Gotham Girl Interrupted

by Alisa Kennedy Jones

  In any case, even on meds, apparently I still do a fair bit of crashing around when I’m at peak spaz, and it had become clear that our household needed a set of instructions to bring me back to human, to decrease the anxiety and help people feel like seasoned professionals around me during a fit. I decided they needed to be werewolf experts.

  Some people might take offense to animal metaphors or my likening epilepsy to lycanthropy, but when I was searching for an analogy, I needed pop culture on my side. Having a seizure does not make a person a monster, but it is a very definite experience for those around you. The werewolf-cum-creature of the night concept was simply one way of framing it that worked for our household. We’d just endured the whole Twilight saga, so it felt familiar and slightly more empowered and badass than other comparisons. Plus, historically speaking, there were clear rules and protocols to follow when it came to werewolves. We needed those cue cards front and center to diffuse the fear. So, multiple, laminated copies of the seizure to-do list and script for when Mom has a fit became the big project. The point was we needed something semipermanent and codified that would guide people around each event, especially since the werewolf can’t speak for itself during the moment, which is almost always the case with me.

  Now, according to werewolf lore found nearly everywhere on the Internet and in medieval Eastern Europe, there are three approved methods for curing a victim of werewolf-ism: Medicinally, usually via the use of wolfsbane, which sounds like a fun herb to try, right? Just kidding, do not try this because I don’t even really know what it is; I’m a New Yorker, not a botanist. Surgery—also very scary. Or exorcism, which could easily count as me writing this book. Aside from the obvious parallels one might draw with epilepsy treatments throughout history, there were other werewolf best practices that I thought might hold some value for our seizure emergency plan while making it easy to remember at a moment’s notice:

  1. Love that fenced-in area. Turn me on my side, clear any hazardous objects immediately surrounding me, but don’t actively restrain me. This is a deal breaker as people who have seizures may exhibit absurd strength during a fit, and it’s possible for you to get hurt or for the person seizing to hurt herself. Turning the person on her side also helps to prevent choking due to foaming at the mouth or heaving one’s guts out. Wee. Good times.

  2. Watch the fangs. Never put anything in the mouth of a person who is having a seizure. I promise I won’t swallow my tongue. I might bite it, which is why you sometimes see blood foaming out of a seizing person’s mouth. And while you want to be sure the person is still breathing, no one wants to lose a finger.

  3. Embrace the faux-fur, people. Grab the nearest soft thing to protect the person’s head, face, and teeth. If out in public, a coat folded up under the person’s head works great. In our house, stuffed animals or fluffy couch cushions with washable covers have been the go-to. We also got a super-girly faux-fur rug for the living room that works well. The best invention I’ve ever heard of came by way of our neighbor Zach. It was a motion-sensing inflatable airbag helmet/collar originally invented for cyclists that you could wear around your neck. If it sensed you were about to fall in any direction, it would automatically inflate to protect your head and neck from breaking. Yes, such a thing actually exists. And given the state of my forty-something-year-old neck, this seemed like something to try, especially if I could accessorize it with glitter, a scarf, or a statement necklace.

  4. Even werewolves take a while to transform. So, always time the seizure. If ever you needed an excuse for a new smart watch, having a spaz for a friend or family member is an awesome one. Until they really do invent a Fitbit for the brain, timing a seizure is important for EMTs and doctors to know what to do next. If the seizure has gone on for more than five minutes, or if there are life-threatening injuries, breathing issues, severe lacerations, or a concussion, our household protocol is to call 911, preferably with an adult on hand. If it’s a shorter seizure, I always liked to recover at home in my own bed, with my family and amid familiar surroundings—so I had a note that declined transport that could be used. The ambulance alone can run thousands of dollars in some cities, and I’ve always found the hospital to be the least restful place on the planet. Between the medical device beeping and chaos of other ER dramas unfolding, it does me in every time. Ambulances are also a problem in certain cities as landlords can evict a person if the emergency services team comes more than eight times to a single address. It’s absurd and cruel to think about losing your house or apartment because your family called 911 to save your life, but this is why we need so much more research, accommodation, and advocacy for people with neuro-differences.

