So Lucky

by Nicola Griffith

  I remembered the kettle and went back inside.

  The injection site reactions on my stomach and thighs and buttocks got worse. I worked on CAT business strapped with ice packs now. I began to use a cane whenever I left the house.

  There was a message from Doug, the CAT director in Minnesota: one of his state senators had changed their vote on the bill we had been working on. I sent some advice about email-in campaigns. I liked Doug. Sometimes he put together YouTube videos of local political shenanigans in the persona of Inspector Clouseau, complete with hat and glasses, exaggerated fake mustache, and a terrible accent. “Gives me something to do,” he said on one of our Skype calls, giving me his curled-to-one-side smile.

  Miz Rip leapt onto my lap. I winced. She was bigger, and bored. Maybe I should put a cat flap in the back door. But she wasn’t old enough yet.

  Not until she is six months old, has all her shots, and been fixed, the vet who gave us a reduced rate for the PAWS account subscribers had said. She also said, My niece has MS. She was the fifth person since Christmas to tell me something similar. Why had I never met these people before? Did their friends and relatives keep them locked in the attic? Or did they just turn their faces to the wall and refuse to get out of bed?

  “How old are you, anyway?” I asked Rip, then worked it out: eight weeks old when I bought her at Christmas, so born at the beginning of November. Four months ago. When Rose had left. When I first tripped over the leaf that wasn’t there.

  She was born at the same time as my MS. My MS would live longer.

  Josh is planting tomatoes. He thinks I should grow vegetables. I said, Plant me some flowers. He said, Flowers won’t feed you. We settled on some herbs I can grow in pots on the back deck. Easier to take care of. He also tells me I should do yoga. Well, *Apple* thinks I should do yoga. Do I look like an om-and-crystal freak?

  Josh was weird but at least he still talked to me. He still saw me.

  * * *

  FEBRUARY’S HINT OF SOFTNESS became March’s humid mornings. Spring. The dogwoods and cherry trees were in bloom; their soft pink-and-white clouds fell along every street, and the pavement turned greenish gold with pollen. Green-gold fur collected in the corners of the windows and on the hood of my car.

  I was violently allergic to tree pollen. My MS got abruptly worse. Antihistamines did not help. My reactions to the Rebif increased, until by the end of April the hivelike swellings on my legs and stomach started to weep clear serum and it hurt to pull on a pair of jeans. Humidity now stifled the whole day. Good weather to be out on the water, but I had no kayak and could not face the hurly-burly of the boat dock and negotiating a rental.

  CAT’s revenues were just stable enough to transition Christopher to part-time-employee status. His first task was to research recent cooperative healthcare groups so that as soon as we could afford for me to draw a salary, too, we could both get benefits.

  The neurologist took me off Rebif and put me on Tecfidera, an oral drug that cost $66,000 a year. Cursory research showed 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. But a pill twice a day was better than needles. And for the first six months at least there would be a co-pay program: the first few hits were free. With the program came membership in a pharma-sponsored MS peer group. Most HIV regimens came with the same marketing and I knew how they operated. One look at the image of a healthy-looking woman leaning on a fence in some Big Sky state told me all I needed. I recycled the brochure without reading it.

  Two hours after I swallowed the first pill, I turned hell-red and burned for ninety minutes. And the second time, and the third. On day four, my heart raced away with me. I counted to 180 beats a minute, then could not keep up. Then it eased. On the fifth day, I was making tea when pain flashed down my left arm so bright and sudden that I froze in mid-pour. I breathed carefully but when I tried to move the pain flashed again. After an archery injury ten years ago something like this had happened: pain in my left arm caused by movement. Ulnar and median nerve inflammation, my internist said. I knew how to deal with it. Moving one millimeter at a time, I set the kettle down, edged to the kitchen table, and sat. Normally it was three strides. It took me five minutes.

  I sat for nearly an hour, until the pain began to leach away.

