Gotham Girl Interrupted

by Alisa Kennedy Jones

  And while things shifted slightly every day, the overarching healing process had been so incremental in pace. I needed some agency in all this. Not to be lectured. Where I’d felt mostly beautiful before (both inside and out) now I felt like Kirk Douglas. My “resting freak face” resembled a stroked-out male movie star with a droopy eye and an overly pronounced jawline. Not that there’s anything wrong with that—strokes happen to the best of us. I knew I needed to get stronger, but I was still your average vain forty-something-year-old lady who just wanted to worry about simple things like crow’s feet and not having overly surprised eyebrows. I admit it. I like shallow. Shallow is fine. Shallow doesn’t require me to become a better person. Still, I felt like a living, breathing, Botox-nuclear accident. Now this good-looking doctor guy was lecturing me on inner beauty? (Cue unbridled shrieking.)

  The nurse came back in with the camera and we shot more deformed pictures. Yes, I was older and wiser now—probably. Yes, I was lucky to be alive—probably. Yes, I was well versed in the idea of inner beauty and had tried to instill that concept in my daughters, but guess what? Our world isn’t versed in it. Our world is judgmental and discriminatory and full of douchebags at work. I still needed to participate in the workplace as best as I could. But most of all, what my sage wisdom was telling me was that it was still my face. The one accessory I couldn’t just take off. And I still cared about it and I wanted to feel better about it—even if it was a spazzed-out face. Plus, it’s not up to Dr. Henry to school me on inner beauty. Because guess what? I was already pretty enough on the inside and plenty in love with myself, thank you very much.

  “Okay, smile now!” said the nurse.

  INDIGNITY ASIDE, I did worry about my face rigidity, that the muscle might seriously atrophy and somehow become gangrenous. I supposed I could handle a crooked spaz face, but not a zombified one. I kept up with the exercises and kept checking in with Walter, my original surgeon who was right in the neighborhood. Something had to work. Possibly brain-damaged by electricity and exhaustion, I could not make sense of any other kind of story than this. I could not make sense of not getting better—of being able to smile, feel a kiss, and chew my food without pain. If I couldn’t totally fix me, that would be tough. I would have to adjust, but in the meantime, I could still teach/show the people around me that I was still me—still alive in there, underneath all the invisible duct tape and misshapen titanium bits. I guess this is the part where I should also tell you that the dentist couldn’t fix my broken teeth until my jaw was free of the bands and wiring. I had a ways to go before any of this could happen, and I might be a less chatty girl for the time being, but I was still there, I insisted. That was me on a good day.

  On a bad day, a sidelong glance in the living room mirror would hollow out my chest with deep, muddy despair. I didn’t want anyone to see what my overly electric brain had done to me or what heinous thing it had made me into. I felt such feral shame. On a bad day, the depression that set in after the job loss was such a brow-beating, fickle, vitriolic bitch. Imagine you have a very dramatic actress—like Glenn Close—playing a kind of emotional vampire on stage in your head. She waltzes onto the scene deftly manipulating, draining your every feeling, and then magnifying all your fears and anxieties without missing a beat. A bunny-boiling rage monster; that’s what this depression was. My grand, grand mal seemed my life’s defining failure. Sadness at this failure would well up in my gullet when I was alone, and nest there. It was a lump in my throat that I couldn’t resolve or talk out. I had no words.

  And it wasn’t just that people I knew didn’t recognize me. Often I didn’t recognize me. Who was that melted, crooked-looking girl? And what happened to her teeth? Was she born that way? Or was it an accident? Must have been a doozy. The human brain has evolved into such an efficient storyteller. I could see strangers working out in seconds that something was wrong with me, but I didn’t yet have the voice, the teeth, or the social cues to convince them otherwise. I withdrew to my head for a time. I stopped trying to explain. I retreated socially and professionally. I stopped trying to be back in the world, pretending that everything was fine.