  5. Remind me who I am and who you are. You know how in every movie about werewolves, there’s always the scene between the wolf and his/her friend where it comes down to a moment when the friend is all “It’s me! You know me werewolf Alisa! We’re besties—not beasties! I know you’re still in there somewhere. Please, don’t eat me!” It’s the same with someone having a seizure. Chances are when I’m waking up from one I’ll be frightened, be disoriented, and have zero memory of what’s just happened. I may not understand where I am, who I am, or who you are. In fact, I may look at you like you are the monster and be terrified. Remind people seizing that they are safe, who they are, who you are, that you’ve got them, and that everything is going to be okay. To keep talking calmly to the person is, I believe, the best possible thing you can do in the moment.

  But what if you’re home alone? It may sound extreme, but I read about a woman who lived alone with severe epilepsy, and she actually spray-painted instructions all over the walls inside her house to remind herself of her full name, that she was home safe, and that she was loved so that when she woke up from every seizure, she could ward off the inimitable terror of having no memory. Her landlord must have been a saint. Still, the most important thing if you’re ever having a seizure while alone is the ability to self-identify and recognize your immediate surroundings. Your recovery from the moment begins there.

  If you’ve ever had a really bad hangover, just multiply it by a thousand-kajillion-million and add some miscellaneous injuries, deep shame, and despair and you’ll have an inkling of what you might feel like after a seizure. Hearing a caring, steady chant upon waking, one that reminds me that I’m still me (and not a wolf) and that everything is going to be okay makes such a difference every time.

  6. Keep an eye on the moon cycles. I know it may sound all Stevie Nicks and Wiccan (not that there’s anything wrong with that; witches are cool), but I mean this to simply say keep an eye on your own internal systems. If I know I’m going to have a seizure or if I sense one is on the horizon, I can sometimes prepare in advance not to terrify, embarrass, or injure myself. As I’ve mentioned, for me an aura can be anything from a shimmer to an electric current sensation to the feeling of a metal band tightening around my head, and in some cases, I can’t tell if I’m moving forward or backward and so I feel both at once. It’s more psychedelic than painful.

  Admittedly, I do need to come up with a better code word for it to help alert people around me, but these days I usually tell people, “Sorry, I’ve got to ‘werewolf’ myself, people.” The upshot is that I typically leave work early with the help of a friend, I go to bed with the requisite number of pillows (five or six), and I take some powerful emergency meds that I keep on hand that can help to ward off the onset of a seizure. This foresight, however disruptive to daily life, is the best way I can get myself to a safe place before things go down and reduce the drama for the people around me.

  I read about a man who had very short auras before sudden severe seizures. His mode of dealing was to lie down wherever he might be and bite down on the wallet that he always carried with him. He did this to protect his tongue before his seizures would start. I’ve been on the lookout for something to bite down on for a while because I do not want to use my wallet. As I mentioned ea
rlier, it’s attached to a big bag that I really, really like it and so that’s one thing I categorically will not sacrifice to epilepsy.

  7. Remember: technically, the werewolf is only on the hook for manslaughter, not murder. What this means is that in terms of the odd things you might say during a seizure, other spaz friends of mine have said extraordinary things before, during, and after their grand mals. One friend who was regaining consciousness after having a seizure on the trading floor of the investment bank where she worked told me she could not stop screaming, “Don’t take me to jail!” as the paramedics carted her away on a gurney past shocked finance bros in suits. Oh, how they must have been shitting bricks. It may have been based on what she’d seen with other colleagues, but she was absolutely convinced in the moment that she was headed for the clink. All this is to say, reserve judgment, you good Samaritans out there. Confusion, disorientation, and straight-up terror are common after a seizure.

