Exacerbation 17: An Anti-hero’s Journey with MS

Begin

“It’s nearly eight,” says the thing perched on the television. “Get up.”

“It’s still dark,” I say, but she’s right — Trey’s gone to work already, the dogs are getting restless. There’s no point to staying in bed any longer. I know I’m not going to sleep.

“Sooner begun, sooner done,” says the thing that looks like a pterodactyl, a haystack of sharp-angled shadows whose name, I have decided, is Biscuits.

“Fuck you, Biscuits,” I say.

Extracting myself from bed is difficult — the right side of my body is largely paralyzed. I can move my right arm but not my right hand; I can move my right leg, but feeling stops below the knee. Just above the crook of my right elbow, deep in the pudgy pale meat of my arm, is a peripheral IV catheter that I am terrified of.

“I’m putting it here because the vein’s stronger,” said the nurse who put it in yesterday, “but you won’t be able to bend your arm much, or you’ll perforate.” He looked at my hand, curled and unmoving as a boiled shrimp. “Of course, you probably weren’t planning on being very active.”

“What happens if I perforate?” I asked, just to torture myself.

“I’ll have to come out and find somewhere else to put it,” he said. “That’ll be difficult.”

“How come?”

He looked at me kindly. “You’re all used up. Steroids blow your veins out,” he said, an image equally nauseating and hilarious. My veins are cheap condoms, exploded balloons. “Just try to be careful.”

I sit up in bed. The IV is wrapped in an ACE bandage and I peel the edge up to check. It looks all right — no more pink or painful than yesterday. Good. OK. I throw the sheets off and begin in earnest.

Standing and Walking

Pushing my left palm flat against the mattress, I twist at the waist to bring my legs over the edge of the bed. I straighten. While bracing my right shoulder against the headboard, I use my left hand to bring my right foot onto my left knee to check for debris (I sliced it open yesterday stepping on an errant tin can the dogs had been chewing — I didn’t realize until I saw the blood trail on the kitchen tile). All clear. I pull my right leg down straight. Pushing on the mattress with my left hand, I slide slowly over the edge of the bed until I am crouching with all my weight on my left leg. I straighten. I reach forward with my left arm and lean until I am touching the wall in front of me.

I have moved three feet. It has taken me nearly an hour.

Braced against the wall, I throw my right leg forward and slowly shift my weight onto it. I watch my right ankle for signs of stress or buckling. I step forward with my left leg and turn slightly to face the door. I shift my weight until it seems to be evenly distributed between both legs. I stand, legs wide apart, and slowly let go of the wall. I straighten. I grasp the doorknob with my left hand and turn it. Still holding the knob, I pull myself through the doorway. The dogs are waiting — they shimmy and howl. I lean against the wall to the right of the doorframe and pull the door closed behind me. I have moved three feet. It has taken me nearly an hour.

The Kitchen Table and What was Found There

Rubbing alcohol, a roll of ACE bandages, Band-Aids, a roll of paper towels, a prescription bottle of Ambien (mine), a prescription bottle of phenobarbital (not mine), a jar of peanut butter, an unpeeled banana with a Post-It note attached, a television remote control, a small paper bag, itself containing: twenty syringes of saline solution, twenty syringes of heparin, several packets of sterile cotton gauze, alcohol swabs, and a photocopied illustration of IV removal procedures that includes the line “Try not to cough or sneeze.”

Also: a small, spheroid object full of clear fluid. Plastic, yielding to the touch, it looks and feels like a toddler’s breast implant. What it actually is: 1000 mg. of Solu-Medrol, a corticosteroid whose potential side effects include insomnia, glaucoma, psychotic episodes, lethal infections, and something called aseptic necrosis, which sounds a GWAR b-side but is actually even grosser. I call it the juice.

Trey

Trey is an adult who works a real job that requires pants. I am an unemployable lunatic who lives on beer and candy, so I’m in grad school.

I had never planned on going to college in the first place. I just bumbled into some kind of standardized testing net in high school and got offered a bunch of scholarship money to run away from home and annoy people in a new town, something I’d been planning to do for free. When the MS got bad enough to disqualify me from the heavy-lifting jobs I love, a PhD in creative writing became, hilariously, the most lucrative work I could get. I know that because I tried everything else I could think of first. I’m a B cup in the most flattering light — Hooters isn’t ever calling me back.

