On the table now, I was talking with the surgical nurse, answering her last questions before going under.
“And it says here that you have a DNR—a do-not-resuscitate order?”
“Uh, yeah. If things go south, just let me go off into the universe with the rest of the star stuff.”
Walter interrupted, “What do you mean you have a DNR? You don’t need a DNR. What, are you depressed?”
“Err, uh, no. I’m mean…not today. I just don’t want to wake up as a root vegetable and be a burden to people. Is that too much to ask?”
He shook his head. “Well, I won’t allow it. Why do you need a DNR?”
“I-I was just doing like Suze Orman told me…” Suze had been one of our clients and had always preached on the merits of having an advanced medical directive. What can I say? Even if you’ve heard it before, the woman makes total sense.
“Don’t you want to live?”
All the residents went quiet. “What about the girls?” he demanded. “What about your dumb dog? And what about Ed? You can’t just quit!” I’d never seen him so extraordinarily irritated, so thoroughly Oscar Madison-ish.
“Fine, I’ll live. Jesus…so touchy.”
And we started laughing. And I did. Live, that is.
18
A Love Letter from My Brain
I GOT THIS LETTER from my brain yesterday. The penmanship was atrocious. She must have been drinking. I think she may be under the impression that she is a young Elizabeth Taylor. You can almost picture her staggeringly violet eyes staring you down as she speaks:
Dear Alisa,
My dearest love. Yes, I know it looks like a real mess in here right now and I know my writing you this love letter may seem a bit unorthodox in light of the situation but, darling, I couldn’t resist. The temptation in me, across my every axon and dendrite, was too powerful. I know you feel betrayed by me, by my electrical taunts, by what seems like faulty wiring between my lobes, but my love for you is boundless.
It’s complicated, but I have evolved and adapted for more than one hundred thousand years across one hundred billion cells to keep you safe, to keep you interesting, and to keep evolving. In truth, I am a secret radical—like Jane Austen or Emily Dickinson. With more than sixty-five million people worldwide living with epilepsy, one in twenty will develop seizures in his or her lifetime.
These people don’t need practical, prescriptive advice for surviving life with seizures or a chronic condition. They need to know how to make meaning of seizures, of epilepsy, and of life. I am more of a process than I will ever be a specific organ with a function, and because of that, I am always becoming something new, something else. Writing about seizures is like writing about the soul. It’s forever elusive. Every time you think you’ve captured it, it shifts form or disappears altogether.
While we may indeed have to respect some of the cards we’ve been dealt, we can still recraft the story—to laugh a little. Or a lot. You are never beholden to a shit narrative, my dearest love. Try to take that very same richness and intensity of feeling that comes with this electric condition and apply it to every moment in between and ahead.
If you feel you have been on the outside of your life for so long, like an uninvited guest hovering at the periphery, and that you can never claim it back, I am writing to tell you that you are wrong. I, your brain, was wired to write multiple futures. When I send you messages that say, “Stop, go back!”; or, “Don’t do this! This is dangerous and it will involve pain”; or, “You will get hurt,” I need you to listen and hear me and know that I have evolved over all this time to protect you and to perpetuate your species. Every problem I present you with is an adaptive piece to propel the story. Your story. The one you are writing at this very second. If you learn from these adaptations, if you are obsessed by them, take responsibility for them, and ask yourself why they happened, always why, so as to experience them so deeply that they feel like a gift, then you can forgive yourself for these misadventures and move forward. Then you can heal others, and in so doing, heal yourself.
Now, as your brain, I feel I have a duty to inform you that I have this fantasy that all the nerds and weirdos of the world will read these words here and, bit by bit, even in the reddest, most singular, and closed of rural backwater places and towns, they will grow into radical neurodiverse sleeper cells. Think of them as subversive little tribes of epileptics, autistics, depressives, and other neurotypes all disrupting the stigma. I say this because I want you (and all the differently abled) to experience odd, rare sparks of joy; to be curious about what it means to be electric; and to understand how you can take something that should be really, truly awful and rewrite it to reflect joy.
