“Six.”
We settled on a year.
* * *
CHRISTOPHER WENT VERY STILL. “From when?”
“Immediately.” I looked around the outer office. It already felt alien. “I spoke to Anton this morning.”
“You should have told me. I could have helped.”
I nodded. I should have. But Christopher had seen enough reactions to diagnoses that he knew there was sometimes no logic to our responses.
“Will you have input on the post?”
I thought about it. “Probably.” Who knew the job better?
He tilted his head speculatively. “Who do you fancy?”
Good old Christopher. He had seen enough people down and dying to know that the best medicine sometimes was to ignore the details and get straight to what matters: influence.
* * *
I UNPACKED THE LAST FEW THINGS from the box and hung the pictures of still-dewy me, and Mum, and Elton John on the kitchen wall. I checked the time—1:40 p.m.—and texted Aiyana.
There were eighteen hours and half a world between us. In her peach-painted kitchen it was almost eight on a summer morning, and seventy degrees: perfect weather for someone with MS. Sunshine lit the wall beside her, and behind her a window looked out, a long way down, over blue-green sea. She was wearing the ring.
Her flight was fine. Bumpy. She was in a university condo near the bay for two weeks until she found her own place. She had eaten “something called Weet-Bix” for breakfast. It all felt … strange.
Her words barely made sense. I knew I should respond in some way but all I wanted was to be wrapped inside her breath, her warmth, to feel her heart beat close to mine.
“So, how are you?”
“You were right. They fired me.”
“Fuck.” Her image froze momentarily, then jerked back to life. “When?”
“Yesterday.”
Her face was still so long I thought her image had frozen again, but then she said, “Do you—?”
“I have—”
“—need me—”
Skype hated it when we both tried to speak at once. She gestured for me to go first.
“I have insurance for one year.” Insurance until she got back. If she got back. “I don’t need you to do anything. It’s not an emergency.” It was my life. Unemployed. Sufferer. Victim. “I’ll be fine.”
“You’re sure?”
Maybe it was the bandwidth but her voice seemed half a tone higher than usual. She was relieved. Of course she was relieved. If I was fine she would not have to even think about offering to come back. And while we chatted—the strange smells, New Zealand TV—a little voice in my head whispered: She won’t come back. Who would want to come back to a sad cripple? And eventually the poor connection made the conversation too disjointed to continue.
* * *
I PHONED CARPENTERS and decorators and electricians and set about installing grab bars in the bathroom and moving the light switches lower down the walls. I hadn’t had to use a wheelchair this time, but I might next. And there would be a next.
Rose did not approve, of course. It was a cold afternoon but we took our cocoa out onto the porch to get away from the noise and mess of the alterations. “You’re supposed to be resting.” Her breath steamed in the glittery sunshine.
I stared at the froth coating the sides of my mug. “Doing nothing makes me tense.”
“Resting isn’t doing nothing. Try reading. Think about the things you want to do with your life now you’re not tied to that punishing work schedule.”
Everything I ever wanted to do with my life involved using my body. Not just martial arts. I wanted to kayak the Intracoastal Waterway for days. I wanted to fall out of a plane with a parachute on my back, feel the snap of it breaking open, the rush of air, the tumble and roll as I hit the ground. I wanted to run a marathon. My MS running behind me, grinning.
“Mara?”
I just shook my head. “So, are you and Louise packed?”
Rose shifted in her chair. “I’ve been meaning to talk to you about that. I thought maybe I should postpone.”
“You’ve been looking forward to it.”
“Then why don’t you come with us? No, really. Think about it. Caribbean sunshine, fresh air, good food. You won’t be in the way, if that’s what you’re—”
In the way. “No, I’ll be tucked up neatly in my wheelchair with a blanket over my knees, smiling nicely at the passersby because that’s what cripples are supposed to do: smile and be nice because we’re so dependent on the kindness of strangers. Fuck you.”
She blinked. “You should be so lucky.”
It was one of those automatic call-and-responses from our marriage. But we had never used it on each other.
