From the author of Hild, a fierce and urgent autobiographical novel about a woman facing down a formidable foe
So Lucky is the sharp, surprising new novel by Nicola Griffiththe profoundly personal and emphatically political story of a confident woman forced to confront an unnerving new reality when in the space of a single week her wife leaves her and she is diagnosed with multiple sclerosis.
Mara Tagarelli is, professionally, the head of a multimillion-dollar AIDS foundation; personally, she is a committed martial artist. But her life has turned inside out like a sock. She can’t rely on family, her body is letting her down, and friends and colleagues are turning awaythey treat her like a victim. She needs to break that narrative: build her own community, learn new strengths, and fight. But what do you do when you find out that the story you’ve been told, the story you’ve told yourself, is not true? How can you fight if you can’t trust your body? Who can you rely on if those around you don’t have your best interests at heart, and the systems designed to help do more harm than good? Mara makes a decision and acts, but her actions unleash monsters aimed squarely at the heart of her new community.
This is fiction from the front lines, incandescent and urgent, a narrative juggernaut that rips through sentiment to expose the savagery of America’s treatment of the disabled and chronically ill. But So Lucky also blazes with hope and a ferocious love of self, of the life that becomes possible when we stop believing lies.
|Publisher:||Farrar, Straus and Giroux|
|Product dimensions:||4.90(w) x 7.40(h) x 0.60(d)|
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It came for me in November, that loveliest of months in Atlanta: blue sky stinging with lemon sun, and squirrels screaming at each other over the pecans because they weren't fooled; they knew winter was coming. While Rose stood by her Subaru, irresolute, a large red-brown dogwood leaf — the same color as her hair — fell on its roof. She hated the mess of leaf fall, had threatened over the years to "cut that damned tree down." Too late now.
"Mara?" she said. "Are you sure it's all right?"
After fourteen years of course it wasn't all right, but, "Yes," I said, because she would leave anyway.
The shadows under her eyes, the tiny tight lines by her mouth, nearly broke my heart. I hoped the lover whose name I knew perfectly well but refused to use would know what to do when those lines crinkled down like concertinas, as they were doing now.
"You should get going," I said, before she could cry. "Traffic."
She shook her head, slow and baffled: How did we get to this?
I turned away. And tripped. A slippery leaf, I thought, if I thought anything at all. A twig. Or that uneven bit of concrete we really should fix. But it wasn't we anymore. It was just me.
* * *
AIYANA SAT, AS SHE ALWAYS DID, with her feet tucked under her and her close-cropped head dark against the far end of the sofa. I sat catty-corner in the armchair. The physical distance between us was a habit developed four years ago when, one summer evening in a bar after a softball game, sexual awareness unfurled between us. We never spoke of it but we knew that to come within the orbit of each other's skin-scent and cellular hum could end only one way: falling helplessly, spectacularly into the other's gravity well, momentarily brilliant like all falling stars, but doomed, because I loved Rose. And this friendship was too precious to burn.
The day had been warm enough for the end of summer, but the sun still set at November times. At twilight I opened the windows and cool air began to move through the house. The dark was not close and scented with humidity, not sappy with bright greens and hot pinks, but spare and smelling as brittle as the straw-colored winter lawn.
Aiyana turned her glass of Pinot, playing with the refraction of the floor lamp's low light. "So. She really left."
"She really did."
Her eyes were velvety but she said nothing because she was leaving, too. Two days before Rose asked for a divorce, Aiyana won funding for postdoc research at the University of Auckland's Douglas Human Brain Bank.
"You've booked your flight?"
She closed her eyes slowly, the way she said yes when not trusting herself to speak.
"When do you leave?"
"Two and a half weeks."
Two and a half weeks. No Rose, no Aiyana. "I need more wine."
In the kitchen I reached for the second bottle of Pinot already on the counter but then thought, Fuck it, and opened the wine fridge for the Barolo. My hand tingled and I shook it. Static maybe.
When I brought through the wine with fresh glasses she raised her eyebrows.
