So Lucky: A Novel
Page 5
I wanted to use my hands like killing tools. I threw the tablet so hard it bounced off the sofa and onto the rug. Rip purred. She was a predator; in her world violence was meat and drink.
The alarm on my phone pinged: time for my shot.
I took ranitidine to protect my stomach against naproxen, then took the naproxen against the muscle aches of Rebif, then pulled down my pants, reached around awkwardly, and stuck the full 22 mg in my ass. It hurt. First thing tomorrow I’d need the modafinil to fight through the fatigue.
Anger made me restless.
More research. More rage. And I began to see a pattern. From the freezer I got a gel pack—the one I used to use for training injuries—to sit on. Back to Twitter. I used the #MultipleSclerosis and #disability hashtags, added, with bitter fuck-you pride, one of my own, #CripRage, and began a storm of tweets.
<—for meds that work. For quality of life. We *don’t* need pity. We *don’t* need homilies. We need action. Now.>
<—you probably know what I’m talking about. So RT if you get it and want to do something about this. Contact me. My DMs are open.>
Then I collected the tweets and turned them into a Storify, into a Facebook post, into a series of screenshots, and cross-posted to every platform I could think of.
* * *
I GOT UP AT FIVE THE NEXT MORNING to check my messages. There were more than three hundred.
< … and why isn’t there an organization that helps with homecare, the way the Denver Breast Cancer project does here?> from Moke in Denver.
< … so tired of having to explain that I’m not stupid, just Deaf> raged Kali in Kansas.
I scrolled through them all, tears running down my cheeks.
* * *
MODAFINIL TURNED OUT TO BE JUST WHAT I NEEDED to ride the social media wave: a narcolepsy drug like a smooth, high-tech version of meth. I set up Cripples Action Team. CAT was a great acronym. Fast, powerful, ruthless, and in-your-face uncompromising. Inside forty-eight hours we had four hundred members and a tagline: Whatever it takes to help us help ourselves. I liked Nothing about us without us! better, but it was already taken. In a blaze of energy, I put up a website, CAT-org.com, with a single page: the tagline, a contact form, and a big blue Donate button that went to a newly opened bank account. We could tweak it later. I drafted a mission statement and sent out a link to the document for members to tear down and rebuild. Then I started calling people: activists first, and those who thought of themselves as the leaders of the local social justice community. They gave me time because they still recognized my name. And I was involved in the search for a new director for GAP, the plum job.
I used much of the same spiel I put in the original post.
“—and we need money. We need time and attention. We don’t need pity. Empathy, yes. Help, yes. Pity, never. You feel sorry for me? Donate. Right now. Do it. Crips are more than twenty percent of all voters. We’re a powerful bloc. Send me a thousand dollars. You’re over budget? Then donate office equipment…” I would sell the good stuff, barter the rest, but they didn’t need to know that.
I wrote to Aiyana.
Fund-raising’s all about leverage. You should have seen me: on the phone round the clock with producers at WSB and Fox 5 to get stories out. Then links to those stories on the website. Then press releases about the website. I bullied Max to get the mayor to let me use his name in a letter. You remember that time we went to Bacchanalia but the wait was too long? Two lunches and a dinner meeting there—fuck, it is not cheap—and I had the Chamber of Commerce. And from there it was a sweet, smooth glide to the big dogs of corporate Atlanta: Coca-Cola, Delta, UPS. We are in business!
The mission statement began to take shape:
CAT is a flexible task force with an active, evolving mission to help disabled people help ourselves. Whatever a specific community needs.
Flexible was important. I’d watched too many nonprofits fall foul of IRS exemption rules when their mission changed slightly.
Currently, we prioritize:
• Providing low-cost, practical quality-of-life services to people with disabilities.
• Lobbying to improve local, regional, and national legislation affecting people with disabilities. (Team with National ADAPT on this?)
• Training in media networking to maintain a voice in any issue relating to disabled lives, including but not limited to transport, education, healthcare, working conditions, minimum wage. “Nothing about us without us!”
• Connecting networks: home healthcare, medical advocacy, voter registration, and more! We envision this changing, sometimes rapidly, in response to need.
I opened a new PO Box for public correspondence and filled in the paperwork to incorporate as a Georgia nonprofit. That required a street address. I hesitated. I was reluctant to use my own address because the data was subject to FOI requests. But few people bothered with FOI, and I needed speed. I used my address. As the federal healthcare law was currently written, pre-existing conditions were no longer a problem for individually purchased insurance. But that could revert anytime. I needed to get CAT’s finances steady enough to hire employees. Employees meant group health insurance. And small group health insurance could obviate the pre-existing condition problem. I had ten months before my current plan ran out.
