My friends Arabella and Billie were staying down in Tribeca at this hipster hotel where all the drinks had wrong-sounding finance bro names like the dirty pickle martini and the Moscow tool (served in a penis-shaped copper mug). All the appetizers looked painfully crunchy and gluten free. Billie arrived first. Arabella had arrived on a separate flight and was on her way in from JFK during rush-hour traffic.
It was my first time seeing my friends since the accident. In truth, I’d overprepared and practiced talking so much that by the time I got to the hotel lobby at six that evening, my mouth and the surrounding muscles were already closing for business. The net effect is that my speech sounded vaguely like a deaf person’s speech—not that there’s anything wrong with that—it’s just not what people were used to hearing from me. I still had a shitload of pins and plates holding things together. I needed a Spanx for my face, but I missed these women so much. I had to see them—even as broken as I still was.
It was a warm-ish day in fall, but the subway downtown was still so hyper-air-conditioned, I had to wear a turtleneck. When I walked into the lobby, I immediately spotted Billie at the front desk. She was charming her way into a bigger room—one of her many gifts. She was thanking the desk clerk as I called out to her. She turned and grinned “Jonesy!” Oh, here was someone both fabulously extraordinary and functional and all at once. Could her normalcy just rub off on me for five seconds? It was all I needed, I thought—the sympathetic magic of Billie.
She didn’t seem to react to my appearance as much as my words, which were still off-kilter. As we slid into place in the hotel lounge, seats were filling up with gross finance bros. My mouth and gullet felt like an echo chamber with all the vowels bouncing around the inside. I sounded like a sea lion, but I tried to pretend I didn’t care. I was just glad to see a friend from home. Arabella was still on her way and texting from the cab, but I knew what she was asking: “Is it really that bad?” and there was Billie texting back in between trips to the loo. “Oh, it’s bad!” Not that she was judging, except she was. It’s okay. At least she just doesn’t do that very New-York-lady-thing, which is a total trap. It’s when you ask a girlfriend if you should have something done to your forehead, neck, or eyebrows, and she lies to your wrinkly, tired face and says, “I don’t even know what you’re talking about! Your [fill in body part] looks amazing to me!” Not with Billie. She asks for the truth and she tells the truth. No filter. “Yes, you could do with a thigh lift,” she tells you while studying your bare legs and it would mostly be true. Neither she nor Arabella is the type to beat around the bush, and boy if I wasn’t the bush right about then. I felt pitied—and it was the worst darkening feeling—seeing them trying to make sense of me for the first time. I could see them renegotiating the angles they had known with the ones that were new. I ordered a “What She’s Having,” which seemed to be just a splash of rosé with club soda and a twist of lemon, and we caught up on the latest West Coast gossip, discussed various divorce proceedings, affairs, and which teenagers had come out to their parents as pansexual—a perfectly reasonable choice. Why cling to binary anything these days?
I tried to maintain an upbeat attitude, but as the night wore on, I could feel myself sinking. I was like a ship with twenty-five-thousand-pound keel, but instead of self-righting, I was just dragging everything down alongside me. I knew going home that night in the cab I was not the same. Nothing was the same. We’d been at Mezzrow, this underground jazz club on West Tenth Street, when I couldn’t deny that things with me weren’t right. Mezzrow is a place that bills itself more as a “listening room” than a club. Frequently sold out, it really only has a front row and is probably the most intimate venue you’ll find in New York City to see and hear amazing musicians. Two eleven-hour reconstructive surgeries and multiple other procedures after my big seizure in the coffee aisle and I still wasn’t back to me at all, inside or out. Being there with Arabella and Billie drove this home for me—hard. They were flirting and exuberant and carefree. Both had a way of making friends with the entire world no matter where they went. I wasn’t ready for that and I knew it. It was as if I was still wired shut in so many ways.
I walked into my apartment on the Upper West Side, both girls at their dad’s, and I despaired. I wasn’t going to get better. The seizures would keep happening. I would keep breaking things. There were my girlfriends off living their normal, full, rich, kooky, working lives with husbands and vacations and joy and there was me: permanently disfigured, scared, exhausted, jobless, speechless, and joyless. I still felt like I was dying.
