Multiple sclerosis and transitions in Nicola Griffith’s novel So Lucky

There is a terrifying scene in Nicola Griffith’s slim, flawless novel, So Lucky, when the no-bullshit narrator, Mara Tagarelli, finally confronts her monster:

“I opened my eyes and looked.
Hello, it said.
It was naked and lean and strong, and it was me. It smiled, wide, wider, like a pat of butter melting in a skillet, and it had too many teeth.
I ran. It ran, too, silently, smoothly; that was the worst part.”

Mara has spent much of the novel in the nightmarish yawning chasm between two identities—herself before disease, herself after. In a way, Mara is singularly primed to handle multiple sclerosis. She’s a martial arts expert and an executive director of a notable AIDS Foundation in Georgia—clearly both a fighter and a person familiar with the exhaustive impact of chronic illness.

Yet she’s also undergoing another intense change, the dissolution of her marriage with her wife, Rose (such a compassionately drawn character in the book), and an intense romantic fling with a close friend who is uncertain what to do with the news of Mara’s illness. This is such a powerful way to begin a novel, starting from a place of power but also extreme vulnerability. Griffith immediately ramps up the tension by revealing to us what’s at stake. And straight away we learn that MS doesn’t fuck around. It’s a cruel predator, one that sets its sights on Mara and threatens to strip her of all strength—financial, physical, and mental.

Fortunately for us, Mara proves herself a worthy opponent. She doesn’t fuck around, either.

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   My muscles felt like they were being pulled from the bone, and I was strained by even the shortest walk—say, from my bedroom to the bedroom of my children across the hall.  

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Like So Lucky’s narrator, and like Nicola Griffith, herself, I also have multiple sclerosis. The type I have is called “relapsing-remitting MS.” In RRMS, a haywire immune system attacks the protective insulation (myelin) surrounding nerve fibers in the central nervous system. The destruction of this myelin damages small, localized areas of the CNS and causes the variable symptoms of MS. Since the destruction occurs randomly throughout the nervous system, no two people with RRMS share the exact same symptoms. This damage can show up on MRIs as lesions—plaques or scarring—on the CNS. I have multiple lesions scattered throughout my brain, brainstem, and cervical spine. Some of the symptoms I’ve healed from; others have stayed with me, grinding up in intensity when I’m overly fatigued or ill. After time, RRMS progresses to SPMS (secondary-progressive), when disability steadily worsens without improvement.

I read So Lucky this summer while vacationing with my family at Washington State’s Cama Beach State Park on the Salish Sea; I was in the process of recovering from a relapse that had weakened my left leg. I hadn’t noticed anything wrong with my leg prior to visiting my neurologist, but I’d gone to see her because of excruciating pain in my body, pain that increased exponentially as the day wore on and I tired. My muscles felt like they were being pulled from the bone, and I was strained by even the shortest walk—say, from my bedroom to the bedroom of my children across the hall. I was angry at myself for my low energy, short temper, and lack of focus. I was beginning to wonder if I’d be able to stay at my job at the public library, where I could hardly hear people speaking to me through the pain and fatigue ringing in my ears. To everyone around me, I looked fine if weary. After a few weeks of this, I phoned my neurologist.

At one point during the neurological exam she put her hand down on my left knee and told me to lift my leg. Despite firing every ounce of brain power I could muster, the leg refused to lift. I looked up at her in surprise.

“Have you noticed anything with this leg?” she asked.

I stammered that my hip had been hurting, as if I’d strained a muscle near the joint. But I hadn’t thought much of it, assuming it wasn’t MS-related.

“Your gait is off,” she said. “That’s why the hip hurts. You’re dragging this leg, overcompensating.”

“My husband asked me if I was limping the other morning,” I remembered. “I told him I didn’t think so.”

This upset her. “Sharma, you need to pay attention.”

