Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (7 page)

ONE MORNING YOU ASK
your mother about the profusion of greeting cards in your room. She reminds you that Paul, your colleague from work, has sent you a card every single day you were hospitalized.

You ask her to bring the pile of cards over to you. You look through them. They are all dated. They are all different. He has never duplicated a card. Some days, you realize, you’ve received more than one card from him. He will have to start making his own cards soon, you think, because before too long, he will have used up every get-well card that ever existed.

You choose one of the cards at random and open it up. Paul has written on it, “Every day aboveground is extra.”

YOU DECIDE THAT APPEARANCE
is important for someone who is overcoming a debilitation. Appearance sets your frame of mind.

You decide to feel good about yourself. You make sure you put your makeup on every day. Some of the staff think it’s funny. Your left side is completely paralyzed, your arm hangs like a dead tree limb after a storm, but there you are, holding cosmetic lids with your mouth. You put eye makeup and lipstick on every morning after your shower.

Putting on lipstick or eyeliner on the left side of your face usually produces a look that reminds you of a five-year-old girl getting caught playing with Mommy’s makeup. Your face is numb and there isn’t any muscle tone. It’s like putting on lipstick after a few shots of novocaine. What a mess.

You are going to do whatever it takes to feel good. If that means tricking yourself by using makeup, so be it. Whenever you have felt ugly in your life, you have always had an ugly day. Now you are putting on your makeup each day as though you were going onstage. You are acting, and the stage is life. You have had good days and bad days. You know that much. A positive appearance, you have decided, will help with the attitude.

Putting on makeup also gives you the chance to practice facial exercises. This is important, because the left side of your face is flaccid.

Paul teases you about your cosmetics: “She says, ‘Oh, I’m paralyzed, can’t do a damn thing.’ But hand her a cosmetics bag and she’s off and running!”

He’s right, of course. Makeup motivates you. You realize that, as part of your cosmetics routine, you would pay very close attention to the people who speak to you.

Whenever a nurse would talk, you’d look very closely at her face, and realize that her whole face, not just her mouth, was speaking. Her eyebrows, her eyes, her forehead—all moving in harmony, all working together in a seamless way that most people hardly notice, take for granted, and engage in hundreds of times a day without a thought.

When you demand a mirror and speak into it, you see that your right eye squints and is expressive while the left eye remains wide open, without any movement. The right eyebrow moves up and down; the left eyebrow is flatlined. The left side of the mouth is paralyzed and the tongue and gums on that side are numb. When the face in the mirror speaks, half of it is saying, “I’m not really here.” It looks disturbing.

So after the makeup you always exercise in front of the little mirror on your bed tray. You work on forming words, on smiling, and on eye expression.

“Mirror, mirror on the wall,” you hear yourself say to the little mirror one morning, “who’s the toughest of them all?”

As if in response, the madwoman down the hall wails a long howl, then starts to sob uncontrollably.

WHEN YOU WERE GROWING UP
in a household of eight brothers (and two male dogs!), you often joked to your mom that there was too much testosterone in the house and that you needed to inject more estrogen in the atmosphere. Mom would roll her eyes and say, “You’re impossible. Where did you come from?” Now, on a visit to the hospital, your brother Joe reminisces about when you were young and wanted to prove that you were as tough as the boys.

“You sat yourself down in the kitchen,” Joe says, “put your elbow on the table, and said, ‘Okay, wimps, who wants to be embarrassed by being beaten in arm wrestling by a girl?’ And you proceeded to beat two brothers—and came close to beating me! You’re strong, Julia. You’re going to beat this. Only difference is, now you’re wrestling with yourself.”

THERE’S A KNOCK ON YOUR DOOR
and Mom opens it. It’s Berkeley, clutching a life-size cardboard figure of Babe Ruth. It’s the same Babe you had purchased for the company kickoff meeting…except with a few changes.

This Babe is adorned with tacky dangling earrings, a phone headset, a company logo baseball cap, and (what your mom notices first) a bulging jockstrap. There are signatures from everyone in the department. Berkeley explains that the earrings are because you love jewels, the headset represents what your department does, and the jock strap is a candy holder—for a vast store of Hershey’s Kisses. You always kept a chocolate jar on your desk for anyone who needed a chocolate fix—usually Berkeley. Now he’s returning the favor.

“How did you manage to carry it across the parking lot and up the elevator?” you ask, laughing. “People must have thought you were whacked. Did anyone say anything to you?”

“No, but a lot of people stared. I think they were trying to figure it out. Could I have a piece of chocolate?”

