers was much stronger than his desire to inform them, and as a result, he had left me mistranslated. How could he not recognize the massive medical and linguistic changes I had gone through? Dramatic changes happen in everyone’s lives, but mine took hold with no warning at all, most of them accomplished in a few seconds on a drenched bar floor. One minute I was singing along with a tune, and then blood was irrigating my head, flushing what I once thought of as my identity almost entirely away. Yes, I was revived. Yes, I was a girl again, with the same knuckles and same lips. But not the same girl. Dozens of similar e-mails appeared on the screen, but I was too overthrown to continue.

  My father’s portrait of me didn’t match with the world I inhabited and didn’t hint at the newfound Quiet, which had been at the very center of it for me.

  In my journals, I wondered: Where did the girl from his letter end and the girl I was begin?

  to tell dad off email

  list

  (for him)

  dad to brings up to writing. he

  writing. bough but my experiences story, I g go got him off

  ?

  if was mine

  I didn’t immediately confront my father about what I had read in his e-mail outbox, partly because my mom told me he had stopped sending the notes out, and partly because, like many other incidents, I had mostly forgotten the whole thing. So when my dad invited me to join him on an errand at a Samy’s Camera shop, I was more than happy to tag along.

  As we walked down the printer aisle, my dad fiddled with the digital photo frames and vacuum-packed memory cards.

  Been meaning to talk to you about something, he said. I’ve gotten so interested in all of this stuff you’re going through. This whole language recovery. I guess it started when I was writing some little e-mails, but now I see something really coming together, thematically. Tinkering with the idea of writing about it with some more depth. Maybe even a boo—

  You can’t! I shouted at him. You won’t! I was surprised by my own fervor, but I couldn’t let him finish his sentence—certainly not with that word.

  You cannot write about this. None of this. No more E-MAILS. NO BOOK. NOT EVER.

  Was I making a scene? Or was the volume inside of me mainly produced by the blood trumpeting between my heart and throat?

  How dare you? I hissed. This is not your life. This is mine.

  All of the enthusiasm had drained from my dad’s face, and when I heard his voice again it was kind and low.

  Forgive me, honey, I’m just . . . Sorry. I didn’t . . . I didn’t even think. Of course.

  Over the years, I know that conversations in my family sometimes leaned toward the argumentative. My father and I certainly had not been strangers to raised voices, but even in those moments, that tactic was part of productive debates. That day in Samy’s Camera was different, though. I hadn’t furthered a conversation; I had ended one. I had been curt to a man who had only ever been my advocate. What kind of stranger had I become?

  Did I feel guilty when I confronted my father? Or did that come later, in retrospect? And if I had experienced a surge of pride about mobilizing the right language to stand up for myself, I can’t exactly recall that. As the words had been pouring out of me in that moment, they had been as unwieldy and sticky as hot pitch, but they hardened into asphalt. Then there was a road before me. It had become something I could cross if I wanted to. This power of language had brought something into being. I was not yet certain how I could use language from this point on, or how on earth to use it to my advantage. I was only certain that I would not let anyone else speak for me.

  PART THREE

  INSTRUCTIONS

  The Three Strangest Words

  When I utter the word Future,

  The first syllable is already headed for the past.

  When I utter the word Silence,

  I destroy it.

  When I utter the word Nothing,

  I create something no non-existence can contain.

  WISŁAWA SZYMBORSKA

  1

  As part of our ongoing search for a speech and language pathologist, my mother called several nearby hospitals and universities, but with little success. Many practices weren’t taking on new clients, others wouldn’t take our insurance, and most of them had long waiting lists. I watched my mother’s cheeks redden and tense every time she hung up the phone. She tried to shield her frustration from me, but after pursuing another lead that turned into a dead end, she hit her breaking point.

  I keep hearing about this “critical period” you’re in, she fumed. Aren’t these people the experts? Don’t they understand that you have to start therapy right away? It’s like they would prefer you to have your speech therapy in a van on a street corner in Tijuana.

  But in mid-October, we finally found Justine Sherman.

  Justine had a private practice specializing in speech-language impairments. Her office was a converted home in Sierra Madre—ten minutes from my parents’ house—with a small staff, mainly women. As she walked me through the building, I watched some of her other clients knock over blocks and plunge their fingers into one another’s noses. I was the only patient there who wasn’t a toddler.

  Our first interview was in Justine’s office. Her dark eyes shone from her slim face as she sat behind the desk in front of me.

  Alicia is going to sit in on this consult, too, is that okay? she asked.

  I looked over to the side of the room that was lined with bookshelves. A quiet girl near my age sat there and gave me a mild wave.

