“… so if you can wait a few days I’ll see what—”
“Forget it,” I said. I’d never play softball again, anyway.
The fifth pet store I called, in a suburban mall, had a litter. “Just in, ma’am.”
“Any females?”
“Four female, six male.”
By the time I got there, an hour later, there were five left, tiny things with ears like satellite dishes and little bright eyes. One was on its own in a cage at about eye height, curled up tight as a kitty ammonite. I bent to look. It lifted its head and looked straight through me. It had white whiskers and a pink nose, fur the smudged beige-and-cream-and-smoke of fudge ripple ice cream. “Why is this one on its own?”
“She fights.”
* * *
I CALLED HER MIZ RIP, because she looked like fudge ripple and she ripped up everything that got in her way, including me. And she purred all the time, like a ripsaw. She was as big as my hand with teeth like needles. The pads of her paws were even pinker than her nose. She followed me everywhere, investigated everything, settled on my lap as though she had been born there. She weighed less than a baby bird. I was ridiculously happy to feel her tiny rib cage tremble under my palm as I stroked her. She slept. “That’s right,” I whispered to her as her paws kicked in a kitten dream, “I’ll protect you.”
I sat without moving for nearly two hours as it got dark outside. Maybe I would get a Christmas tree after all. Miz Rip would enjoy pulling all the ornaments off.
A shadow flitted through my peripheral vision. I turned. Nothing. Maybe a light flickering somewhere.
* * *
JOSH NEXT DOOR HAD A NEW GIRLFRIEND, Apple, who invited the neighbors over for drinks. I ached from the Rebif more than usual and it had been two days since I’d talked to another human. I went to take my mind off it.
“And what do you do?” Apple asked me over a glass of hot cider—organic of course, but so heavily spiced it could have been boiled sap. Josh snaked his arm around her waist and gave her a loose grin. Her dress was warm orange, a snugly fitted sueded material that made her breasts look like satsumas I could heft on my palm.
“Nonprofit work. Or used to.” I took another gulp of the sticky stuff. “I was let go. For being sick.”
Cancer, I could see her think. Cancer was what everyone thought. “That’s awful. Isn’t it, Josh?”
“Totally lame,” he said.
“For being a cripple,” I said.
“Totally lame,” he said.
The air behind me stirred, like someone standing too close, but when I turned, teeth bared, there was no one there. I blinked, caught between fight and flight.
“—great yard,” he was saying. “It could feed you: artichokes, tomatoes, squash, all kinds of squash, asparagus—”
I finally caught up with what he was suggesting. “I don’t grow things.”
“No,” Apple said. “The earth does.”
“Right.” Josh nodded. “Georgia dirt. Best in the world. Like, toss a cup of fruit salad from your car window and six months later the road’ll be jungle. Anyone can do it.”
Even poor lame cripples.
* * *
SKYPE WAS TOO FRUSTRATING and, like texting, not always useful with the eighteen-hour time difference. Aiyana and I began to talk mostly by email. In the middle of the night with Rip on my lap I could write anything. My latest included a picture of Rip, and a question I had not been able to find an answer to—I no longer had my GAP access to Emory’s library—on the coincidence of MS and HIV. I signed, as I always had, Love, the kind of love you’d use for a family member or a very close friend. We had never said I love you.
I woke up to an email from her: not very long, but bright and warm, with a selfie of her and her two postgrads wearing shorts and Santa hats in a bar.
You’d like them. Also, here’s a PDF of a paper I found. I don’t know if I buy it. I’m not saying I don’t buy it; it’s interesting: MS as a metabolic problem. Happy Christmas, love xx.
* * *
CHRISTMAS. Me, a cat, and an academic article; a soon-to-be ex-wife in the middle of the Caribbean, and a question mark on the other side of the world.
When Rip was fast asleep, belly drum-tight with roast chicken, I poured myself a glass of wine and opened the article. It was heavy on biochemistry. I had to keep stopping to highlight terms and go look them up. The third time I lost my place in the file I padded through to the office and printed it out.
