Holly returned with one of the young hot residents—Dr. Some-Italian-sounding-delicious-truffle-name—who checked my cranial staples. (Cut me some slack, I’d clicked three times. I was home.) He had such great skin. And his hair! It was ER-era George Clooney hair—clean, yet scruffily mussed, but there was no man bun on this millennial. I think if I could have smiled, I would have, but I couldn’t move my face or much of anything at that point. However, when he left, apparently I grabbed Holly by her Prada tunic and tried to get out the words, “Holy hell, did you see that guy?” Except she said it came out sounding super loopy, so it took her a while to decipher, but she nevertheless concurred. But how could I break my whole face and still be so insistently shameless? What other things had I said or done? And when was everything going to be a little less broken?
13
Unspeakable
“VUCK OFF, MARILYN. This is my yoga,” I told her. I love living in a city where the F-word is mandatory—even when I can’t say it.
I’d been singing again for my speech therapy—even though I still felt wired shut. My nine-hundred-year-old neighbor Marilyn stood in the doorway preening her dust mop of a dog, Biscuit. I love pooches, but that poor animal always sounded like it was being kicked in the teeth, which did not bode well for my current facial/dental PTSD. She adored the little guy—so there was nothing to call the mayor about. Still, I felt zero guilt about being noisy or dropping the odd F-bomb or two. What can I say? Even in my wiser middle age, the inner tough-guy street rat that sometimes commandeers my frontal lobe is still convinced that swearing makes you stronger.
On the other hand, there are circumstances where all it does is terrify and trigger people. Right now, I needed to terrify and trigger Marilyn to go away. She was giving me what-fer, as Ed would say.
Marilyn was the kind of person who could always be heard whispering in the street to her dog, “No, you don’t always get a cookie for doing the right thing. That’s part of being an adult.” Something loud and insane was always afoot on the other side of the wall at Marilyn’s: illegal construction, intense granny raves, the odd kidney transplant—something that always made the dust mop crazy with yipping. You never quite knew.
“Marilyn, I had to buy sniper headphones when you and Biscuit moved in, so you can’t talk to me about noise.”
“You know, your speech is getting much better.”
It’s true. It was. I’d been singing “The Way You Look Tonight.” Before that I’d attempted to belt out Fiona Apple’s “Criminal.” I am not an especially good belter, but Fiona’s lyrics seemed entirely appropriate given the police state of the city that day. The terror threat level was at chartreuse.
Still, at this point, it was all about getting language back and I didn’t care if Marilyn, her dog, or the terrorists heard me. In the hospital, on pain meds, I had hallucinated all kinds of gleeful things my teenaged daughters might say now that I was wired shut:
“Oh my God, she can’t talk. This is the best! She can’t nag me to wake up in the mornings anymore,” Sophie would say.
To which Olivia would reply, “She can’t tell me to clean up my crafts or complain about all the glitter!”
Then Sophie’s eyes would widen and she would gasp, “She can never embarrass me at school functions ever again!”
Only to have Olivia knowingly chirp, “Oh, she’ll find a way.”
“I really hope she stops wearing those stupid tank tops that say things like ‘Organic’ with a bean sprout and ‘Reading Is Sexy.’ Ooh! Do you think she’ll just stop talking altogether?” Sophie wished out loud.
With Olivia expressing her skepticism, “Hmmm…I don’t think she can. Not without going even more bonkers than she already is.”
At one point, even our old nanny made an appearance and said something along the lines of, “Aye, Dios mio, it’s a miracle, Miss Olivia! God has answered our prayers!”
In the middle of all this, coming to grips with not talking, I tried my hand at sign language and learned how to say things like, “I can hear you. I broke my face and so it’s really painful to talk.”
