As I stood there in the doorway now with Marilyn and Biscuit, I heard myself and she was right. My speech was better. Then, she leaned forward and said, “You know, if you just put your top teeth on top of your bottom lip like you’re a simpleton with buck teeth you will totally nail the ‘Fuck off.’ ”
14
Get Your Freak On
TELLING THE PERSON you like or even love that you have epilepsy is hard, or at least it was for me. I could hear Loïc saying it now, in his very serious, very incredulous Frenchy voice: “Oh, but mon amour! You are a genetic cauchemare!” (French for nightmare.)
I knew I wasn’t the girl for Loïc. Unless a doctor also surgically removed my conscience, it would be a mistake to get any more attached and not tell him. I’d gotten very good at hiding my epilepsy for a while. I hid both my pills and my auras. I swore everyone in life to secrecy, but I’d known it was only a matter of time before he either found out or I ’fessed up. We had met the year before, in 2014. He had never been married and still wanted kids. I already had two that I wasn’t taking enough care of these days. I had to admit it: I was a genetic nightmare. To be an already childish grown-up with epilepsy, possibly parenting a new child who might be predisposed to epilepsy, depression, and anxiety seemed unimaginably hard and unfair to both him and any subsequent people we might make. It was over.
Even before seizures and epilepsy, dating had been hard enough. For one, I had never been good at reading social cues. I am a nerd, and if I had been born a boy, I would have probably fallen in with the Dungeons and Dragons computer kids and been constantly bullied by the big, scary jocks. And even when I did manage to grow out of my awkward Edward Scissorhands teen years and into my cuter, more grown-up face and self, I still had terrible luck dating.
Prime example: back in my midtwenties, I once went out on a blind date with an older guy who took me to see Schindler’s List. I was just trying to say goodnight and totally ugly-crying in the doorway of my little West Village studio and telling him that I was too sad to ever see him again. Thank you for the sushi. Goodnight…sob, sob, sob. No, you can’t come in. Besides, I’m not into the midlife crisis set.
With marriage, I had never known such relief. Finally, no more telling your story to new people—you had your person, your favorite entertainment in all the world, you didn’t even need to go anywhere or have any money. You could just stay home all day and have sex and play house. I would have lived in a tent with my first husband. Forget sushi. Forget Schindler’s List. I had finally found a degree of nerd who complemented my exact degree of nerd. What’s more…I believed in him, in his novel, his writing, and his brain to the nth degree. I believed in all his dreams. He just didn’t believe in mine and that’s not his fault at all. I think I would have divorced me too. I was a jerk. I’d been so frantic to save both girls from having anything but a normal, perfect life. During that time, my remodeling and redecorating took on a decidedly aggressive tone. I don’t know how anyone put up with me. I scraped so much wallpaper and flipped so many houses, I am probably responsible for the US housing crash.
But dating as a single mother is even worse than dating as a never-married woman. Yes, you know a little more about the deal breakers, the things you can live with, things you absolutely cannot abide. But when you have children, you have so much at stake, so much to protect. You don’t want to harm a single hair on their little emotional heads. You’ve already done that to a certain extent if you’ve split up and had to move and change schools. It’s a lot for tiny, delicate hearts to process. I didn’t want to inflict any more damage than had already been done.
I decided to keep things “church and state” when it came to dating and the kids. My heart was broken. I couldn’t conceive of life without my ex-husband. Maybe he was my life’s big love and that was it. In my mind, we had been through too much together to throw it all away. Still, I knew I needed to heal and figure how we were going to be a Gilmore Girls–style household, so the most important thing was to have rules. Here’s what I came up with:
No introductions. I was not introducing them to anyone unless I absolutely knew he was a person who could go the distance. This would not be a Disney movie where the kids would be peeking out the upstairs window as Mom’s new friend arrived to pick her up for a date. If I were going to be dating anyone ever again there would have to be a lot of vetting off-site. Background checks, references, lab work, and so on. I would meet the person at the restaurant in my own car. There would be no nightcaps. I didn’t want my kids getting attached to anyone who wasn’t anything but a friend. I didn’t want there to be any male “friends” hanging around. It just seemed wrong. Plus, I know my children and they’re rascals. I didn’t want them scaring off any truly worthy candidates. That was my department. They still managed to one-up me on this front one time. I was on a date and they locked the nanny out of the house with her phone and told her she couldn’t come back inside unless she called me and said to come home right that instant. Needless to say, I made my excuses and cut the dinner short.
