Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (10 page)

YOU ARE IN A HOSPITAL BED.
Again. The halls are empty and quiet. Must be a weekend or late at night. Or both.

A young male Asian nurse is by your side, attempting to draw blood. You can’t believe the pain; he’s missing the vein, he’s using a heavy-gauge needle, and he’s obviously inexperienced with difficult veins, which, you have learned in recent months, you have. He seems to imagine that you are a bolt of fabric being pinned into clothing.

“What time is it?” you ask. There’s no window in this room.

“A little after two in the morning,” he says.

“Is there another nurse on call?”

He looks up from your arm and stares at you.

“Why?”

“Just tell me whether there’s another nurse available, okay?”

Silence.

“I guess so.”

You look him in the eye. “You have to stop. I’m sorry, but I need you to get the most experienced phlebotomist you can. You’re not having much success with this blood draw, and you’re really hurting me.”

You don’t know why you feel you have to apologize for his ineptitude, but it seems to make your request a little nicer.

JIM IS CONCERNED
about your separation from Rory. He goes to great lengths to make sure Rory sees you regularly. He makes attempts to keep it light for Rory by bringing in books for you to read to him in your bed.

“Look, Mommy, I brought you Elmo to keep you company so you won’t be lonely,” Rory exclaims excitedly as he enters your room. “He has a boo-boo on his head too and he needs to stay in the hospital with you until you both get better.”

You eye Elmo’s red, furry, limp body. There’s a Band-Aid on his head. It makes your eyes well up, and you smile at the same time.

“Well, we’re both going to get better real soon. What book did you bring for me to read to you?”

He hands you
Bob the Builder
and Jim props him up next to you in bed. You have difficulty balancing the book with one hand, and you can’t turn the pages.

“Rory, can you help read the book with me and turn the pages?”

“I don’t want to read my books here,” he says. “I want you to read them to me at home.”

You glance at Jim, whose face is stony and sad.

“Right now,” you say, “we get to read stories in this special bed together—but only for a little while. Look at this magical bed, the buttons make it go up and down.” You show him the buttons and his attention is diverted to pushing the head up and the feet down. He’s thrilled with the buttons, and delights in the ride he’s giving you.

MOM TELLS YOU
that Rory has made a habit of asking which hospital he’ll be going to today, and it makes you feel helpless and sad. On one visit Rory notices all the construction activity happening around the hospital, shakes his head, and matter-of-factly states, “There’s sure lots of fuktion going on around here.”

It seems accurate enough.

BACK WHEN YOU WERE WORKING FULL-TIME,
you felt guilty shuffling him off to your friend Berbie’s or your mom’s. You’d have a Friday-night date night where you and he would have a burger in the food court and then go for a ride on the merry-go-round in the pavilion. Now you have a completely different set of guilty feelings. Back then, you could have changed the workaholic behavior, but you didn’t. Now there seems to be nothing at all you can do to improve the time you spend with him.

WHAT IS THAT
thing behind the wall? That thing is beautiful, but what does it do, and how does it make the wall shudder that way?

Window shut. Night dark. The ward is quiet, humming at you softly. The wall vibrates and breathes in and out and wisps into a fog and then behind it are two eyes.

Oh, right. They gave you something for sleeping.

The wall is completely gone.

Edie is looking at you, but it’s hard to say when or why or where you are, how old either of you are. She must be older than you, but it’s hard to tell now, looking at her. Just Edie’s eyes, that’s all you see.

You remember when Edie told you, “It will be okay, honey,” when she picked you up from the playground when you fell as a little girl and your knee was suddenly shiny with blood and you cried out.

You remember liking when Edie said “honey.” She said it to you a lot.

You remember when Edie said, “I call you honey because I love you.”

YOU GET FRIENDLY
with all the aides at rehab and start lobbying them to put you first on the shower list.

There is a good reason for this politicking. If you are not one of the first few to be showered, there is inevitably a huge backup; sometimes the shower wheelchair is in use and when your turn comes you have to use a potty chair. The shower chair is better than the rolling toilet chair because it has hooks to hold your shower stuff and it doesn’t look as degrading as you’re wheeled down the hall.