Words can spark such fires, and we are only just learning how to torch the ground rather than ourselves.
Lovingly,
Your brain (the spaz)
19
The New Rules of You
IF SELF-KNOWLEDGE is the key to happiness, then these are the practical things being a spaz has taught me beyond an extreme hatred of yard art and sharp coffee tables. (You only need to hit your head so many times on a garden gnome to know that they serve no purpose for anyone.)
We need playlists—be they music, literature, TV, or movies—to remind us who we are and who we can be, to help reinforce our personal myths of self. In my case, I really needed my funny self because my grief needed somewhere to go. I also needed to change my work life considerably, which meant working less, saving more, and learning to live with uncertainty while still making ends meet.
So, when freaking out over hormones or seizures or big professional or personal stress, I decided I needed new rules and to try the following:
Implement the total high-protein, high-fat diet. Drink bacon. Go on a beef cleanse! Once I could really eat again, that’s what I did. From steak tartare to a whole prime rib—it actually made me feel so much better. Also, I stopped drinking. Sobriety can be a lark. I actually felt so much better. I had…what’s it called again? Energy! Instead, opt for lots of sparkly things: cream soda, juice spritzers, and playing Bananagrams with Ed.
Remember your fenced-in area when you’re just pissed as hell at white men everywhere and maybe channel rage creatively? Ever thought of macrame? No, not so much. Just remember that emotional regulation is your friend. Channel your rage toward some serious house cleaning. New York is filthy—everything here is covered in a thin coating of feces and takeout grease. Fire the maid and power dust. Throw tampons and pillows, no solid objects or phones, when frustrated. Try a temper tantrum on that Tempur-Pedic. It’s actually quite satisfying. Engage in daily exercise at the gym, dance class, or better yet, the park.
Make a chronic illness crisis playlist, meaning find your own macaroni and cheese comfort-food equivalent for movies, TV, and music for postseizure times or any time of big, scary, or chronic stress. What makes comfort TV? Hilarity and smaller, more addressable problems. It’s all about escapist entertainment that doesn’t make you feel you need a shower afterward. You want media fare that’s going to make you feel like you ate an okay amount of mac and cheese—but not too much.
My hard and fast rules for things to steer clear of: No politics. No Billions, even though Maggie Siff is a badass! No Homeland. No TMZ gossip or reality awfulness. No sad, scary news. No big disasters, nothing with facially oriented fight scenes. Late-night chat shows that are too shouty, angry, or political tend to exhaust this girl, so I pass on those too—as much as I love them during nonseizure, feeling-good, not-so-hormonal days.
Most of all, keep it light. You may feel like ugly-crying but resist! My playlist is very weird and very specific to me as it reminds me of who I am and what qualities I’d like to project internally and occasionally around the house. It’s all temporary, not-too-thoughtful distraction that says everything is going to be okay in my sometime-tumultuous little world (and la
tely in the greater world as well). And it’s totally girly, so apologies in advance. Listicle dropping…now:
Movies
Anything Nancy Meyers writes or directs is always a safe bet when I’m in postseizure mode, although Something’s Gotta Give with Diane Keaton is a clear winner to my mind. Plus, Diane writes out all of her sadness while boffing Keanu Reeves—which is a good for any writer.
Chick flicks where the heroine runs away are always a good bet. Anything where they eat and drink their way across Tuscany or the French countryside or a quaint English village will do. People write this genre off, but after a big seizure or chronic thing, you need a bit of “gay and away!”
Seems Like Old Times with Goldie Hawn reminds me of my love for dogs and hapless writers. I also relate to being torn between the impulsive allure of Chevy Chase and the steadfast reliability of Charles Grodin. The last shot in the film so used to be my face back when I could smile. Plus, Ed always tears up when he sees it, which is sweet.