I have to confess; there was something wildly satisfying about communicating this way. I was crazily frustrated inside my head and mostly expressionless face, so to be able to use my hands to emote felt great. A number of the signs are highly intuitive and vivid so they’re completely easy to learn. The sign for the word painful is two hands twisting knives into your ribs and the expression of agony. The problem was not enough people around me knew sign language to comprehend all but the most hyperbolic of charades. There was a period after coming home where I was always on the lookout for the signifiers of deaf culture, say on the subway. I would search for anyone who might understand me. With hearing aids getting smaller and smaller, not to mention miraculous cochlear implants, it was hard to tell who might be a fellow understanderer of ASL.
Technology would be my answer for the near term, I thought, testing out a finger sketching-spelling app on my iPad. Of course, it’s still clunky as hell if you have terrible finger penmanship, which I did after all the drugs. Plus, I could see that people always felt they had suddenly been put on the spot and were being challenged to an impromptu game of Pictionary. Overall, the moms were the best at reading my looping iPad scrawled messages, but the net result was that my impatience to speak, coupled with their impatience to understand and correctly guess my words, just made for more impatience.
I knew there were a number of iPad type-to-talk applications out there on the market. This was my next stop in moving toward communication. I downloaded several to figure out which was the most “human” feeling. I knew I had a great deal of communicating that I would need to do when applying for my upcoming disability claim. I also felt I needed to choose a voice that didn’t sound like every car GPS or every virtual assistant out there. It needed to sound a little like me. I wanted a woman who was not too robotic, so no Siri, no Alexa, and I didn’t want her to sound too posh. I wanted someone in the vein of a friendly British newscaster, and I was elated when I finally found her. She sounded just slightly less aristocratic than the BBC World Service’s Sue Montgomery. I practiced typing out common phrases in the app to have them at the ready for public interactions. They were ordinary things like “please” and “thank you” and “Can you help me?” or “I’d like to order the——” or “I’m so sorry. I was in an accident and so I use assistive technology to speak.”
I remember going to the disability office in Harlem and being so proud of myself as I pulled out my iPad to engage a giant prison-guard-looking-guy behind the desk to ask for help. I pressed play on my iPad after typing in my question and Sue Montgomery-me spoke politely to the guard. His face screwed up as he listened. “What’s it saying? I can’t understand…” He was shaking his head now.
I hit replay and Sue Montgomery-me repeated the question, which I think was something absurdly basic like “Hi, I’m trying to find the disability department. Can you tell me which floor it’s on?”
“Look lady, I don’t know what this is. Can you hear me?” He started talking really loudly now. I nodded yes and flashed my teeth to show my wiring. I also played Sue again, saying, “I can hear you. No need to shout. I just can’t speak.”
“Lord, if I ain’t seen it all,” he sighed, handing me a clipboard and a pen. I wrote out my question in my crap penmanship, which he ultimately understood. So much for technology. It was also clear that even at the disability offices (at least this one), the staffers weren’t necessarily used to applicants trying in earnest to adapt to new modes of communicating. I was back to pen and paper for most interactions.
I DON’T KNOW WHAT I WAS expecting four weeks later when they finally fully unwired my mug. For those first terrifying moments, I thought my lower jaw would fall right off my face onto the floor and roll out into Walter’s disco-themed lobby.
It was exactly the feeling you have when you
almost drop your purse down a manhole in the city but instead you catch it just in the nick of time. My lower face muscles were like slippery, overcooked noodles.
“Holy cats, I’m a slack-jawed yokel!” I said, except it actually came out as: “Hory cas! I’n uh sack jawd yoko!”
“You’re Yoko?” Walter eyed his nurse for an alternate translation. “Yoko Ono?” he guessed.
“It-gun-fa-off!” I insisted, cradling my chin in my hands. It felt as if it was hanging by mere threads connected to a space just above my ears. This couldn’t be right, I thought. And if it was, it was terrible. It was so unnerving and I sounded like I’d had ten martinis. My whole face was a broken marionette.
“Your jaw? No, no! It’s not going to fall off, you ridiculous girl.”
“Ich ithh!” I said, panicked.