No overnight guests. I’d decided on no grown-up sleepovers unless I ever met someone and things got super serious. If there were going to be trysts en route to getting shack-up-together serious, they would have to be at the prospective person’s house and not at my house when my kids were around. It would be too nerve racking and confusing—at least until everyone was much older. Myself included. This sort of worked for a while. Then, it didn’t—but that can come in another book.
So, dating was already complicated enough without factoring in a chronic condition, especially when the SMMMs (smug, mean, married moms) already thought you wanted to bed their doughy, boring husbands. Trust me, we don’t. I don’t. So that was another rule. Only date the fully divorced, knowing that their standard line is, “She was crazy. I just couldn’t take it anymore and I’m so lonely.” No, no, no. This was already a bad narrative that rarely ended well for the woman.
With the diagnosis and subsequent seizures, dating changed yet again. All the forums and articles I’d read about dating with a chronic condition said to wait to tell the person when there’s a foundation established. The problem is that I am a terrible liar. My face (at least before I broke it) showed every fib, every fab (this is a really big lie), every half truth, every whole truth, and every well-intentioned white lie. Before epilepsy I would have made the worst spy. Every emotion just showed up, plain as day. But when it comes to dating with epilepsy, suddenly you feel like every potential relationship is beginning with a lie, like you’re carrying around this deep, dark secret. You have this big, scary vulnerability that is your ultimate kryptonite. If you are a really crappy liar as I am and you happen to think you might really like the person, you just want to take your glasses off like Clark Kent longs to do with Lois Lane and confess right then that really you’re a spaz. Hiding such a big thing can feel like such a massive omission on your transcript.
So, do you confess? Do you just come right out and spill the brain beans? What hints can you drop along the way that might lessen the impact, the crushing blow of the news? Maybe they could already tell? You don’t have to necessarily adopt the persona of “Angry Ep Truther,” even if you are a little that way. If you wait until you’ve established a baseline of mutual trust, where he (or she) has shared some information about himself of equal proportion, it doesn’t have to be so bad—even if you are a genetic cauchemare.
My diagnosis brought with it a sustained fatalism—the knowledge that I might not wake up if the next time I seized had an odd effect. I no longer clung to life as I used to, which was kind of a huge game changer for a chronic worrier. I reasoned that if I wasn’t going to wake up, I might as well go out satisfied. I was a horny motherfucker with the impulse control of a toddler. Oh, the promiscuities!
My forties should have been about fighting off decay and the slow, sordid demise of my fuckability, but I think less about this now. The whole face re
building, learning to speak again, and getting seizure-free has distracted me. Epilepsy had me so scared that I would never find love again, at least not on any consistent basis with a single person I could stand. I suppose I could grandly pronounce, “Behold me in all my glory as an old, whitey spinster!” but the thing of it is, all of it has added up to be the best douchebag detector ever: my epilepsy, my slightly shifted face. I’ve also come to a time of life where getting your “freak” on starts taking on a whole new meaning, in that it’s about finding the equal freak to your freak, the person who refuses to behave in the same way you refuse to behave. It’s more a partners in crime slow burn than any rush of infatuation.
Telling someone you have something chronic like epilepsy, someone you think you might love and who might love you, can feel like pulling off Grandma’s nightcap and revealing that you’re the wolf. The person might scream, and you very well might howl, revealing a perfectly crooked grin, whereupon the person might kiss you. Or flee. It happens. We are, after all, not our mates.