Paper was better for close engagement. I could underline in different colors, scribble in the margin, add sticky notes, all while looking up terms on the tablet: “foam cells,” “PPARs,” “OxLDL.” It began to make sense. It took what was known about MS, the research results that had been reviewed and replicated, and reassembled them into something new, a jigsaw puzzle in which, for the first time, all the pieces fit. There were no odd bits left out, none hammered in with brute force. The resulting hypothesis seemed elegant, clean, and clear: MS was a problem of faulty lipid metabolism. It was a direct consequence of high-sugar, high-animal-fat diets. A sort of atherosclerosis of the central nervous rather than the arterial system. It explained so many puzzling aspects of the disease, such as why MS cases were on the rise, why it developed more often in women than men, why vitamin D was a huge influence, and more. But I couldn’t find any treatments associated with this hypothesis, or any trials.
Maybe Josh was right, I should eat more vegetables. Maybe I’d think about it in spring.
* * *
ANOTHER TWO-DAY COLD SNAP. Rip huddled on my lap and I dug out a thick sweater. Aiyana texted a photo of herself in shorts and bikini top eating tofurkey on a beach.
Nothing about HIV and MS.
* * *
TWO WEEKS INTO THE NEW YEAR I went to see the neurologist again. Her office suite was faced in polished marble. My reflection walked toward me as light as a dancer.
Liang thumped and prodded and um-hmmed to herself.
“I’m worried about my eyes,” I said.
“Blurring? Double vision?”
“More like catching sight of something, like a reflection or a shadow. There one minute, gone the next.”
“Hmm.” She made me stand up, look side to side, follow her finger, close my eyes and open them. Shone a light in my eyes and peered intently. Her breath was moist and sweet. I stared at her name again. Marie. “No nystagmus.” She clicked the light off. “There was nothing on the MRI that might indicate a problem. And I’m not seeing anything. Would you like a referral to an ophthalmologist?” I shook my head. “Where are you with the Rebif?”
“I’ll be at the full twenty-two milligrams in about a week.”
“How do you feel?”
“Some tenderness. Some aches. I get very tired the day after.”
“Most people adjust. But I can prescribe something for that, just in case.” She began to key in the prescription.
I sat down. “The makers of Rebif are Serono. A subsidiary of Merck.”
She nodded, hit enter.
“They make something called Serostim. People with HIV take it for wasting.”
She folded her hands in her lap with the deliberate patience I had come to loathe.
“Which got me thinking, so I did a search. People with HIV don’t seem to get MS. Why is that?”
A pause. “Research is ongoing.”
Some people hated to say, I don’t know. But there was something there, I just didn’t know what. “How does Rebif work?”
“It’s believed—”
“Belief is not data. The data don’t convince me that the main problem is the immune system.”
“We use evidence-based medicine.”
“The evidence is crap.”
She sighed. “Denial at this stage is common.”
Denial?
“What have you been reading?”
“Are you familiar with the lipid hypothesis?”
; “The Swank diet has been—”
“Not a diet. A hypothesis. That MS is a lipid metabolism disorder. OxLDL, PPARs, all that stuff.” It had all seemed so clear when I was looking at the diagrams and following the text, but now I could not recall it, exactly. “I can send you a copy.”
“Of course. I’d be happy to take a look.” She was not really listening. She stood up. “Meanwhile, the modafinil should help with the fatigue. I’d be happy to discuss these, ah, lipid theories at a later date.”
I opened my mouth to say, Hypothesis, and just one, but a flash of movement in the corner of the room slapped the words back down my throat. Liang nodded pleasantly and left. It took me a long time to get over the irrational fear that something lurked on the other side of the door, waiting for me, grinning.
* * *
AT WYNDE HOUSE one of the first things the newly diagnosed were told was: Find your people. No one knows how it feels to go through what you’re going through more than those going through it, too. No one can offer better advice. There were plenty of online groups, ranging from old-fashioned LISTSERVs to Facebook to Snapchat, and print magazines sponsored by various nonprofit and commercial organizations. I found one print journal, MonSter!, run by people with MS for people with MS. The website seemed a bit out-of-date, but they did not accept money or advertising from the medical-pharmaceutical industry. I signed up for a six-issue subscription.
