by Lauren Marks
So what is the most reasonable and fair way to bring up cognitive issues that might come alongside an experience of aphasia? Well, at least in my case, lacking my inner voice for a period of time made a profound impression on me. A word makes an idea concrete, an object that can be grasped and shaped in the hands of the person holding it. A passing perception, or an intuition, can be incredibly complex sensations that don’t require any words at all. But these types of mental activities are ephemeral and they don’t get so situated in space and time. They tend to be slippery. I often think the strength of language is its exactness, especially when it can communicate ideas that are not right here or not right now. Language can depict what is no longer visible, or something that has yet to be. And lacking those strong abilities can affect a person’s sense of identity. Or mine, at least.
17
As the Fourth of July approached, my family decided to take a trip down to San Diego for the holiday weekend. My aunt and cousins were on a vacation out of state, but they suggested we use their home as a getaway retreat. The brush on the roads nearby remained charred from the fires, but their part of town appeared undisturbed. And to my delight, their infinity pool in the backyard was pristine.
Swimming had been a passion of mine since I was a child. A lifelong asthmatic, it was one of the few sports I could participate in without aggravating that condition. In a recent consult with Dr. Giannotta, I was assured that swimming was safe again and would not affect the incision or intracranial pressure at all. I slipped into the pool immediately after our arrival. I relished the shift of gravity—my head had been a heavy weight for far too long. But there was a new pressure that was building in my mind, unrelated to my brain.
Before I had gone to New York, I had made an appointment with my OB-GYN. I hadn’t had my period since the rupture, and I wanted to talk about birth control options, since the physical part of my relationship with Jonah was going to be a part of my time there. The nurse practitioner mentioned something I had never heard of before: an ovulation machine. Most women used the contraption to monitor their periods and maximize their fertility while trying to conceive, but it was a highly sensitive and effective tool. She proposed a somewhat unconventional approach. She said, with some slight reverse engineering, it could also work to prevent conception as well.
Later, as I stood in the family planning aisle at Walgreens, I stared a little uneasily at one of the boxes for these monitors. There was a bald, lily-white baby on the front whose eyes had been visibly enhanced to look highly alert and more attractive to prospective mothers. The box baby’s expression was meant to say: I could be your baby! I tried to avoid its Photo-Shopped gaze and ignored the text on the side, which read “not suitable for a birth control method.” Sticker shock settled in at the register when the cashier rang me up.
Two hundred and twenty-three dollars?! Aghast, I asked the cashier to double-check. Is this really the price?
The middle-aged Latina behind the counter did her best to sympathize with what she assumed was my situation.
I know it’s not cheap, honey, but you are going to love it, she said. I got pregnant the second month I used it!
While I was floating in the pool in San Diego, I started to do some mental calculation. I had taken the device from California, to New York, and back to California again. That meant I’d been using it for forty-five days now. But the icon that indicated peak ovulation had yet to appear once.
Of course, I knew that I was using the machine for a purpose for which it hadn’t been intended, and a number of things could be contributing to confusing results and atypical hormone levels. But there was another possibility, too. Maybe the machine was working perfectly, and it wasn’t telling me when I was ovulating because there was already an egg very much in use.
• • •
Though one of the first things I had asked my neurosurgeons when I woke up from the craniotomy was about possibly conceiving one day, I didn’t mean I wanted to have a child any time soon. I wrote extensively about my pregnancy concerns in my journals over the next few days, trying to write myself to any kind of satisfying conclusion.
What if I was pregnant? What then? I don’t can’t imagine raising a baby with Jonah at this juncture—though possible somewhere in the future. So what would I do? An abortion or adoption.
I had been adamantly pro-choice my entire life, and still felt how important this option needed to be for women. But it was much harder to think of myself making a decision like that at this exact moment. I fretted about what I called improbabilities. Improbably, I had survived a ruptured brain aneurysm. Would I be able to force myself to terminate an improbable pregnancy? However, I was also certain that Jonah and I could not embark on parenthood at this point.
So instead, I actually started writing a list, which I entitled:
Who could I give it to?
These were all friends of mine, mainly gay couples, who wouldn’t have been able to conceive without dramatic measures. This idea, outlandish though it was, did fall squarely into my category of improbable actions. Would BJ and his new boyfriend ever consider raising a child together? What about Stephen and his longtime partner? Bizarrely, what did not feature on this list was what Jonah’s possible reaction might be if I proposed putting a product of our union up for that atypical adoption.
I made it clear to myself that it wasn’t out of the question that Jonah and I could actually have a child at some point, but we were currently separated from each other by three thousand miles. Not to mention I was unemployed, and for the time being, unemployable. When I got back to LA, I reluctantly bought a pregnancy test, with no part of me wanting a “plus” sign to appear in the result window.