* * *
ROSE CAME BY THE SAME DAY that I heard CAT had been granted status as a registered nonprofit. “And it’s called—what? Cripples Action Team?” We were in the living room. Miz Rip was sitting like a miniature sphinx on her lap, eyes half lidded. “Cripple is an ugl
y word to call yourself.”
“Think of it as reclaiming it.” Like queer. She hadn’t much liked that, either.
“And you’ve got 501(c)(3) already…” Rose was tan, and ten pounds heavier, but there was a dissatisfied look to the rich, smooth skin of her face, one I recognized. She had been bored on that cruise. Miz Rip stood, stretched, turned around, and settled down again in exactly the same position. “You’re just like a grown cat already, aren’t you?” She stroked Rip under the chin with one finger—all that would fit. “And I bet you’re just like your mom, all ready to fight things ten times your size.”
Ten years ago we’d had a hamster for a while. Rose had always talked to it instead of me when she disapproved of something I’d done.
“What is it this time?”
“Nothing.” She stroked Rip some more. “I just think you need to look at what exactly you’re fighting.”
“What do you mean? All this inertia isn’t enough for you? How about discrimination? What about—”
“That’s not what I mean.”
I blinked.
“You’re acting the same way you did twelve years ago, when you first started karate and self-defense. As though if you could just find the right lever to pull you could make the world safe.”
“That—”
“No. Listen.” Her eyes were very bright. “I thought I was going to lose you all those years ago. You were angry all the time. ‘Women,’ you said. ‘We’re being hunted like deer!’ And off you’d go to the dojo to hit things and dream about hitting people. You never let up. Every movie we saw, you’d shout at the screen, ‘Why isn’t that woman fighting back!’ You’d throw every book you read at the wall: ‘Why? Why are they doing this to us?’ You saw violence against women everywhere.”
“It is everywhere.”
“So is disease, and starvation, and child abuse. We don’t change our lives because of it. All those drills you made me do: what to do if I was in the kitchen and you were in the bedroom and a man with a knife came in. What to do if I were held hostage. And you’d get angry at me if I protested.” I didn’t remember that. “I tried to talk to you but you couldn’t see, you wouldn’t see, that you were so angry because you were scared. And now you’re scared again. I don’t blame you. MS is a scary thing. A terrible thing. Fear is understandable. So is anger. But not this kind of anger, this awful, burning rage that just feeds on itself. You need to accept what’s happened.”
“I don’t—”
“No. I don’t mean give up or give in, just … Mara, you’re frightening me.”
I didn’t want to frighten her. I hadn’t known that I had frightened her before.
CAT’s full of cripples, that’s what people see, but cripple is just one facet of a person’s existence. We’re also marketing gurus, code monkeys, project managers … A few are crips but not sick and tired—and I have modafinil. It’s amazing how fast you can set up a test org when you expect it to not work. When you think, Hey, whatever doesn’t work we’ll just fix. We worked full-on, all day and half the night, and got the skeleton up—a slick website, complete with funding, sponsorship from a pet-walking app, and partnership with an animal shelter—to get pets to crips who live alone. The pets, dogs mostly, are for adoption, or short stay, or just a two-hour visit. It’s called PAWS—Pets As Warm Support. Let Gospa sue.
I did not tell her about the old woman. I did not tell her about Rose. I only told her the parts that would make me sound vital and active. Alive. Worth coming home to.
The test org was meant to serve Metro Atlanta, but things moved too fast to stay small. Once I had had my fortieth message from places like Athens, and Columbus, and Augusta, I called together a CAT quorum and we rewrote the PAWS charter for all of Georgia. Then, of course, I started getting calls from Alabama and Tennessee. Who didn’t want a two-hour visit from a friendly puppy that you didn’t even have to take for a walk? Soon I was going to need an admin assistant.
The sky was bright but temperatures unpredictable: thirty-one degrees one day with air hard as a plate, a soft seventy-two the next. I ignored it all, and got busier and busier, and woke up more often with my legs not quite working and the stretched-tight feeling of exhaustion and nausea. I couldn’t seem to stop. I could take more pills, but what I really needed was a break, to get out under the sky.
* * *
THE LAST DAY OF JANUARY felt almost normal: gray and fifty, the kind of weather that made Atlantans stay at home. The north end of Lake Lanier was quiet and still: a combination of the cold and drought-level depth made it difficult to launch a boat, and kept the fishing tours and partyers away.