"If not now, then when?" I had been saving it for a fifteenth anniversary that would never come. I knelt by the coffee table. The cork made a satisfying thock, like the sound of summer tennis. I poured; it smelled of sun-baked dirt. I handed her a glass.
Perhaps because Rose was gone, or Aiyana was leaving, too, which made it safe, or maybe it was the smell of the wine or just that we wanted it that way, our fingertips touched and my belly dropped, and now the music seemed to deepen and the air thicken to cream. Her nostrils flared. We were caught.
Her feet were the color of polished maple, perfect, not like mine, not hard from years of karate. They needed to be touched. I needed to touch them. She sat still, wineglass in her hand, while I bent and brushed the side of one foot with one cheek, then the other. Under the soft, soft skin, tendon and bone flexed like steel hawsers as her toes curled and uncurled. I stroked the foot. I wanted to kiss it.
Her eyes were almost wholly black, fringed with dark-brown pleats. I kept stroking. She closed them slowly. I took the wineglass from her hand and put it on the table.
Our breath was fast, harsh, mutual. My cheek where it had touched her felt more alive than the rest of me and all I could think was how it would feel to lay my whole length against hers. So I did.
* * *
JOSH NEXT DOOR had forgotten to turn off his porch light again and through my bedroom window a slice of light curved over Aiyana's forehead, cheek, and chin. A face familiar from sweaty afternoons playing softball, drinking beer afterward, and sometimes coffee at the Flying Biscuit. But strange here. Nothing like the face I was used to seeing on that pillow.
She didn't smell like Rose, either. I slid an arm over her belly, breathed her in, then drew back and began to stroke in lazy circles. "Are you still going to Greensboro first?" Her grandmother lived there. Nana was old enough to be her great-grandmother, and to a woman of that generation, a granddaughter leaving for New Zealand was goodbye, a one-way trip.
"I can't think when you do that."
"In ten days."
I dipped my finger into her belly button, in and out. "Will you come back?"
"It's just Greensboro, babe."
I butted her arm. "From New Zealand." The fellowship was for one year, extensible to two on mutual approval.
She arched so that her belly pushed into my hand and her head moved deeper into the pillow, and shadow. "Give me some incentive."
* * *
ROSE AND I HAD FALLEN INTO BED, fallen in love, fallen into a life together with no pause for assessment, no hesitation. This was different. Aiyana and I already had a years-long friendship, an established relationship as separate individuals, not partners. The next week was full of missteps and surprises. We would stop, confused, in the middle of conversations, when I treated her as a partner of fourteen years or she treated me as a friend. I called her Rose, once, in bed; and on Saturday, when I suggested a special meal for two — one I'd already shopped for — it turned out she had plans for the afternoon and evening she hadn't thought to tell me about. Our schedules did not help: twelve-hour days for me at work — it was budget season — and Aiyana packing and wrapping up her life to move to the other side of the world. We talked briefly about trying to reschedule one or both of her flights so she had more than twenty-four hours in Atlanta when she got back from Greensboro, but her grandmother did not like her plans upset, and the Air New Zealand change fees were obscene.
Her flight to Greensboro was on a Monday, mid-morning, so I couldn't drive her to the airport. We said goodbye the night before; at work the next day two people remarked that I seemed to be in a good mood. Perhaps I was relieved to be on my own for a while; I wondered if she was, too, and immediately started missing her.
She had been in Greensboro two days when I got up from the too-big bed, sleepless, and went into the kitchen to make cocoa. I didn't turn on the lights. The white tile was shadowy under my bare feet, and hard against the calluses formed by kicking boards and punchbags. I opened the fridge, pulled out the milk, pushed the door closed, remembered I needed the cream too, and pivoted. A movement made a hundred times before, a thousand, ten thousand, except this time, instead of muscle and nerve performing their everyday miracle of coordination, I tilted to my right and started to fall. I tried to compensate, putting out my right leg, only it didn't move, and I kept going down, and now my temple was grazing the handle of the fridge, and the milk was flying out of my hand, and I was lying in the dark, half on my back, half on my side, naked and wet, and thinking, What? What?
* * *
THE NEUROLOGIST SAID: "IT'S MULTIPLE SCLEROSIS."