  Sure, I said.

  I know your case. Justine patted a thick folder on her desk. But I want you to tell me why you want to be in speech therapy. What is your biggest struggle these days?

  Words, I guess. I forget words. Nouns, verbs—all kinds of words. I forget everything.

  Justine started taking notes.

  And reading, I added. I still have a lot of trouble reading, though I don’t know why.

  Justine’s eyes bloomed. Tell me more about that.

  I can just show you, I said, taking a paperback out of my purse. Soon after my release from the hospital in Edinburgh, Materson had given me his well-loved copy of John Grisham’s The Last Juror.

  I’ve been trying to read this book every day for a month, I explained, but I’m still not finished. It takes an hour for me to go through a paragraph, sometimes a full day to read a page. I don’t even know what the book is about. What’s the problem?

  It’s a good question, she said. The first thing I should tell you is that reading isn’t just one thing. I am aware that you were a PhD student, so you might be especially interested in some of these mechanisms. There is a lexical issue to address, being exposed to a vocabulary you’ve forgotten. There are also syntactic issues, relating to the grammar of the sentence structures. Not to mention that prosody, the melody of sentences, is coming at you unevenly at this moment in time.

  Lexical. Syntactic. Prosody. Justine wasn’t dumbing things down for me, and I was grateful that
she would engage with me at this level. The words were daunting, but somehow also familiar.

  You have to organize all the information you are taking in, she said. Then you have to visualize it. And then you have to remember everything you have just learned. Managing that convergence isn’t at all simple. Quite the opposite.

  I noticed myself relaxing into Justine’s gentle authority.

  Speaking, reading, and writing are related to one another, but they aren’t the same thing, she explained. Language is a bit like a horse race. Any one of these capacities can leap ahead of the others for a bit. And while you are here, we’ll work on all of these parts of your communication.

  •  •  •

  Over the next few days, Justine administered standardized tests to establish my current baseline. There were a number of questions I couldn’t answer, and Justine’s notes divided my word retrieval errors into categories: Semantic Locative, Semantic Coordinate, Semantic Associative, and Phonemic Omission.

  For instance, I would say orchestra when I should have said musician, or hoof instead of horseshoe. These semantic errors were locative because I could isolate the location of the word I wanted to use, just not the exact term. Justine also noticed what Anne had mentioned two months earlier in Scotland: my oral-motor muscles wouldn’t always coordinate into speech. Justine considered my apraxia mild at that point, though she noted: “Lauren has difficulty with multisyllabic words and often substitute(s) the vowel sounds.” It was hard to make a distinction between voiced and unvoiced phonemes (pop versus bop), but Justine pointed out that I was usually aware when I was making those errors, a major improvement over Scotland. My irregular verbs continued to be problematic. I would say swimmed instead of swam, and couldn’t identify the mistake. Justine wrote that my performance on memory tasks was “poor,” and that I had “significant difficulty on the memory subset, which required [me] to remember both isolated and contextual information.” She added: “[Lauren] appeared to perform better when contextual cues were provided rather than a straightforward assessment of her memory.”

  In spite of less-than-stellar performances on these tests, Justine was relatively positive about my case, writing that I was “a sharp, motivated woman with excellent potential.” And I actually enjoyed taking the diagnostics because the existence of such tests was promising. It indicated that what had happened to me had happened before to someone else—to so many people, in fact, that a test had to be invented to evaluate all of them.

  Justine promised that she and Alicia would have a syllabus prepared for me soon. As I was leaving after the final test, Justine plucked an armful of children’s books from her stacks. They showed things in a house, things on a beach, things in an office.

  These might help you remember everyday items when things slip your mind, she said. Don’t stop reading your Grisham, though. It may seem a little weird to read The Cat in the Hat side by side with a thriller, but you might find they can actually complement each other.

  •  •  •

  When you can’t find a word, it’s like you are locked out of your own house. You check the windows to see if any of them are open. They aren’t. You check the side doors to see if they were left ajar. But they are sealed shut. So you go under your house, squeezing through a crawl space, hoping to access the cellar that way. Since you can’t go to the front door of your language, you circumlocute.

  From Justine, I learned how to do that effectively.

  How big is the thing you want to describe? What color is it? If it is an object, is it an item you use in your car? Is it something you wear? Something you eat? How does this thing feel in your hands?

  During my endless circumlocutions, it often felt like I would say everything but the word itself. Justine told me not to get frustrated with this counterintuitive travel.

  A lot of people with aphasia get themselves blocked, she said. When they can’t say the perfect thing, they don’t say anything at all. Don’t do that to yourself. Pride can get in the way of recovery.