  The next day I seemed fine: the flushing was minimal, my heart rate no faster than that of someone who had climbed a flight of stairs. But that night, getting undressed while Rip kneaded the bed, nerve signal ripped through my neck and arm, then again before I could catch my breath, and again and again, until it became a sheet of lightning that flashed through my entire left side in an endless cataract of electricity that turned my brain white.

  I managed to call 911, but every time I tried to organize my thoughts enough to speak, the pain blew me apart and made me yell. But landlines are wired into the system.

  All I remember of the ER was a nightmare of people shouting, another botched IV, and finally fentanyl flowing into me like ice water to freeze the pain in place and float it far away. I went home with a prescription for two oxycodone every six hours.

  A nervous system under the influence of serious opiates feels as though it is routing electrical signals through another dimension. I would decide to raise my right hand and, after galaxies moved past each other and stars died, my hand would lift, by which time I’d forgotten what I was reaching for. Every detail became hyperclear and interesting. I found myself seeing a whole world in the grain of the coffee table. Sound slowed and took on substance.

  Around six o’clock I realized I’d forgotten to take my morning Tecfidera. I took it with two more lovely round white pills.

  As evening came, shadows began to twist and sway. One detached itself from the corner of the door fifteen feet away and crept toward me. I sat and watched. A person, maybe, but a stretched-thin person who wasn’t there, who instead of lengthening like a normal shadow grew denser and more defined. The air above it began to thicken as though the shadow were trying to step through to reality.

  I licked my lips. I did not like that.

  My left arm fizzed tentatively. I did not like that at all.

  A ghost of a laugh. Oh, I really did not like that. And then my arm flashed with pain, bright as light, and I tried to move but the pain spiked me to the chair, and again, and again. And I could not take my eyes off that shadow reaching out to me. It’s aiming to kill you—

  —and Rip was hissing, fur raised, and I blinked, and then she was chasing her tail then cleaning her paw and the shadow was just a shadow.

  Half an hour later the pain faded to nothing and I got up and turned the lights on, and sat again, watching doors and windows and floors. But nothing moved.

  In the morning I took just one oxycodone, and noted the exact time of my Tecfidera dose. Two hours and five minutes later, my heart began to accelerate and the first nerve pain flashed through my arm.

  When it passed I phoned Liang’s office and told them I was coming in.

  I told her about the flushing and increased heart rate. She nodded. “Peripheral nervous system excitation is one of the listed side effects.”

  I told her about the pain. Its shape and heft and color.

  “Interesting,” she said.

  “It’s the drug.”

  “That’s not one of—”

  “It’s the Tecfidera,” I said.

  She pondered. “Have you had pain in that arm before?”

  “Years ago, after an archery injury—my elbow.” She frowned. “But not like this, not endless waves that build and build and then just flood me. It’s like someone breaks the dam and all the pain in the world pours out.”

  “Ah.” She sat back. “Pain gating. Pain gate failure.”

  My turn to frown.

  “Do you swim?”

  “I have swum.” I’d never liked it; too much constant resistance. I preferred sports with moving objects I could hit.


  “When you first jump in the pool the cold is shocking. But five minutes later you’ve forgotten it. That’s because your nervous system shunts the discomfort aside. It figures out that the cold isn’t dangerous, and closes the pain gate. You don’t need the message, so you don’t feel it anymore. It’s possible that Tecfidera excited your peripheral nervous system to the degree that your pain gate failed. But that’s not one of the listed side effects.”

  “Then we should list it.”

  “I can report it to the FDA.”

  “Do.”

  She nodded. “It could be demyelination of the peripheral … Hmm—the überganger zone…” She cleared her throat. “I’d like a cervical MRI with contrast. And perhaps we should next consider—”

  “No.”

  She tilted her head to one side. “You might have a new lesion. We really need—”

  We. There was no we when it came to pain. “No.”

  “Then another course of pred—”

  “No. I’m sick of it all.”