I’ve had MS for more than five years. When I was first diagnosed, all I did was pay attention. I emailed my first neurologist (I’ve had three now) almost daily, machine gunning him with questions about my symptoms. (Numbness and tingling in my legs and feet! Zapping sensations in my brain! Crawling sensations in my calf muscles! Lightning bolts of extreme pain in my face! Tremors and fatigue in my fingers!), I asked about the longevity of these symptoms, about terrible things I’d read in the MS book and pamphlets he’d sent home with me. The next time I visited him, I hung my head sheepishly while he explained to me that I needed to relax. Disease progression, he said, while steady, was usually slow. He prescribed citalopram to calm my nerves, because calmer nerves meant calmer symptoms.

I took my medicine dutifully. Every evening I gave myself a shot of an MS treatment called Copaxone. Baclofen relaxed the tension in my legs enough so I could sleep. I took my anti-depressant in the morning with a fruit smoothie. I stuck to the strict anti-inflammatory diet prescribed by my naturopath. I walked and did yoga, checked out a video from the library on Tai Chi, committed to all things recommended by my doctors. I was a good girl. I ticked off all of the boxes. I would be a dutiful patient, even with this disease. I was doing what I often did to protect myself in a world I find inherently dangerous: Be good, be perfect, and the bad things will leave you alone. Like Mara, I felt the shadowy, grinning presence of the monster all around me.

“I was so tired the words eeled out of my grasp,” Griffith writes.

As a writer, this is the most painful outcome to imagine.

There are layers upon layers in So Lucky. It’s a deftly-drawn story, bigger than just a woman fighting a monstrous disease.

It’s also a story about divorce, friendship, disability, community, love.

It’s a story about change and survival, from disease, yes, but also from assault.

It’s a novel that deftly penetrates society’s ableism, the tacit, constant ways we communicate to those with disabilities: “You are not whole. You are less.”

It’s even a suspenseful detective story. A chain of dead bodies leads directly to Mara, and we waffle between accusing her of paranoia and applauding her astuteness. This subplot doubles as a stunning metaphor for the difficult process of securing a diagnosis: Are you sure what you’re feeling is real? Maybe this is all in your head…

Even more impressive is the way in which Griffith asks us to suspend our disbelief in the midst of a tale of brutal, physical reality. She gives us straightforward, almost laugh-out-loud monikers for multiple sclerosis’s ugliest details: sufferers are called “Doily Brains” and “Crips” (short for “cripples”). Immunomodulation—the accepted form of treatment for MS—is rightly called “Fear Therapy,” ridiculously expensive and as promising as it is poisonous. There’s a frank discussion about Tecfidera, a medicine I recently tried and failed to tolerate, and Mara, too, realizes the drug is wrong for her. “It was a repurposed German psoriasis drug, which itself was a repurposed furniture fumigant. More than $5,000 a month for a drug that killed pests in furniture,” she muses. But Mara takes it anyway only to have it to launch her into incredible pain.

Rammed up against these harsh realities is a surprising and welcome fabulism, a fairytale-esque departure that ripples with emotional sensibility. At an MS support group in DeKalb, we meet a mythical, witchlike woman, Junie, who declares, “I’m the oldest person in the world with MS.” When Mara notes and feels irritated by Junie’s small, cantankerous black dog, Junie leans forward and says, “So you see him, too?” No one else in their group does.

As readers we realize we’re in a shifting landscape now, a world that crosses easily from realism to the fantastic, yet another transition in a novel full of transitions.

The dog is Junie’s incarnation of her illness, and Mara is one of the rare individuals who can see these incarnations in the flesh.

“’Me, I’m just saddled with this damn dog. Ugly son of a bitch,’” Junie says. She also points out a fire on top of another MSer’s head, and Mara sees it, too: “orange flame coiling over his hair like a nest of snakes.”

“”Yours, now,” Junie says, “Yours ain’t a small dog. Not flame, neither. Never seen anything like your great grinning thing.”” When Mara tries to ignore her, uncomfortable with the hot room and the senselessness of Junie’s words, the older woman presses, “’You scared? You should be. It’s aiming to kill you.’”

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  I bent over to palm my shins, and beneath my hands the flesh bulged. The eels hatched as if born from my own bones, the gaping flesh bloodless even as my muscles ripped and tore. The eels jerked from side to side, black and oily and hungry.  