I feel like a shaved bear here, the trailer-trashiest of imposters. My colleagues speak often about the literature that has shaped and sustained them, the stories by great masters that they read as children which taught them to be good citizens and decent people. I usually stay quiet during these conversations — I read a lot of Stephen King.

A sweet woman I was in a class with once had the shitty luck to be going through a divorce during the semester, and, as we’d all sit around chatting before class started, she’d mention the books that were helping her through that awful time: Anna Karenina, Madam Bovary, things by Jane Austen. I just smiled and nodded whenever she spoke — I have not read those books, and, in my own times of great distress and sadness, I tend not to reach for literature at all, but the loud dumb movies of my childhood. These are, for me, the narrative equivalent of comfort food, extremely stupid stories where cars blow up and things work out. I need very badly for things to work out, now. I have seen Rocky IV three dozen times.

…in my own times of great distress and sadness, I tend not to reach for literature at all, but the loud dumb movies of my childhood.

A Word on Ambien

It doesn’t work on me. Or, rather, it doesn’t work the way it’s supposed to — it doesn’t make me sleep. It does give me fantastic hallucinations that make my restless nights much more entertaining. The effect, though subtle, can be discerned by a careful observer.

Last night: “The compulsion to appear ‘tough on crime’ has driven candidates to support ever more harsh and, ultimately, indefensible penitentiary practices,” I said to Trey. We were getting pissed about the war. “Extended periods of solitary confinement are a clear violation not only of the 8th Amendment but of our basic humanity. Besides, they’re unnecessary. No one can escape my fondue forcefields.”

The line of demarcation, though visible to others, is one that I often cross unawares.

“You know about my forcefields!” I said. Trey smiled and patted my good arm, the one without the catheter. The one that could still feel. “Remember? I craft them from all my best memories of fondue and other cheese-based foods. That’s why I named my company Cheddar Endeavors! My forcefields are indestructible because I make them with my hands. Here, dude, you take one. I worry about you, now that all those dinosaurs have got loose.”

I took several Ambien last night. Reality still feels a little slippery. Now, looking at the bottle on the kitchen table, I’m tempted to take a few more and go watch a movie on the futon. Maybe Over the Top.

“Do the juice first,” says Biscuits. She’s lurking behind the fridge, eating God knows what. “Then you can be a junkie.”

“Biscuits,” I say. “You are the world’s biggest asshole.”

The Juice

Has to be refrigerated, but is supposed to be as close to body temperature as you can get it before you infuse — that’s why Trey put it out before he left for work, so that it would warm up. I should let it warm up more, but Biscuits, asshole or not, is right — more Ambien will make me useless for anything more intellectually demanding than deciphering the secret messages buried in Billy Squier lyrics. That’s important work, so best get my dose of the juice over with now. I drop into one of the lawn chairs we use as furniture and scootch up close to the table. Our house has an open floor plan, no walls between the kitchen and the living room and the kitchen-table-breakfast-area-nook-space I now occupy. The dogs lay in the living room, watching me intently — I am sitting in the place food comes from.

I unwrap the bandage from my arm. The catheter is still (praise God) in place, as is the thin plastic tubing attached to it. This tubing, roughly as-long-and-a-half as my arm and capped off with a small plastic port, is the conduit through which the juice will pass from the tiny fake boob into the catheter and, from there, my vein (which will, hopefully, blow neither out nor up). The boob itself has a short length of tubing, complete with tiny plastic clamp (which my tubing also has). I’m ready to roll, as long as I follow proper procedure.

Proper Procedure

Sanitize everything: hands, arms, table, tubing port, TV remote, banana. Rubbing alcohol is, what, 89 cents? Don’t be cheap. Spread it around. Let it dry. Ok, now the saline. Situate the syringe in the palm of your hand so that you can unscrew the cap with your thumb and index finger. Place the uncapped syringe between the first two fingers on your right hand like the most depressing cigarette ever. Grab the port at the end of your plastic tubing and screw it into the syringe. DO NOT TOUCH THE END OF THE PORT YOU STUPID FUCK. It has been sterilized with the finest alcohol 89 cents can buy. Do not, whatever you do, miscalculate your left hand strength and force the syringe out of your useless right hand and onto the floor, where it will be immediately snatched up by a dog (probably Trixie) who, unfazed by your shrieking, will promptly crack the syringe in half with its powerful jaws. If this happens, you will be forced to scream tearful curses at whatever god made you and begin again. Plus, the dinosaur behind the fridge will call you an idiot.

