Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (15 page)

YOU HAVE A COUPLE
of in-home sessions with a speech pathologist. The two of you don’t connect very well, and you don’t get a lot out of the sessions. You don’t get the feeling she likes you. Her face puckers like she ate a sour lemon every time she talks to you.

The occupational therapist will be able to spend a lot more time with you. The OT, the doctors explained before you left the rehab hospital, is supposed to teach you how to get around your house and adapt to your own body, to regain normal functioning.

But what is “normal”?

THE OT IS FIFTYISH,
has auburn-gray hair, and a wide butt. Her overall body is horizontally challenged and reminds you of a nun. The first session has been mostly awkward silences.

She sips a cup of coffee. “What are some of the things you expect to do around your house?” she asks, her face blank.

At first, you’re not quite sure how to answer that. But then you decide you might as well go for broke.

“Well,” you ask, “what do you do in your house?”

She looks at you like you’ve just told her that her dog is ugly.

“I mean, think about it,” you continue. “Think about how you are in your house. That’s how I want to be. I should be able to make a bed. I should be able to cook. That used to be my passion. I should be able to do any of the household work—cleaning, laundry.”

She’s still not quite sure what to make of you. She eyes you warily.

“Oh, I don’t know,” she says. “If I were in your shoes, I’d be pretty happy to be rid of some of those jobs.”

She’s a sneaky one. Happy to be rid of those jobs. Like it’s some kind of advantage not to get your life back.

“Well,” you answer, “I know that to an able-bodied person it might sound like household drudgery to do the laundry. But it is actually something I want to do again.”

“Why?”

“To prove to myself that I’m normal. I don’t want to be dependent.”

“Hmmm.”

Very tricky indeed. Like that’s a whole answer: Hmmm.

Silence.

“Hmmm,” you hmmm right back.

She smiles. “It’s just that I’m not sure you’ve gotten your head around the facts of the situation, that’s all.”

“I’m in denial.”

“Yes. That’s one way to put it.”

“You know, I’ve heard that a lot. About my being in denial.”

“It’s something to think about.”

She cocks one eyebrow, like a friendly nun.

“Well…maybe you’re in denial.”

She blinks. Twice, fast. Then twice, fast, again.

“How’s that?” she asks.

“I just think you need a little time to come to grips with the reality of the situation,” you say, smiling your best smile.

She blinks three times, then bites the tiniest edge of her lip. “You need,” she says, “to adapt to your new body.”

“I realize I need to put in the time to recover, but I am actually going to return to being a complete, functional person,” you continue. “I’m going to walk again. I’m going to do laundry again. I’m going to cook again. I am going to work to become as close as God will let me be to the person I was before all this happened. In fact, I’m going to become even better than I was before all this happened, because I’m never going to stop working to improve my body, and I’ve already improved my spiritual life, because I’ve seen what it’s like to be dead. Now, as someone who hasn’t had that experience, you may find that it takes you a little time to get your head around the facts of the situation. I realize that. Denial can be a big problem, especially for someone who’s got a job as demanding as yours is. But I really think I can help you get an understanding of the real boundaries you’re looking at in your life.”

She is still biting that lip.

You smile for her one more time. “If you’re willing to work with me, that is.”

You can read her mind. Inside, she’s screaming: “I’ve got myself a real head case. I wonder if the other OT would trade cases—a head case for a nice, manageable worker’s comp case.”

“I DON’T THINK
I’m going to need a speech therapist after all,” you tell Jim that night while you’re both lying in bed.

“No?”

“No, I think I’m pretty much back to normal with talking. And this lady is not helping me cognitively. She either hates her job or hates me. Whichever it is, I don’t like her attitude. I don’t need help from someone who’s showing up just for a paycheck.”

You know full well you’ve lost some cognitive functions—concentration, multitasking—and you also know you become overwhelmed easily. Frustration has become a daily fact of life. But even with all that, the frustration you feel with this lady is real. You don’t need her in your life.

You’re well aware, however, that you need to work on your head just as much as you need to work on your body. When Jim takes you and Rory for Sunday drives, Rory (naturally) wants your attention directed to him—but this is stressful and difficult for two reasons. First, your neck can’t pivot around properly, and it hurts to even try. Second, it is virtually impossible for you to separate the sound of Rory talking from the voices and music issuing from the radio. You simply have to relearn something you used to take for granted, namely the process that allows you to tune out one sound and focus on another.

On this afternoon’s drive, after holding in this frustration for who knows how long, you lose your patience.