  Can you be homesick for your face? Can you be filled with so much longing for the self you used to be that you just don’t want to “be” at all? Was this the same notion of loss of identity or loss of self that therapists always talked about? The kind endemic to chronic illness, where everything you know about yourself vanishes and so you have to build a new, different life with new rules and habits? I stopped going out so much. I haunted my apartment like a little ghost. Had so much of my identity really been bound up in my appearance as a woman? How much had been tied to my job? To motherhood? How much to my crazy family—who were all on the West Coast and dealing with their own dramas? How much in simply being able to speak clearly and be understood. Identity is a slippery notion at best even when you haven’t had anything serious happen to you.

  On a more practical level, in terms of working and making ends meet, would anyone new hire me now? All I wanted was to blend in and be “normal” by New York City standards, which you have to admit allows for a pretty broad spectrum of aesthetic and life choices. But there were days I felt I could never hide even in a city where I’d always felt relatively anonymous. Now perfect strangers would ask what was wrong with me. After responding a couple dozen times in my limited way, though, I realized that most people were not trying to make me feel bad. Usually, the opposite was true. Most people were just trying to connect and relate. A number responded with their own tales of how they had broken something or been in a car accident. There were also curious strangers who were just attempting to make sense of what was in front of them: a spaz, now both inside and out.

  BUT THERE WAS WALTER once again poking me with small tines of a lobster fork. I had started to feel slightly more sensation in my cheeks on that week’s visit.

  “I miss lobster and beef…and pie,” I told him, wistfully in my sloppy brogue. “When this is all over, I am going to eat a whole cow. Poor Bessie,” I sighed.

  But now, Walter was not laughing at me. He was alternating between poking me with the lobster fork and squinting at a single, ghostly X-ray. Then he said, “You realize, the break was right at the nerve, kiddo?”

  He just looked at me, sorry. It was the same sorry, sad face of the EMT guy. Walter poked my lips again, and I wanted to tell him I did feel something, but I’d have been lying. He put his hand over my eyes, continuing to prod at different intervals and that’s when I wondered pretty much out of nowhere, what if my last kiss was really my last kiss?

  All these different things spun in my head. I’d imagined one day I’d look up, and blink, I’d be an old lady, but I hadn’t imagined I would turn into a long-faced, lantern-jawed beast overnight. I avoided eye contact in public. I had to constantly remind myself to keep my lips together (which was still a challenge), so that I would not be perceived as a slacked-jawed, mouth-breathing idiot. Friends mostly treated me with white kid gloves—I could see they felt helpless to do anything. The best times though were when they would show up with something specific that would remind me of being me. To make speech therapy less tedious, my friend Billie got me a Shakespeare Insult Generator, which was a strange contraption of a book that provided hours of morally offensive phrasing that I could direct at my therapist. I could call her a loathsome-puke-stocking if I was in a particularly foul mood. Another friend donated some seriously amazing pro-bono dentistry and made me these insane margarita smoothies—with just a smidge of the good stuff on them.

  I thought back to my last kiss with Loïc. In my imagination, I could still recall the nuances of it. There was nothing like a kiss. A kiss was better than the perfect warmth you felt at the first snow of the season, cool flakes falling soft on your cheeks, that I-cannot-get-you-close-enough feeling of yearning and satisfaction, of appetite and fulfillment, of holding someone’s face in your hands. Taking in their magic as they take in you
rs. It was the wild rush of being consumed and consuming, of giving them the indescribable, extraordinary feeling of a deep, all-consuming kiss. I remembered my face in his hands. His in mine. The street corner in the East Village where we first kissed. Never let that bit go, I thought now in Walter’s chair. That was my very unequivocal New York opinion, my manifesto for this lightning strike, this seizure. Keep your last kiss close and ever closer in case you don’t get to feel it again.

  Make certain your last kiss was your best kiss. Never take it for granted. Kiss your loved ones all the time. Before Loïc would leave the house in the mornings when we were still a we, I would kiss him like crazy—not just because I loved him or thought I loved him but because like any daffy Frenchman riding a bike in the city, he would wear one of those useless little Frenchy bike hats instead of a proper helmet. This made me crazy, and so I would say, “You realize you have a death wish?” and then force him to smooch and smooch and smooch until he would be legitimately late for work. But just in case he was hit by a bus and I never saw him again, I wanted him to feel totally, fully loved.