This is where little blondes check in…now here. I thought. This is my ending, I thought weeping in my kitchen.
I still felt so muzzled. Every waking second, the neuropathy had my face feeling like it was wrapped tight in duct tape. I’d tried to demonstrate the feeling to Ed one night out at dinner by squeezing his chin really hard with both of my hands, and even though Ed is a huge, tough unicorn with a superhero-level threshold for pain, he never tried to pretend to understand: “So, that’s what it has felt like all this time? That must be the worst!” To which I’d nodded and said, “Yes, it is!” and explained that this was why it was making me so completely bonkers. I could never ignore my goddamn mug. I’m sure the people in the restaurant thought we were the biggest weirdos, but who cares? This is New York. It’s why you move here to begin with. It’s the one place on the planet that gives you permission to be exactly as weird as you are because you fit right in with the rest of the marvelous, struggling crazies.
But there were no words for the dark emotional despair I felt that night after seeing Arabella and Billie again except that I knew now that nothing was ever going to be the same for me. I was always going to be a broken spaz; there was no hiding it. There would never be anymore “passing” as normal or a non-spaz or neurotypical. And I just wanted to sleep through the rest of whatever that meant. So, I did. Or I tried to, except I woke up feeling so bad and so terribly hollowed out. I was buzzing so electric with an aura, I thought I might set the whole building on fire while throwing my guts up beside my bed. With my jaw still growing back together, each hurl felt impossible, like I was having another baby—but this time through my mouth.
Bad, bad, Leroy Brown. Baddest girl in the whole damn town. You might have guessed by now, but I’m naturally a little heavy on the Thanatos. I’ve always sought to hide my underlying Goth tendencies—the result of the early loss of my one true love, Jim Croce, who died in a plane crash. My fuck account was running so low after so much loss I worried I would have to start giving out IOUs for new ones, that is, “Dear so-and-so, IOU because I totally give a fuck about what you think and what you feel, and so on.”
I can’t remember who came up with the concept, no doubt some thinker before me like Hannah Arendt, but in this black moment, my despair seemed like the most extreme manifestation of the ordinary. Standing in my kitchen, crying over how one can of coffee and one electric moment had broken my whole life. Looking through old photographs of myself before was a kind of endlessly boring and repetitive exercise whereby I found myself always straining toward the woman I used to be. It felt sadistically futile.
But suddenly you look around your kitchen and your life with its jutting refrigerator and jutting chin and realize everything is destroyed and that nothing will ever be the same. That clarity is terrifying. Your nostalgia for what was is so strong it becomes deadly.
There is a peculiar disturbance in the brain, I believe, when something profoundly familiar appears in a strange context. It usually happens right before a breakdown. My everyday world had become so tinted with the dark sheen of despair that my girlfriends’ shiny, jubilant normalcy had proven almost too jarring. I had reached a kind of reckoning wherein it all came flooding in, how much I’d lost. Under the surface of things, I had changed irrevocably.
I couldn’t risk another seizure there on my own, and I didn’t want Arabella and Billie to feel like th
ey had to babysit me on their big weekend in the city. They had tickets for culture and shows and things. Ed was closing up his summer cabin in the Berkshires and Holly had her daughter home from college. I also didn’t have enough confidence in my new meds yet to “werewolf” myself on my own. I had to go to the ER. I couldn’t risk breaking everything all over again.
I WRITE A VERY SNARKY weekly rant called Gotham Girl. As part of my trying to get better, I’d started to focus mostly on New York’s incandescent weirdos. I love them. I love this city, this capital of neurodiversity, because it’s a place that lets all these differently wired people be how they are and it accepts them. This is a place where a nun, a drag queen, and a hard-boiled detective with Tourette’s syndrome can all mix it up and usually be fine.
