Gotham Girl Interrupted

by Alisa Kennedy Jones

  EPILOGUE

  On Being a Narwhal

  HOW DOES IT ALWAYS come down to unicorns? I don’t know why, but it does. And I don’t know why I picked the narwhal—otherwise known as the “unicorn of the sea”—as my spirit animal slash metaphor. It was purely accidental. The beast-word fell out of my mouth during a conversation I had many, many seizures ago, with my younger daughter.

  We were talking about surgery as a solution for my seizures. Sophie came with ready opinions. My careless comment was something like, “Yeah, but I’m just not sure I want to be a narwhal. I’m not ready, yet.” I’d said in jest. I was not into the idea of lobotomy scars at the age of forty-two, but right then I could see my daughter was absolutely serious about my life and death. A child should never have to worry about her mother is the constant refrain I hear in my head. I realize now that it was a very vain and selfish retort and probably made me a jerk. Because, of course, you would do anything to assure your child that they will never be left on their own. Never be abandoned. But well, I never claimed I wasn’t a jerk, so if you assumed I wasn’t, that’s a tiny bit on you, my lovelies.

  In narwhal lore, its name is derived from the Old Norse word nár, meaning “corpse,” in reference to the animal’s greyish, mottled pigmentation, created by the creature’s summertime habit of lying still at or near the surface of the sea.

  The Inuit oral tradition is rich in legends about transformation. One such legend holds that there once was a woman with beautiful, long hair who was married to a cruel and abusive husband. One day, she was standing beside a river with her hair down when her husband came after her with great violence. Just as he was about to reach her, she fell backward into the water below and sank out of sight. When she emerged at the mouth of the river, she had transformed into a narwhal with a long tusk. Rapids were forming in the river and, because her hair was spread out in all its length, it began to twist around and around in corkscrew fashion—forever safe now from her abusive husband. This was the mythological reason why narwhal tusks are formed with a corkscrew twist. The spiral horn is actually a long tooth and was believed to possess magical curative properties.

  The writer Jules Verne suggested the creature sought to run ships through with its tusk. That seems unlikely in that nerves tunneling through the narwhal’s tusk, an upper canine tooth that runs seven to ten feet long, suggest that it is actually a sensory organ. It’s believed that the animals use it to collect information about their environment and about one another. Male narwhals, for example, may tap or scrape their tusks together as a means of communication. The tusk might also be sensitive to environmental factors, such as water and air pressure, temperature, and chemical cues, thereby facilitating communication and prey detection.

  The narwhal lives year round in the Arctic waters around Greenland, Canada, and Russia and can live up to the age of a menopausal lady. They are often killed by suffocation when the sea ice freezes over. Another cause of fatality, specifically among young creatures, is starvation. The current population of the narwhal is about seventy-five thousand, so narwhals, though not technically endangered, are considered a fairly rare species.

  Some medieval Europeans believed narwhal tusks to be the horns from the legendary unicorn. As these horns were considered to have magic powers, such as neutralizing poison and curing melancholia, Vikings and other Norse traders were able to sell them for many times their weight in gold. Used for foraging and mating rituals, the tusks were sometimes also crafted into cups that were thought to negate any poison. During the sixteenth century, Queen Elizabeth received a bejeweled narwhal tusk worth more than ten thousand dollars from the renowned adventurer and explorer Sir Humphrey Gilbert, who claimed the tusk was from a sea unicorn. The tusks were considered a staple of various aristocratic cabinets of curiosities at the time, much the same as epileptics.

  I’d always held an outlandish view of epilepsy surgery. I pictured a horrifically grotesque procedure with my brain split in half and horn growing out of my forehead. It may have been a lack of vision on my part. Most likely it was that my parents just didn’t explain things adequately. Back in the 1970s, it was still common for kids to have their tonsils taken out. If you had repeat cases of tonsillitis or strep throat, pediatricians routinely took them out.