“Sure, help yourself. Maybe people think you’re bringing it to a Red Sox player who’s recuperating. You know—that whole Boston Curse thing. I can’t wait to start offering kisses to the nurses. If they look perplexed, I’ll point to the jockstrap.”

You love the whole idea—and you love Berkeley for making you laugh.

“Put Babe in the corner so when a nurse comes in, she’ll think there’s someone lurking in the room. I can’t wait for the reaction.”

He does. He sits on the side of the bed. You wait there together for your first victim.

“Thanks, Berkeley,” you say. “Now, with the Babe on hand, I’ll always have company!”

Kisses in a jockstrap—pretty perverted. But I wouldn’t expect anything else from him. People are mortified when they walk in the room. It’s the goof that keeps on goofing.

EVERYTHING IS ABNORMAL
after your stroke, but your period, it turns out, is still as regular as clockwork. Lucky you.

The huge black nurse is cleaning you up. She has just placed a call requesting a diaper. Your heart freezes.

So it’s come to this.

She stands and throws a now-crimson washcloth in the plastic hamper.

“Do me a favor,” you say. “Take a look at my chart. Tell me how old I am.”

She stops in place, considers you for a moment, then goes to your chart.

“It says here you’re thirty-seven, honey.”

“That’s what I thought. It doesn’t say I’m eighty-four, does it?”

“No, dear—thirty-seven.”

“And it definitely doesn’t say that I’m six fucking months old, does it?”

She makes a little pout and squints at you.

“Yes, I’m thirty-seven years old. And I’m not going to wear a diaper. Please get me tampons from supplies.”

“This is all the hospital has.”

“Are you serious? Is this some kind of joke you people play with the folks on the head-case floor? What the hell do other women do when they menstruate while they’re in the hospital?”

“The hospital just doesn’t supply tampons. We don’t have napkins either.”

“Well, I’m not in a coma. I’m coherent. I may lose track of time, and I may not be able to read very well, but I’m
not
wearing a fucking diaper, and I guarantee you anybody who tries to make me wear one is going to have a bad day. Please call my husband and ask him to bring me tampons. He’ll help me. You won’t have to do a thing.”

She does.

ON THE WEEKEND,
they suggest that you get out for a “walk” with Jim. This means dressing and being wheeled outside. This is part of your therapy, to get dressed with minimal assistance.

It’s a real challenge. You have to become Houdini escaping the straitjacket. You have never put on socks one-handed, and putting them on a foot you can’t raise or feel is a test. Your bra has hooks, which are impossible for you to do yourself, so the aide helps. Then the shirt goes over your head with your dead arm threaded through the sleeve. Your legs are threaded into loose pants.

Now Jim takes over from the aide. He wraps a scarf around your head turban style, and the aide wheels you out the door and into the elevator, and you and Jim go outside for your “walk.”

But there’s really no walking involved. You go outside to sit by the water and watch the ducks. Jim rests his hands on your shoulders. Tears are flowing down your cheeks. Your makeup is probably ruined now. Doesn’t matter.

Jim doesn’t say anything, you don’t say anything, but the not saying anything says something. Something about being in the wheelchair staring at the innocent ducks with the hospital building looming over you both. The water reflects the ducks, two sets of them, up and down, ducks that didn’t do a damned thing to anyone. You wonder what the hell you are doing in this dream. You wonder when someone is going to wake you.

YOU CAN’T STOP TALKING
about having your nails painted.

Mom doesn’t understand and asks, “Why are you so obsessed with your nails?” You realize she’s looking at you from her side; her big picture didn’t include fingernails. But it seems perfectly logical to you.

“It’s the only thing I have control over right now,” you explain. “I’m constantly staring at this lifeless hand, so it may as well look nice. I’ll take the bubble gum pink polish please.”

James locates a nail salon close to the rehab hospital. They don’t offer services outside the salon, but Jim insists and money talks. Once Jim agrees to pay the highway robbery fee, it’s scheduled.

You: an impaired body, paralyzed left side with a face that sags, making it difficult to form clear words.

The manicurist: a young Vietnamese girl who can’t speak a word of English. She timidly enters the room with her tiny suitcase of manicure tools and a small foot tub.

She looks terrified.

Ever so mindful of your recovery goals, you pick a bright red nail polish, thinking the bright shade will help you keep track of your left hand. She starts painting the left hand first, but it won’t lie flat. The fingers curl and become gnarly and clawlike. Every time she tries to paint, the evil hand curls and she lets fly a torrent of Vietnamese words. If she tries forcing the hand flat, it slides off the table and dangles on the side of the wheelchair.