“I’m sorry,” I said shortly.
“No, you’re not, but I forgive you anyway.” She drained her cup. “I’ll call tomorrow before we go to the airport. And, Mara, if you need anything, just call. I’ll come.”
She slid into her Subaru in a way I might not be able to ever again, and I waved her goodbye, glad to see her go, wishing she would come back. She had known me since I was eighteen: Mara Tagarelli, third-dan Shuto Kai black belt, director of Wynde House, wizard with numbers, smart and sexy and witty. She knew I wasn’t the thin, unsteady, and quick-to-tears woman who was afraid she would end up in a wheelchair and whose health insurance would run out in eleven months. A broken thing left behind.
Josh next door was digging in the disorderly organic plot that used to be his front lawn. Higgledy-piggledy jungle of crap, Rose had called his efforts. And that was when it was green. Now it was all dead-looking gray sticks and straw over red dirt. But I knew nothing about yardwork. The closest I ever came was sitting on the back deck with a beer after a workout at the dojo. Gardening was Rose’s thing.
“Hey,” I called.
“How’s it going?” His eyes wandered over a tangle of cane frames that as far as I could see served no purpose, spade dangling from his hand as though he had forgotten it existed. He was probably stoned again. Once or twice a year he had people over and they banged drums and sang under the moon, but apart from his garden he kept his house in good shape. I’ve had worse neighbors.
I researched MS deep into the night. Behind the tidy paths of medical wisdom lurked a swamp of alternative treatments and belief systems ready to suck in the unwary. Bee-sting therapy, based on some sketchy and desperate theory about histamines, in which you let yourself be stung over and over, and sometimes died. Liberation therapy, in which your jugular vein was scraped out and stented, and sometimes you died. Bone marrow stem cell transplant, in which your whole immune system was destroyed and regrown, ended up growing back crooked anyway, and sometimes you died. The most recent fad seemed to be some kind of starvation diet.
I stared at the brochures Liang had given me. Those drugs were all based on the same theory: that MS was a disease of the immune system. I’d listened to Aiyana rant enough about methodology to see that their arguments were as full of holes as an MSer’s brain. All the study discussions were larded with words like “most probably” and “likely” and “seems to.” The official drug information sheets on so-called disease-modifying drugs said, “Method of action: unknown” or “not entirely understood.” Guesses. Just another belief system. Fear therapy, all of it. But Go to Mass or go to Hell. Immunomodulation was Pascal’s Wager, only with something to lose.
* * *
REBIF CAME IN PREFILLED SYRINGES which slotted into an automatic injector. The exact process by which Rebif works to reduce exacerbation is unknown. I began with what was called a titration pack, which ramped the dose up slowly, three times a week over four weeks.
A nurse came to the house for injection training. We sat across the kitchen table from each other while she ran through basic hygiene and methodically laid out her tools on a laminated mat helpfully illustrated with a syringe, an alcohol wipe, a cotton swab. She flipped a spira
l-bound notebook to a page showing the outline of a human body, back and front. After a moment I realized I was not looking at a diagram of the brachial artery, vulnerable to a slash, but at the layer of fat at the back of the arm; not at the femoral artery, but the padding over the quadriceps; not the renal artery, ripe for a deadly thrust, but the belly fat below and to either side of the navel: all sites for subcutaneous injection, marked in tasteful green rectangles. The belly and thighs were the easiest, she said. The buttocks and arms sometimes required help.
I should wash my hands now, she said. Where would I like the first injection to go?
To go. Always passive or middle voice when pain is involved.
I dried my hands, sat down again. Belly, I said. I had read it was the easiest.
She nodded. This first one would be saline, so I only had to worry about the feel of the injection itself. Once I knew how that was supposed to go, I would inject myself with a very low dose of Rebif, just 8.8 mg, unlikely to cause any difficulty. Perhaps I had a friend who would sit with me for that?