Syringe screwed in tight? Good. Now, use your thumb and index finger to pinch open the clamp on your plastic tubing. This will take several trembly attempts. Finally, you are ready to push the saline. DO NOT PUSH TOO HARD. Jackass. You will perforate and your arm will swell horribly and you will have to call the nurse (who was perfectly nice yet creepy in a way that’s hard to define, something about how he kept smiling and licking his lips while you gave him your medical history, and he smelled like lunchmeat. How? How do you begin to smell like lunchmeat ?) and then sit with your horribly swelling and painful arm until he comes back to the house, which will probably not be for hours and hours and hours. Push gently. Watch the bit of blood in your plastic tubing first turn pink and then disappear as the saline clears it away. Do not flinch, anticipating pain and perforation and other indignities. Stay cool. When the saline is done, begin again with the heparin. Then, and only then, are you ready for the juice.

The Juice (Revisited)

Once I have all ports connected, all lengths of tiny plastic tubing uncoiled, all clamps unclamped, I am ready to drop the boob into the palm of my useless right hand (my fingers twitch just once and are still) and sit quietly for an hour as the juice infuses. Unlike the syringes, the boob needs no push — it will leak its bounty slowly, gently, vein-preservingly, while I sit and watch the living room television (which has been thoughtfully turned in my direction, thank you Trey).

Heroes. They fixed things and people loved them. I wanted to be a hero quite badly, but of course I never was.

The television is tuned (I know before I even turn it on, because Trey loves me, God knows why) to some loud channel for men where explosions occur regularly. My home. I was a pudgy dumpling of a girl, charmlessly shy, and the loud shiny giants of Cobra and Bloodsport were everything that I wasn’t: capable, tough, smart, necessary. Heroes. They fixed things and people loved them. I wanted to be a hero quite badly, but of course I never was.

Unlike the saline and the heparin, which only cause a slight pinch as they go in, a slight feeling of odd underskin fullness, the juice is assertive, powerful. “GOOD MORNING!” it announces. “I’M HERE TO FUCK SHIT UP!” It feels dangerous because it is.

To feel one’s blood run cold is a cliché, but the experience retains all the impact that the phrase itself has lost. The juice goes in cold and stays cold in my body. Laying my left hand over my right arm, I can feel a thin line of cold snaking up towards my shoulder. After fifteen minutes, I begin to shiver.

Manswers

Manswers is not the best television show ever — it is the best THING ever, the single finest, dumbest achievement humankind will ever boast, and right now there is a marathon of it playing on my living room TV. Manswers is hosted by no one but could easily be hosted by one of the inarticulate manmountains of my childhood movies. I could see Dolph Lundgren telling me how to perform a vodka enema safely. “Try nat to caff ar sneeze.”

“WARNING!” screams the unseen announcer. “Having sex while flying a helicopter is illegal, dangerous, and could kill you.” Then he launches into a detailed explanation of how to have sex while flying a helicopter.

Manswers tackles life’s most important questions, such as “How big do tits need to be to crush a beer can?” and “What’s the fastest way to get drunk?” with eloquence and grace. Sitting at the table, exhausted, my right arm crawling with a slow cold poison, I feel these questions taking on terrible urgency. I have to find out which bass frequency causes maximum booty bounce — I will not know peace until I do.

“Show me your booty bounce,” I say to the dogs, and they all pop up off the floor, and they wiggle and cry.

The Un-Hookening

The juice boob shrinks as it infuses. By the time my hour is up, it looks sad and old, shriveled, wrinkled as a walnut (later, when Trey comes home and sees the deflated juice boob, he will tell me about the unnerving tendency of very old men in gym locker rooms to air dry their scrotums while looking you dead in the eye). The Un-Hookening is The Procedure in reverse, only now I’m shivering and sweating and my mouth tastes of dirty nickels. I take a sip of water, but it’s just as bitter as my own spit — everything will taste bitter and poisonous for the next few hours. It’s a side effect of the juice. My stomach is a tight hot ball.