Multiple sclerosis. Crippler of young adults, the actor says, looking earnestly into the camera. Give generously. Help us fight this terrible disease. Multiple sclerosis.
"There's a lot we can do these —"
I shook my head. She stopped. I could imagine how I might look: the eyes-like-burnt-holes-in-a-paper-bag shock I had seen every day when I first became an HIV and AIDS counselor. From now on you are different. Diagnosis as death sentence. Doctor as priest. She stood next to me, holding out a paper cup of water. I sipped obediently, stared at the name embroidered in red on her white coat, Marie Liang, PhD, MD. I blinked, tried to make myself concentrate. "The tests are conclusive?"
She turned the screen so I could see the MRI images. Pointed to pictures of my spine. "Three lesions on the spine, here, here, and here. This one is very large." She clicked through to pictures of my brain. I could see my eyeballs, like boiled eggs. "A possible plaque on the left parietal lobe."
"Parietal lobe." I felt slow and stupid.
"The left parietal is responsible for speech, words. And your balance and coordination. Your optic nerve is fine. And your hearing." She sounded brisk, but very far away. "It is likely that you have relapsing-remitting MS. Exacerbated by stress."
She looked at me, waiting for questions, comments. Stress. My wife had left me. I had a hard job, always harder at this time of year, putting the budget together. "When will I get better? What about work?"
She glanced discreetly at my notes.
"I'm the executive director at Wynde House. GAP." I could not tell if she recognized the name or not. "The Georgia AIDS Partnership."
She kept looking at her notes, evidently found the relevant line, under Employment. Now that I had lesions on the brain, was I an unreliable source? "Fatigue may be a problem," she said. "Particularly during exacerbations. Do try to rest for the next few days."
We were at the height of our budget cycle. There was no rest. I hadn't even been to the dojo for three weeks. "What about exercise?" "Some people find yoga helpful. I believe the MS Society runs a class."
Yoga. Chanting and crystals and goodwill to all men. I'd rather hit things.
"Read the literature I gave you. Next week we'll talk about therapies."
* * *
THE SUN WAS BRIGHT, but glittery now rather than hot, and most of the riders on the MARTA train wore light sweaters. Two tourists were in T-shirts. I downloaded a cheap book on MS. Average lifespan following diagnosis of the disease is thirty years. But Average lifespan of sufferers can be up to 85 percent of normal. Weasel words. I knew mortality figures, could slice them a hundred ways from Sunday, and if normal for all women was 78.9 and, as I'd just read, average age at diagnosis was 34, the difference between 85 percent of normal and 34 plus 30 was more than three years. So which was it? I looked at the front matter; it was an old book. Percentage of victims still working two years after diagnosis: 80. But Percentage still working after five years: 45. I looked it up: that hadn't changed.
I should call Aiyana, she was the one who knew about brains. But Sufferer. Victim. That was not what I wanted her to see when she looked at me.
* * *
THE EIGHT STONE STEPS leading to the front door of Wynde House looked steeper than usual. We had talked, over the years, of bringing the ramp from the back to the front but it had always slipped on the budget priorities. I gritted my teeth and hauled myself up the steps.
Christopher was there to take my coat as soon as I got in. "The booking manager at the Piedmont called. Some problem about the gala reception. I said you would call him today. Number's on your desk. I've added a meeting for tomorrow. The third quote came in for a data security audit. You won't like the numbers any better than the first two —" Right now I seriously did not care about the safety of clients' personal information.
"— Max Washington, the mayor's new liaison, wants the afternoon meeting at one-thirty instead of two; and if you can manage the earlier time, I could squeeze in that Hate Crimes Task Force appointment with Captain Hernandez you had to cancel Tuesday, and still make the Primary Carers thing this afternoon ..."
The heating system had switched to its winter setting and it was too hot. Should the core temperature of the MS sufferer rise by more than one degree there will be danger of symptom exacerbation.
I headed for my office. Strange prickles and pins and needles fizzed down the nerves of both legs. The carpet felt like thick mud. Christopher followed me.
"So, how did it go?"
