by Lauren Marks
Eight? Yeah, she slurred. Eights.
My dad kissed the top of my brother’s head. Thank you, Mikey. You really saved the day.
I was grateful to see my family interacting again, huddled together close.
Later that night, I told Jonah about the hospital visit, praising Mike because he could get anywhere three times faster than I could, even if we took the same route. My mom had a quick decision to make and I was relieved she had chosen him. If it had been me driving . . . I said to Jonah. If we had gotten there any later, she would have needed a skin graft.
Does that mean you are able to drive again? Jonah asked.
Well, yeah, I said. But I thought Jonah was focusing on the wrong part of the story.
Isn’t that great, though? My mom is doing well now and everyone in my family is talking again.
Yeah, I guess, Jonah said. But clearly your mom should’ve spoken to your brother earlier. If she had, she probably wouldn’t have burned her hand.
The comment made me bristle. Whether or not this was true, this wasn’t a well-packaged message from Jonah. It was the opposite of comforting. I had watched my mother suffer the worst pain of her life, her voice had unraveled into its shrillest octaves, and my brother had borne it all in a way I couldn’t have. So, yes, my brother and mother could have had a heart-to-heart earlier, but Jonah was being too damn rational about all of this. New things were presenting themselves as part of my recovery, and though I still had to focus mainly on my rehabilitation, I wanted to tend to other obligations too. Didn’t Jonah realize that I also had a family to look out for? Something about our emotional realities seemed radically misaligned then, and I was not sure how this had worked between us before. Would I need him to change? Did I need to?
11
A few days after the holiday hospital visit, Laura called to check up on me and see how my mother’s hand was doing.
She won’t be able to use it for a couple of weeks, I said. But it’s not a permanent disability or anything.
I’m glad you brought up disability, actually, Laura said. Because I wanted to talk to you about getting disability payments from the state of New York. As opposed to your unemployment payments . . .
What do you mean? I asked her. What unemployment payments?
You were between jobs when you went to Europe, she said. Remember? You had worked at a hedge fund that closed right before you left, and your grad school had offered you a paid teaching position at Baruch College in the fall. But since there were a few months between those two paying gigs, you were receiving unemployment checks from New York State.
That did ring a bell. And Laura went on to tell me I had received a few unemployment checks since the rupture.
But how? I asked. I didn’t register online or anything.
Technically . . . you have, Laura said. When you were in the hospital, we all still thought you might be going back to work soon. And I kept thinking about how expensive your medical care was going to be. I’d seen you use the unemployment website before, and knew they sent direct deposits to your bank account. I guessed that your password would be the same as your e-mail. It was, so I filled in a few weeks of unemployment forms for you.
I hadn’t thought about a bank statement in months. It hadn’t even occurred to me, since my parents were covering everything financially.
I stopped filling in the forms when it was clear to everybody you couldn’t go back to work right away, Laura continued. But I think you should contact the unemployment office now. Obviously, you should still be getting monthly subsidies, maybe even more money, but you should probably switch the unemployment payments to disability payments. Could be related departments, so might be an easy change.
That’s a good idea, I said. Thank you for thinking of me. I’ll get on that.
When I called the unemployment office of New York a few days later, I was transferred to a human voice surprisingly quickly, which was helpful since it was difficult for me to follow automated prompts. It seemed an auspicious beginning.
I told the woman who picked up the phone that I wanted to stop my unemployment payments as soon as possible.
Have you found a permanent position of employment, Miss Marks?
No, I said. But I had an accident. That’s why I can’t go to work now.
Uh-huh, the operator said, and I could hear her keyboard slowly tapping away. And what was the date of that injury? she asked.
I checked the paper next to me. I had written this information down before the phone call so I could read this script aloud. I was doing everything right.
August 23, 2007, I said.
There was a long pause from the woman, and then I heard her begin to type furiously.
Well, my records indicate that you have received payments since then. . . .
For some reason, I hadn’t anticipated this response.
Oh. Yeah. But that’s why I’m stopping now. Because I need help. Disability help.
The operator’s voice became sharp: We’re not talking about now, we are talking about then. And then, you received payments that you were not entitled to. Which means, Miss Marks, you have defrauded the state of New York.
It took a moment to recall if defraud was the opposite of fraud, or if they were synonymous. When I figured it out, I was horrified. If I had the intention of defrauding anyone, why would I expose myself? But I couldn’t say that to this woman. I couldn’t say anything, actually. My fragile language shattered under her attack, and even though I wanted to explain myself, words were failing me. The sounds I was making were a sludge of language. I probably said something like: That if I don’t can and I was I don’t if that. Can’t help, please I was if can’t of If mean Help. Flumppph Ssh You? Mom. No. Not? Uh. Uh. No. You? You?
The woman over the phone was undeterred. If anything, she sounded more confident the more I floundered. Maybe she had never spoken to someone with aphasia before. Maybe she thought I was lying about this claim. But either way, she seemed to relish in the fact that I couldn’t defend myself.
This is not the office of disability, Miss Marks, as you well know, she said. An accident or injury is purely irrelevant here. This is the unemployment office for the state of New York. If you are accepting unemployment payments, it is your responsibility to be ready and able to work at any moment, and you’ve already admitted that you were not at all ready or able to be employed at that time.