Words were good, but physical, in-person connection was better. The closest thing I could find to local peer support was a group run by the American Multiple Sclerosis Society that met weekly.
At the DeKalb Community Center, I walked along the blank, airless corridor more and more slowly until I was barely moving at all. There were black streaks here and there on the floor. I imagined the thick rubber tips of canes and walkers squeaking on the vinyl, twisted feet dragging along, the tires of scooters and powered wheelchairs scuffing the walls. The door was painted dark blue, a lovely color, like twilight, the time to rest, to lay down the burden and hand over management of your life to others. The handle was brushed steel, a big lever suitable for people in wheelchairs. There was a disc button to hit, too, to open the door automatically.
I stopped. I ran support groups, I didn’t join them. This meeting was for cripples, not people like me. Laughter hissed behind me to the left. Adrenaline jetted into my long muscles and swelled my heart and lungs. I turned slowly. Nothing. I turned back. Nothing. But the feeling of being watched did not go away.
I breathed, breathed some more. Face your fear. I went in.
I don’t much like dogs. So of course the first thing I saw was a plump pug, the kind that always bites, wearing a beautifully dyed yellow collar and wheezing at the feet of a woman with skin wrinkled as a ruined grape. Her chestnut wig was styled in a 1970s pageboy, her cane propped next to her against the only empty chair. She gave me an ornery, milky stare, then flicked her attention to just beyond my left shoulder. Insult or attempted intimidation, I wasn’t sure. But the first rule of self-defense was, Don’t do what they want. Break the narrative.
“Hi,” I said to the group. “I’m Mara. Just diagnosed.” To the ruin, “Would you like to move that cane or should I?”
She brought her gaze back to mine and her expression changed to something I could not name and did not like. She moved her cane. I wanted to snatch it from her and break her skull with it, but beating the matriarch to death was not a good way to introduce yourself to a group, so I just nodded, and settled in.
The hired counselor was talking to the small circle in a Now remember we’re all here for each other, it’s a safe space tone that at Wynde House would have had her jeered from the room. Six women, two men. The other women were in their forties and fifties, two in power chairs. One had her arm immobilized in the kind of forearm splint I’d seen often as a volunteer at the women’s shelter. All were white except one with straightened hair. Every one of them had the look of an untroubled Christian. One man was young with gleaming jaw-length hair and multiple piercings, the other late fifties and wearing a sports jacket with leg braces visible under his dress socks and loafers. The pug waddled over and snuffed at his ankle, then at the chair leg. If it was my chair I’d be shifting it out of the way before the dog could cock its leg, but the man didn’t seem to notice it. No one was paying it any attention.
The counselor introduced herself as Wendy and asked the group to each offer one pearl of advice to me, the newcomer. What did they wish they had known when they were first diagnosed?
One of the women in a power chair advised me to find a hobby I could do lying down, just in case. Another suggested I use a shopping cart at Kroger, even if I was buying just eggs, because carts were great to lean on without anyone guessing there was anything wrong. She looked at me sadly and added, “And you have to do everything yourself, be ready for that.” The older man told me on no account to get handicapped plates for my car because it was like having a target tattooed on your forehead; no, get the placard you could take down and tuck out of sight when you didn’t need it.
The pug stuck its nose in one woman’s purse. She ignored it. They all ignored it.
I felt as though I were surrounded by aliens. During my training I’d sat in on a lot of groups. AA meetings were wry, with an attitude of Don’t apologize, just improve. HIV meetings crackled with rage and zest. Breast cancer meetings were war zones, full of stirring martial metaphors followed by weeping implosions. This group felt like nothing but self-pity and learned helplessness. Their shoulders were hunched, their eyes evasive, as if they all expected to be treated like victims, as though they had abnegated responsibility for their lives.
The pug sniffed my shoe and began to drool like they do just before they bite. I eased my foot away. It growled.