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It’s aiming to kill you. Your great grinning thing. Only a writer intimately acquainted with the mind-fuckery of a major illness could manifest it in such a fantastical, metaphorical, and believable body. I thought of Susan Sontag’s profound Illness as Metaphor as I read this; I thought of the minute wonderment in the poems of the late, great writer Lucia Perillo, who also had MS. So Lucky is a boundless, fearless animal of a novel, made more boundless and fearless by talking so frankly about the ways illness limits us and terrifies us. It’s structurally ingenious and beautifully written, thrumming with breathtaking sentences that evoke in us a sense of deep empathy: “Her eyes glimmered in the gray uplight like jewels in the face of an ancient god.” When we meet Mara’s monster headlong, we stand shoulder to shoulder with her. We hold our breath and hope like hell that Mara will fight.

When I read this book at Cama Beach, recovering from my biggest relapse in four years, I was very afraid, more afraid of MS than I’d been since my diagnosis. I wondered about my own incarnation of the disease: Not a dog or a monster, but maybe the black eels that sprouted from my legs in a dream I’d had right before I was diagnosed. In this dream I’d stood on dock on Lake Pend Oreille, a thick gray mist spreading all around me. All of my friends and loved ones slipped into the water and began swimming away from me, ghostlike. I called out to them but their voices faded; they forgot me. I meant to follow them. I was in a bathing suit, after all, and this was the lake I’d grown up swimming in, a place I knew intimately and loved deeply. But my legs wouldn’t move. I bent over to palm my shins, and beneath my hands the flesh bulged. The eels hatched as if born from my own bones, the gaping flesh bloodless even as my muscles ripped and tore. The eels jerked from side to side, black and oily and hungry. I understood I’d never be free of them, that as hideous as these creatures were, they were my own. I awoke frozen with dread and certainty and a strange calm. It was a nightmare of acceptance.

At Cama Beach, mid-way through So Lucky, I set the novel down to take a walk in the woods with my children and husband. They galloped ahead of me, shouting. I cherished an intense gratitude about their wellness and my own. A sadness bobbed like a small lantern behind it, casting every small, simple emotion in a poignant glow. I wanted to laugh and sob with the beauty and difficulty of living. I limped along in the woods with the Salish Sea visible through the slashes of trees. My left leg, quieted by prednisone and time, was improving. The children loped to and fro, checking on me and then forgetting about me, and then checking on me again. I told them I was okay, and I really was. They ran off, shrieking, overjoyed with the forest and the pathway. My husband and I held hands. I knew my window for the day was closing: I had to finish our small walk before the exhaustion and pain struck, an event I plan for every day, a block of rest I need if I’m to function in any respectable way in the evening. As my first neurologist said, “The quantity of your life won’t really be affected, just the quality,” a statement that has always struck me as absurd, as if anyone would prefer quantity over quality.

When I returned to our little cabin on the sea, I rested. I finished So Lucky. In its ending—without my giving too much away—Mara confronts her monster, her “great grinning thing.” In the afterlife of my own diagnosis, so will I, again and again and again. “I am not invincible,” Mara says, “But I am not Less.”

Damn straight, Mara. And so we fight.

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Photo credits: Image from Joseph Babinski’s “Etude anatomique et clinique de la sclérose en plaques” via Wikimedia Commons (public domain), cover of So Lucky courtesy of MCD/FSG Originals, Sharma Shields by Rajah Bose, courtesy of Henry Holt.

Sharma Shields holds an MFA from the University of Montana. She is the author of the short story collection Favorite Monster, winner of the 2011 Autumn House Fiction Prize, and the novel The Sasquatch Hunters’ Almanac, winner of the Washington State Book Award. Henry Holt will publish her next novel, The Cassandra, in February 2019. Her work has appeared in The Kenyon Review, The Iowa Review, Electric Literature, and more. Shields has worked in independent bookstores and public libraries throughout Washington State. She lives in Spokane with her husband and children. Follow her on Twitter at @SharmaShields.