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 here?
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 an unacknowledged 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 another. 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 afterwards, 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 3 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 cared less about the safety of our clients’ personal information than the color of the ceiling.
“—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, 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 that 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.
And then I couldn’t breathe. I couldn’t find enough oxygen in the air I was sucking into my lungs. The walls began to rotate. I dropped the phone and tried to run for the bathroom but, like a chicken that is too stupid to know it’s dead, I fell. I vomited on the rug, so dizzy that I wasn’t even sure if my vomit was falling down, if I was lying down, which were the walls and which the ceiling.
Liang glanced at my chart, then checked the IV dripping prednisolone into my left arm. Even looking at it made me feel as though someone were dabbling their hand through my stomach.
My sister died from a heroin overdose. I watched her, many times, take the used needle from a friend, laugh, and squirt the bloody remnants at the wall. Watched, and reminded her to clean the works, wipe her skin with alcohol. Watched her tie off her arm, jack up the vein, dimple then puncture it with the needle. I had nightmares about steel sliding into blue veins, bloody heiroglyphs on the walls.
“Looks bruised,” Liang said.
She shone a light in my eyes, made me follow her fingers. “Your eyesight seems fine.” She scraped the bottom of my left foot: the toes curled and a visceral memory of my belly on Aiyana’s caught my breath. She scraped my right foot. The toes did not curl. “How does that leg feel?”
“Cold. Numb.” The words were still difficult, but at least I could now speak, and swallow, and breathe. I tried not to look at the respirator and oxygen tubes dangling like gutted snakes by the bed.
She banged on my knees and ankles and wrists, made a note on my chart. “At the doses of corticosteroid we’ve got you on, you may have some difficulty sleeping. I can give you something for that.”
“When do I get out?”
“You’re rehydrating nicely. Your vertigo has passed and your vital functions are more or less normal. But I’m concerned about the possibility of a recurrence of respiratory difficulties. You’ll need to be on the IV another two days—”
“I can have that done at home.” Even talking about it made me feel queasy.
“—but I would prefer to keep an eye on you for another day or two here. To make sure you rest.” Perhaps I imagined the emphasis. “And there are … arrangements you’ll have to make. A wheelchair. Someone to do the shopping and cleaning.”
Who? “For how long?”
“I don’t know.” She pushed her glasses up her nose. “You could be better in a week. You could get worse. Frankly, a setback of this severity is not typical with relapsing-remitting MS.” She looked at her watch. “The sooner you get started on drug therapies the better. Read that literature I gave you.”
I had already read it. Glossy sales brochures full of pictures of clean-cut, unstressed, middle-class people with white teeth posed with clean and shiny mobility aids, or standing on top of a mountain, or riding a bike. Scaremongering text that boiled down to, Take this or you’ll be a total cripple. The medical equivalent of Go to Mass or you’ll burn in Hell. Mostly injectable drugs—subQ, IM, IV—some oral. The published research looked suspiciously cherry-picked. Even so, there were lots of black-box warnings that said, essentially, This could ruin your immune system, destroy your liver, and might not work. But if you don’t take it, you will never climb a mountain again. They reminded me of old tampon adverts my mother used to sing a song about: buy this and magically be able to ride a white horse bareback through a field, dive from a high board, or play competitive tennis. And all insanely expensive, starting around $5,000 a month—which was the annual deductible on the healthcare plan I had chosen for GAP, when I was still invulnerable and immortal, without a pre-existing condition.
Another slick pamphlet was from the American Multiple Sclerosis Society; they used the same model as one of the drug adverts, this time on a bike on top of a mountain. I followed their URL and found that their website, like all selling sites, was designed to get your contact info. I wasn’t ready for that yet, wasn’t ready to belong to the society of victims and sufferers.
At the bottom of the pile were sign-up sheets for yoga, and support groups for depression and mindfulness—as though talking about it would help with holes in your brain. I tossed them all in the recycling bin, then frowned, and fished them out again. I went through them more carefully. All the groups were run by hospital counselors, not peers. Not a single one by people with MS for people with MS.
Rose put the bag on the floor and scooted the chair closer. “What did Aiyana say?”
I said nothing.
“You haven’t told her? But she’s your closest—” Her face seemed to thicken and swell, like a pan of milk coming to the boil. She sat back. “Well, that didn’t take long.” Her laugh was short and hard. “But who am I to judge? The pot calling the—” She closed her eyes briefly. “Sorry. Forget it. It’s—never mind.” She took a breath. “I’m glad for you. Really. But you should tell her.”
“I will.” When the time was right.
She pushed the oxygen paraphernalia away and lifted the bag from the floor. She pulled items from it, one by one, and set them on the side table.
“Salad. Because I know the pap they serve here might kill you, even if nothing else does. And some of that revolting vegetarian chili you like. Beer, because as your grandmother used to say, a bit of what you fancy does you good. Some books. Ah, these aren’t for you.”
Her tarot cards, wrapped in purple silk. When we first moved in together she used to read her cards every week. I would never let her read them for me. Pretty-colored cardboard, I’d said. I don’t believe in that shit. After a childhood of charismatic Catholicism, I was allergic to anything I could not touch or quantify.