“Why?” I whisper through clenched teeth as I try to pinch the clamp closed for a fourth time. “Why would you want to watch someone crush a beer can with her breasts? Is that even a thing?” I wish Dolph Lundgren were here to answer me.

Finally, I am done. My tubing is clamped and coiled gently next to the catheter under the bandage that I am doing a terrible job of re-wrapping around my arm (Trey will re-do it for me when he gets home in six hours). I gather, as best I can, the garbage on the table into a pile for later disposal. I look at the note on the banana. “Eat something!” it says, followed by x’s and o’s. I push the banana into the pile.

“Bear,” I say. He looks at me and I pat the side of my leg enticingly. “Come get your pill.”

Bear

Bear is the shortest and fattest of our three dogs, a Bassett-and-something we picked up with his brother (a Bassett-and-something-else) to keep Trixie company. He waddles over as I am wrestling the jar of peanut butter open.

“You just stay right there,” I say, and he does, because he knows food is coming, and the other dogs come over, and they, too, stay and stare, nostrils flaring.

The peanut butter is the easy one — it’s the pill bottle that I can’t get open. I need to push down on the cap and twist at the same time, and I can’t figure out how to do it with one hand. I put the bottle in my right hand and use my left to curl my right fingers around it, but as soon as I let go, they flop back open. I press the bottle hard against the table and twist, but the cap and bottle twist together. I can’t get it open.

Bear stares at me, wagging.

I need to start thinking in classier metaphors, damn it. See, this is where I’m fucking up. I need to start drawing comfort and strength from stories that have ennobled generations, not Timecop III.

I put the bottle between my stomach and the edge of the table and lean in hard, then grab the cap and push down. The bottle slips down and I pull it back up and lean in harder. I’m leaning like Arnold Swartzenegger in the beginning of Conan the Barbarian, when he’s pushing that giant manual wheat thresher thing. I like Barbarian but I love Destroyer, which has Grace Jones being impossibly gorgeous and also that freaky mirror room with —

No, no. This isn’t helping. I need to start thinking in classier metaphors, damn it. See, this is where I’m fucking up. I need to start drawing comfort and strength from stories that have ennobled generations, not Timecop III.

I am leaning like the prow of a ship — I am the goddess that will guide these Argonauts to their destination. These pills are the Golden Fleece that I need…to…rescue somebody, I think? Or please the gods? I know there’s a ship in there somewhere and I am the prow of that ship, sailing toward adventure, toward salvation. If not a hero, I can at least be a vessel for heroism. I have no greatness myself but I am a conduit, a lumpen meat string through which greatness travels to those who can actually use it. That’s a kind of heroism, right? To be the a tool in the hero’s arsenal. To give the hero what he needs. To be the prow.

I push and the bottle slips down to my lap. I am the shittiest prow ever.

Bear stares, wags.

“All right, that’s it,” I say, and put the bottle in my mouth.

My Teeth

Are terrible. I’m missing some — I’ve broken several.

Pills

I grip the bottle between my molars as tightly as I dare, the business end sticking out of my mouth salaciously — Manswers would be proud. I grab the cap and push, then twist and feel the cap loosen.

“Thank God,” I say, only it sounds like “hank garg” because I still have the bottle in my mouth. I pull it out and tongue my teeth for new cracks. Bear barks.

“Wait, fucker,” I say. I pinch a pill out of the bottle and dip it into the peanut butter, then into his mouth. Then I dip out a fingerful for Trixie and Colonel Mustard, because they are jealous of the treats Bear gets for being a spazz like me.

The dogs, satisfied, lumber away. I close the jar and the bottle and put them aside. I pick up my own bottle of pills, the Ambien. Because it is prescribed to me, a human spazz with useless hands and a tragic backstory, it has a simple screwtop lid, none of this push and twist bullshit. I thumb it open and shake two pills onto the tabletop and pop them into my mouth. Then I look at the label and see that two pills is my prescribed dose, so I shake out a third and eat that, too.

Many Things Accomplished, I Begin my Journey to the Futon

But first, I do something dumb, which is to stare at my right arm laying on the kitchen table and see if I can force myself to make a fist.

Dumb, because there’s no way. The Solu-Medrol, if it works at all, will work gradually, over the coming weeks and months, repressing inflammation enough for my nervous system (which I imagine to be staffed by microscopic versions of those tiny construction worker puppets on Fraggle Rock) to figure out some workarounds. How much function I’ll get back is a mystery — I may get back none at all.