It’s tricky because in revealing yourself so personally on such a fundamental, molecular level, you immediately shove the person right into a very gray area, one that generally shuts most guys up. Yes, you’ve gone on several dates and maybe even accepted a gift, you’ve made out with the person, felt around each other’s curves and contours. There’s no way after you tell him (or her) you’re a spaz (or fill in your blank) that his next move won’t be personal. It definitely will be—because you took a risk and revealed your biggest vulnerability. If his next decision doesn’t become specifically about you and wanting to understand more of what epilepsy means, he winds up looking like a super-shallow jerk. It’s hard and awkward, because you just hope the person will be better than they sometimes are. Any relationship worth being in usually comes with some complexity and angst. Everyone has something they’re grappling with even if it’s not readily apparent. You may not have epilepsy, but you’ve got a racist granny or a jailbird brother-in-law. Don’t be fooled. No one is not dealing with something at some point. And if the person does react negatively at first or feel betrayed, it’s not to say they’ll stay that way. People need to be taught how to see us, how to respond and live with us.
The person may have noticed from your house that you have something medical going on, some more complex backstory than you’ve let on. I once had a boyfriend who mistook me for poor because my bed was on the floor. It had nothing to do with solvency at the time and everything to do with worrying about falling out of bed midseizure/midsex. I slept on a frameless mattress and had only rounded, padded corners throughout my house.
There is a deep, intransigent weirdness of simply being a woman with epilepsy, a person who is electric. Now there is always a third person in the room, in the bed, and at the table. Seizures, as with most things chronic, tend to bring on some degree of sexual chaos. You need to be willing to embrace total abjection—neither subject nor object—because you, the spaz, are something in the middle. It may turn you into the butt of someone’s joke, but perhaps your true kink lies in tricking yourself into being vulnerable and open enough to the threesome that is you, your partner, and epilepsy. Then, suddenly, there you are, looking like you’ve been struck by lightning and are dying over your white wine spritzer. Everything can feel very high stakes. “What if you seize while we’re in the middle of things? What do I do?” he might venture. “Does ardent love-making bring on this sort of thing?” he asks timidly. “What if I accidentally kill you?”
“You won’t. And if you did, I certainly won’t have any idea about it. I’ll be dead. If epilepsy kills me, it’s on science to figure out. For my part, given how gorgeous my seizures can be, it might not be the worst way to go.” Not everyone is up for an answer like that and so you end up having to get over a lot of relationships that never were, relationships you imagined going somewhere, because people are simply scared and seizures break all social contracts. But again, it’s a great douchebag detector.
Then there’s the friend zone: we’re so filled with longing as human beings. You just want to lie in the bed with someone, to feel close in a way you haven’t in ages. Boys always employ this line, so it’s even more suspicious when it comes out of a girl’s mouth. It is the line of every nice guy negotiating to spend the night, and then you find yourself making up excuses and half-seriously speaking in the patois of consent by referencing the respecting of boundaries and keeping your clothes on.
While I haven’t had a tonic-clonic seizure in eighteen months, my brain will never be “normal.” It will always control my life in ways other people can’t even imagine. Anxiety in grocery stores and Martinson coffee is still a factor, but it doesn’t define me as much anymore. It’s no longer the first thing I tell workout buddies; friends can be around me for months before they notice or ask about my strange sleeping habits. I have made a religion of bedtime. It’s simply the same rites with the same pills at the same time. Lack of sleep is probably my biggest seizure trigger. I still sleep more than anyone I know. It makes me boring, all these naps, but I no longer care what people think, so much.