  Walter uncovered my eyes now and told me plainly with nary a hint of drama that he needed to go back in again, rebreak my jaw, realign things, and address nerve issues. I wasn’t healing right. But instead of peeling my face off my skull again, this time they would go in arthroscopically from the other side of my jaw, he told me, by my left ear. It wouldn’t be nearly as bad as the first emergency surgery.

  You may wonder why I wasn’t completely devastated by this news, how it is I didn’t start bawling right there in the chair in front of Walter and his nurse. My epilepsy had changed the way I went about things now. I think after six years of seizures you get used to everything being so unexpected and always being such an emergency that you relish any opportunity to plan anything. Last time had been a total life-and-death crisis—an oh-God-what-do-we-do-with-her? crisis. This time was like a massive do-over. Everybody in life wants a do-over—I certainly did. If Walter needed a do-over to get things right so I could feel again, I wasn’t going to be sad about that. I was going to be hopeful.

  Still, I groaned audibly as I considered going through it all once more: ugh, the gnawing morphine itch, the incalculable vulnerability of backless nighties. No matter how you tie them, they always fall open and show the part of your fanny you don’t like most, which for me was all of it. The simple trick I learned from the nurses, because I am clueless when it comes to being sick or in the hospital, was to always ask for two gowns. The first one you put on so that it opens in the back like they ask, so that doctors can get all up in there if they need to. The second gown you put on backward over the first one and wear as a robe. How did I not know this?

  Then, there was the prospect of being wired shut even longer. I was learning how to be a mute in the city and make it work. At least, I would be better prepared this time. I’d bring Bananagrams to play with Ed and the one cool nurse on the ward. There was always one. I’d sport better undies in the event of eligible doctors, maybe get a Brazilian wax that wasn’t so spectacularly botched this time. I’d remember sour apple Jolly Ranchers and mints and sneak in better smoothies. Most of all, I would be ready.

  To have my jaw broken again, however voluntary this time, seemed a cruel joke. I needed to stay funny right now because, oh boy, did I feel bad about my face.

  HOME AGAIN AFTER AN eleven-hour surgery, I had been shuffling around my apartment having escapist real-estate fantasies and looking like a drunk lady, wearing a jockstrap on my chin. The procedure had been more of an ordeal than Walter had painted it. I’m not saying he was whitewashing it or anything. It’s just that my face hadn’t responded well to the retractors, which were the implements the surgeons used to open my mouth to get fully inside to realign my jaw. The swelling, after having stretched my face out so intensely, was unreal. (I have photos, but they’re scary.)

  Surgery felt like such violence. My whole body was exhausted from it. I was sleeping sixteen hours a day because it was the only time I didn’t feel pain. That said, even if I was wired shut, unable to speak, and completely freakishly grotesque, I loved what my Percocet-addled brain was dreaming up: ideas about full-scale inner and outer makeovers—not just clothes, makeup, or hair—but an overall way of being.

  The makeover is what the French philosophers called a “technology of the self”—a script or story through which we make sense of our identity. Maybe I needed a Frenchy makeover? I needed more joy to help break up this long slog of healing. Along with drinking Sancerre and cooking, I thought it might be wise to channel the French ladies. Their ideas on beauty might feel more authentic, more comfortable in one’s skin, and less plastically pretty. I thought back to Jeanne Moreau in Luc Besson’s film La Femme Nikita and the scene where Jeanne teaches a scrappy street junkie, played so beautifully (and subtly) by Anne Parillaud, how to be a woman. Maybe this was how I needed to reframe things?

  Just what was their secret? French women seemed to do everything with an effortless je ne sais whaaaaaa? sort of way—whether it was dressing, dating, eating, or resisting brutal fascist dictators. How might I repurpose a few of their tactics to adapt to this new face of mine? I brainstormed in my little kitchen with my jaw-strap.

