ONCE HE’S DONE DRESSING those two distinctly uncooperative bodies, Jim is finally ready to get himself dressed and ready for work.
A kiss good-bye. The sound of his car in the driveway, then easing into the street outside. Then gone.
He is on his way to work.
WHEN HE COMES HOME TONIGHT, it will be time to get both of you ready for bed so he can face another morning just like this one.
After changing two very dependent and (not infrequently) messy family members, Jim must think it’s peace on earth to get caught in the rush-hour commute. Once upon a time, the stop-and-go drive would have been stressful. Now, you hope, it’s an escape. You hope work is a break and a distraction for him, but then you stop and wonder how it can be.
You don’t know how he manages to remain as calm as he does.
He always expresses love while performing caretaking duties for you.
You resolve that he will not have this nurse’s aide position in your marriage for long. You want him to remain married to you because he’s happy, not because he feels trapped.
You remember Paul joking with you at the hospital.
“Geez, Jim is really screwed now.”
“Why?”
“Because if he left his sick, paralyzed wife, he’d really look like an asshole. Your family would put a contract out on him.”
You both laughed. Now, though, recalling it, you feel the wave of sadness underneath the joke. Is Jim really stuck?
ONE MORNING, before Jim leaves for work, you ask him whether he still would have married you if he had known what was going to happen. It is a loaded question and not a fair one. If he answers “Of course, absolutely,” you’ll both know it isn’t true.
He waves it off. “It’s the kind of question that really can’t be posed or answered,” he says, smiling.
He’s your rock.
YOU WORK OUT A SCHEDULE where your mother will take care of you at home while Jim works. According to the doctors, you can never be alone. You need twenty-four-hour care. You and Jim also have Rory in preschool three mornings a week, and he needs to be driven to and from school.
One evening, your mom has to leave an hour earlier than usual. You want to give Rory his dinner. Mom thinks you should wait until Jim makes it back before you eat.
“I want to give him dinner, Mom.”
She looks at you uneasily.
“Relax, Mom. Jim will be home soon.”
Mom heats some pasta and sauce for you before leaving. She kisses you good-bye.
She’s gone.
This is it.
You’re home.
“Hungry, Rory?”
YOU WHEEL OVER to his high chair. Mom has set the pasta on a stool next to you. Using one hand, you dip the spoon in the pasta. It flips over.
The hot food splatters on Rory’s shirt, on your shoes, and all over the wall. You look at Rory and he looks at you—sauce dripping off his face.
Fortunately, neither of you is burned. There’s nothing you can do except leave it all until Jim comes home. You feel terrible that Jim is going to walk in the door and be faced with this mess.
It’s the first time your mess includes your son.
SAUCE ALL OVER RORY.
Jim wiping up Rory.
Pasta on your shirt and lap.
Jim wiping you up.
Jim wiping up the floor and wall.
IN THE HOSPITAL, the therapist told you: “You’ll adapt. You’ll find new ways to accomplish the daily activities.”
You don’t want to adapt. You want to get better. You want to be the person you were before July 17. You are going to go back to work. You and Jim are going to have another baby. This life is going to be new and good for both of you.
You need lofty goals. If you have a good, tough goal, you’ll work harder. That’s always been your way. You are a work-in-progress that will always be in the to-do box. Everyone faces challenges in life. Change is continuous and we are constantly adapting. For you, it is not denial. It is survival. We all have been given the power within us to overcome any situation. It’s our choice as to whether we tap into that strength. Great things don’t come easily. It takes a lot of hard work and patience, and God knows, Jim has enough experience in that department.
When is the good stuff going to be sent in his direction? Instead of an endless series of messes?
Can You Say “Denying Denial”?
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 s
ituation. 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.
On Your Back
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.
Now Lie in It
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 hi
nt 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.
Recipe for Success: Ignore Authority Figures
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.
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 14