But things were not fine. I had gone into the ER, trying to do the responsible thing because I was worried I was going to have a seizure, and it had all gone sideways. I had said the wrong thing, in the wrong place, at the wrong time, and now I was sitting in a mental hospital with my closest girlfriends.
“What on earth did you say to them, Jonesy?” Billie sat back in her chair and surveyed the expanse of the cinderblock day room in full-on WTF mode.
“I said…I didn’t necessarily want to spend forty more years having seizures. I don’t think that’s unreasonable? I was actually trying to do the right thing, and now they won’t let me go home.”
“Oh, for fuck sake—I’d totally kill myself! It makes perfect sense,” Billie proclaimed loudly. The nurse looked over now.
“Not helping!” I whisper-yelled now. “You can’t say those kinds of things in here! They take it all very, very seriously.”
Here they’d both flown back from San Francisco for a big girls’ weekend and now I’d gone and ruined it. I spotted their couture through the small wire-hatched window in the door. They were both dressed to the nines in Alexander Wang and Phillip Lim, ready for a big night out. Billie is tall, blonde, and fearless. Her charisma is an unparalleled weapon. She’s the Obi-Wan Kenobi of British female charm. Arabella is willowy and fiery with rich, auburn, shoulder-length hair. The cut is always perfect. She has volume without frizz. Her gladiator pumps could kill you in a millisecond—so tall and sharply heeled. She is also one of the most generous people I have ever encountered.
“Besides, my family lives forever,” I continued. “I’m the healthiest spaz on the planet.”
“Well,” Billie said, “I’d be fucking insane if I’d broken everything. Did you tell them you don’t actually want to die right now?”
“Of course I told them I don’t want to die! I went to the ER because I thought I was having another grand mal. I just didn’t want to break any more bones, but the doctor there was practically Doogie Howser and twelve. I think I scared him. I doubt if his testicles have even descended yet.”
“You sound so…normal!” Arabella piped up. She was momentarily focused on removing all the individual staples from the stack of US Weekly, People, and Vogue magazines they had brought me. Apparently, tiny staples were not allowed on the psych ward because they could be turned into objects used for self-harm. I had no interest in harming myself. I just wanted to go home.
“I know, right?” I whispered. “I think it’s the total fear coupled with the intense muscle relaxants they gave me to prevent the seizure. My face isn’t going into lockjaw mode the way it usually does at the end of the day. But there are people here in serious difficulty.”
Arabella asked, “Will you be out in time for the opera opening?”
“Um…I’m not sure?” Oh God, my girlfriends were party-hopping, psych-ward socialites. How was I the one who was locked up again? I’d just wanted sleep and to not spaz again.
I heaved a sigh slouching in my chair. I was never going to get out of here with these two madcap lovelies as my references. They had no idea I was so broken. Or maybe they really did and this was exactly what I needed: not to be made to feel bad about it. Meanwhile, the nurse was signaling that our time was up.
“Don’t get that out,” I whispered to Billie. I could see she had stashed some champers in her purse. “We’ll be so busted. Look, people who have seizures are often mistaken for having other things—like being junkies or being mentally ill. All I know is that I’m sad. I miss myself…from before and I don’t know if she’s coming back.”
“ARE YOU CRAZY?” I couldn’t believe her.
I realize now that this was probably an impolitic question to ask a shrink—especially one with a boyfriend reluctant to commit and her twenty-nine-year-old biological clock ticking, and who was already late to Rosh Hashanah. People in New York will tell a mute person everything. The CIA could use me on terrorists and I’d get the evil masterminds to spill every last secret down to what they’re getting their favorite auntie for her birthday.
“Ms. Jones, do you currently have thoughts of harming yourself?”
I sighed so hard I could have broken my face all over again. “No. I think there’s been a misunderstanding. I just wanted to sleep. I have epilepsy. My last seizure was very bad. I was trying to avert another one by coming into the ER voluntarily. If I’d wanted to kill myself, all I would have to do is stay home in my nice, comfy apartment with my books and not take any of my antiseizure meds and my brain would take care of things on its own by burning out like a light bulb.”
