Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (3 page)

A ladder and a choice.

Going to be there climbing it.

But going to have to choose, too.

“I RECOMMEND
chemotherapy.”

Nighttime again. For some reason there’s a doctor standing by the bed. He seems to think you know him—short, bald, red-faced, and fat, in a white coat. A baby who has been poorly extended into the dimensions of the adult world.

So it’s you and the bed and the white sheet drawn across you and the window with the curtain drawn to block the night and the smell of antiseptic and Jim standing next to you, always Jim standing next to you, thank God, and then this impossible doctor-infant, pudgy and crimson-faced, clutching a ballpoint pen in broad fingers wrapped into a tight, shut fist.

“I’m definitely recommending chemotherapy. Actually it’s not a recommendation. It’s your only option. There are sterility issues, but that shouldn’t be your concern anymore.”

He seems to want one of you to say something. Jim stares him down.

“People sometimes get emotional about the sterility issue. Don’t do that. You’ve got a good family already, yes? Anyway, first an echocardiogram, to confirm there was no damage to the heart, and make sure that wasn’t what caused your stroke. Then chemotherapy.”

He is paid, apparently, to radiate a single red idea:
I’ve made up my mind about this because I know more than you do.

Dr. Jerk.

“You have vasculitis. I’ve never seen it affect the brain before, but that’s definitely what it is. Normally affects the lower large organs. It’s incurable. Can go into remission, though, if you’re lucky. Not much luck so far, of course, in your case, but there you go. At any rate, the treatment is chemotherapy and high doses of prednisone. The physical problems, I’m afraid, are permanent. Bad news is, you’re going to have to get used to doing things very differently. Good news is, at least you’ll have better parking possibilities.”

Silence.

“What with the handicapped sticker, I mean.”

Jim glares at him.

“What,” you ask, “is an echocardiogram?”

THEY ARE WHEELING YOU
on a gurney through the halls. The metal railing of the gurney sends little shock waves down your whole left side, like the sensation you get when you bite down on tinfoil with a filling.

“Why couldn’t they pad the railings?”

The nurse is a huge linebacker type with a crew cut. He laughs—he thinks you’re kidding—and asks if you’re okay as he wheels you.

“What, exactly,” you ask him, “is a drug-induced echocardiogram?”

He tells you.

JIM THERE, HOLDING YOUR HAND.
You’re together, in this tiny over-lit room. The tinier the room, the brighter they make it. You hold Jim’s hand like you don’t want to let go of it.

“Relax,” Jim says. “It’s not going to hurt.”

You can’t believe he said that.

“Jim, do you know what they’re about to do to me?”

He puts his other hand on your hand and shakes his head no.

You tell him. It is basically an induced heart attack. They want to make your heart go crazy to see if they can make whatever happened to you happen again. They shoot you full of something and make your heart race like you just ran an Olympic track race. They’re trying to confirm this vasculitis thing by coming within an inch of giving you a coronary and then stopping and bringing you back and monitoring what happened.

The linebacker crew cut nurse guy comes in and tells Jim he has to leave. He is arguing that he wants to stay but the bright room wobbles and twists and Jim is gone and there are now four nurses rammed into this closet of a room and you are being lifted onto a slab and the nurse says, “Don’t let Dr. Jerk touch any of the equipment, he always screws it up.”

You don’t want to be here.

You don’t want to have vasculitis. You don’t want to have chemotherapy.

You want to have another baby.

You say, out loud, “I want to have another baby.”

The nurses stop what they’re doing and look at you, then go back to setting up equipment and, evidently, dusting the tiny room for fingerprints.

The tiny room gets brighter and spins and Dr. Jerk is standing over you and energetically messing with the equipment just like the nurses said he shouldn’t. The nurses are trying to distract him by asking him about the monitors, but it’s not working. He’s really hyper; he’s twisting every knob and pushing every button in sight.

You are a passenger on a tiny airplane and the Nutty Professor is in the cockpit.

You want to tell him that he isn’t supposed to touch the equipment. You decide to say something, but the room bends again and your heart is racing inside your chest at a pace that could outdo any rock-and-roll drummer. Why on earth do you have to be awake for this?

“You should at least mist the patients,” you say out loud. “Then they’d feel like they were having a good workout at the gym.”

Nobody laughs.

Your heart continues its high-speed shudder. Dr. Jerk twists a dial and stares at the monitor.

A BIGGER SPACE SWIMS UP
and snaps into place around you and it’s morning and Jim kisses your forehead. “At least we’ve got a diagnosis.”