It was a very long two-minute wait. I placed the test stick on the closed toilet lid and sat on the corner of the cool tub a few steps away. Laura was the only person I mentioned the test to. Jonah could be so opinionated, and I didn’t really want his voice to be part of this consideration so early on. He probably would’ve thought there was absolutely no reason for me to take such a test in the first place. But the doctors I had consulted with told me there was a chance I was still ovulating without menstruating. Now, statistically speaking, getting pregnant before even having my first period post-rupture was highly unlikely. But a healthy girl having two brain surgeries before turning thirty was also pretty unlikely. My entire new life seemed to pulse with unreason; the extraordinary was my ordinary.
One minute passed, but I resisted checking the test window. The strange thing was, in other circumstances, in another life, getting pregnant at twenty-eight would not have been such a source of anxiety. Most of my friends were in their late twenties and wedding invites had been coming in by the handful. I was aware that this was what people did at this age: they got married and they had kids. But I felt I was part of this generation in number alone. My twenty-eight had nothing to do with their twenty-eight. I was close enough to people in these social circles to observe the trappings of their milestones, but far enough away to not even have a whiff of envy. My theater friends tended to delay their childbearing experiences a bit, but twenty-eight was also a big year for a lot of them. And while they were hoping for their banner review from Ben Brantley in the Times, I was hoping to master the subjunctive form. I was introducing myself to strangers because they appeared in my dreams, for God’s sake! I was not ready to be the mother of anyone’s child.
Relief washed over me when the test came up negative.
I called Laura the second I got the results.
Hallelujah, Laura hooted. No babies for you.
That’s what everyone says: “Having a baby.” But no one is actually having a baby, I said. You are having a human, and they don’t stay small for long. Babies turn into tantrumming toddlers, masturbating preteens, self-absorbed college students, and depressive adults.
Preach, Laura said.
The whole idea of making humans is to have your children outlast you, right? I asked Laura. B
ut if your daughter, already living out in the world, has a medical emergency, she’ll have to move back in with you for an undisclosed amount of time. You’ve got to raise her all over again. And this kid will haunt your house and eat up all of your Wheaties. And that’s the kind of investment you make when you decide to have “a baby.”
Well, that’s an effective public service announcement, Laura said. In fact, it’s enough to put any sane person off of the idea of breeding for good.
After this conversation with Laura, I cut out the front of the pregnancy test box and stapled it into my journal, with an exclamation point beside it. It was a pleasant reminder of the day’s reprieve.
What is past? What is history?
If it is absolutely gone, impossible to access, then it EXISTS ONLY in the minds of the participants.
The strangest part of the documentary is the documents themself.
Recordings. Tapes. Video. Audio.
But even solid, tangible, documents there is only Uncertainty. Each member of the family has a different story, and all of them were involved. All of them were recorded. But they dont ot share a history.
Who do you believe?
I am not a physcist physicist. Or a scientist at all. I cannot understand the terms of an advance or a treat in time tr the science of time travel. But the past, as I know it, is multiple. The past only exists in the individual. Not a point that can be returned to.
Even my story.
The past, as the present, only exists in and by the perceiver.
• • •
What is it to love a person with aphasia? Or to be in love with one?
After the rupture, my language rarely matched Jonah’s. He exuded what I assumed was the same old fervor and intensity that I had once loved him for, but these days I was always a few steps behind. While we were speaking over the phone, Jonah would arrive at a conclusion in a conversation long before I had even tackled the initial issue, and sometimes he would believe I agreed with him simply because I hadn’t been given an opportunity to disagree. In this way, I largely let him dictate the terms of our new relationship, and I doubt that was what he wanted. In fact, he had to do the lion’s share of maintaining our dynamic, and I don’t think he liked that at all. In his lowest moments, this benign neglect from me would make him feel inessential and unnecessary. Ironically, these were the types of things that he used to complain about in the past phase of our relationship: I had been too sensitive, too easily wounded. Now, I was the one with the “robot voice,” though I doubt I noticed this role-reversal in real time. In general, I just found it a little too difficult to confide in Jonah. When we were in the same room together, we could pick up on each other’s facial expressions or gentle touch. This intimacy would help us convey or clarify something we felt passionate about. And, in this way, we could rely on the body’s grammar. Unfortunately, our bodies were rarely in the same space. The path Jonah and I were on felt uncharted, but we were hardly the first couple to tread it. We didn’t seek out examples of other couples who had dealt with these issues of aphasia, but actually there were a number of famous examples. There was actress Patricia Neal and writer Roald Dahl, and journalist Bob Woodruff and his wife, Lee. Later, there would be Congresswoman Gabrielle Giffords and astronaut Mark Kelly. But my favorite aphasic romantic pairing was that of Paul West and Diane Ackerman.
West and Ackerman were both writers, professors, and had published more than twenty books each—fiction, poetry, nonfiction, and literary criticism. This all changed in 2003, when West had a stroke, and subsequently was diagnosed as having aphasia.
West’s disorder was more severe than mine had ever been. He had global aphasia. Like me, his language was often interrupted, and lacking a fluent flow. Like me, he was bad at producing or repeating words. But, unlike me, he had poor comprehension on top of that. He had difficulty even understanding what people around him were saying. He could only speak a single word for a long while, and it was a nonsense word at that: Mem.