Being wheeled around in a toilet chair in a worn-out hospital johnny draped like a shawl around you is your current nominee for Indignity Number One. The whole arrangement leaves you completely exposed to any curious hallway passerby. You know you truly look brain damaged. You look like Jack Nicholson in
One Flew Over the Cuckoo’s Nest
after he receives shock treatment and is faking being deranged. But your look is the real thing.

You have learned to stare down anyone who gazes at you, but you’d rather take the first shower and avoid the spectacle of being rolled around half naked with a bucket of toiletries on your lap.

THE SHOWER ROUTINE
itself is humiliating. You are rolled to a dank shower room. It is the size of a large walk-in closet, with a shower-head on either side of the doorway. It is dim with mildew green tile, and it is cluttered with other people’s handicap equipment. (You have no idea how the stuff ended up being left there. Did someone need it coming in, but not going out?)

In this room, you’re hosed down in your chair like a car at a carwash. It’s a depressing experience. You feel like a prisoner in your own body, like the prisoners you can see caged in the jail across the street from the hospital.

Brushing your teeth in the shower room always causes frustration. Inevitably, either you or the aide drops the toothbrush, and as you stare once again at your toothbrush, which is lying on the floor of the filthiest shower floor it has ever been your duty to scan, you always feel like screaming.

The aide picks it up and puts it on your lap. Like you would ever use it again. Only if you were brain damaged beyond reason. Which you are not. Frustrated, yes. Confused, yes. Grossed out, yes. But not that brain-damaged.

You beg your folks to bring you a fresh supply of toothbrushes.

Eventually you have your mom tie an idiot string that connects your wrist to the toothbrush. Problem solved.

THIS MORNING,
you are in the shower chair, and are being wheeled to the morning shower by a nurse who is new to the job. You need to have a bowel movement as you are being wheeled to the shower room. It’s an opportunity that you can’t afford to miss since you have had a history of constipation.

The nurse lifts you onto the toilet located directly across from the shower room. She leaves the room door wide open, however, and neglects to pull the curtain shut, leaving you completely exposed. Hospital staff, patients, and visitors are passing by in the corridor, getting an unsolicited peep show.

You say, “Please shut the door. I’m not an animal in the zoo.”

She does.

“This really sucks, but I can’t wipe myself. Could you please help me? Maybe if you pretend I’m your daughter, you’ll think of me as a human being.”

You can’t wait to get home full-time.

YOUR FRIEND PAUL’S HUMOR
leans to the macabre. He contacted several florists requesting that they send you a cross made with flowers—the kind of arrangement that people lay at a graveside or deliver to a funeral parlor. None of the florists would go for it because the person he wanted the flowers delivered to was the same person whose name he wanted on the cross.

He tells you about this during a visit, and you both laugh hysterically. You’re kind of glad he didn’t manage to do it, though, because it wouldn’t do your family members much good to walk into your room and see a huge funeral display. But when you think of him trying earnestly to convince a florist to send a funeral arrangement to someone who’s still very much alive, you feel very, very grateful to Paul for his ability to laugh at the dark side of things.

This, you realize, is the kind of stuff that will keep you going. After all, what is the alternative? To hold court in the hospital with all your friends and relatives in a state of unrelenting gloom? To bring everyone down with you? Where would that lead? Eventually people would only visit out of obligation, or stop coming altogether.

“My goal,” you tell Paul, “is to be that person you’d cross the street to see, rather than the person you’d cross the street to avoid.”

You remember when Edie made the bedding for your son Rory’s crib.

Edie has very honest eyes. She is looking at you right now and you are looking back and her eyes say, “You’re not in a hospital,” but they don’t need words to say it.

You say, “I’m not?”

Her open eyes say, “No. I’m in a hospital, you’re coming to visit me.”

And all that matters is that Edie made the bumper pad, the rocking chair, all the components that pull the pieces together in your son Rory’s nursery, and her eyes could never, ever tell you a lie.

Edie makes her eyes say, “Don’t worry, honey,” and dim themselves, and the wall settles in again.