“Of course,” I said. Something I learned early at self-defense: never let them see your weakness. Be part of the herd, just like the rest, because if you have a limp, or white spots, or are facing in the wrong direction, you stand out, you’re visible, and the predators zero in. There were only three people in the world I would let see me so vulnerable: one in New Zealand, one in England, and one on a Caribbean cruise. I stared at the syringe as she talked, trying not to see my sister laughing, puncturing her vein. I had never understood her willingness to breach bodily integrity, the layer between us and the world that keeps us safe. I remembered a poem I had heard long ago, Where would we be without skin? / All over the bloody place …
I lifted my T-shirt, then realized I’d need both hands for the injection, and took it off. My skin pebbled until it looked like coarse concrete; I should have turned the heat up. When I tore open the alcohol wipe my stomach squeezed, but I wiped deliberately, thoroughly at the round of my belly, two inches below and to the right of the navel. My hand was steady as I pulled off the needle cap. The needle was short and very fine. I wasn’t cold anymore and my skin looked smooth and soft and vulnerable.
“Don’t forget, if you can’t pinch two inches, use a forty-five-degree angle,” she said.
I was braced. I had read the horror stories online about the pain, the injection site reactions. I took a long, slow breath, and as I breathed out I slid the needle in. There was no resistance; I could have been made of air. It did not hurt. I wiped at the injection site with a dry cotton ball.
There might be blood when I did it for real, she said. And some people found it helpful to use a cold compress afterward. I should always dispose of the sharps properly, in the container provided. Remember to get the Rebif out of the fridge an hour before the injection.
She turned the spiral-bound notebook, with its drug company logo, Serono, a subsidiary of Merck, on the top right of every page. This was for me to keep, she said. I should record the sites in this section, here, and any reactions in this one, here.
And be reminded that Daddy Serono was looking after me; and the pain was for my own good.
* * *
I DID IT FOR REAL THAT EVENING. It stung going into my thigh, and blood beaded at the tiny puncture. I wiped it away. It beaded again. I wiped it away firmly, and waited. Nothing. I wanted to share my triumph. Mid-afternoon in Auckland. I tried Aiyana on Skype but she did not pick up. Maybe I should go out, get a drink with the loud, dog-loving women I played softball with in summer. But all the received wisdom about Rebif was that it was best to wait and see how you reacted.
Two hours later, watching Netflix, I ached as though I’d had a hard karate class, and the injection site itched. I pulled down my pants. There was a small red welt on my quad, like a fleabite.
It wasn’t so bad.
* * *
THREE DAYS LATER, after two injections, the fatigue seemed to melt away. I went back to the dojo for the first time since the budget crunch. Bonnie was there. Her beginners’ class was running a little late. She rolled her eyes at me—she hated teaching those classes, but it paid the rent—nodded as I came onto the practice mat, and pointed at the wall clock, mouthing Five. I stretched, carefully at first, then with growing confidence. Maybe I was one of the subset of people for whom those drugs actually worked. Maybe I would beat this thing.
Five minutes later she dismissed the class and came over. I was doing leg extensions. She put one of her big hands on my left knee, took the foot with her other, and started pushing. “It’s been a while.”
“Budget season.” Maybe Rebif would mean I’d get to say that again one day. Fuck Anton.
She nodded. And for twenty minutes we said nothing more except move this, give me that, too much, go a bit harder.
“Second form?”
I nodded and stood, balanced and sharp as a jewel, ready to dance the karate kata while Bonnie acted as my opponent. I took the open-ready pose, breathed out, and began the slow-motion sink to a squat that would turn into the explosive first move. Make it feel like butter sliding down the hot steel of a coiled spring, Bonnie had said when she first taught me. Down I went, and down, oiled and smooth, feeling the muscles in my calves and thighs, in my ankles and at the base of my toes, gathering. I started the inhalation. And when your lungs are full it’s like that spring covered in butter just slips loose and you FLY up and out with the ki-ai, the karate shout. I leapt with forearms crossed to block Bonnie’s downward blow, and it was as though my smooth buttered spring had rusted—it gave under the strain, just broke—and I faltered and jerked, and half blocked Bonnie’s fist with my fingers.