  Flirt routinely as a matter of course. It’s in every French woman’s genetic makeup to flirt with anyone who shows up on her doorstep—quel charme! I do so love this expression. I’d guessed I might find such a tactic helpful when I felt misunderstood, was the recipient of disapproving glances, or possibly mistaken for being mentally ill or tipsy. To me, flirting was all in the eyes. If I couldn’t smile with my mouth, maybe I could smile with my eyes? Or practice looking quizzical? I was getting better at blinking and directing my gaze with purpose.

  Insist on highbrow core pieces. Given that I was now a spaz inside and out, I realized I needed to pay attention to all the key trappings of normalcy—including what I wore. It wasn’t enough to zip out to the bodega in my torn-up jeans and old Jack Purcell’s. While getting better, I couldn’t risk having another seizure being mistaken for someone on drugs or mentally ill. I needed to lose the baubles and anything that might read as anything but what I was—a regular nerd-lady with a good eye for shoes and tailoring. French women have an innate gift for recognizing quality and buying things that last. Bye-bye fast fashion. Hello investment pieces that I would be happy to die in—or that would make anyone immediately intuit that I wasn’t a hobo.

  Sip your red wine. Limiting alcohol is pretty much always advised for people on the electric spectrum. Everyone has a different seizure threshold. French women never drink to get drunk; they savor a glass or two of something sparkling or deep crimson in the face of the crushing anxiety of trying to heal, stay witty, find meaningful work, and support a household. Seeing as how I was always a huge cream-soda fan as a kid, this was a fairly easy swap to make.

  Embrace imperfection. So there are still a few vapid, superficial perfectionists in your family and outer circle who immediately assign blame for your appearance and current indeterminate health status. They say things like, “She wasn’t taking care of herself or she needs to get more rest” as though I were the cause of my epilepsy and my subsequent asymmetry. The street fighter in me says, “No it’s just your dumb DNA, you weenie.” Sometimes, a seizure is just a seizure. So let it go. French women never get their elegant knickers in a twist over the small stuff or small people. I would (when back at work again) make a donation to the Epilepsy Foundation in my detractors’ names and call it a day. They would get a bit of mail now and then, all while learning a ton about what so many of us with neurological differences deal with day in and day out.

  Maintain an air of intrigue. This one was harder for me as I am such a goofball with zero filter, but it was so worthwhile. Simply put: don’t give it all up at once. I didn’t have to explain what had happened to anyone. I felt explaining would put them at ease, but it’s a load of hooey. French women k
now that withholding selected pieces of information is beguiling. When some douchebag executive bro tried to gaslight me, either I’d have some choice zingers at the ready to make him (or her) feel like a ridiculous asshat while diffusing with humor or I’d have fully mastered my look of mocking indifference with a signature question-mark brow.

  Take off one thing before you leave your apartment. Did I really need to bring a rape whistle, mace, and a stun gun with me every time I left the house? The truth is most likely yes, given the shocking normalization of violence in our culture against women, LGBTQ people, immigrants, and the differently abled, but in terms of my own sanity, I needed to chip away at some of the defensiveness I’d been carrying around with me since the diagnosis. Besides, it’s much more chic to carry a smaller clutch in the evening or to dispense with the chunky statement necklace so that the dress can shine on its own—sans distraction.

  But again, even with all the sage Frenchy wisdom, I still cared about my face, and no amount of me becoming a better person was going to change that. What? It’s my face!

  16

  Gotham Girl, Interrupted

  THERE’S A JOKE the famed Russian dissident Masha Gessen often tells: “We thought we had hit rock bottom…and then someone knocked from below.”

  I thought I had hit rock bottom when I broke my mug, but then something else knocked from below. It was big, crazy, feral grief. Grief over everything: my face, a sense of beauty, job, parenting, being a professional patient, and losing Loïc. You name it I was losing it. How was it manifesting itself? As extreme fatigue. It was as if my fears had begun to fossilize as pain across my entire body. In my panicked mind, I wasn’t getting better fast enough. It had been four months since the last surgery and there was no bouncing back on the schedule that I, or anyone around me, needed. I still wasn’t myself.