SHE KEEPS MOANING.

You start asking questions about the lady who keeps howling at all hours of the day, even though she knows she’s driving everybody nuts.

The nurses tell you the woman is in her early forties. She has had a severe left-hemisphere stroke that caused aphasia, a major brain dysfunction that damages speech and the ability to express thought.

She used to be a schoolteacher.

She had married for the first time in the past year.

Her husband is a big strapping guy who is completely devoted to her. He visits all the time.

Her stay in the hospital has already been a long one. She has been there for four months.

You ask when she’s likely to get out.

“She’s indefinite,” the nurse tells you.

It stops you cold. Parts of you are paralyzed and you have a lot of body-part issues and some cognitive problems. But at least you are able to talk and communicate with others. This woman is trapped inside her head without the ability to express herself. Your prison is a portion of the hospital—hers is her skull, and she has no idea when or if she is getting out.

It occurs to you that there must be a lot of people like this in a lot of hospitals, people who have a worse struggle than you do.

PAUL’S VISIT IS OVER.
You’re on your own again. He left some cologne for you. You spray a little of it on your wrist, and then in the air, watch the droplets scatter and disperse into the air, close your eyes, and take a deep breath.

Heaven.

FOR MOST PEOPLE
a wheelchair conjures up ideas like illness, debilitation, and helplessness. It’s hard to escape these preconceptions when you find yourself spending time in one.

You find that when you’re sitting in a wheelchair your personality changes because you’re not at the same level physically as everyone else. You’re actually at the level of everyone’s crotch and people have to talk down to you. “Talking down” to a person is slang for talking negatively.

Your wheelchair offers a very uncomfortable seat, no matter how you rig it. Extra cushions and pillows work only for a few minutes. After a stroke that causes paralysis, one side of the body doesn’t shift. As a result, your body doesn’t shift and you’re constantly putting weight on one side. Shifting your body is a natural response, but with a stroke, it has to be a conscious thought. After a while the cushions don’t do the trick.

WHY IS IT
that when you’re sitting in a wheelchair, people think you’re deaf?

People treat you differently when you’re in a wheelchair. In a store, salespeople are standing and you’re being talked down to. Sometimes they don’t even acknowledge you and speak to the person pushing you, as if you’re not there. You think they figure you’re powerless, that you can’t even get around on your own strength. So it’s best to talk to the one who got you there on two feet, the one who is steering you.

Or do they act that way because they’re fearful, because they don’t want to acknowledge the possibility that human beings suffer physical trauma?

No one ever teaches etiquette on how to deal with someone who’s not able bodied. Maybe they figure your body is fragile, so your emotions must be as well. Or maybe they feel they simply can’t risk hurting your feelings. Not out of any consideration for you, but because it would be too uncomfortable for them.

You decide that most people who don’t acknowledge you must do so because they’re protecting themselves, because they simply can’t cope with your illness. Illness makes some people feel too vulnerable to their own emotions.

This kind of person typically comments, “God knew you had the strength to handle it.” You think, “Huh? What the hell does that mean?” You begin translating this idiotic comment as “Thank God it was you and not me!”

You’re tempted to ask, “Since you know God’s thoughts so well, what else is he telling you?”

WHEELCHAIRS ARE EXTREMELY CUMBERSOME
for something that’s meant to help human beings be more mobile. You quickly realize that if you need to get somewhere first by car, and then get mobile on the street, it can actually cause injury to package the chair and load it into the car.

Some towns are definitely handicap unfriendly, something you didn’t notice until you had attached a chair with wheels to your ass.

The wheelchair, you are told repeatedly, has brakes on the wheels to keep it from rolling. Mastering the brakes is the first step to master when using the chair. The therapists drill in the “safety first” mantra incessantly.

YOU WANT TO BECOME
more independent. You think, “I should at least be able to brush my teeth at the sink. I’ll use the wheelchair.” Jim usually brushes your teeth in bed before leaving the hospital for the night.