“Turn that goddamned radio off, Jim!” you bark. “You say you want me to feel good on these drives, but how on earth can I feel good if I can’t understand a word Rory is saying?”

Jim obediently switches off the radio.

But now Rory won’t say anything. The three of you drive on in silence for a long time. You feel just as frustrated, just as confused as ever. You feel like the crappiest mother on earth.

AFTER BEING HOME
for a few months, still not knowing whether you are going to be alive or dead six months from now, you are settled in your headquarters watching
Dateline
and you catch sight of a woman on television who makes your breath stop.

She is about your age, and she is being interviewed because she is dying of cancer. She has a six-year-old daughter. She wants her daughter to remember her.

She decided to videotape herself for the different stages of her daughter’s life: one tape for immediately after her death, one tape for the next year, one tape for the year after that, and so on. She knew she wasn’t going to make it—even though she is a tenacious fighter and has defied all the constraints of her supposed diagnosis-survival time. But the reality of death became unavoidable, and she wants to do as much for her family as she can.

She discusses the various things appropriate to the different ages of her daughter’s future: menstrual cycles, dating boys, college, getting married. She discusses the realities of her husband’s life after her death, and the fact that he will probably get married again.

She actually wrote a book about how to put your affairs in order before you die.

Your eyes keep welling up as you watch, but you stay focused. You look at Jim and say, “Maybe I should videotape myself for Rory.”

What would he remember of you if you died tomorrow?

Jim isn’t crazy about the idea. You put it on hold.

SOMETIMES,
during the many trips in the car on your way to the doctors, you discuss funeral arrangements with your mom. You tell her you want Talking Heads singing “And She Was,” and Elton John opening with “Funeral for a Friend.”

She squirms at these discussions, but she doesn’t discourage them.

So you tell her that you want to be waked in your wedding dress. It’s beaded from head to toe and weighs twenty pounds. “I’ll be on my back,” you explain, “so even though the zipper won’t come close to getting past my hips, no one at the wake will know.

“It cost a fortune, Mom, and I loved it, so why not wear it into eternity? Plus it might help a couple of my buddies laugh for a minute, right?” Anything that sparkles, you’re in love with it…typical.

JIM BOUGHT YOU
a diamond bracelet on a day you had another round of chemo. You were completely miserable, and he knew jewels made you happy. He was trying to get you to smile. The only thing you could say was, “I hope you checked out the return policy, because I’m probably not going to be around to wear it for long, and I want you to get a full refund.”

Nice move. Now Jim was miserable, too.

THE OT AGREES
to come three times a week.

The plan is to work on a different task for each visit. You decide it makes the most sense to start with making your own bed.

You have always had an obsession about being sure that your bed is made neatly. It borders on fanaticism. You refuse to get into a bed that is unmade.

“Hey, I know it’s weird,” you tell Jim the night before the OT is supposed to show up and give you bed-making lessons. “But we all have quirks. An unmade bed can make a neat room look like a mess—and a made bed can make a messy room look neat.”

“I AM ALREADY CLEAR
on the basic concept of making a bed,” you explain to the OT. “It’s my body I need help with.”

She demonstrates how you can make the bed with only one side of you doing the work.

First, you are supposed to take the sheet and pull it toward the head of the bed.

Then, you are supposed to drag your body over to the opposite side of the bed, and repeat the process, pulling the sheet to the head of the bed on that side.

You watch her uneasily. There really is a stranger in your room showing you how to make your bed in this incredibly awkward fashion. Wake up, Julia—you’re in a dream directed by David Lynch.

She finishes.

“So what do you think?” she asks.

“Honest?”

“Honest.”

“My first thought was, ‘You’ve got to be kidding. By the time I finish making the bed, it’s going to be time to get back in it and go to sleep!’”

“Okay. That’s your first thought. But what’s the verdict? Do you want to practice making the bed this way, or don’t you?”

You take a deep breath. You know what the answer is, what it has to be, but this seems like such an absurd waste of time…

“Maybe,” you say, “you could just teach my son, Rory, how to make the bed, and that would give me kind of a two-for-one deal.”

“I don’t think that would be such a good idea. I’m being paid to teach you.”

“Well, then,” you say, ambling your way over to the corner of the bed, “you’d better start with me.”

YOU SPEND YOUR ENTIRE SESSION
with her learning how to make the bed with half a body, practicing it. It takes you forty-five minutes of determined effort before the bed looks even remotely presentable.

