Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (14 page)

THE EVENING BEFORE YOUR RELEASE,
your brother Jerry appears and says he has a surprise. He has scoped out all the handicapped access ramps in town and has found a nail salon in the North End.

Your brother Jerry is movie-star handsome when he’s dressed in his business suit, as he is tonight. You, on the other hand, are bald and dressed in shabby lounge-around pajamas.

“Are you ready for your beauty date?” he asks. “I’ve got a plan on how to get you there.” He helps you into your chariot. (You have started thinking of it as a chariot, rather than a wheelchair, because “chariot” makes you feel better.)

Out the front entrance and down the ramp, Jerry breaks into a run. He’s pushing you fast. You love being on the outside with the wind in your face.

Just you and Jerry. Like you were kids again.

You holler out: “I’m free! I’m free!” into the wind as the city rushes by.

A guy in a nice suit pushing a bald lady in pajamas full speed through the streets of Boston. The pair of you must look like you’re members of some outrageous cult—or possibly escapees from an insane asylum. People stare as you fly by. You look absolutely ridiculous, but it doesn’t matter. Before they wheel you back to the hospital, you’re going to have your nails and your toes done and they’re going to look gorgeous.

As you approach the salon, you can see two of your brothers, Jimmy and Jason, waiting for you. Jerry slides you up the ramp to greet them.

The salon is tiny and packed with clients. There isn’t room for the chariot, so you wait outside the entrance while Jerry goes into the salon and requests service for you. Everyone in the salon seems to be staring at you from the window. You wave gleefully to the staring faces.

You watch Jerry through the window. The conversation appears to be taking place by means of energetic hand motions. The next thing you know, the door to the left of the salon swings open, and you are wheeled to the back of the shop.

You peer forward and see a door—too narrow to accommodate your chariot. Through the door you can see a brown vinyl recliner with the sponge stuffing poking through its many holes. A sink is next to it. The room is tiny, dark, and crammed with jugs of various nail products. It is cluttered and claustrophobic.

“We’re never going to get that chair in there,” Jerry announces.

You correct him. “It’s a chariot.”

Jimmy and Jason lift you out of the chariot and fireman-tote you into the tiny, dark storage room where you are, you hope, going to receive the fully beauty treatment. Once you’re in the vinyl recliner, you realize they’ve basically dumped you in a closet. Your brothers leave the door to the street open so you don’t freak out. They stand guard on either side of the door. You feel like royalty.

Jerry is dismantling the chariot down to its smallest parts. You’re not sure why, but it gives him something to do. When he was a little boy, he would take everything apart that he could get his hands on—clocks, toys, appliances, whatever. Once, Mom let him disembowel an old dishwasher after the new one had been safely installed.

While you’re waiting for the manicurist, there is a frenzy of Vietnamese words flying back and forth in the next room. You recognize the nervous high-pitched voice of one woman, and start to laugh. By pure coincidence, the voice you are hearing from the next room belongs to the manicurist Jim had hired to come to the hospital to tend to you, the one who fled your hospital room in terror when you collapsed onto her.

You recall that she was quiet and withdrawn at the beginning of your last encounter. Now, however, she is a banshee, raving and furious. You don’t have to speak her language to know what is going on. You figure she must be the low person on the totem pole, because she loses the argument.

When she comes in to attend to your beauty needs, she is obviously not happy with her task, her client, or perhaps life on earth. She stares ruefully out the door, where your brothers stand, arms folded tight and grim faces set cold. You imagine her thoughts. She tried once to escape, and thought she had succeeded. This time you have come to her—and with bodyguards! She is probably wondering why Buddha has chosen to torture her.

“Hi, there!” you say cheerfully, smiling as broad a smile as you can manage. “Ready for round two?”

MID-SEPTEMBER NOW.
You are about to be formally released from the rehab hospital. The doctors are careful to assure you that this doesn’t mean, by any stretch of the imagination, that this will be the last time you see this hospital. It’s going to be a part of your life, they tell you, for a long time to come.

But you don’t live here anymore. You are going home. Not for a visit, but for good.

When the morning finally arrives, you feel like you can’t leave soon enough. You can’t wait for Jim to show up. You call him several times to say, “When are you coming? Please leave now.”