She has on a yellow T-shirt. When she finishes the nails, it looks like she was the loser in a bloody battle.

Once the polish is applied, you stand up. Mom is lying on the bed reading a magazine. She looks up, astonished, and says, “What are you doing?”

She means, “Why are you standing up? You can’t do that.”

You thought you would just get up and walk over to the fan to dry the polish. So you did. Suddenly brought back to reality, you fall back into the wheelchair and slump over the young Vietnamese girl. Mom struggles with her to get you into a sitting position while at the same time wrestling with the unstable wheelchair.

Pretty weird mind games. To think you can stand and then do it—but once you’re reminded of your paralysis, to collapse.

The Vietnamese manicurist has had enough. She gathers her beauty supplies and bolts from the room, leaving her jacket and a few other items. Mom has to chase after her to give her the things she’s left behind.

YOUR DECISION TO REFUSE
more chemotherapy treatment in the rehab hospital made Dr. Jerk madder than a hornet on the inside of a window. He sent his friend and associate Dr. Panic in to see you, in an attempt to convince you.

Dr. Panic is hovering over your bed now clutching a large manila envelope.

“Hi, I’m Dr. Panic. Dr. Jerk asked me to review these CAT scans and angiograms. I haven’t yet, but what you have is incurable. You may die from this disease if it goes untreated.”

You’re caught off guard. You had been relaxing, watching Judge Judy with your mother after a long day of therapies. Judge Judy has become your secret addiction in the rehab hospital. She puts everyone in his place. Before this conversation, you had decided that you wanted to become Judge Judy. Setting the rules and enforcing them.

Now you have to put Judge Judy in the background. Someone in a white coat, with authority, is saying you will die if you don’t do as he says.

Die.

The word has black tentacles. You burst into tears.

Dr. Panic leaves and sends for the on-staff neurologist. She steps into your room and asks how you’re feeling.

In between sobs, you say, “How am I supposed to feel? He just told me I’m going to die. I know we’re all going to die, it’s inevitable, but I’m not ready. I still have so many things to do. I need to raise my little boy. The way everyone keeps talking, I feel like I can’t even cry, because I’m afraid my head may explode.”

She stares at you intently but says nothing to comfort you. Her only response is to shrug her shoulders. She vanishes as suddenly as she appeared.

The phone is ringing. You are crying hard. Mom has witnessed the whole exchange and is fighting back tears, too. She answers the phone and hands it to you.

“It’s your brother. John wants to talk with you.”

“Hi, Johnny, I’m a little upset, I’ve just been told I’m going to die.” You say it all between sobs.

“Okay, listen to me, Julia.” John tends to get animated when he’s trying to convince you. That’s why he makes a great trial lawyer.

“You’re upset, but LISTEN TO ME, I’M COMING OVER THERE RIGHT NOW TO UN-UPSET YOU. I’LL BE RIGHT THERE!” he screams into the phone to get his point across. You can tell he’s mad—or is that fear in his voice?

You hang up the phone and continue crying with Mom. “I feel like I can’t blow my nose too hard, or cry, or laugh. Any strain and my head is liable to go.”

John must have used some kind of superhero method to arrive as quickly as he does. He is pacing by your bed.

“YOU ARE NOT GOING TO DIE,” he continues, as though he had never put down the phone. “We’re going to find out what happened and how to get well. You’re not going anywhere but home to recover. You’re a fighter, Julia. You’re going to beat this. You’re tough. Do you hear me? You are
not
going to die. How did that asshole doctor come to his conclusion?”

“He said he consulted with Dr. Jerk. The surprising thing is, he has not reviewed my films.”

“Obviously, these are not the right doctors to listen to. Stick with Dr. Neuro—he hasn’t said you’re going to die.”

“Yeah, but he hasn’t exactly said I’m going to live, either. Nobody will say I’m going to live.”

“But you feel secure with Dr. Neuro, right?”

“Yes.”

“Then why don’t you call him, for Christ’s sake?”

Johnny always has a way of calming you down. Even when he’s hollering at you.

YOU CALL DR. NEURO,
right then and there. By the end of the call things are not quite so black and white. You’re in one piece again, you’re so grateful to Johnny that you make him give you a long hug, and you’re wondering whether you should have given a Judge Judy response during that encounter with Dr. Panic. You imagine you’re in her chair peering down at this nobody doctor: “Well, I don’t believe you. Case closed. You’re dismissed.”