Paul West was many years Ackerman’s senior. When they first met, he had been her professor. But after the stroke, she became his caregiver. In her book, One Hundred Names for Love, Ackerman wonders about a lot of things I imagine Jonah was also thinking about. Ackerman worried that the spontaneity of their love would vanish, eclipsed by the burden of injury. She wrote that she had “never before had to mourn for someone who was still alive,” but she did mourn their relationship and “the loss of the word-drenched companionship” that they had lived in.
Though it could have gone another way for Ackerman and West, the story of his stroke became a love story, too. West wanted to write about his aphasia, and Ackerman helped facilitate that for him. And the more he wrote, the more adept he became at writing. And years later, Ackerman was able to write about her side of their aphasic experience. It was a journey of their love, their language, and their love of language. They allowed their shared curiosity to become a propeller taking them into the unknown together.
But in long-term companionship, having a fixed image of the person you fell in love with also makes it a constant struggle to see the person who is in front of you in that minute. Preconceived notions of what should be have to be confronted with what is. You grow together or you drift apart.
18
Rachel called to check up on me in late July and ended up recounting her recent night out. A self-proclaimed karaoke enthusiast, she was a regular at a few places in the East Village, though she said that she could never exactly think about karaoke the same way after what happened to me in Priscilla’s Bar.
Is that rude for me to bring up? she asked.
I told her it was fine, so she continued to talk about the night in Edinburgh, and she did so in such detail it was as if she had been there.
How do you know all of this? I asked her. Laura told you?
Not really, she said. It was all BJ talked about for a while. And there was the video. . . .
The video—I hadn’t even thought about the recording since that fateful night. But I knew that BJ had been taping the performance. I had seen him doing it.
Wait, I said to Rachel. You’ve actually seen the video?
Well, yeah, she said. You haven’t?
The very concept made me woozy.
You were doing pretty great onstage, Rachel said. Until your face plant, of course. And if you were going to go out in a blaze of glory, Lauren, you certainly chose a very theatrical way of doing it. Not to mention the song itself. “Total Eclipse of the Heart”?! You couldn’t have chosen a better stroke anthem if you tried.
Rachel had watched my collapse, observed the very second the aneurysm had actually ruptured. Somehow I hadn’t made the connection that this documentation could still exist somewhere. That it was something I could see myself, if I wanted to.
How did you see this video? I said. And where?
BJ showed it to me, she said. He put it on his blog ages ago.
On his what? I couldn’t believe what I was hearing.
Don’t sound so surprised, honey, Rachel said. We are talking about BJ here. . . .
I wasn’t able to take in Rachel’s rationale for BJ’s behavior, though. My anger was fueled by my embarrassment. It was a highly personal moment and I was horrified BJ had thoughtlessly circulated it in that way. Like my father writing e-mails about me without my knowledge, I felt that posting the video was BJ telling my story without my consent.
But I didn’t get as mad at BJ as I had been with my dad. And I didn’t stay upset for long, either, probably because I had gotten better at gathering my thoughts and was able to bring up the subject with him right away. When I called BJ, he explained his reasons, and he mainly allayed my concerns.
It’s a pretty loose definition of public, he said. No one goes to my blog except me. It’s more like a scrapbook than anything else. If you want it off-line, I’ll take it off. But if you are interested, I can just direct you to the web page yourself. Do you want me to?
; Did I?
I wasn’t ready to see the video yet, I knew that immediately. But it was an odd proposition. The most seminal event of my life was cued up for whenever I wanted to see it. The next time I reflected on this experience, I wouldn’t have to struggle to piece memories together. I could watch it instead of live it. I scrolled down the page, passed the paused video, and read BJ’s description, writing some of it down in my journal.
B.j. sent a link he posted on his blog lon ago. October 11, 2007.
The video of the aneursym rupturin—the karooke with Laura.
It is se 15 seconds long thou the player shows me. I will watch it later, but not yet.
B.j.’S below it says “When she fell over, I thought it was funny. When I found out the truth, I subsecquently felt bad.”
Posted by Billy J ay 8:44 pm.
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Labels: Brain, video
19
Through the phone receiver, Jonah was using the singsong lilt in his voice that I enjoyed. He was flirting, but in a relaxed, calming way.
You were so beautiful after the rupture, he said.
But one word struck me, and it broke the spell a bit.
After? I asked him. Why after?
Oh I don’t know, he said. You were just so . . . fresh to the world. So open to learn and change.
To learn and change . . .
The phrase disturbed me. Jonah’s nudging, which usually felt so playful, could also feel a little predatory. If he liked that I was open to learn and change, would that make him the teacher? Because while I had struggled for words, he had been granted more voice than ever. It was a sensation I couldn’t shake recently. And from this statement, I was finding it impossible to determine if this meant that I was actually “the woman who Jonah loved,” or someone he would mold into “the woman he could love.” Finally, I was finding language for this vague sense of dissatisfaction.