“I picked them up from the house this morning.” The house. “I didn’t think you’d mind.” She stuffed them back in her bag. “You didn’t tell me Josh had planted more of those weird vine things. Ah, here we go. Decent tea bags. Clean pajamas. And three chocolate truffles.” It was an eight-mile drive to get those truffles, and the deli where she got the chili was four miles in the other direction. She even had my favorite dressing for the salad.
I blinked hard. I couldn’t reach the tissues with my arm skewered by the IV. I let the tears leak into my ears and the corners of my mouth.
My hand was fine, and my right leg, though noticeably weaker than my left, recovered enough so that I didn’t limp until I’d walked more than a hundred yards. But I was deathly tired, and the prednisolone made me restless. Overnight, temperatures fell and the air turned hard. Eventually I picked up the phone. My mother was easy: I called and left a message—she never picked up; sometimes she did not bother to check messages for days. And mothers were mothers; they had to love you. But every time I brought up Aiyana’s number I saw her stern-faced icon—When you fight to be taken seriously you don’t smile in photos—and could not make the call.
At Wynde House I reread the summary email from the Budget Committee. A muscle under my left eye tightened. I rubbed at it, then messaged Anton, the board chair.
<Available for a quick call?>
He was. “What’s up?”
“The response to the budget. Specifically line item 91, the ramp.”
“A new ramp is not a budget priority at this time.”
“It should be.”
“The Executive Committee feels that sidewalk remediation would cost too much.”
“I’ll find a way to raise the money.”
“We need our ED focused on strategic issues, not details.”
The muscle under my eye twitched. I flexed my face hideously to make it stop. “People with disabilities are not details.”
“The current ramp is ADA compliant.”
“It’s round the back. Like a service entrance. It sends the message that the disabled are second-class citizens.”
“That’s a little extreme.”
“Separate but equal is extreme? Perhaps you should talk to our disabled constituents.”
He sighed. “Do we have data, a survey?”
“We do.” I’d found the numbers two hours ago. “Seventeen point four percent of our users self-identify as disabled.” Less than the general population.
“I meant of our disabled customers’ satisfaction.”
“We have never thought to ask our disabled customers anything as a group.” That would have to change. “Meanwhile, we do have a satisfaction survey of one. Me.”
Silence. Densely populated. “Perhaps you’d better tell me.”
In the corner, where the walls met the ceiling, a fly walked in circles.
“I have MS.” Sufferer. Victim.
No, you prick, I’m the new owner of Microsoft. Another silence. He was probably mentally running through our conversation, checking he hadn’t said anything actionable.
“The doctors are. Lesions in my spine and brain.”
“Mara, I’m so sorry.” And I could hear it in his voice already: I was now on the other other side of the divide, no longer one of Us but one of Them. “Do you need time off? Anything we can do to help—”
“Anything except the ramp.”
As soon as the words were out of my mouth I wanted to beat them out of the air. The way to persuade Anton was to encourage him to feel wise and magnanimous, not slam him up against his own bias.
“Perhaps we should pick up this conversation when you’re feeling a little calmer.”
“I am perfectly fucking calm.”
“Yes, well. Tomorrow, Mara.”
I flicked the phone off viciously and wished it was his eye. Calmer my ass. Then he pinged me again.
<Again, so sorry to hear your health news.>
“Asshole,” I said to the screen.
A minute later, another message:
<ExCom meets tonight. Need revised budget by 6pm.>
Oh, he was not going to win that easily. “Christopher!” I needed a list of the Executive Committee’s personal numbers.
He stuck his head through the door.
“Get me … What?”
“Your face. It’s wet.”
A tear dripped on my desk. I stared at it.
“I’ll bring you tissues.”
I touched my face. Definitely wet. I never cried. Except for the two months after my little sister died, when I’d find myself huddled and weeping with no warning. But this time no one had died.
I had forgotten to ask him for those numbers. Fuck it, I’d just hide the ask in other budget items. I pulled up the spreadsheet all my direct reports had already argued over, corrected, and signed off on and began moving things around, recalculating, relabeling line items, faster and faster, lungs working, arteries wide. Budget martial arts.
Christopher brought tea with the tissues and set both down without comment. I did not look up as he closed the door quietly on the way out. I was too busy stabbing at the keys and cursing the screen. Fuck you. Sum. Fuck you. Average. And the horse you rode in on. Total. My heart throbbed like the engine of a freighter battling a storm.
When the numbers said what I wanted them to say, I imported the web sheet into Excel for the digitally illiterate on the Executive Committee, which was most of them, attached it as a PDF, which they could all read, and hit send. Eat that. Compliant my ass.
After two minutes of deep breathing my heart began to slow. I picked up my tea. Then, beyond the closed door, I heard “Shit.” Christopher never cursed. A moment later he knocked on the door—he never knocked, either—and came in. He looked uncertain.
I put the cup down. He shut the door behind him. “Are you quitting?”
“I just read what you said.”
“What I said?”
“Mara…” He came forward, gestured at my screen. “May I?”
I nodded. He turned it to face him, typed, brought up the spreadsheet I’d just sent, turned it back again. “It’s the budget,” I said. I had no idea what he was trying to get at.
He leaned over and highlighted two line items. Stood back.
Where it should have been labeled Maintenance/Improvements and Miscellaneous it read FUCK YOU and AND THE HORSE YOU RODE IN ON.