But it’s done. A little wobbly in the corners, maybe, but acceptable.

“There,” you say triumphantly. “How’s that?”

She surveys your work.

“Not bad,” she says, nodding her head in vague approval. “Not bad at all.” She’s looking at the bed like an Army drill sergeant. You expect her to pull out a quarter and bounce it off the center.

She walks to the corner of the bed.

She takes the corner of the bedspread in her hand. She reaches beneath it to the sheet you laid down so carefully. She yanks everything off the bed.

Clearly, Ms. Inyourhouse-OT is testing you.

“Let’s try it again,” she says, with the hint of a sparkle in her eye.

You fight back the impulse to pick up the sheet and strangle her with it.

You try it again. And again.

“Hey,” you say as you start making the bed for the third time that day, “why don’t we have a toga party?”

YOU KNOW HOW
to make the bed with half your body now. It’s exhausting, but you are elated by the accomplishment. You’re not going to break any records or win a spot in the Guinness book of records, but after a full day of work, you can do it without devoting an entire morning of your life to the task.

The workaholic in you has finally, finally checked an item off your to-do list.

Jim suggests you call up your mom to tell her about this achievement.

When you do, she congratulates you—and then wonders aloud why it was that you weren’t such a fanatic about learning how to make your bed when you were nine years old.

“Hey,” you protest, “I feel nine years old mentally. I’m calling you to be congratulated for making my bed!”

You may feel nine years old in your mind, but your dead-weight body seems to be whispering that it’s really closer to eighty.

THE OT WANTS TO WORK
with you on your rigid left claw.

She has you sit and play with putty, sliding your fingers through cornstarch. The cornstarch helps reduce the resistance from the sweat against a hard surface. You play with the stuff as she instructs and do the exercises she demonstrates, but it hurts your brain to try to lift your fingers one digit at a time, independent of one another. You have to concentrate intensely to pull it off.

If someone had told you a year ago that it would take this much mental effort to move the index finger of your left hand, you would have laughed so long and so loud. Now that you’ve reached your first goal—to have a bowel movement in private—your new goal is to be able to flip someone the bird with your left hand.

MS. INYOURHOUSE-OT
thinks making a meal will be a good session. You agree.

Your choice? A daunting selection: Mary Chung’s spicy noodles. The sauce alone contains nearly a hundred ingredients, and making the stuff will require you to open many containers—one-handed. But the OT is game, and so are you.

Okay. You will have to learn to be resourceful. You have to learn how to use your legs to cook, how to hold things in your mouth, how to wedge bottles up against the counter until you can get at them with your good hand.

Ms. OT thinks the best method is to pour all the ingredients into vessels prior to cooking. You think she has watched too many cooking shows where the kitchen staff prepares all the ingredients so the meals look simple.

You’re going to cook again like you used to, not like you have a staff at your beck and call.

“I’m a huge fan of Emeril Lagasse,” you tell her as you wedge open a jar of something brown. “I’m not only going to watch his show again, I’m going to make his recipes. I’m going to cook again, dammit.”

YOU ARE CAREFULLY MEASURING
out twelve tablespoons of soy sauce, and it is going really really slowly. You are using your teeth to hold the measuring spoon. It’s not too appealing, but she did say to adapt.

Then a lightbulb with the dimmer set to “low” goes off in your head. What percentage of a cup is twelve tablespoons? Aw, hell. You failed the math test. Just guess.

It’s easier to measure by the cup than one spoon at a time. Hell, do it like you did it before the stroke. You always thought measuring things was for wussy cooks. You’d rather wing it.

YOU STILL HAVE TO OPEN
containers and pour their contents into cooking receptacles. What a mess. You wonder how many people on earth have ever tried to get a cup of peanut butter out of a jar and into a large bowl using only one hand.

There can’t have been many such people. Anyway, you’re now one of them, and it’s invigorating. It’s like wrestling a wild animal.

And the peanut butter seemed intent on winning. You’re pretty sure that you heard somewhere that peanut butter was supposed to be good for your hair.

Whether it’s good for kitchen floors, though, is an open question.

It turns out to be a special, extended session between you and the OT on this recipe. Your choice of Mary Chung’s spicy noodles as your first post-stroke entree is, with every new ingredient you assault, more and more clearly evidence of deep brain damage on your part. The cookbook assures you that the normal prep time for this dish is fifteen minutes. You extend it to two days.

But they end up being the most satisfying spicy noodles you’ve ever tasted in your life.