Dumb also because I realize, even as I’m doing it, that this scene I’m creating (crippled person staring at useless appendage and attempting to render it useful through sheer force of will) is cribbed from any number of sources: TV miniseries, sad songs, angel-cluttered velvet paintings duct-taped to the walls of elderly relatives’ trailers (the walls themselves being, invariably, covered in wood paneling, thus precluding the use of nails), Very Special Episodes of Family Ties, Reader’s Digest articles, and, I swear, one of the Sweet Valley High books. Movies about feelings. The triumph of the human spirit. “Feel sorry for yourself all you like,” Biscuits says around a mouthful of paper scraps and bits of cooking foil, “but we both know it’s not your body that got crippled in that gondolier crash — it’s your HEART!”

I try to squeeze my hand and then I stop, ashamed of myself. Being crippled I can handle, but there’s no excuse for bad acting.

“Speaking of, you took those pills five minutes ago,” says Biscuits. She’s moved behind the stove, where the floorsweepings must be more interesting. “You’ve only got about ten more minutes until they hit. Hadn’t you better get your gimp ass in gear?”

She’s right — I’ll only get clumsier when the pills start working. “Dogs,” I say. “I’m being a tool. I don’t even deserve Manswers.” Sir Dolph Lundgren would be ashamed of me.

With my left hand braced on the table, I slowly stand up, my weight shifting gradually onto my left leg. I straighten. I throw my right leg in front of me and listen for the slapping sound that means my foot has hit the tile. I shift my weight onto my right leg. This is actually not so bad. If I can make it to the kitchen counter opposite (3 feet) I can push off into the hallway (2 feet) and ricochet to the futon and DVD player (7 feet, but plenty of furniture/walls to lean against on the way). “This is not going to be a problem,” is what I’m thinking as my right foot slips out from under me and I crash down hard to the floor.

What the Fuck Just Happened?

I lie on the floor, stunned. I have managed, by twisting hard to the left as I fell, to hit neither my head nor my IV catheter on the floor, but my left arm is a sparkling sleeve of pain (its bruises will ripen over the next week into a stormcloud landscape that is unspeakably metal). For a single nauseous second I think it’s broken, then I get my fingers to move. The dogs stand over me, snuffling. I sit up and grab my right leg, pull it towards me. On the bottom of my foot is a wet white pebble. I pick it off. It’s Bear’s pill.

“Tick tick,” says Biscuits.

He must have licked the peanut butter off and spit the pill out — he’s done it before. The pill is whole, just a bit slobbery.

“God damn it,” I say. “Bear, come get your pill.” I reach for his collar but he shuffles away.

“Bear, fucking get over here. Now,” I say, and the other dogs back away, too. All three stand in the living room, watching me, warily wagging.

I sigh. “Bear,” I sing. “I’m sorry I yelled. It’s all OK now. Who’s my Bear? Who’s my little Bear? Who’s my sausage?”

The dogs wag harder, but stay where they are.

“My Bear!” I cry. “Sausage Bear! King of Bears! Come here, my Bear! Come here, my Bear! Come on, Bear! Come on! Come on!”

Bear lays down on the floor and rolls onto his back.

“Eight minutes,” says Biscuits.

In Which I Wish I Mopped the Floor More Often

I grab the edge of the kitchen table and try to pull myself up, but my legs have talked it over and decided to call it a day. I cannot get them under myself so that I can stand, which means I’m going to have to crawl. I’m beginning to feel supremely loopy.

“You could scoot,” says Biscuits. “You’re already sitting up, kind of.”

Besides the bedrooms (which are floored with balding discount carpet I’d pull up if I weren’t a crippled monster), our floors are entirely tiled, which does indeed render scooting an option. Trixie and Colonel Mustard stand above me, sniffing my face, squirming with excitement. I am on the floor, a thrilling reversal of the usual canine reality in which I scold them from great heights as they chew chair legs, shoes, old bike tires, dead birds they’ve found in the yard, syringes of saline. It’s like doggy Bastille Day. Bear lies on his back, wagging — he wants his belly rubbed.