One morning you decide you are going to get to the sink at the foot of your bed to brush your teeth. You maneuver the wheelchair and work your way to the sink only a few feet away. It’s a difficult feat considering you have only one hand to push the wheel. Initially it appears that you’re going to spin in circles like that crazy teacup ride at the amusement park, but then you figure it out. Proud of your accomplishment, you struggle to stand at the sink. Wobbly, but determined, you get up. You have an ever so brief moment of satisfaction when you see, out of the corner of your eye, the wheelchair roll away from you.

Oops. Forgot to lock the wheels.

Now the wheelchair is six feet away and you’re clinging to the sink for dear life with your only useful hand. You’re not even near the call button. You are not in the sight line of the open door. You might as well be stranded on a deserted island.

You have to wait to be discovered. After what seems like a month, a nurse breezes in.

She scolds you for impulsive behavior. She reminds you of how dangerous it is not asking for assistance. She tells you you’re impulsive for not locking your wheelchair.

Okay. If you’ve been in a wheelchair all of your life and you’ve already formed habits like locking your wheelchair, then failing to do so might be considered impulsive and dangerous. But when you’re being introduced to this new way of life, you don’t think of these things. More fucking labeling. Suddenly your condition required you to be in a wheelchair. It didn’t mean that you automatically knew how to function in that wheelchair. It doesn’t just happen instantly. It feels unnatural.

“Nurse, do you ever get the urge to slap someone? I do. That would be truly impulsive of me, if I acted on that urge. So you should be thankful I’m not impulsive.”

ONE SUNDAY AFTERNOON
Jim wheels you outside for a stroll toward North Station. You’re several blocks away from the hospital when suddenly the wheelchair spits out the front right wheel. After a few feeble attempts to do surgery by reattaching the wheel, you suggest that he leave you curbside and return with a working chair. “Give me a tin cup and maybe I could make some money while waiting. I can probably make a lot of money; I’m so pitiful looking! I can hold a cardboard sign—Need Money for New Wheels.”

Jim ignores you; with all his might, he pops a wheelie, putting your weight on the hind wheels of the chair. It’s like a wheelbarrow but in reverse. He has to negotiate curbs, potholes, and general street debris. He is holding the handlebars down so that your feet are up in the air. You’re looking up at him. “You’re my hero.”

It must have been an odd scene for the passersby: Maybe a pair of homeless people had just discovered a wheelchair and were taking it back to their campsite.

Jim is sweating profusely by the time you arrive at the hospital. No wonder—you’re no waif, and you’re dead weight, too. He’s breathing heavily and he looks like he’s on the verge of collapse. You feel like screaming, “Get this man on a gurney—stat!”

SOMETIMES YOU FALL
while trying to sit up by yourself in a chair.

Sometimes you fall while trying to get out of bed.

Sometimes you fall when you are practicing walking.

You fall when loved ones are there in the rehab hospital visiting you.

You fall when there is no one in the room to notice you have fallen.

Sometimes you fall in your dreams.

The key to falling and surviving, you eventually learn, is relaxing whatever can still be relaxed before you hit the floor.

Falling is a side effect of your injury. It is a fact. You must accept that it happens. It is now part of who you are. This is sometimes difficult for your loved ones to accept. At first, Jim would get frustrated and upset when you were lying on the floor. Now he gets so sad when he sees you fall. He doesn’t say anything, but you can see him collapsing inside when you look up from the floor. He tells you he hates to see you on the floor and wants to save you from hurting yourself. He’s in more pain than you are when it happens.

This morning you stop him as he is coming to help the therapist pick you up for what must have been the tenth time within an hour and a half.

“Jim,” you say, “if I’m not falling, I’m not making any progress. I’ve got to learn it all over again, and I have to fall if I’m going to learn anything. Do you understand? I have to keep trying to move forward. And sometimes that means I have to fall backward. Okay? I’m going to mend, don’t worry.”

You know that’s the same kind of response as “Be careful.” It doesn’t change anything. What else can you say, you wonder.

“And, guess what,” you say. “I think I’m starting to bounce!”

He nods. You let him pick you up.

“Honey,” you say, “I keep falling for you over and over again. You’re my prince!”

You start again.