  Before we moved to this country, when my little sister was two she used to sit in the back garden—the yard— and dig up worms with her hands. When she didn’t squash them by mistake she’d drop them in one of those miniature plastic buckets and croon to herself while they hauled their way up the smooth sides to freedom, fighting for every quarter inch. When they got to the top she’d flick them to the bottom again. They kept trying. Over and over. When she got bored she ate them.

  * * *

  I SAT IN THE BACKYARD. It was mid-morning but clouds were already gathering and the air tightening: thunderstorm weather. Miz Rip stalked a swaying weed. It was only her second time outside; she adapted frighteningly fast. She was still young, of course; her brain still elastic, still forming its neural networks. My brain was set in its ways. And now there were holes in it.

  I lay on the grass and stared at the clouds gathering like silverfish. I wondered how it would feel to surrender like vapor to the wind, let go, give in. I could throw myself in front of a car. But that was a little melodramatic, and there was the driver to consider. A fall from a tall building would work. Carbon monoxide—but I would hate that awful exhaust stink to be the last thing I smelled. Pills. I had a lot of those now. Rose would miss me, but she had Louise. CAT could stagger along on its own. It was healthy enough financially since I started selling the mailing lists. There was nothing to stop me really. My mother would be upset, but she had survived the loss of her other daughter. She hadn’t seen me in nearly a year, hadn’t even visited after the diagnosis, and it seemed too hard to travel to London now. Aiyana might never come back.

  I plucked a blade of grass idly. My life wasn’t mine anymore, anyway, it was the disease’s.

  Miz Rip jumped onto my chest. She’d brought me a dandelion. Its scent was fresh and sharp; the stem oozed slightly. Rip smelled exactly like herself: dusty sunshine. A bird sang. I blinked hard. It was a lovely day. Really.

  * * *

  MAY WAS HOT. From my air-conditioned car to the air-conditioned co-working space was only ten yards, but the pavement wavered in the heat and my cane seemed to sink into the blacktop. A man I passed at the door pretended not to see me struggle. The woman behind the reception desk smiled in a bright Southern way, as impersonal as dropping a coin in a beggar’s cup; before the cane she’d greeted me by name.

  At his designated desk, Christopher was happily tapping away. “The latest FDA proposals are in Dropbox.” He looked at me more closely. “Are you all right?”

  I propped my cane against the windowsill and sat. “I’ve been better.” I opened Dropbox and tried to pay attention to the FDA’s proposal to tighten their accelerated drug approval procedures, but I was so tired that the words eeled out of my grasp. I pushed the laptop away, baffled, and decided to tackle email.

  I worked for two hours, until even simple email sentences began to elude me. When I started hitting the wrong keys, I gave up. “I’m done,” I said to Christopher. Iced coffee would help, but the thought of struggling onto one of the high bar stools in the café while everyone studiously looked away seemed like too much work. “I’m going home.”

  I made my way home through the fudgy heat. The sky was clear but there would be a storm mid-afternoon, I could feel it. I watched an old Star Trek movie. Ate ice cream.

  The mail came. A letter from my mother, handwritten, which was her way of saying I love you without having to do much, and four pieces of junk mail—two with one of the false middle initials I’d put in to track who was using our mailing list. Also an invitation to donate to a women’s foundation in Eureka, California. I tossed the fund-raiser in the recycling. Skimmed the letter from my mother: more complaints about the unfairness of life. Looked at the junk mail. One of the envelopes with my false initial came from a cane and stick manufacturer. It was a nice brochure. But we hadn’t sold our list to this company.

  I phoned Christopher. “Who got the list with the initial J?”

  Faint ticking of the keyboard. “Pet People.”

  “Send them an email: we know they’re selling the list on. Tell them not to do it again, that we want the entire proceeds of that secondary sale, and that if we don’t have a satisfactory reply from them in ten working days we contact our attorney.”

  “Feeling better?”