I just submitted to her insinuations, issued at a cruel speed, because I couldn’t think of anything else I could do.
A month later, a bill arrived that I had to hand over to my mother sheepishly. Making that phone call had been a $1,342 mistake. My mom’s forehead knit into a pattern of defeat.
You didn’t do anything wrong, honey, she said. I’m not saying you did, and I know you want to do as much as you can for yourself. But you really have to let me handle this sort of thing in the future.
• • •
Neuropsychological evaluations can give a clearer picture of the challenges people face after a brain injury, and my mother was told this kind of examination was helpful for insurance purposes and filing disability claims. Since my ill-fated phone call to the unemployment office, placing me on federal disability had become a priority. My mother hurried to schedule another appointment at the University of Southern California Keck Medical Center in early December.
The neuropsychologist we met with was named Dr. Carol McCleary. She was a blonde woman with a Nordic build, and she arrived at our appointment dressed in an oversize cable-knit Christmas sweater and clunky holiday jewelry. She warned me that the test would take several hours.
I asked if I might be able to take the materials home when the testing concluded, so I could spend time on the areas where I struggled.
The sleigh-bells hanging from her ears jangled as she cocked her head. I’m afraid you can’t take anything from the room since the test material is all copyrighted, she said. And it’s not the kind of test you can study for, any
way. Even after the data has been acquired, the findings still need to be interpreted by our team. But you don’t need to worry about any of that because I will be writing a detailed report about you.
This idea of having to be “interpreted” irked me, excluding my own sense of agency, especially since the ways in which I was going to be analyzed were not being disclosed to me.
But much like the language test with my speech therapist a couple of months earlier, the test itself was fascinating. The questions asked were both indirect and detailed, often based in procedures. For one task, I was asked to put pins in a board with my dominant hand and then with my less-dominant one. For other tasks, I had to arrange blocks, sequence letters and numbers, and remember a series backward and forward. I had to look at an angular drawing, which vaguely resembled a toy rocket resting on its side. I was only shown this piece of paper for a minute or two, then it was taken away, and I was asked to reproduce as much of the drawing as I could. This was the exact sort of thing I wanted to review when the test was over. What had I left out? And what did those exclusions mean? But I was never given an opportunity to compare the two figures side by side. McCleary had made it very clear that wasn’t possible, so I just waited for the report to arrive in the mail.
When I received the paperwork a bit later, I saw that McCleary noted that my “general intellectual abilities” were in the “high average range,” but I had issues with “multitasking” and “attention-shifting.” She also wrote that the “neuropsychological protocol highlighted difficulties consistent with functions typically attributed to the frontal brain systems. Executive functioning was Ms. Marks’s greatest area of weakness.”
Executive functions are often closely linked with what is called working memory. Working memory is the ability to hold several items in mind for a short period of time, like learning a new person’s name, or getting directions by the roadside. Often people remember these things by simply repeating them, encoding the new information in language, and then rehearsing it internally. On the test, I couldn’t remember individual words in lists, but my recollections dramatically improved when those details were included inside an overall story, allowing me to visualize certain elements.
I learned that the frontal lobes are involved in processing judgments, calculating social norms, and inhibiting or expressing emotions, and are one of the many places where long-term memories are stored. They help govern things that make one person unique from another. When lobotomies were still common surgical practices—an ice pick inserted underneath the eyelid and into the frontal lobe—they effectively sliced away personalities, like a wiper blade on a windshield.
It disturbed me that McCleary had identified executive functioning as my area of weakness. If my executive functions made me me—who could I be without them?
However, I did like that McCleary mentioned that I had a “superior knowledge base, appreciation of abstract concepts, and knowledge of word meanings.” I was pretty sure I knew what she was referring to: it had been one of my proudest moments during the testing. A research assistant had been going through a list of words aloud, asking me about their meanings. But she paused halfway down.
Hmm, she said. That’s funny.
What’s funny? I asked her.
Just a typo, I guess, she said. The word hamlet isn’t capitalized here. . . .
That’s because it doesn’t have to be a person, I said, with a certainty that surprised me.
Oh really? she asked. What else could it be?
Hamlet. I hadn’t thought of the word in ages. Jonah had played the role of Hamlet back in school, but I was positive there was another meaning as well. In my mind’s eye, I slowly called up a scene of small houses with thatched roofs in a marshy medieval countryside.
A hamlet can also be . . . a location, I told her. Like a . . . village, or something.
I felt a surge of triumph. I was the girl with aphasia, correcting the language knowledge of the person administering my test. Later, though, I wondered if this had actually been orchestrated. It was a neuropsychological exam, and in an environment so tightly controlled, deception could be a legitimate tool in gathering certain information. But even if that was the case, I was pleased I passed this part of the test without fumbling.
Farther down on this report, I discovered a section that had nothing to do with this testing at all: Relevant History.
McCleary had written: “Ms. Marks was a doctoral student in theater before the hemorrhage.” And for some reason, she had then added: “She describes herself as a writer.”