TV
Bored to Death: There’s something about Ted Danson as Graydon Carter teaming up with stuck-writer Jason Schwartzman and comic book artist Zach Galifianakis and running all over New York City that comforts. Maybe it’s that they are solving petty crimes and having literary skirmishes that just makes my heart do a tiny dance every time I watch it.
30 Rock: I love its awkward beginnings and then how it evolves into some of the tightest writing you will ever see on broadcast television. The pilot where Liz buys all the hot dogs will make you feel good and also want all the hot dogs. The music cues always lift me too.
The Mary Tyler Moore Show: Loveable icon of feminism. Who doesn’t adore her hair—at least in the beginning seasons (volume but no frizz)? And the way she always says “Mr. Grant” is like an operatic vocal hug.
Midsomer Murders: Who wants to have cream tea and solve convoluted but still totally manageable problems, with handsome gents in the English countryside? I do! Sign me up! Plus, there are nineteen seasons to watch and then forget, and then watch again!
Pushing Daisies: The greatest TV love story ever told complete with pie and spinster aunties. The vibrant color of the sets is enough to lift my mood on the darkest of days. It’s total visual Prozac.
Okay, enough television—you should listen to Yacht Rock (cue Michael McDonald and Kenny Loggins) and read more anyway. In the meantime, here are some other new rules of me:
See a trauma coach, not to stir up the past but to reimagine the future. Maybe keep this person on retainer? Again, when about to go down the bad spiral and the chain of total mental anguish, ask yourself, WWNMD? Or What Would Nancy Meyers Do? How would she write this movie? Come prepared with crisp, white shirts and un-oaked Chardonnay. (Not too much, though, alcohol lowers the seizure threshold.)
Get your beauty rest. Sleep is the most important piece of the brain equation—especially when it comes to staying seizure free, so know this: Nora Ephron was right. It is that second glass of wine that keeps you up at night, so don’t do it! No partying with the Plastics as that kind of bullying will rot your insides and give you wrinkles. Know how to tell the good drama from the bad. Drama gets a bad rap, when people shake their heads and say things like, “She’s soooooo dramatic.” When is drama good? When is it useful? When it propels you into a new way of seeing.
You might end up with an overdeveloped sense of justice. I think it runs in our family. You might feel the need to right many of the world’s wrongs in ridiculous and unexpected ways due to a maniacally low tolerance for injustice and petty digs. But here’s the thing of it: spoon theory is real. Coined by Christine Miserandino in her 2003 essay “The Spoon Theory,” the idea grew out of a conversation in a diner in which a friend asked her what having lupus, a chronic autoimmune disease, felt like. Miserandino grabbed spoons from nearby tables to use as props.
She gave her friend twelve spoons and asked her to recount a typical day, taking a spoon away for each activity she undertook that day. Each spoon, of course, was a finite unit of her own physical and emotional energy and had to be rationed to avoid running out of spoons before the end of the day. The new rule of living with epilepsy is getting real with the fact that I have about four to five spoons in my drawer on any given day. I decide how to use them. I can’t use them all up on every skirmish—even if my exaggerated sense of what’s fair or right or how things should be is telling me to do so. Save your spoons.
That said, your cerebral lights could go out like that at any time, so take nothing for granted. Celebrate every holiday, even the little ones like Arbor Day—yes, national tree day—it’s the last Friday of every April, every year. Just don’t send paper cards because that defeats the overall purpose of conservancy.
Believe in and support places in the world that adapt to different neurotribes and neurotypes—places like the quaint village of Purley in Great Britain, which has evolved into a dementia-friendly town where if you get lost or forget who you are, a designated someone will make sure to remember for you and get you to a safe place. Glasgow in Scotland has also proclaimed itself a city morphing to better accommodate individuals on the autism spectrum who might be dealing with sensory overload. Leave it to the Estonian police force to provide on-site teddy bears to children involved in traumatic accidents where the parents are hospitalized. That may sound a bit harsh in the current dystopian political climate, but who would say no to such a small comfort to children in momentary crisis? The new rule of you is to ask yourself how you can be more human in fraught, uncertain moments?