You are in a different room, a different floor, but at least Jim’s there to make it feel slightly less strange.

“Where is this?”

“The neurology floor. We’ve got a diagnosis, right?”

Dr. Jerk shimmers into existence on your left and Jim is gone and you’re staring at the fat fingers clutching the pen again.

“I am still recommending chemotherapy. Sterility issues, of course. But there you go.”

He’s gone. You’re alone. A nurse, tiny and wrinkled like a raisin, comes in and strips off the white sheet and turns you on your side. She is amazingly strong.

Although your left side is paralyzed, it is, you realize, hypersensitive to sensations—hot, cold, metals, and pain. You have a consistent pins-and-needles feeling on your left side from head to toe. A line could be drawn down the middle of your body, and everything on the left of that line—your left scalp, eyebrow, eye, nostril, gums, neck, shoulder, arm, hand, fingers, breast, stomach, thigh, knee, calf, ankle, foot, and toes—would not exist.

The raisin nurse pulls you into a sitting position by your shoulders. She is scary. It dawns on you that you cannot sit up by yourself. You have to be propped on several pillows like a doll placed on a bed—except you have a feeling you’re not as cute.

You can’t feed yourself, either. The raisin nurse spoons some oatmeal into your mouth.

TIME SLOWS
to a crawl.

They keep coming into your room and drawing blood. Your mouth tastes like metal and your eyes won’t stay shut. Every time they come to draw blood you ask for something that will help you sleep but they say as long as they’re taking blood samples they can’t give you anything and you are exhausted and you want to be able to dream your way out of this place.

Hours pass…you think. You don’t understand time, but at any rate, absolutely nothing happens.

The doctor on call, a short dark-skinned man with salt-and-pepper hair and an accent, steps into your room and asks how you’re doing. You can tell from his voice he’s from another country, maybe India. You tell him you really need something to help you sleep and ask if he can do anything to help you. He looks at your chart and then leaves the room for what seems like eternity. You figure he must have seen on your chart that you are not supposed to have anything that would put you in a deep sleep. You think to yourself,
It’s because they don’t think I’ll wake up.

But he returns. He has a somber look on his face. He reaches for the light switch and turns it off.

This is his idea of helping you get to sleep. You can tell he feels bad and you half-expect him to lie down next to you and sing lullabies.

“Is there anything else I can do?” he asks.

“Could you help me count some sheep? I failed the counting test.”

MORE TIME POURS
out onto the floor, which brightens with a slim coating of dawn. A huge woman appears at the foot of your bed with a stack of five containers of tapioca pudding.

She barks in a gravelly voice: “Tapioca!”

You look at her quizzically.

“Huh?”

She seems somewhat annoyed and barks: “You ordered tapioca.”

A memory—and a recent one, at that—flashes past. There was a speech pathologist. Blond hair. Serious eyes. She stared at your throat and spooned tapioca in your mouth to check your swallowing. The thick tapioca allowed her to track your swallowing mechanics.

This new tapioca woman must be here to do more tests.

You half-smile and say, “Are we going to do more tapioca testing?”

The tapioca woman’s eyes scan your head, which, you suddenly remember, has a large incision with metal staples on the right side—and shoulder-length hair on the left.

You realize she probably thinks you just had a lobotomy.

She storms out of the room shaking her head, without leaving you any pudding.

The light in the room starts thickening and you feel something big and heavy drop over you and you wonder if you might be about to fall asleep, and you hear Jim saying, “No, don’t wake her up, I’ll just sit here with her.”

You are climbing a ladder.

Actually it is more like a symbol of a ladder.

It’s white and misty.

Something that uses the idea of a ladder to stand for something else.

Something bigger.

Anyway, you are climbing it.

You are moving upward.

The top of the ladder is hidden in white clouds.

You look around—

Sky

Ocean

Beautiful.

So simple.

Backdrop of blue sky.

Clouds above and below.

And you are on a ladder with no beginning and no end.

How close to God are you?

It’s a grid going up, up, up.

You can keep climbing it if you want.

You have a choice.

You can keep climbing up and get closer to God,

Or you can go back to a body that doesn’t work as well as it might.

You think,

“This isn’t a dream. This is a choice.”

You hear someone say,

“You’re going to have to choose.”

You choose to go back down and live your life better,

Become a better person,

But with the knowledge that it would have to be

In a different body.

You hear someone say,

“You pass over. You don’t go away.”

You are going to have to be strong for your family.

YOUR FAMILY ALWAYS LOOKS SO SAD
when they come to visit you. You try to put them at ease with self-deprecating humor.

