You could have died. That wasn’t supposed to happen, not from multiple sclerosis. Stripped veins. Adrenal gland. Kidney problems. All from a miscommunication. It’s aiming to kill you.
* * *
THEY LET ME OUT after two more days. For my last day of prednisolone I bypassed the infusion center and drove to my internist instead. I trusted my internist. He specialized in HIV. His patients called Roy, his nurse, the vein whisperer.
I had to wait half an hour in the general waiting room. A young woman with narrow hips, arm in a sling, and a jawline slightly swollen under expert makeup sat in the corner looking defiant and defeated at the same time. My cane, the light bandage over the cannula, and the heavy bandage on the other arm reassured her; she relaxed a bit. I crossed one ankle over the other in the least threatening pose I knew.
She saw me looking at her arm and her chin went up.
“I hope you killed him,” I said. “Or her.”
“Fucker grabbed my wrist.”
If I didn’t have a cannula in one arm and heavy bandages on the other, I could have shown her two ways to break a wrist grab without even standing up. Before I’d figured out how to broach the topic, Roy stuck his head through the door. “Mara,” he said. “You’re up.”
It was a bright room with warm prints, but as soon as he tore open the surgical wipe and the room filled with the scent of alcohol, none of the warmth mattered. The world narrowed down to my arm, the plastic embedded in it, the liquids they would soon force inside the swollen vein.
Roy wiped the cannula valve down, then inserted a syringe into the lock and started to push the saline. I winced.
“Bad?”
I nodded, afraid to speak. Superstitious behavior. If I didn’t speak, I wouldn’t really be here. This would not really be happening.
He pushed some more. I hissed. And this was only saline, to rinse the line through. The first of three lots of liquid. He slid the needle out of the lock, touched my vein gently. “The vein’s leaking. We’ll have to reinsert somewhere else.”
I went away inside my head, then. Taking out an IV was just as vile as putting one in. More alcohol smells. Numbing sprays. Cold wipes. Pain.
No. No pain. I’m not here. It doesn’t hurt.
Relaxation, that was the key. One PWA I’d counseled could not take opiates, and he told me once about a pain therapist he swore by. It was all about relaxation, he said. Deep breaths. Open those veins. The Tecfidera nerve pain had scattered my mind to the winds and made it impossible to try.
It did not make any difference. Should have got stoned, but then I’d never have got here. More pain. More. Was this what Doug had felt? I swore, and the room snapped back into focus.
“Damn, Mara, I know that vein’s there somewhere. You’re being so brave. If you can just stand for one more try, I’m sure we’ll get it.”
Why was it always “we” when they were hurting you? “No,” I said.
“Excuse me?”
“No. I can’t do this.” I was getting tired of saying that.
“But—”
“No.”
“I’ll have to get the doctor.”
The ultimate threat: Doctor will be disappointed. “So get him.”
The doctor listened to me, looked at my veins, and frowned.
“I will not do this anymore. It’s been more than a week. Do you know what it’s like? I hate needles. I’ve always hated needles. I hate anyone touching my veins. If I even get a bruise on the inside of my leg or arm near a vein, I nearly faint. It’s … Do you have any phobias?”
They must have drilled into them at medical school to never share anything personal. Remain aloof, impartial, untouched by human concerns. I kept my eyes fixed on his. He capitulated. “Spiders. The ones big enough to have knees.”
I nodded at the bio waste bin inside which the bloody cannula dripped like a fanged predator. “Having that thing in my arm, inside me, inside my vein, for days, having to worry about it slipping, breaking me open—yes, I know it’s designed not to do that, but this stuff isn’t rational. Asking me for another IV is like asking you to open your mouth to let me drop in a tarantula.” He swallowed convulsively. “I can’t do it anymore.”
He turned, a little pale, to Roy. “Would you get some ice?” Back to me. “I want you to lie down for a while. I’m going to make a phone call.”
He left the room. His office was next door. Roy helped me lie down. I started to shake. He wrapped my arms in bandages and icy gel packs in alternate layers. I swallowed and swallowed, trying not to throw up.
Roy wrapped me in a blanket. “It’s a bit of a shock reaction. Just rest.” He cocked his head. “He sounds angry.”
“The doctor?”
I must have sounded anxious. He patted my hand. “Not at you. At your neurologist. You shouldn’t have been on this so long.”
The wall muffled the phone conversation, but it got louder, then stopped. A minute later, the internist came back in. He was slightly flushed, and bright with that adrenaline glow people get after a successful argument. He started tapping out a prescription.
“I’m going to taper you orally on prednisone for a few weeks.”
He said something else but my throat was bobbing and squeezing with relief. No more needles.
Hello? Hello, are you there?
* * *
JUNE. Hotter. The roar of the air-conditioning woke me in the middle of the night and often I didn’t bother trying to get back to sleep. My dreams were full of shadows reaching for my throat, and now the weed just seemed to make them worse, so when it ran out I didn’t ask Josh for more. After one particularly evil dream I woke up having difficulty swallowing. The yellow night-light in the bathroom showed what might be faint bruises around my throat.