Support neuro-specific design. From the airbag helmet to hearing aids that transition into vibrating bracelets for fire safety at night, these innovations are awesome. The round houses with rounded interiors and softer edges that can be 3-D-printed in a matter of days are perfect for different neurotypes. There are whole industries that can be built around neurodiversity, and we need to start reimagining our everyday world to adapt.
Don’t be a dick. It’s so easy to hop the express train to Dickville. This extends to your various mothers-in-law. It’s a universal truth that this will be a fraught relationship, so don’t go there; be nice because you’ll never win against his/her mother. That forty-nine-year-old dyspeptic person with rapidly developing man-boobs is still your mother-in-law’s baby. Let her reign supreme.
Health insurance company greed will soon manifest as the cruel embodiment of the corporate state in the form of millions of chronically ill, disabled, differently abled people suffering, so we have to look out for each other. Take care of your fellow humans be they spazzy or otherwise. Lovely weirdos can only make us stronger and save the world. Believe it. Find other people who relate to your brand of crazy, but don’t hang out with people who are exactly like you as it can feel like hanging out with only you and then you both morph into even more of a bummer. I’m just saying there are times you might need some vapid, slightly nefarious people in your life for levity, for diversity, and to show you very starkly what you are not.
When you are super sore from a seizure, you may want to take a bath. A shower can be excruciating with how many muscles are used during a grand mal. Many people will tell you not to do this. For my part, I like to sing in the bath so that whoever is around knows that I’m just fine. If I suddenly stop singing, the person I’m with knows to come in and check on me.
Beware of the third day after a seizure. This has consistently held true throughout my life with epilepsy. By the third day after a seizure (or a baby) you are probably due for a major meltdown, or what I like to call a HORE—short for HOrmonal Rage Event. It may have nothing to do with my hormones, but it helps to remember that the world may not be ending after all and that tomorrow is a new day.
In terms of consistent long-term care, you may need to go on a lot of first dates with different doctors throughout life to get what you need—do it. Remember, you are the boss of your health care. Don’t let medical orthodoxy get in
the way, and don’t wait to start a new treatment if things aren’t working for you. If I had pushed harder with my first jerk-neurologist to try the drug I’m on now, I might have been able to avoid breaking my face, jaw, and teeth altogether—but he didn’t think it was necessary.
Make a spaz kit so that you feel less anxious about being out and about if you have a seizure or any health crisis. What are the things you need in that moment? For everyone it’s different. For me it’s a combo: baby wipes, fresh knickers, emergency meds, Advil, bandages with the Neosporin built right in, a tiny toothbrush kit, and a talisman. For me, talismans are a mooring type of object that I immediately recognize, such as a photo, a keychain, or lipstick, that reminds of me and who I am. I tend to wake up afraid, so one key object or person is paramount.
Know that you will need to sleep for about two to three days afterward. This sleep will feel like twenty minutes because neurological time travel is exhausting, but this is normal for you.
You will be expected to have wisdom, bromides, and platitudes by your middle age, and it’s so totally okay to answer, “I have no fucking clue, but let’s figure it out. We don’t have to be devastated every time something horrible happens—we can even be funny about it.” That said, to smooth out the disarray that life may fall into after a diagnosis of epilepsy or anything seriously chronic, sometimes it helps a little to detach. Seizures have taught me that what the mind refuses to face, the body eventually will. To care for ourselves equips us to better care for our loved ones. And sometimes that means admitting the hard thing—that you’re ill, that you only have three spoons left in the drawer, and that getting better may stretch out over the course of a lifetime. I always thought that when you got sick, you either fought it and got better, or you succumbed; but what my seizures have taught me most about the gift of chronic crises is that you come to love the in-betweens so much. I never knew their full worth until now.
Gotham Girl Interrupted Page 18