  I’ve been told I’m pretty funny coming out of an episode. Apparently, sometimes I know things I never thought I knew, like obscure phone numbers. There have been other times in the aftermath of a seizure where I’ve thought, Holy hell! What do I really know that I didn’t know I knew? Maybe I know karate? Or Portuguese? Doesn’t that language have more than seven thousand irregular verbs? In this regard, my seizures somehow feel less regrettable. And there’s a hope for better moves with martial arts for sure.

  8. A reminder for the werewolf minders. It’s important for the people helping the person having the seizure to take a breather. I generally sleep for two to three days after one—not everyone takes this long to recover. I think it may be that I use so many muscles in my body during each episode—plus, there may also be injuries. For the people helping me, it can be traumatic, seeing the transformation the person goes through from aura to seizure and to the postictal recovery. Seeing a loved one so profoundly helpless, vulnerable, and possibly hurt can make for major anxiety, depression, and PTSD. It’s okay to take a break. You need to look after yourself in whatever form that best takes.

  For the person having or who’s had a seizure, it’s okay to be bummed if an ambulance was called during the event. Hopefully, they administered oxygen and gave you decent meds. Yes, it can lead to unanticipated medical bills, the loss of a driver’s license (probably appropriate even if totally inconvenient), and all kinds of other daily life consequences, but know that the people around you were probably doing the very best they could to keep you safe. Thank them. (Thank them with pie!)

  To the wolf minder, it takes a while to process experiencing a seizure on all sides, which is why giving you and your wolf some room to roam and breathe is key—all the while remembering that you are pack animals together and having each other’s backs is key to improving quality of life and reducing fear around each event.

  12

  Everything in New York Is a Little Bit Broken (Part 2)

  LOOPING BACK TO “the big one” in 2015, Delia-the-neurologist—like my girlfriend Holly—was a feisty woman. I vaguely remember the argument between Walter (the head of the hospital’s maxillofacial surgery program) and Delia. She was so small next to him. Her head only came up to his chest, but she was fearless and fierce. She was wagging her finger in his face and they were going at it. I couldn’t make out exactly what they were saying as their voices had morphed back into Charlie Brown mwaw–mwaw, but it was something about seizing on the operating table, how I would die or be terribly maimed and/or probably scare the poor band of impressionable surgical residents out of medicine altogether. They reminded me of two parents arguing over what to do with a troubled child. I felt the heat of their tempers flare, and I thought I saw them both glow orange in the haze of my room. That’s when they took it outside and came to a compromise. I wasn’t frightened or sad at this point. I think I was more just relieved that they’d found me and that they were working things out. Meanwhile, I faded back to black.

  The surgery would go forward the next day at dawn. Making an incision up the right side of my face from the crown of my head down to my chin, they would peel my face off from my skull with the goal of rebuilding what was left of my lower jaw with pins and plates and then reattaching both sides to my upper jaw and head with rods, making any alignment adjustments arthroscopically, sewing up the fracture lacerations, and wiring me shut—all without severing my facial nerves—so that I might still be able to feel, taste, blink, and smile one day. My front teeth were gone, but my tongue was still in one piece. Teeth could come later. It’s so strange now to think of myself as having been in so many pieces, like shattered china, but there I was.

  AS I WAS BEING WHEELED into the operating room, Walter’s own jowly wizard face gave me confidence. I thought if anyone could put me back together, it would be this mad genius. With whatever drugs I was on, he looked just like the professor from Back to the Future. I fixed my thoughts on my daughters—just to hold them in my mind’s eye for a second longer. They still had no idea about the extent of my injuries. In my head, I thought I heard David Byrne singing, “This is not my beautiful life…” but I think now it was just Walter humming. He hums when he works, I would come to find out over the next eighteen months and three more surgeries.

  I thought back way to the last kiss I’d had with the man I’d been seeing, Pepé Le Pew. The person I didn’t want seeing me now, at least not until I had seen me first, but I was homesick for him. For that kiss, the scent and friction of his scruff. Did you know the second most-asked question on the Internet is how to kiss? Some writer somewhere must be quipping that the real question should be how to kiss like you mean it. I could feel that kiss, that future life receding from me now, folding in on itself like a dead star. You were too happy, said the cynic in me. That’s why this was happening. I don’t know how I got the words out before going under, but I asked Walter, “Do you think I’ll ever be able be to kiss again?”