  I was a total tonsillitis kid. Until age seven, I practically lived on that horrid Pepto-Bismol-colored amoxicillin liquid that grown-ups always tried to convince you tasted like strawberry Nestle Quik (such blasphemy). It’s a wonder I have any intestinal flora left. My parents dreamt up every possible bribe to persuade me to have my tonsils out. They dangled ice cream, Jell-O, and popsicles—all the things hippie kids never got, but I was adamant about keeping my tonsils.

  Plus, and I genuinely don’t know how I got this idea into my head, but somehow in my little kid logic I truly believed that in order for the doctor to take out your tonsils, they had to saw off your head. Indeed, in my version of the presumed events, the doctors and nurses gave you loads of shots (which I was not keen on) to make you fall asleep, during which they cut off your head, removed your tonsils with pliers, and then sewed your head back on like Frankenstein. That was a tonsillectomy in my dark imaginings, and no one could convince me it was worth having my head sawed off.

  It didn’t even occur to me that all doctors really did was just put some long skinny tongs in your mouth, snip-snipped, and then you woke up for ice cream. Why my parents never explained this to me or probed any deeper into my trepidation remains a mystery.

  But this gets me back to the epilepsy surgery, and the other question Sophie put to me when I was in my cyborg headgear, about whether there was an operation that would make my seizures go away forever? I pretty much did the same thing all over again. When it came to a discussion of surgery for my epilepsy, my imagination went straight back into overdrive like it did with my tonsils.

  The most common type of epilepsy surgery is called a temporal lobectomy. In this procedure, a very specific, overly electrical, hyperactive part of the brain is removed. The second, less common type of epilepsy surgery interrupts nerve pathways that allow electrical impulses to spread across both the right and left hemispheres of the brain. The term “disconnection” is sometimes used to describe it. This is the kind of surgery I imagined would have me looking like a narwhal with a big horn scar between my eyes, separating my lobes. And I didn’t want disconnection inside my brain. If anything, I wanted more understanding outside of it—in the world.

  The actual conversation I had with my neurologist about why I wasn’t a candidate to have the surgery had to do with the location of my seizures. This was the real issue. There was too great a risk to my language, memory, and my ability to walk. I might be too impaired afterward, and even though my seizures were fierce, they weren’t intractable and frequent enough to warrant brain surgery. I didn’t know how to explain this to Sophie at the time. I also didn’t know how to explain the other risks.

  Most neurologists don’t like to talk about Sudden Unexpected Death in Epilepsy (SUDEP). It’s so important that they do because many people with epilepsy are unaware that there’s a possibility of unexpectedly dying from the disorder. While it is an uncommon but fatal complication of epilepsy, it affects one in a thousand adult patients and one in 4,500 children with uncontrolled seizures every year. Many physicians are hesitant to discuss this rare risk of death because they don’t want to frighten their patients. Of the participants who completed a 2017 Epilepsy Foundation survey, 100 percent felt that adult patients with epilepsy had a right to be informed about SUDEP, and 92 percent agreed that doctors should be required to disclose that information to them. Additionally, the limited survey showed that 81 percent of patients felt that simply knowing about the rare risk of death motivated them to consistently take their medication, and 85 percent said it encouraged them to better manage their seizure triggers—such as sleep, alcohol, and stress. That said, it’s also important that we, as
people with chronic conditions and disorders like epilepsy, don’t get locked into certitudes about it. There is no one narrative for epilepsy or for neurodiversity. Drop the guilt and the shame however you can. Write it off, ride it out, walk it off, and shout it out.

  Imagine any number of narrative futures because this is what our brains were designed to do. According to some of the most recent research on how the human brain works, we call our species Homo sapien or “wise man,” but this is most likely a very poor moniker. We would be more aptly called Homo prospectus or Homo possibilitās in that our brains are wired to use very different parts of themselves in highly integrated ways to formulate multiple narrative futures for ourselves—collectively and individually. Through the mathematics of space and time, our brains are able to imagine and (sometimes) execute on a wide variety of outcomes and possibilities more so than we are wired to be able to solve or learn from the past. We are, in short, wired for the future, and there is an endless gorgeousness to this idea. A beautiful possible.