My hands dropped to my sides and swung there. We looked at each other.
She walked around me twice, and stopped. “What’s going on?”
And I didn’t know how to tell her, how to open my mouth and say: I am sick and possessed by disease and this thief is stealing my life.
“It isn’t me,” I said. “It’s multiple sclerosis.”
Her body didn’t move, but her face changed, I saw it, a shuttering and turning away, just before she laid a hand on my arm and said, “I’m sorry.”
“It’s just that one move,” I said. “I can do the rest.”
“Sure,” she said, but her smile was mechanical, the kind she gave her students—the not-real people—and twice while we worked I saw her glance up at the time. My face felt as white and hard as the clock’s.
* * *
AT HOME I TURNED THE HEAT UP and showered a second time to get the feel of Bonnie’s hand off my arm. Asshole, I thought, as the hot water spilled down the muscles of my back. Asshole. I could still fight, and better than most. I could run that dojo better than Bonnie, too, and teach. I imagined the lessons I could teach her, and my patronizing smile as she failed, and the exercise turned into imagining a real class.
I turned and let the hot water stream down my back. I could. I could teach beginners, at least on good days. Or maybe self-defense. It didn’t have to be as precise as martial arts. Not physically. I turned off the shower and dried myself thoroughly, one muscle group at a time. The welt on my thigh was almost gone.
I sat in the kitchen in my robe with a cup of green tea, watching the dust motes dance in the slanting winter sunshine, absorbing the color of the cut flowers on the table and the sparkle of the brass handles on the cupboards. When my tea was gone, I decided to take a nap; it was a good reset button, something I had learned to do during my first budget season. I turned down the heat, took off my clothes, and climbed into bed. The sheets were clean and stretched tight and felt good. I could. I could teach. A jay scolded in a harsh, metallic voice.
A park at night, smelling cold and empty. From the shadows a laugh, dry as paper. I back up against a tree, and I know it’s waiting on the other side, but I can’t move, my legs are stuck, I am stuck, like a fly who lingered too long on sap-sticky bark now turning to amber. Trapped.
I
woke to rain clouds dense as black mold and muscles slow with cold. I struggled into my robe and closed the curtains. Who was I kidding? A child could flatten me on a bad day. And there would be bad days. MS always got worse.
I was fearless until I was twenty-two; until one night in a bar I was beaten by two men and I learned the story that most women already knew: that men beat women for no other reason than they could, because they were raised on the story that women are weak. We were taught we are weak. The message was beamed at all of us, from all sides, from TV and radio, plays and movies, novels and jokes, comics and social media: we are weak, we must rely on the kindness of strangers, call forth a man’s better nature, placate the savage beast. That night in the bar I understood on a visceral level what I had only known as a statistic: that women’s fear was a marketable commodity. Fear sells.
The understanding had filled the twenty-two-year-old me with rage. I turned that rage into a goad: learned to fight, to smash wood with my hands, to stretch my body, to toughen it, make it harder, stronger. Learned to not be afraid; to break their narrative. But Rose had been there to hold me, to put her warmth between me and the fear. Now there was no Rose. No one and nothing to breathe comfortingly under my hand while this thing stole my life.
* * *
GOSPA AT PALS—Paws Are Loving Support—said, “Yeah, we have some kittens, but they’re for people with HIV. Try the county animal shelter.”
“It’s three days before Christmas. There won’t be anything left. I need this.”
“Oh. Right. I heard—I forgot. Look…”
On the softball field we were sometimes rivals, sometimes teammates, always easy with each other. But now her voice took on that note I was already sick of hearing: melodious, compassionate, the voice you use for those worse off than you, those you want to be nice to and then never, ever have to think about again. As a fund-raiser I’d loved to hear that voice; it meant I could squeeze a huge donation out of the speaker because they desperately wanted to make the unpleasantness go away and get on with their healthy lives.
So Lucky: A Novel Page 3