My still-water kayak weighed less than twenty-five pounds and folded up into a box with a strap. With no one around I could park by the water and drag it to the sloping, red-dirt shore. Even working slowly, with rests, it took less than twenty minutes to unfold, snap into its pointed twelve-foot shape, and tighten. All I could hear were a few birds and the lap of the water against the big rock I would use to get in. By the time I buckled on my life vest and decided what angle to feather my blades I was already tired, but the tension between my shoulders had eased.
Without a dock, it was harder to get into a still-water kayak than a sea kayak, and it meant getting wet. But that’s what the wet suit was for.
The water was cold and heavy. But within two minutes my arms and shoulders remembered the rhythm, and the kayak’s bow began to slip through the water. I left the dirt and bare alders behind and headed into the deeper channel that sixty years ago had been the Chattahoochee River.
I rested the paddle across the cockpit rim and drifted. Under the surface swam bass and bluegill. On the shore of the wilder areas there might be bear and beaver, and before now I had seen duck and deer, but today all I saw was gray sky and gray water. Here I could forget that walking was hard. There was no one looking, no one to guess my legs did not work. It was just me under the sky.
Then I realized how far the shore was, the effort it would take to paddle back. I would not have the juice to climb out of the boat, drag it up the slope, pack it up, pack it out, drive myself home.
* * *
JANUARY TURNED TO FEBRUARY and the weather skated from one extreme to the other. I could walk well enough if I moved slowly. One Saturday morning I headed down McLendon, enjoying the sun on my face. People in bright spring colors, blue and salmon and yellow, strolled on the sidewalk, nodding and smiling behind their sunglasses. At the Flying Biscuit I had to wait ten minutes amid the bright brunch world of friends and couples for my latte to go. Outside, the angle of the light was too low, picking out shadows from the mellow brick and root-heaved sidewalk that were all wrong, and the trees were bare. I could not shake the feeling that this was not my world.
Emails from Aiyana were bright and fast and far away.
Summer school almost over. Man, they *work* over here! xx
And
Planning for new school year, starts in just 2 weeks. Busy as hell. xx
The one picture she sent showed her lithe and strong and smiling. Smiling.
Miz Rip grew, snowdrops showed green above the dirt, and Rose came by less often. I found myself wondering who now owned that beautiful kayak I had left on the shore. There had been no phone signal by the lake, no way to call for help. By the time I got halfway home I was too tired, and too ashamed of my own weakness, to call anyone. When I went back the next day the kayak was gone.
GAP got a new director—not the one I would have chosen. I had lunch with Christopher.
“He’s a bitch,” he said unhappily. “I don’t think I’ll be able to stay.” He poured more dressing on his salad. “How about your new project? Any openings there?”
“Yes, if you can work on a month-to-month contract for a while. The money’s not stable yet. We have to get that sorted. And find some work space.”
“You have extra space in your home.”
“No.” I wanted to get the MS work out of my house. Draw a line bet
ween me and it. “I’d rather be around people. It’s what I’m used to.”
We talked more about the new ED—he was making all the wrong choices about client data security, opting for the low bid I had rejected; and he had locked horns with Hernandez about the Hate Crimes Task Force, trying to play the naked influence card instead of cloaking it decently in Atlanta good-old-boy geniality. “I heard him. He called him ‘Hernandez’—didn’t even bother with ‘Captain’—and said, ‘Hey, my buddy the mayor will take my side on this.’”
The mayor did not have buddies; he had sycophants and underlings. More to the point, Christopher was right: Hizzoner was a stickler for chain of command. He wouldn’t fuck with the chief, and the chief would back her man Hernandez. The only way to persuade her of anything was to buy her bourbon and talk about the old days when she was a vice cop. I learned that from my first self-defense teacher—to persuade an adversary, talk to them in their language and tell them the story they want to hear. But my old self-defense teacher was in Seattle, and GAP was no longer my problem.
We talked about nothing in particular for the rest of the meal.
What I had told Christopher was true. I had to get the group’s finances on track. The first six months of a nonprofit are crucial. After the initial three-month surge of memberships, media interest, and donations of time and money, there is always a lull. We had a benefit dinner and a sponsored walk scheduled for next month, but this month we were short more than three thousand dollars.
The next day, I called the bank. They were sympathetic but unhelpful: no assets, no line of credit. “You let GAP overdraw three months in a row early last year,” I pointed out.
“That’s not usual practice.”
“But you did it.”
“Our policies have changed.”
I doubted it. It was just that GAP had a lot of powerful, public figures on its side and was run by professionals they knew. CAT was a fledgling organization without much clout. Yet. “I’m prepared to be personally responsible for the debt incurred.” The money would come in next month.