The old woman’s bright gaze fastened on mine. “So you see him?”
See him?
The conversation had moved on. The pierced man was saying, “—whole left side went cold from the armpit down. Now it’s numb. The neuro won’t say if the feeling will come back. Mostly it does, he said. For most people, most of the time. So I’d just have to wait. But, fuck!” The woman in the sling flinched. “It’s been weeks! I’m stressing out. How do you cope, waking up every day not knowing? And not knowing when it could happen again?” His voice trembled.
They all talked at once:
You can never know, only God knows—
—long had it been? Just five weeks? Well—
The old woman lifted her chin at me. “I’m the oldest person in the world with MS,” she said, as though we were the only people in the room. But she was loud, like many people who were losing their hearing. The counselor flicked me an Ignore her and she’ll stop look. The old woman caught it and stretched her mouth in a hideous grin. Her false teeth were dull and the fake gums a bubblegum pink, shocking next to the brown-splotched yellow of her skin. “Most folks die right around pension time. Just give up, lay down, and die. Not me. I’m ninety-one. I know some things. So you listen to me.”
The rest of the group talked on determinedly.
—but God never sends you anything you can’t handle.
—Amen!
“See Matt?” She nodded at the pierced man. “See that fire over his head?” Matt heard—he twitched as though he had almost reached up to check—and for a second I thought I saw orange flame coiling over his hair like a nest of snakes. I blinked, blinked again. “Doily brains get that glow, right about the time they start to tremble. He’ll be trembling soon; you can hear it in his voice sometimes. Then they forget their names, or tell you a story for the twenty-eighth time, or they run their fancy chair right into the wall.” Matt flushed. The old woman creaked with malicious laughter. “Fool. Five weeks is nothing.” She raised her voice. “It’s seven weeks you have to worry about! Seven!” Back to me. “Longer than that and you’re stuck with it. Me, I’m just saddled with this damn dog. Ugly son of a bitch. He yaps, and he’ll nip if he thinks I’m not paying att
ention. But if I take care of him he’ll trot along sweet as pie till the next time he’s tired or hungry or given the wrong food or gets too hot. I just don’t forget I’m the boss. You understand me?”
—There’s nothing a good attitude can’t fix!
She nodded as though I’d said yes, and scratched under her chestnut-colored wig with a bony finger. “Yours, now. Yours ain’t a small dog. Not flame, neither. Never seen anything like your great grinning thing.”
Grinning thing? Nothing made sense. It was too hot, and too many people were talking at once.
—kind to the world and the world will be kind right back.
“You scared? You should be. It’s aiming to kill you. And I doubt you’ll stop it.”
My chair went over with a bang. The group turned as one, their upturned faces blank. “You,” I said, but the rest of the words clotted with rage.
I tried to slam the door behind me, but it was on a hydraulic hinge and just wheezed shut slowly over the old woman’s laughter.
* * *
ANGER IS A STRANGE BEAST, hot and burly as a bear. It slumbers in its cave, ignoring all petty distractions until one day along comes someone stupid with a stick. Then anger roars out in a rush of adrenaline. It’s a physical thing that needs physical remedies. I needed the punchbag, but I did not want to go to the dojo and face Bonnie. I did not want to face anyone.
By the time I got home I felt drained, and thought maybe the anger was gone for a while. But when an animal leaves its cave, you know it’s lived there: there are droppings, and chewed bones that need cleaning out. And that takes words.
A good place for angry words is social media. When there is only a screen, you can get down and nasty and spew bile on the whole human race for being whole. And no matter what you say, or when—four in the morning, lunchtime, eight o’clock at night—someone, somewhere, will be listening and have an opinion. Or several.
Rip settled on my lap and I went hunting. The first hashtag I found, #MSproud, was a crew of chirpy cripples filling their posts with anodyne encouragement, emojis and gifs of their “fur babies,” and of grandkids who could not be bothered to visit. As I read I breathed faster and faster and now the rage was back like a living thing humping its way up my throat. When I read
So Lucky: A Novel Page 4