  But now that I sat there with Sophie all these years later, regarding her worried little face, she said very plainly in response to my careless comment, “But I would be a narwhal for you.” And inside, my heart just broke, or maybe it grew like the Grinch because I would always be a narwhal for her, for both girls. A big, burly narwhal with an unwieldy tusk, swimming in ever-warming waters, I would always be a narwhal no matter how many surgeries and drug trials I had to go through.

  I know she still felt betrayed by me, by epilepsy, but to generalize with wild abandon, we all feel betrayed or wronged by our parents at one point or another in life. I felt wronged by mine primarily because no one had ever mentioned epilepsy as part of our family history. It turns out my grandmother may have dealt with seizures as she aged, but no one ever thought to talk about it. We’re still not sure, but what I want, what I hope for, is a more open conversation with my daughters (and theirs one day) about neurodiversity, genetics, new treatments, and what it means to live an “electric” life—to touch the fence, so to speak.

  There’s something awkwardly outmoded about watching a white, privileged, straight-ish woman flail—even absurdly and unabashedly—through personal, social-practical, and professional foibles and expecting a wholesale transformation at the end. My epiphany is, I suppose, that maybe there are no epiphanies. What is the dark alchemy that can turn your vulnerability, contradiction, abjection, and loneliness into light? Maybe it’s that you can’t just follow the forensic threads of your emotional, neurological, and genetic life back to their different triggers, sources, and origins; maybe it’s that you follow them forward and away from comfortable certainties toward different, uncertain, beautiful outcomes.

  I’m still revising this idea, but I believe that certitudes keep our own worlds small, confined, and weighted. Possibility, along with hope, is the invisible currency that enlarges and lightens us. Like gravity, you don’t always see possibility or hope, but you know its effects: a book falling, our bodies drooping, even straining against it to stay upright. Possibility and hope won’t speak to you in your own simple language, because it isn’t something that exists outside of humanity. Possibility and hope are only present because we are. It is wired and evolved into us, the same way the electric, epilepsy, and any number of chronic conditions are wired into us. The beautiful possible lives within us, and it’s up to us to nurture it and bring it out into the light. Possibility is only as consistent and constant as we are. I grasped at certitudes and it made life lesser and smaller. It’s during those times when the beautiful possible seems the least practical thing that perhaps we need it the most.

  I know I apologized to the girls in advance over both of their goopy little heads, right when they were born. I regret the parent I was not able to be. Sometimes I tried too hard to be their pal. If I had known to take greater care to protect them from the drama of this world and my epilepsy, I would go back and be better for them, for they have been all the joy that I ever need. Their soft, sour-milky breaths, nestled to me, to my chest. If I could protect them from the past, present, and all the different futures, I would have. I will—and will still—try always.

  At the same time, I want to tell them wise words from an old friend that “caution is a thief” and not to let it or unwarranted fear take away their eccentricity, their electricity, their neurodiversity, their innate juiciness, and their spaz sense of adventure, empathy, and compassion. I don’t think it ever will. They are bright, fierce girls who know that in dark times, we all have a responsibility not just to our own single light but to all the neurodiverse lights twinned in a fugitive mind.

  Acknowledgments

  Eric Myers, my friend, agent, and invaluable guide;

  Don Weise, for working wonders;

  Joy Kimple, who told me I could;

  Jacqueline Saint Anne, Holly, and Mac McKeown—tireless cheerleaders and actual lifesavers;

  Ned Rust and Jim Patterson, big-hearted, clear-eyed champions;

  The Marina Bykova Literary Institute and the ever-patient Vilma, Carlos, and Angel;

  dear ones: Alisa and Chris Shadix, Mo Malone, Charles Albert, Camille Semeniuk, Serena Fritz-Cope, Zach Nadler, Marc Blucas, Debbi and Jay Baum—so much gratitude;

  Dr. Ira Sturman and his entire surgical team;

  the teams at Imagine, Charlesbridge, and Penguin Random House;

  Elaine and Edwin A. Wiggers, Jr. for their deep generosity;

  Eric Guichard, for riling me to action after that one summer in France;

  my family and friends, who said I should.