“So, you don’t want to die?”
How could I get it across to her? “I don’t want to have seizures. I’m homesick for my old face and life, but no, I don’t want to die. Just please, go to Rosh Hashanah,” I pleaded, exhausted, my right to the truth had been completely revoked.
“What about grief counseling?”
“For what?”
“Your face?”
“Oh.” I half thought she was joking. Then I remembered where I was.
“Well, it is like a death, isn’t it?” She offered.
“Yes, I suppose it is.” Oh my God, I thought. That was exactly what I needed: a process for mourning the old me. “Can you give me a referral?”
You can see a small spark of happiness in a doctor’s eyes when they realize they’ve solved something, when they’ve made a small but significant difference. “We’ll get you discharged tomorrow morning,” she said.
I TOOK MY LOOSE-LEAF celebrity gossip magazines to the TV room where all the other patients were watching The Bachelor. There was a vast shortage of reading material on the ward, so I plunked them down on the coffee table for the other inmates, who included a permanently irritated socialite, a schizophrenic philosophy professor, a gangster artist who thought she was Maya Angelou, a fifty-something-year-old teamster guy, and a young bipolar Columbia law student—who made a point of always answering the only phone on the ward. Together we resembled the goofy, misfit cast of a sitcom. I watched as they flocked to the new reading material, sharing sections with pronounced civility. Here was my tribe.
I know there’s a great deal of stigma to overcome with mental illness and chronic conditions like epilepsy, but I thought to myself in that moment—and I still believe this—maybe sanity is slightly overrated. I’ll take these people on the ward with me. And I’ll take Billie and Arabella over bland, ordinary folks any day.
17
DNR
IN A TEACHING HOSPITAL, surgery is like an office party where the backstory is that everyone in the room is up for a promotion. There’s music, there’s mingling. Everyone is laughing, being witty and charming and on their best behavior for the boss, which in this case was still maxillofacial program head Walter. There’s usually always one cocky-cad-hot-shot in the mix—handsome but also handy with a scalpel. And you are the guest of honor, who no one really knows that well, the one who is held at the door for check-in, questioning, paper signing, and then suddenly they’re drawing on your face with a Sharpie so that they don’t cut in the wrong place. They really are terribly excited to have someone to
cut open. It’s a teeny bit creepy.
By the fourth surgery and after a hundred or so smaller procedures, I could spot the fear in their eyes, especially the anesthesiologist. She was a young, dear heart, who still had baby fat and dimples. She looked terrified that she was going to kill me. Lord, that breathing/feeding tube thing up the nose and down the throat was just so Guantánamo. Crikey! But there is a deep fatalism as well as a strident optimism that comes with having anything chronic and spending two years with a doctor—week in and week out. Only in New York would this happen. I ran into Walter in the neighborhood right before my surgery and after another patient’s funeral. The patient was a jumper who had committed suicide—successfully this time. Walter was so sad. I don’t think I’d ever seen him so down. He kept telling me I needed to eat more, that I was too skinny, and I told him I had just had a burger with my friend Debbi and now I was in pain from yapping with her for three hours. He joked, “So, what’ll it be, kid, Motrin or heroin?” This had been the banter of my weekly play date with him. I’d gotten used to it. I’d gotten used to him. I looked forward to seeing him and everyone in the office there, the glamorous Anna, the hilarious Marie, and the quietly cunning Christine, always a glint in her eye, because it meant progress, even if slow, even if it meant I had become a professional patient. Optimism over the course of years of multiple surgeries and procedures requires a kind of stubborn, willful innocence, a movie-style suspension of disbelief for a really implausible horror film. Fatalism is practical and sensible. One in five epileptics dies from a seizure. What felt most impractical, most delusional, was to try to keep living if your body and brain were done. What people with chronic conditions like epilepsy live with more than anything is the fear of the B word: burden. No one wants to become a burden or a victim to anyone. The whole point of these years is how to learn not to be devastated by every big or little thing that happens to you.
Gotham Girl Interrupted Page 17