Even though I was tapering, the second week on prednisone was worse than the first in terms of restlessness. I became easily irritated. I spent my time on Twitter, talking, sometimes arguing.
It was one of those nights, at four in the morning, that I heard about the robbery.
< … smashed up everything> said @SapphoCrip.
I didn’t respond. I was clicking through to @SapphoCrip’s profile. A link to Facebook: Lory Hutchins, in La Crosse.
Smashed and put back in the carton. It sounded like the kind of thing a torturer would do.
A month after Doug, only @SapphoCrip had been lucky enough to be out of the house. I do not believe in coincidence; I believe in data. I pulled up the CAT and PAWS mailing lists, hoping I was being foolish, that the prednisone was making me paranoid. But there she was, on both: L. Hutchins, La Crosse.
The CAT mailing list: a perfect tool for separating out those who would not be able to defend themselves, and it had been my idea. I had painted targets on our foreheads.
La Crosse. Less than two hundred miles from Minneapolis. Two hundred miles southeast from Doug’s house. Two hundred miles closer to Atlanta.
* * *
AT NINE THE NEXT MORNING, shying at shadows, and jumping when Rip’s name tag clinked against her bowl, I called the police. Captain Hernandez would not take my call. I asked his assistant to tell him I was reporting a potential hate crime. She passed me to a detective called Michaels who sounded bored and not at all interested in Doug, or Lory, or my mailing lists. “Yes,” he said, “um-hm. I’ll make a note.” And I knew that as soon as I put the phone down he would wad up his note and toss it in the trash.
I tried the chief’s personal number, left a message.
I called the Minnesota State Patrol and got transferred to their tip line staffed by a tired-sounding trooper. I explained about the mailing list, and Doug. “We’ll look into that,” she sai
d.
“Please call me back and let me know.”
“We have hundreds of leads to follow, ma’am.”
“This one is important.”
“I’m sure it is, ma’am.”
I told her about Lory Hutchins, and the vials.
“I’ll make a note of that.”
It was exactly the same tone as Michaels’s. “This is important. They both have MS. No one is paying attention—”
“And do you have MS, ma’am?”
“What’s that got to do with it? Oh, I see. You think I’m a paranoid cripple. You think that just because I have MS I’m not worth paying attention to. You think MS will kill me anyway so why bother.”
“No, ma’am—”
“Well, fuck you and the patrol car you rode in on. Just fuck you!”
I called Christopher. “Stop selling the mailing lists.”
“Just like that?”
“Yes. I’ll explain later. Meanwhile, send me the contact info of every organization who has taken a list. As soon as you can, Christopher. Please.” Now, I wanted to shout at him. Do it now! I could see a piece of paper, gray with burger grease, crumpled in the fist of a man as he scanned the names, planned their route …
The list materialized in Dropbox ten minutes later. Most of them were phone numbers only. I tucked in my earbuds and clicked on the first.
“My name is Mara Tagarelli. I’m on your mailing list. I want to be taken off.”
“Your address, ma’am?” I told her. Faint ticking of computer keys. “Ma’am? I’ve removed it for you. If you’re still getting mail after thirty days, please call. Thank you for calling and have a—”
“Wait. What do you mean, thirty days?”
“Ma’am, I’ve taken it out of the master list but there may be labels already in process.”
“I want them stopped.”
“I’m not sure—”
“I want them stopped. Not next week, or next month, but now. Today. If I get one piece of junk in my mailbox after next week, you’ll be talking to my attorney.”
“I don’t have that authority.”
“Then put me through to someone who does.”
Dead air, followed by a few seconds of hold music. “This is Laetitia, floor supervisor. How can I help you?”
So I told Laetitia what I needed, again, and she explained that it might not be possible. I told her it better be possible or I would sue her and her company into the center of the sun. Before she could respond to that I told her I wanted an email address, too; that I would be sending a request for confirmation in writing of the action they had taken. Finally she allowed that, yes, she could do it, but her tone of voice let me know it was a terrible inconvenience.
I clicked off. Hundreds more like that to go. I took my lunchtime dose of prednisone, filled a glass with iced tea, and began. Halfway down the list my skin felt strange, hot and cold at the same time like a freezer burn. I could not keep still. I refilled the iced tea and started on the rest. Work, endless work. Climb up the bucket. Fall to the bottom. Climb again. Again, and again. I gritted my teeth.
Then they were done. I pulled out the earbuds. Checked my email. And then I couldn’t put it off any longer.
I started a message to all CAT channels on Slack.
Rip slapped through the cat flap. I reread the message. Not right. I erased it. Rip jumped up on the table. I picked her up and set her on the floor. She jumped up again.
“In a minute.” I picked her up and dropped her on the floor.
She jumped up again and I bent her aside with one arm while I typed.
She patted my face. “Not now, Rip.” I elbowed her off the table.
Still not right. I erased the message again. I should probably talk to the task force first. The mailing list had been a group decision, a joint recommendation to the membership. But it had been my idea. My fault.
Rip leapt up onto the keyboard. “Get the fuck off.” I tossed her to the floor where she landed with a thump. Began again.