“It won’t. Take your hands away and just try to open and close slowly.”
I lowered my palms an inch away, still scared and not trusting. I let my mouth fall open slightly and then tried to bring my up teeth again. It was like doing a very slow pull up—only with my mouth. I felt my back teeth touch lightly and then slip slightly to the left. I still couldn’t get my lips to meet and fully close.
“Try again,” he said calmly.
Still holding my hands like a girl taking communion in church, I let my mouth fall open again, chin dropping, and Walter whipped out his tape measure to check the distance between my teeth. I could open about a half inch, but it felt like the Grand Canyon to me. I strained to do another chin-up. I could feel tears welling up. My lower jaw was shaking. As my back teeth came together, my upper and lower jawbones still felt like a pair of broken scissors with the blades misaligned and slipping crookedly past each other.
“I’m telling you, it’s not going to fall off,” Walter assured me.
“I owe…isss juss weir…” Translation: “I know, it’s just weird.”
This was so different from the aphasia I’d had with all my other seizures. I’d had my inner monologue back for months now. There was no straining of my brain scrambling and searching for the right words or trying to figure out how to sequence them. I had that down. It was the physical mechanics of speech and my mouth as an apparatus for communicating that I no longer had full command of.
At first, every word I tried to speak came out like water, a formless puddle of loose, risky vowels. R was probably the easiest noise to make before vowels. “Hello” came out heyrro. See you later became Shee ew rater. My tongue wasn’t used to all the cavernous space it suddenly had to roam. Every thing tumbled out in overly rounded consonants and vowels. When frustrated, my words came out like scalpels with hard consonants erupting in singular, slicing cuts. I was a girl with Tourette’s and a slightly inebriated slur. The most difficult sounds were any words with B, F, V, P, and S. Ms were tough too. I got a referral for speech therapy.
AFTER MONTHS OF REPEATING “Bjorn Borg brings bravado to Bavaria with Bjork…” and “Sally sells seashells…” I was advised to try singing. I’d been in choir in high school and college—although I was never very good. I could carry a tune as a soprano, but I lacked power. The thing is I’ve always wanted to be a torch singer with a powerful, soulful Patti LuPone–style lounge act.
Because I’d also had considerable trouble with m sounds, I’d been doing this absurd monster song from The Muppet Show, the whole of which involved repeating “Manumanuh” to this chipper tune about a hundred times. I also practiced my super-villain laugh: “Mwah-hahahahahahah.” The most important thing seemed to be to keep the set list ever evolving. I’d been doing exaggerated renditions of Tom Jones’s “What’s New Pussycat” around the house because it requires so many facial muscles and types of sounds from hard to soft. But I knew I needed to mix things up to keep the neighbors from going bonkers.
There were multiple times, though, after being unwired by Walter, where my mouth and jaw would stop working altogether. Just like that, with very little warning, the muscles would abruptly freeze up and clamp shut. When this would happen I couldn’t even speak in Hepburnese! What’s it like to be mute in Manhattan—the city that never sleeps, the city that never stops talking, the city that’s always irate? No one knows how to process you. They’re expecting you to match and reciprocate their level of angst, and when you can’t, things get ridiculous fast.
It happened without warning, on the subway. I was standing there holding my little square-inch section of the pole, trying not to be an inconsiderate manspreader. The train was already packed body-to-body by Forty-Second Street. Sandwiched between a Melania Trump drag queen and a nun, I was getting close to my stop when this very zaftig blind woman steps onto the train. She held her cane close to her person as her male companion stepped on beside her. They both lingered in the doorway—the only open space left in the packed car.
My station was coming up and so I was trying to subtly make a move toward the door to indicate that I was getting off. I nudge and nudge and lower my head to push forward, but no one seems to get it. I try to speak in the blind woman’s general direction, “Ggghuu…” but my mouth won’t comply. It simply won’t make the words “Getting off” or “Excuse me.” The hard G is a great, mostly closed-teeth sound, by the way.