  The way people learn and use language is often difficult to pin down. In spite of its ability to be honed in so many ways, it also comes to most people at the level of an instinct. As cognitive scientist and linguist Steven Pinker explains, “Language is a complex, specialized skill, which develops in the child spontaneously, without conscious effort or formal instruction, is deployed without awareness of its underlying logic. . . . Language is no more a cultural invention than is upright posture.”

  When I started speech therapy, I thought there would be a lot of linguistics involved in my treatment. I had some experience with that field, using some of its theories and models for papers in grad school. Since linguistics explores the way language functions, one would assume that it would be similarly involved in the way language malfunctions as well. But this is not the case. Language studies are hugely cross-disciplinary, spread among the therapeutic, academic, and scientific communities with no unifying theory shared among them. Experts in a single field often disagree with one another about how language affects cognition. And often, their studies didn’t include people who have language disorders, only children learning language for the first time. So when a surgeon approaches a diseased heart, its well-known architecture guides his scalpel. But the anatomy of the “language organ” doesn’t allow for such a simple approach. Hildred Schuell, a pioneer in aphasia research, points out that interventions in language disorders can be troubled from the very beginning of treatment because, “What you do about aphasia depends on what you think aphasia is.”

  Speech and Language Pathologists (SLPs) are at the front lines of this disorder. They are exposed to linguistic models as they go through their training and often rely on isolated linguistic tools to evaluate the deficits of their patients, like the diagnostic tests Justine gave me. But the work of the linguist is often theory driven, and that of the aphasiologist is much more research driven—it deals with the actual people in an actual room.

  Aphasia can be easy to ignore or misdiagnose, especially in the older population it usually affects. If the patient doesn’t respond well on language tests, that doesn’t mean that language is the root of their problem. It could be their vision, their hearing, or the early signs of dementia. The approach of the SLP might look imprecise from the outside, but that’s because it changes from patient to patient. It involves a certain amount of intuition. If music stimulates speech in a client, the therapist might start singing Christmas carols with them. If card games facilitate conversation and focused attention, they will play Go Fish during their sessions.

  At some point in my development, I would become enthralled by the forensics of language again—its intricate maps and diagrams—though even now it’s still hard for me to decode them. But Justine understood my interest early on. The way Justine picked up on my points of curiosity was her greatest strength, and allowing myself to remain curious proved to be my greatest asset.

  2

  San Diego was on fire. California had its earthquakes and mudslides, but it had its fires, too. It had full fire seasons, and this one was the biggest in the history of the county.

  My mother called me from the office to alert me that her sister and her family had been evacuated from their home.

  They’re already en route to LA, she said. Can you clean up a bit?

  When I went outside, the weather was postcard worthy, with no sign of the fires raging two hours south. Soon, though, my extended family arrived in two cars, each filled with bags overstuffed with clothing and toiletries. Jewelry boxes were left open on the seats. The large, sepia family portraits that usually hung throughout their home were wrapped in dark blankets. Even with all this, they almost immediately began second-guessing what they had taken and what they had left behind. I hadn’t experienced this kind of rearview reflection after leaving New York; it had been more than a month since I’d left and I still couldn’t think of anything I missed.

  Once they had emptied the cars and gotten t
he kids settled, my uncle and aunt beelined for the electrical outlets to plug in and turn on their minute-to-minute reports of the fire’s path. I ducked outside to escape the hubbub, and as always, I had my journal in hand.

  Before long, my eight-year-old cousin, Elle, caught sight of me and scurried across the lawn in my direction.

  Found you! she said, giggling, wrapping her impish body around me. We were the only female grandchildren in this family, almost twenty years apart and rarely in the same place, but she loved doing all sorts of projects with me. What she couldn’t possibly understand was that circumstances were different now, especially when it came to language.

  You wanna help me out with something, Cousin Lauren?

  I guess that depends, I said cautiously. What’s the assignment?

  Reading aloud, she said. We take turns. I read a page, and then you read the next.

  Well . . . I said, looking down to her young, eager eyes. We might as well try.

  We started to pass her book back and forth, both attempting to voice the words before us, but achieving anything that resembled an easy tempo was difficult. Suddenly, a bizarre fact became startlingly clear to me: my eight-year-old cousin and I were at the same reading level.

  On one of her pages, Elle got stuck on the word tarantula, and though I tried to correct her, the word proved impossible for me too.

  Tarantella? I tried. Tam-tat-tar . . .

  Annoyed, I heard myself stuttering like a car engine until the word finally rattled off my tongue correctly: Tarantula! I said with triumph.