“I always thought the brain was like Jell-O, but it turns out it’s more like Play-Doh.”

“I need that like a hole in the head. Oh wait, never mind, I already have one.”

But they still look sad coming in the door, and they try not to look sad when they’re with you but you can tell they are, and they look sad going out the door.

You rarely cry in front of them, or anyone. You only cry at night, and not from despair, only from an awesome frustration at not having half of your body, and, perhaps, from shock. One day you’re walking around, the next you can’t sit up or roll over in bed. It is shocking. But it’s just as shocking to your family. They are paralyzed, in their own way, along with you. They don’t need to see tears. They need to hear you crack a joke. So you crack jokes for them.

“I always wanted to be right. Now, I’m nothing
but
right! I guess you can accuse me of being one-sided.”

“I guess the only dancing I’ll be doing is the sidestep.”

You’re going to be a better person. You know that is in fact true. That’s the reason for all this. You’re going to be a better person.

Since you don’t cry when people can see you, the staff all think you don’t actually realize what’s happened to you.

Dr. Jerk gives you a lecture one morning. “You’re going to need to cry,” he tells you. “You should get some therapy so you can cry. You’re in denial.”

You say, “I’m not in denial. I’m just focusing on how I’m going to get out of here. I’m going to walk again. And I’m going to have another baby.”

He looks at you for a long time. You don’t think he can roll his eyes any farther back in his head. Then he leaves and you can see him out in the hall talking to Jim. The door is ajar but you can see his lips move. You watch his lips closely.

What is he saying? You follow the lips moving and finally put it together.

He is telling Jim, more or less, “She says she hasn’t cried. That means she hasn’t accepted what’s happened yet. That’s because she’s in denial. She needs to resign herself to the fact that she can’t have another baby. And if she lives, she may never walk again.”

What does he know? Certainly not you. You know your body better than he would or could ever know it.

Trust your gut. That’s your soul speaking. It doesn’t lie. Intuition is only about truth.

THERE ARE TIMES THAT YOU LOSE
the nurse-call button. Either you are lying on top of it, or you’ve let it fall to the side of the bed. It might as well be in Nicaragua. You are no longer capable of rolling over and picking it up. When this happens, it occurs to you that you’re utterly helpless.

YOU HAVEN’T HAD A BOWEL MOVEMENT
in nine days. The nursing staff has been pumping you with suppositories and stool softeners. Part of it is fear; you’ve been told not to do anything that may strain you or put pressure on your brain.

YOU HAVE PASSED OUT
while being moved to the potty chair. Three nurses are hoisting you back on the bed. Your whole body is one massive shaking spasm. You must be having a seizure. You think,
Okay, tonight I’m going to die.

“She’s had a…”

You can’t quite make out the words that come next, but they sound like “varsil-vegal.” Whatever that is, you had one. It sounds like a forbidden word. Now that you’ve experienced it, you figure, whatever the hell it is, it should be taboo.

When it finally passes, and they’ve heaved you back onto your bed, you hear yourself say out loud, “I don’t have a body anymore.”

You hear yourself sob. The nurses try to console you. You know they mean well, but what can they possibly say to make you feel better? “At least you’re alive”? Even that’s questionable—no one is willing to tell you you’ll survive this.

You are weeping for about fifteen minutes. A nurse stays with you. She’s your age and she has a child about Rory’s age. She’s sad because you’re sad.

You finally stop crying and say to her, “I’m not particularly crazy about this movie. I need you to rent another one for me, one with a happy ending.”

“This is the only one we’ve got,” she says, smiling a little. “But the ending is up to you.”

DR. NEURO VISITS YOU
on his morning rounds.

The story now looks like this: You had a horrific evening, suffering a “varsil-vagel” (or whatever the hell it’s called) after completing a long-awaited bowel movement.

You say to him, “I finally had a bowel movement…after nine days!” You wait for pearls of wisdom to issue forth from the physician you have decided you like the best. He looks at you for a long time, clearly polishing something brilliant he has to say about your condition.

“It really stinks, doesn’t it?” he asks, soberly.

You both crack up.

He’s the one you trust—not only with your life but also, now, with your sanity.

EVERY DOCTOR IN THE HOSPITAL,
it seems, is trying to diagnose you.

You are obviously of great interest to the neurology team. They’re always materializing and vanishing. You frequently wake up to find yourself surrounded by residents with clipboards. One resident, tall with red hair and a bony face that reminds you of a skull, mentioned to you—yesterday? the day before? the week before?—that your condition has “become the subject of many heated debates.”