  And he didn’t sugarcoat or make false promises. He simply said, “I don’t know, kid. Everything in there is a little bit broken.”

  I WASN’T GOING TO be able to Life Is Beautiful my way out of this one.

  As the blurry forms of Holly’s face resolved into focus, I could just make out her halo of strawberry-blonde hair. Her smile lines formed parentheses around her straight, white teeth. (Sigh…teeth!) Her little black glasses lay perched low on the bridge of her nose. I went to speak, just to ask how things went with the surgery, only to find myself seemingly sewn shut. Frantic, I searched the inside of my mouth with my tongue and felt the inner jagged remains of my front teeth, a crooked graveyard of tooth shards, but there was no opening for my tongue to slip through, no way to part my teeth or my lips, open my mouth, or make sound. I felt myself inhale sharply, loudly huffing through delicate nose hairs. There was no opening for words. I started to panic.

  Inside my face and head everything felt oddly splintered. Like tiny tent poles, a dozen or more pins held the skin of my cheeks and chin away from my skull and face bones. The sound of my breathing echoed inside against my inner cheeks. I was like a huffing rhinoceros or a jowly Richard Nixon—take your pick.

  Holly leaned forward, sensing my anxiety, and spoke in hushed tones: “You’re going to be okay. The surgery went well. You’re okay. Just breathe through your nose. They had to wire you shut. Your jaw was in a spasm and pulling hard to the left. That’s right. Breathe, chica.”

  I remembered, I remembered. I would need to be wired shut to heal, they’d told me. Everything was a little bit broken, so no talking. No solid food, only liquids. Good God, what was that smell? Everywhere around me now was the odor of briny, salty seawater, but with something extra. As a mother, I immediately recognized it. I’d inhaled the biting stench of a soaked dirty diaper. Holy crapdazzle, it was me! I had the worst morning breath in all the world. It smelled like I’d licked the subway and then let it fester in the New York City heat amid some raw sewage. These were not similes I could deal with at this ti
me. I gestured to Holly for my pen and paper and slowly wrote, “Got a mint?” out in big block letters. Even wired shut, I figured I could at least fit that in between my cheek and gum. She laughed, “Let’s see if we can get you some mouthwash, lovie” and went to track down the nurse.

  I ran my fingers lightly over the puffy planes and new angles of my face. I willed myself not to panic as I felt the metal staples just under what had been my hairline. What I’d seen with epilepsy thus far was that the body could shift and change very quickly, so no crying yet. The pins in my midface area just under the skin of my cheeks felt like tiny dollhouse doorknobs. I didn’t seem to have significant stitching on my face, which was a relief. I gazed around my room. There were paper signs stuck up on the wall above and beside my bed: FALL RISK, SEIZURE RISK, BROKEN JAW/FACE—all in urgent, black Sharpie. That must have been Ed’s doing. He loves signs. The nurses seemed a tad frightened of me, but having seen my mummified selfies, I would probably be frightened too at this point. Epilepsy now had me squarely by the lady balls.

  The nurse came in with mouthwash and to explain the glorious clicker of pain management. A morphine drip with a remote control. Anytime the pain started to flare up, I could hit the clicker to make it go away. I hit the clicker three times to try it out. As I felt the opioid goodness flooding my system all the way to my neon-yellow gripper socks, I thought, It takes a lot for me to blow out my hair, but I would so totally go out on a date with this robot-machine-thing. I could use one of these, but for my whole philosophical-emotional life, an existential pain-management clicker. I hit it again. No wonder people liked drugs so much. This was like chasing Xanax with really good weed, chased with…chloroform. It was fantastic, even if I was Tutankhamun. (Know that I’m not making light of America’s addiction to opioids, which is very serious; I’m just saying I relate.)