I didn’t remember telling McCleary I was a writer, but then, how else was I to describe myself? I had become a woman without a profession. I couldn’t be an actor if I couldn’t memorize. Couldn’t be a PhD student if I couldn’t read a textbook. But writing? That was one of the very few things I was still doing every day.
12
The winter holidays were fast approaching, and Jonah told me he was on a mission to make the best use of the time.
I’ll be up at my dad’s place in Seattle for a couple of weeks, he said. And as long as I am on the West Coast, I was just thinking how much I would love it if you would come join me up there.
The invitation caught me off guard. That might be nice, I said, seriously considering it. But I don’t want to miss Christmas with my family.
You don’t have to, he said. Have Christmas down in California, and celebrate New Year’s in Washington with me.
It seemed like a shocking shift of reality. I hadn’t left my parents’ side since my stroke, but it had been a couple of months now, and maybe a trip would do me good. Yet, it seemed almost impossible to walk out the door of the home I was raised in and through the door of the home that Jonah had been raised in, within the span of just a few hours. Like a time traveler. If I was going to venture out this way, I felt I needed time to reflect on where I was coming from, and prepare myself for where I was going. I would need to ease into this type of trip.
There had been slight allowances for my driving recently, but there was no way I could get dispensation to go this far. Can I take a train up to Seattle? I asked Jonah.
Well, he hedged. I think so. If I remember right, the Coast Starlight comes all the way up from LA. But that’s the super scenic route, Lauren. That would take you a couple of days. . . .
That sounds perfect, I said, happy that I could find a route that would give me plenty of time to think.
Just so you know, I can’t stay in Washington for too long. If you decide to take the train, you’ll probably cut into the time we could be spending together, Jonah replied, sounding a little disappointed. Are you sure you want to do it that way?
That was, I suspect, a hint. Jonah was asking me to reconsider my travel plans, so we could capitalize on all his time away from the East Coast. He already had a distinct kind of trip in mind, but I was trying to conceive of my own. For me to be fully sympathetic to his desires, I’d have to consider our positions side by side. I would have to imagine multiple scenarios, playing them out to their hypothetical conclusions. My Theory of Mind wasn’t sophisticated enough for that, or as my neuropsychologist had mentioned, I just wasn’t good at multitasking. If I was going to make a decision about a path forward, I only had room for my own reality.
I’d like to see you, I said. But I think I have to do my travel slowly.
As long as you’re coming, I’ll take what I can get, he said, sounding pleased. And he turned a corner in our conversation, employing an entirely different register of his voice. You know, he said. If I have to wait even longer to see you . . . maybe you could give a guy a break. You could tide him over with a picture or two.
I wasn’t totally sure what his tonal shift indicated, or what he was suggesting exactly. Pictures? I asked him to repeat himself.
Oh come on, Lo, he said. You know what I mean. It’s been a long time since I’ve seen you. Been near you . . .
Sure, I said. I guess I could find some photo of me in my mom
’s albums. . . .
Jonah laughed. Whoa. I certainly hope you wouldn’t find the kind of picture I’d like in your mom’s collections.
Oh no? I asked. Why’s that?
Ahem. Well. Okay. Jonah laughed again, but this time a little nervously. Didn’t realize I had to be so explicit here. I was just suggesting that you could take a picture of yourself. And I just wouldn’t especially complain, if this photo turned out to be a little . . . racy.
I immediately thought of the Santa Anita Racetrack, which had been across the street from my elementary school. We used to do our gym laps in their parking lot. Then I remembered there was another meaning to the word racy.
As I started to work through the facets of the meaning internally, Jonah noted my silence and started to backpedal. Of course, if you don’t want to take the picture, please don’t do that, he said. It’s really not important.
I told him that I might have to think about it.
No problem. Only if the spirit moves you, he said. I heard the sound of the refrigerator door opening and the clunk of a plastic pitcher, pouring a glass of water.
You’re gonna love it up in Seattle, Lauren. It’s so clean. And green everywhere. Unlike New York, it was built at a human scale. Just beautiful. Like my beautiful girl.
Before I fell asleep that night, I brought my camera to my bedside and attempted to take a few pictures of myself. I was nude except for my black hip-huggers. There was nothing explicit, only white curves against red sheets. But my gaze looked so confused in every shot. It wasn’t at all alluring or inviting, or if it was, I was a poor judge of it. Instead, my eyes kept looking up as if they were asking a question. In earlier stages of my relationship with Jonah, a provocative prompt from him was an opening move into a mutual flirtation, which would then escalate into a chemical crave. This time, though, I didn’t feel any of that urgency. And even though I didn’t want Jonah to be disappointed, I decided against sending the pictures. I kept trying to imagine being with him, to visualize our reunion in his father’s house. But I simply couldn’t. I got hung up on details. How big was the living room? Does the lawn have a porch? I had no template to build on. In the years Jonah and I had dated in New York, I had never been to Washington. He had never asked me to join him. Now he seemed more excited about this trip than I was. I was sure there was a possibility that I could become excited, when the time came. The old sensations, whatever they might have been, could rekindle. Maybe soon. Maybe in Seattle. But, in the meantime, I used my journal to write my way to the other side of my unease.