“You’re the reason the rounds take so long these days,” he says, making a face at you. He seems to want it to be a joke.

“Hey,” you say. “I don’t want to be here either. At least I make the rounds interesting.”

“Watch out.” He grins. “This place may make you famous. You’ll find yourself in some textbook if you’re not careful.”

DR. JERK, YOU CONCLUDE,
has an overblown ego and an obnoxious bedside manner.

He insists you need a drug called Cytoxan in order to treat the vasculitis he has concluded you have.

He stands by your bed and squints through the baby fat. There is a younger doctor next to him, still as a ventriloquist’s dummy, and with laminated hair too.

“CYTOXAN will probably make her STERILE,” Dr. Jerk says, repeating the words slowly so they can’t possibly be misunderstood. “But she’s going to have to DO it anyway.” He has been looking at his fellow doctor, the ventriloquist’s dummy to whom he has, presumably, been speaking, but he pauses and turns his eyes to you to see if what he just said sank in.

Whenever he talks to you (or, in this case, around you), he speaks more loudly than he does to the nurses. It’s as though he thinks sick people are stupid by nature. “Despite the fact that it will probably make her STERILE,” he says, once more, still staring at you, “we’re just going to have to DO it.”

“No, it won’t MAKE HER STERILE,” you say.

“Why is that?” he asks, pen clutched between red fat fingers.

“Because I’m NOT GOING to DO it. And P.S., JULIA DOESN’T have vasculitis, EITHER.”

You say your words slow and loud, just like he does.

“You just THINK she has vasculitis because that’s what you KNOW about. You think EVERYONE has vasculitis. You probably think the TAPIOCA lady has vasculitis. Well, we’ve got NEWS for you. We DON’T all have vasculitis. Is it because you’re so SHORT that you have to overcompensate by always proving yourself RIGHT? If you haven’t made any mistakes, she DOESN’T think you’re very smart.”

You believe mistakes are a learning tool, and this is clearly a guy with a lot of tools to take advantage of.

He stares at you for a long time. He may not get the tapioca lady thing.

“You’re in DENIAL,” he pronounces slowly, as though he were talking to a very slow four-year-old. “There are going to be some SIDE EFFECTS. But don’t worry. You have your SON. That’s GOOD. You already HAVE a son. Anyway we’re going to start treatment IMMEDIATELY. It’s a PROPHYLACTIC.”

He stares at you again to see if you’ve misunderstood the word. He would love you to misunderstand the word. He doesn’t mean condoms. He means a kind of protection from the incurable disease he’s so good at recognizing that he probably sees it in his breakfast cereal every morning.

“I…DON’T…HAVE…VASCULITIS,” you say, slow and loud. “And I DON’T want to have chemo. And anyway I need a little TIME to PROCESS all this, okay?”

He points the tip of his ballpoint pen at you and leans in close.

“I’m GOING to TALK to your FAMILY about this,” he says.

“YEAH? So what? I’M going to talk to my family about YOU.”

AFTER DISCUSSING THIS
with your family and in the glaring absence of any other diagnosis, Dr. Jerk wears you down and you agree to his course of treatment. There are many types of chemotherapy, and the one Dr. Jerk has prescribed for you requires at least eight hours of hydration.

Hydration, the nurses tell you, is basically having to pee for eight hours straight. This is one time when having a catheter attached to your bladder has its advantages. You need to be hydrated by an intravenous drip for four hours to protect your kidneys and liver. The poison is a forty-five-minute drip, and then you get another round of hydration. Otherwise, Cytoxan would do severe damage to your internal organs.

All your life you’ve been taking your vitamins and trying to eat from the right food groups. Now you’re letting the nurses poison you. They may call it something different, but Cytoxan is a poison, and they are putting it in the intravenous line that has been surgically implanted on your left side below your shoulder. It goes against every instinct to allow them to put this poison into your body, but now you can’t resist because you have to be strong for your family.

You are crying quietly. The nurse who is shooting you full of the stuff is old and jowly and has hair the color of iron and she can’t be more than five foot two. She actually seems to be enjoying this. Nurse Doom.

You wish you could literally stick it to her.

Instead you tell her, “Look at me.”

She stares up from the needle and looks at you.

“I am going to walk again. Do you hear me? After this is over, I am going to get better and walk again. And I am having another baby, goddammit.”

You wait for her to change her expression, but she doesn’t. She just looks at you for a minute, then looks down at the needle again, then looks over at the IV bag full of clear poison that is now rushing into your veins.