I’m sorry, I’m sorry. Rip leapt up once again, butted my arm, and when I did not pay attention, hooked her paw on the rim of the tea glass, pulled, and watched it fall, end over end, to smash in a shower of ice and glass.
I shot out of my chair, stood barefoot on a piece of ice, and bellowed. “Bastard!” Rip fled.
I hurled my chair at the wall. The photo of smiling, dewy me fell and broke. I kicked the table leg, then kicked it again, this time with hard focus. This was better than the punchbag. The punchbag did not crack and splinter and list to the side.
It was like watching a movie: someone else dropping their disguise as a civilized human being and defeating their governors. Someone else throwing, kicking, breaking. Jamming on shoes, throwing her stick in the car, grinning ferociously at her reflection in the rearview mirror. It felt good to be off leash. It felt free. I slammed into drive and roared out onto the road, texting with one hand and hauling the car around slow-poke vehicles with the other en route to the co-working space.
Some asshole without a blue placard had parked their Audi in the only crip parking space. I parked right against their driver’s-side door so they wouldn’t be able to open it.
Friday happy hour, sponsored by a wine distributor trying to break into the Atlanta market. Christopher said he would be there until seven. I pushed my way to the counter serving as a bar, grabbed a Merlot in a plastic cup and drank it in one swallow. “That’s fucking nasty,” I said to the woman who poured it, then picked up a cup of white wine and headed into the scrum. I used my stick to accidentally catch people on the Achilles tendon, where I knew it would hurt. “Sorry,” I said, with that blithe cheer that meant I wasn’t, and didn’t give a shit who knew.
Christopher was sitting on the red sofa in the corner, holding court with two young men and a woman trying too hard to be one of the guys. When he said, “Mara!” they looked up at me with eyes like glazed fruit.
I leaned on my stick and swallowed down the white. Thin and so sweet I could not tell what variety it was meant to be. “Christ,” I said.
Christopher just reached down, lifted a bottle tucked away by his feet, and raised his eyebrows. I held out the empty cup.
I fixed my gaze on one of the boy fruit. “I need to sit.”
“Oh,” he said.
“So either slide over or slide off somewhere else.”
“Uh…”
“I’m not fucking kidding.”
He stalked off, offended.
“You had to pick the pretty one,” Christopher said.
“You’ll find another.”
“You can be such an ass,” he said, but without heat. “So tell me about the mailing-list panic.”
But the hum of humanity was what I needed, not work, not thinking about MS in me like corruption. “Just give me more wine.”
The wine was crap but it was strong and it went down fast. It turned out that the man now fondling the knee of the woman also had a bottle. I noticed he poured more generously for her than anyone else, and that she was beginning to look a little glassy.
“You okay?” I said.
“Of course she is,” her companion said.
“Was I talking to you?”
“M’okay,” the woman said.
“You probably shouldn’t drink any more. Do you know this man?”
“Oh, for fuck’s sake,” the man said. “Chris, who is this auntie?”
Christopher lifted his hands as though to say, Hey, not my problem.
And that was when the PA crackled to life. “A blue Jeep is blocking access to another member’s vehicle. Will the driver of the blue Jeep move their vehicle immediately. They are blocking another guest’s access.”
Christopher looked at me.
“Now they know how it feels.�
��
He closed his eyes. The man on the other sofa helped the woman to her feet.
“Hey,” I said. And tried to stand up, but succeeded only in tipping myself half off the sofa. Huh. “Hey!”
A hand on my arm. Without thinking, I broke the grip and bent the hand back against its forearm.
“Aaaargh!!” Christopher, shaking out his wrist.
I struggled and stood, swaying. But the man was already steering the drunk woman through the crowd.
Would the driver of the blue Jeep—
“… listen to me.” He let go so abruptly I nearly fell over. “Mara. They’re married. They’re married. To each other.”
—towed. Repeat, the driver of the blue Jeep should move it in the next five minutes or it will be towed.
“Also, that really hurt.”
I was seeing double. I had never seen double before. Was this another MS thing?
—last chance. Last chance to move—
I swayed. The prednisone rage was ebbing. “Christopher…” I fumbled in my jacket pocket.
He sighed and held out his hand. I dropped the key fob in it and wove my way to the bathroom.
It was one of those with a code. I couldn’t remember it, then I could remember it but it took three tries to get right. I had to squint. I did not understand how I’d got so drunk so fast.
There were three stalls. I lurched to the middle one—the middle one always had fewer germs, there were data—dropped my stick with a clatter, partly under the divider, and fell onto the seat with a sifting thump, like a sack of grain. I sat with my pants around my ankles, listing toward the wall, and shivered. The AC was set to Arctic. I breathed. After a while it was easier to sit upright. Heat. That might explain it: I’d got too hot. Too much crap wine, too, maybe, but mainly hot.
After five minutes the cool air worked magic. Sitting up straight was easy, and I no longer saw double. I took several deep breaths. Another five minutes and I could text Christopher to meet me in the parking lot. No reason to face all those people.
A shadow fell at the bottom of my stall door, like someone peering to see if the stall was occupied. Then the door next to mine creaked. Great, an audience, just what I needed. Time to go.
So Lucky Page 9