  “Ice cream has a way of pepping a girl up.” On cue, the spoon in my dish rattled. Rip, licking up the melted remains. I sighed. “Got to go, Christopher.” Milk and cream gave her the runs.

  The house was strange with storm light and swollen with humidity despite the AC. The air felt menacing, greasy, and electric. Dense charcoal and purple clouds began to layer overhead. It would be a big one. In the gathering dark I went round the house to turn off lights and unplug power strips. Rip followed me, winding in and out of my ankles, getting in the way.

  I was pulling the power cord from the bedroom wall when lightning sliced the clouds open and two seconds later the crack sent Rip under the bed. Another blinding flash, then another, and in the kitchen the appliances seemed to leap from the dark in vivid freeze-frames. The crack and thunder rolled into one another, with more saber cuts of light until it was like being in the middle of the Charge of the Light Brigade. Then a high BANG and a green-and-violet flash: a transformer going down. And rain fell out of the sky like God had upended a bucket.

  When the rain began to steady and there was a gap between crack and rumble, I opened the windows. Cool air gushed through the house. The electricity would not be back for a couple of hours. I plugged a few things back in for when it was and took my iPad to the sofa. With wifi down there was no point trying to stream a show, so instead I pulled up An Indigenous Peoples’ History of the United States and began to read. Rip crept out from under the bed and settled on my lap. We sat quietly in the cool, earth-scented air and listened to the rain.

  I woke to CNN.

  “—sclerosis.” I scrabbled for the remote and turned up the sound. “Police in Richfield, Minnesota, say they think he was tortured by two or possibly three intruders over a period of twenty-four hours. We go live now to…”

  My skin felt two sizes too small, as though it was shrinking on my bones.

  Switch to live reporter. “—from Richfield, where the local community is in shock. The wheelchair-bound victim”—flash to picture of blond-haired man with a neat mustache, wearing tux and bow tie, laughing at someone off camera—“Karl D. Brawn, was tied into his chair, then systematically beaten, burned, and stabbed. Police report evidence of salt in the victim’s wounds.” Karl’s wounds, I thought fiercely. His name was Karl. “I asked the spokeswoman about this.”

  Cut to earlier tape. “So you think the salt was an imaginative torture method?”

  Imaginative? Little Johnny is so imaginative …

  The police spokeswoman, about thirty, white, shrugged. “It’s possible, but it might have been a way to check if the victim was unconscious. He probably passed out several times. They would have b
een checking to see if he reacted. To make sure he was dead.”

  The reporter nodded as though this were an everyday thing. Normal to comment on torture technique, as though it was baseball. And then CNN turned its avid eyes to the suffering of the marine life off the coast of California, where there had been another oil spill, but I didn’t hear it. My senses were turned inward, imagining.

  Three men went into another man’s house, a man with MS, to rob it. When they found how helpless he was wheeling himself about the kitchen, wondering whether he needed to buy bread? they laughed and looked at one another while he panicked, while he held out his hands, saying “No. Just take the money” and formed a triangle around him. “Cri-pple,” they sang out. “Hey, cri-pple.” They would have teased him first, the way groups of men tease young women they are about to rape. The way cats play with their prey. Maybe they pushed his wheelchair this way and that until tears rolled down his cheeks and he tried to stop crying because he knew it would only make it worse the way it had when he was seven in the schoolyard. They would laugh and poke and jeer and call names and then get disgusted and the pokes would become pushes and the pushes slaps until they worked themselves up enough to get serious. To find electrical wire in the toolbox and tie him to the chair, to heat the flat of a knife blade in the stove flame and, maybe a little nervous at first, press it against the tender flesh of his inner arm and he cried out, but they didn’t like that, they hit him, and now he swore and spat and they told him to shut up, but he didn’t, he couldn’t, no he wouldn’t because by now he knew they were going to kill him and when he wouldn’t shut up they laid the hot knife across his mouth.