“What’s happenin’?” The blind woman whispered up over shoulder to her friend, clearly sensing my agitation. “Is somebody tryin’ to saying somethin’?”
As I wiggled and wiggled toward the now-open but still mostly blocked doors, her friend whispered “Not sure,” zeroing in on me with a furrowed brow like I was a girl off her meds. Behind him, an ominous sign instructed New Yorkers sternly, “See Something. Say Something.”
Inside my head, the polite but still pushy-jerky girl was pleading now: Getting off! Excuse me! Pardon me? Hello??? How can you not understand me? But my mouth was still not cooperating, so it was just saying, “Ecusss…”
With the subway doors open, a few skinny bodies twisted and turned past the blind lady and her friend to make their escape. I made my own futile efforts but was still pressed up against Melania and couldn’t move my arms. “Looks like she’s trying to say something,” the friend added.
And I realized what they were expecting from me was a truly irritated, “Get the fuck out of the way, so people can get off!” But I could no longer do that sort of thing. I just didn’t have it in me that day or most days.
The doors closed. The train departed my stop. I resolved to get off next at Ninety-Sixth Street and walk back down, but I couldn’t help but laugh at the situation. Here are two women, a blind one and a mute one, just trying to manage a single public interaction. Two people who needed to communicate in a clear and immediate way but couldn’t: the blind woman and her friend were trying to translate my angst, meanwhile strangers were chuckling to themselves at the three of us—trying to give our misunderstanding some privacy. And I think now about how much the world needs to adapt for this. How we need to become translators for a broadening spectrum of difference and disability. The new motto needs to be, See something. Say something. But if you can’t, subway charades are a perfectly acceptable way to bridge communication.
AS PART OF LEARNING how to smile again, there was a time where I would spend long stretches holding a pencil level between my teeth while doing everyday tasks like the dishes or vacuuming. I also had to say the word pink a hundred or so times a day. It uses all the smile muscles. My hope was that in six months’ time, I might look less like Johnny Depp always sneering. Without language, I was paying attention to the world in a new way. They say 70 percent of overall communication is nonverbal and dependent on facial gestures, but I still didn’t even have those back yet. To be able to smile, even a little and more evenly across both sides of my face, would be a huge step.
I also had to spend a fair amount of time each day pretending I was talking to a dog: “Who’s a good boy? Who’s a good boy?” I sounded so insanely exaggerated that even Maril
yn asked if we’d gotten a new dog. It was ridiculous, but I needed that level of emotion and excitement to try to drive feeling back into my lips. I was missing being able to feel a kiss.
During the time when I was mostly mute, wouldn’t you know it, everyone would talk to me. I remember, I was trudging up Madison Avenue to the dentist in the freezing rain for what must have been my nine millionth root canal (that I still cannot afford) when a man came right up to me and said, “Can I just tell you, I really like your boots!”
The snarky jerk in my head replied, “Well then, I clearly need to do some shopping because these boots are from Costco, mister. That’s right, the brand is ‘waterproof.’ ” But instead out loud all I said was, “Thank you,” which actually came out as, “Hank hue.”
Then he launched into his pitch. He and his wife were living in a homeless shelter with a newborn baby. In my desire to be empathetic, I totally forgot that I still couldn’t make the right faces. I could only look either terrified or very cynical. I must have looked really scared because a cabbie stopped traffic on Madison and called out to me, “Hey, are you okay?! Is he bothering you?”
And lo, in a voice that came out in my first fully formed intelligible words in months, I called back, “No, he just likes my footwear!”
Holy fuck! I sounded mostly like me for the first time since “the big one”! A total stranger’s pretext of liking my mediocre boots had just given me back my words. I gave him my only dollar left in nickels—the housing situation in the city is really the worst—but it made me think more than ever about how we need to proceed thoughtfully, with compassion for those who are wired differently from how we are. You just never know who might turn out to be a pal.
Gotham Girl Interrupted Page 13