He knew I had a medical appointment, that's all. I sat down cautiously. Conflicting messages boiled up my spine. "Tell you later." I was shocked at how tired I sounded. "I'd like you to cancel the meeting with Max. Put Hernandez off. And shut the door on your way out. Please."
He opened his mouth then closed it again, shrugged, and went back to his desk. He'd worked with me a long time.
I'd first volunteered at AID Atlanta as a teenager, after my sister was diagnosed with HIV and hepatitis C, when my mother ran the place and it was one step up from a community organization. Now there were HIV hospices, seminars, research assistantships; counselors and halfway homes and medical assistance with in-home care; specialist partners like Project Open Hand to cook and bring meals to those living with AIDS, and PALS — Paws Are Loving Support — that rescued kittens and puppies from the pound, paid for their vaccinations and neutering, and took the pets to the homes of people who were sick. My office walls were dense with plaques and photos — teen-volunteer me, with Elton John at the end of the AIDS Walk; my mother with the then–Democratic presidential nominee, the governor, and André 3000 — certificates, letters from grateful PWAs and/or their surviving families: "Dear Ms. Tagarelli, We were so glad that you and your organization were there to help poor Jacob/Shanendra/Memo in their hour of need." The letters from surviving lovers were touching and brave; the ones from families, bewildered. This was the human face of what we did. Over the years, I had overseen the consolidation of local HIV organizations into the many-tentacled, professional nonprofit agency that had become GAP. The new budget I was about to send to the board was for $8.4 million. I had made that possible. Me.
I stared at the polished veneer of my desk. This job, those photos, were all I had right now. My wife had left me. My mother had moved back to London where I hadn't lived since I was a child. Aiyana was in North Carolina and would soon leave for the other side of the planet. Victim. Sufferer. Not incentives to come back. My job would not hold my hand or bring me tea on a bad day. Who would? What was this society for people with MS. People with MS, PWMS. Useless. You couldn't fund-raise without a catchy acronym.
The phone buzzed. "Yes?" "It's Max on line two," Christopher said. "In person. He's annoyed."
"You deal with it."
A beat of silence. "But you need his support on the hospice budget proposals —"
"Please, Christopher, just deal with it."
He sounded irritated. I couldn't blame him. Mood swings, particularly depression, are not uncommon in sufferers of MS. Victims — Sufferer. Victim. Was that who I was now?
The phone buzzed again. Eventually it stopped. The door opened. Christopher peered through. "Mara, are you all right?"
He waited a moment but I said nothing. He sighed. "It's Rose, on line two. She says your phone is off and she needs to talk to you about picking up some stuff she left at the house. Shall I tell her you're not here?"
"Yes." He sighed again, more theatrically this time, then turned to go. "Christopher." He turned back. "I'm sorry. It's just, I can't ... I think I will go home. I'm so tired."
* * *
IT WAS STRANGE TO BE AT HOME in the middle of a weekday. I wandered around, shaking my right hand as though I could fling off the tingle, looking at the place with new eyes: single story, open plan, no steps. Not many modifications to make if I ended up in a wheelchair. But all the light switches were at the wrong height, and I wouldn't be able to reach the faucets at the corner sink in the kitchen.
The landline rang. Rose was the only human being who used it. If I insisted on keeping the damn thing for emergencies then we should at least get some use out of it, she said. I reached for the phone with my left hand.
"What's going on?" she said. "I called Wynde House and they said you weren't at work today, and Louise says you were seen at the Shepard Building." Where every neurologist in town rents offices.
"It's nothing," I said. Like a child: afraid of the monster under the bed, more afraid to name it in case it came out. "How are you? How's ... Louise?" "We're fine." Had she always been so impatient? "It's you I'm worried about. You've had tests?"
The counters were too far off the ground for someone in a wheelchair. And the cabinets meant I wouldn't be able to get my legs under them.
Me. Smiling up from a wheelchair.(Continues…)
Excerpted from "So Lucky"
Copyright © 2018 Nicola Griffith.
Excerpted by permission of Farrar, Straus and Giroux.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Also by Nicola Griffith,
Praise for So Lucky,
A Note About the Author,