My condition and my meds are slowly becoming something people gradually realize about me rather than something I stress about them needing to know right at the get-go. I school them gently in a do–re–mi of to-dos should I ever have a seizure in their company. I tell them how my mind begins to float and swarm, like fireflies in a jar. It’s a “shit’s going to go down” panic that tells me to get to a safe place. A soft place. There’s the shimmer and I’ll feel like a current is rising up and passing through the top of my head, glowing, and flying out my eyes while I lie on the bed or the ground. “I’m buzzing,” I’ll say and then of course I’ll be unsure how to follow up the phrase. What can I say to help the person understand? A shallow exhale of anxiety is what you have come to anticipate and expect. Sometimes I’m convinced that no other person will ever know my electric brain the way I do and that I’ll always be on my own because of it.
But unless it’s the right freak for my freakish self, maybe it’s not so bad. In this way, love becomes terribly self-selecting. Those too afraid take themselves out of the equation. Those curious enough tend to stay.
15
I Feel Bad About My Face
“OKAY, MS. JONES, now if you could just try to look as deformed as possible…” the nurse coached me from behind the camera as I gawped. “Oh, that’s perfect!” The camera shutter clicked.
“But…I didn’t do anything!”
“Oh, oh! Do that again!” More fervent shutter clicking.
This was the most surreal photo shoot I’d ever been witness to. I attempted a full-scale Quasimodo expression by smiling with the part of my face that remained working—the area around the left corner of my lip and eye. Still, it was necessary if the insurance was going to cover the reconstructive procedures to retrofit the pieces of my face back together on a finer level and restore feeling. I’d been into the office for several meetings. My new boss in New York had recently all but told me that since the accident I was too ugly to come to client meetings. “They won’t be comfortable doing business with you across the table” was, I believe, how he put it.
“I’m pretty sure you can’t say that.” I told him, in my best Waspy-Connecticut accent.
“You’re a contractor. I can say whatever I want,” he shot back.
And he was right. As a contract creative director, he could cancel my gig at any time for any reason he deemed appropriate. I had to get back to feeling and looking like the person whom people (even the jerks) recognized and knew. Still, I was so crazily down about the comment, I’d started half-jokingly referring to myself as a deformed girl in private. Ed had grown so irritated with me, he threatened to make a swear jar for my face. The rule was every time I mentioned how freakish, deformed, and/or asymmetrical I looked, I’d have to put a dollar in the jar—except by then I was almost totally out of money, so technical
ly I would end up owing the jar, which we decided would make me even sadder.
I really needed to return to work full time. More importantly, I needed to feel like myself again. I still only had sensation from the very top of my cheeks up to my hairline.
The first weeks home from the hospital had not gone quite as I’d anticipated. For starters, I was really weak. Like seriously, old-cat-lady-with-a-walker weak. I shuffled around the apartment sucking down smoothies and finely pureed soups through a straw. I never seemed to be able to get enough calories into my person for everyday life, so I still slept fifteen hours daily. I think in my damaged aftermath I expected everything to go much faster and align with the pace of the city, especially now that I was back in my own bed. With the girls both away at school and at their dad’s, the joint would be quiet and I would bounce back from this little crisis, I kept telling myself.
Yes, I loved my little hovel of an apartment right next to the park with its overly large refrigerator, its floor-to-ceiling bookcases, and windows that opened out onto an overflowing jungle of a back garden. There was a green velvet chesterfield sofa that my friend Li helped me pick out, my striped overstuffed reading chair where I could lounge for hours, both legs hung over the arm. There were big chalkboards on the walls of the tiny kitchen for random ideas whenever they sprang up. Right in the heart of the ‘hood, this apartment was ever so bright and calm in the back rooms. And there were so many birds. A symphony of finches and whippoorwills. Still, I nearly killed myself with a first post-op sneeze at home alone. The dust in the place was like a thick coat of frosting on Sophie’s old turntable and all the surfaces, but I took comfort in the sameness of things, the small things that had not changed. I’d been told the healing would be neither progressive nor linear. It would be an awkward slog of crawling an inch forward one day only to slip back five the next. One day my chin might feel like it was being stabbed with a dozen knives; the next day I might lose all sensation and be drooling like a Labrador. I just hadn’t imagined it would be more than a few weeks, or as carnivalesque as it was turning out to be.
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