I look at the expanse of tiles between me and Bear and I’m done. No way am I doing this, no fucking way. I am not going to crawl or scoot or sashay or anything over to this stupid fucking dog who doesn’t even have enough fucking sense to eat his fucking pill so he won’t have a fucking seizure. Besides, it’s just one pill — surely he can miss just one.

“I didn’t realize you were a doctor,” says Biscuits, and if she were real, I would grab her by the neck and swing her like a baseball bat right into the wall. “I didn’t realize you could predict with such accuracy the precise serological concentrations of phenobarbital necessary to stave off agonizing and debilitating seizures in a sweet little dog who never hurt anybody and only wants to be loved. How nice for you! Oh, and six minutes.”

“Cunt,” I say, and begin scooting.

A Discovery

Scooting is much, much easier than walking, and faster. By pushing from behind with my left hand and pulling from the front with my left foot, I can get myself around the table in less than a minute. What scooting lacks in dignity it more than makes up for in efficiency, and it occurs to me besides that dignity is a luxury that I cannot at the moment afford, and also at least my ass is cleaning the floor.

What scooting lacks in dignity it more than makes up for in efficiency.

“German efficiency. It’s the only way to travel,” I say to Trixie and Colonel Mustard. They flank me, pacing themselves, and as we come into the living room where Bear waits, belly up, tail wagging, begging to be petted, I imagine the three of us in a movie, walking in windswept slow motion away from an explosion that we have, ourselves, created.

Bear Redux

I scoot up to Bear. He is writhing on the ground, manic for scratches and pets. I rub his belly with my fingers — I have the pill tucked against my palm with my thumb.

“Did you know,” says Biscuits, “that Billy Squier wrote his number one foxtrot hit ‘My Candelabra’ to urge Allied forces to conserve electricity during World War II?”

“We are not discussing this right now,” I say in syrup tones to keep the dogs calm. I feel like my eyeballs are sweating. “If you fuck this up for me,” I giggle, “I swear to God you fucking bitch…” I put my face to Bear’s stomach and blow a raspberry. Colonel Mustard nudges my back.

“Did you know,” whispers Biscuits from the ceiling fan slowly spinning, “that ‘The Stroke’ was originally a nine hour long opera for the Manswers episode about Helen Keller? In Braille?”

I don’t have the peanut butter with me, so I’m going to have to toss the pill down Bear’s throat and hold his snout closed until he swallows. He is not a fan of this maneuver, which I have never attempted one-handed.

“What a Bear,” I say, rubbing his belly with my fingers. I lean over and manage to throw my right leg across him like a heavy rope of sausages. “He’s a good Bear.” I watch his mouth.

He yawns and I pitch the pill in, then grab his snout. Immediately he begins to thrash, trying to get away. I hold on, but what if he chokes? I let him turn onto his side, dragging me with him, getting me a mouthful of his clingy fur. The other dogs prance and bark — they want to play, too.

“Swallow, Goddamnit,” I say, as Bear tosses his head back and forth. I watch his throat. I am shaking with the effort to stay upright. My foot flaps around like a dying fish. I cannot keep my grip much longer. Trixie licks my ear and sneezes.

“Please,” I say. My own throat is tightening and I realize that I am stupidly close to tears. I am a thirty-two year old woman with one working hand and an earful of dogsnot, lying on the floor, wrestling with an epileptic midget. I’m a sex tape away from being Tonya Harding.

“Please, please, just swallow.” Bear thrashes. I watch his throat. The other dogs jump around us. Biscuits whispers that Billy Squire was the original lead in Commando. My shoulder starts to cramp. Bear swallows. I let go and he jumps to his feet.

“Bear!” I say. “Let me see!” He waddles over and I pry his snout open briefly with two fingers. No pill. I lay back on the floor, triumphant.

“Celebrate later,” says Biscuits. “You’ve still got to get to the futon.” She’s right again, the bitch — arm wrestling tournaments don’t win themselves. But I’m so tired of going by the book. What would I do if I could do anything? What would an invincible giant with two working legs and no need for nuance do?

“Fuck the futon,” I say. “Freedom from furniture is why Billy fought in all six World Wars. That, and pussy.”

The living room tile is dirty and smooth and cool; I turn onto my left side and press my ear against it. Bear lies down next to me, a furry log at my stomach. Colonel lies against my back — Trixie curls at my feet. They’re dogs and they do what dogs do: they fall asleep. And incredibly, for a few minutes, so do I.