He arrives about eleven in the morning and sets to work packing the car. After all your accoutrements have been loaded in, he slowly gets you into the car, packed up with your wheelchair, and he places two pillows under your left arm to keep the arm in the shoulder socket. (Your left side is so flaccid that your arm literally hangs out of the socket. Sometimes the aides who help you get washed or get to the toilet will inadvertently grab the left arm to transfer you, causing it to come out of the socket even more.)

You are excited about going home, but you are also apprehensive about the obstacles you will now face. You are a different person than you were on July 17, both physically and emotionally. You are still getting acquainted with this strange, suddenly foreign body.

THIS IS IT.

Home.

No longer a rehearsal. You live here again.

You hear Jim in the other room. No doubt about it. You have made it back from the hospital. This is your life now.

There is a wheelchair in the kitchen, you remember. It offers plenty of open space, but mostly you will hold court in what Jim has designated your “headquarters,” your leather chair and ottoman. It has your table and the phone and a pile of books.

That’s the sound from the next room. He’s cooking. Right.

Jim is getting ready to serve dinner to you at headquarters.

Where is Rory?

JIM TAKING
your dinner dish away.

“Pasta. Your favorite. Be right back.”

He smiles. He looks tired. A thought flashes. Whether you will be waited on for the rest of your life.

Eyes squeezed tight. He says something, can’t make it out.

Open your eyes.

He sounds like he’s looking for bowls. Looking for something. Probably bowls. In a minute he will be scooping leftover pasta into them.

Do something.

You get up, trying to help him. You have a wineglass in your hand from dinner and you trip. You fall. Again.

He hears the thud and rushes to you. He carefully picks you up, sits you back down, and smoothes all your ruffled parts. He surveys you for damage. You feel a little like a potted plant that has been knocked over and then attended to by a loving gardener.

You survey the room. The red wine is all over the wall, all over the silk lampshade, all over the Tibetan rug, it’s everywhere. Very impressive. It looks like you’ve just made Spin-Art with your family room as the canvas. You have created perhaps the most notable mess in your long series of messes.

It’s what you seem to be good at now. Your body itself is a big mess. Messes are your specialty. It’s your area of expertise.

“Jim, I’m sorry.”

He must have told you where Rory is, but you don’t remember now.

Bowl of pasta in front of you.

Jim has disappeared. You hear running water.

“I’m sorry.”

JIM CLEANING UP.

Jim getting you upstairs.

Jim putting the splint on your leg,

Jim putting the splint on your arm.

Jim propping the pillows under your shoulder to keep your arm in the socket.

“I’m sorry, Jim. I’m sorry.”

Jim turns out the lights.

You start crying.

“Jim, I’m sorry, I’m so sorry.”

He kneels next to you and starts crying on your chest.

You both cry hard for a long time. Time hurts now. The house is the same but everything else is different. Time is different. You want to have another baby and you spilled the wine and time still doesn’t work right yet and the pasta tasted like pennies and you want your life back.

He stops crying, but you are still going full throttle. Maybe the drugs. Maybe this is a mood swing like they said you might have.

“I’m sorry.”

Your throat is raw from the crying.

“I never wanted to be so dependent. I don’t want to make taking care of me your whole life. I’m so sorry, Jim. I’m not going to let that be your life.”

Finally it stops. Your throat stops, everything stops. You fall asleep.

WHAT WAS IT
that you wanted to think. Yes, where Rory is. But it’s so dark. You can’t wake Jim to ask.

You must have asked, he must have told you. Probably at your parents’ place. But still, where is he?

Headquarters, the wineglass, the ruined lampshade, the splints, your throat, which still aches a little. And Jim asleep next to you, thank God.

Those terrible stains.

But what was that, what you wanted to…? Yes, it was Rory. Well, if he weren’t okay, Jim wouldn’t be asleep here. Just be in bed with Jim now, wait, ask again, and next time you’ll remember. You will.

Even silence is different now.

This is it.

Home.

YOU REALIZE RETURNING
to the house prematurely, which was what you did, was a selfish response to your misery in the hospital. You wanted to be home with your family. You weren’t thinking how difficult it was going to be for Jim. The falls were harder on him, emotionally, than they were on you, physically.

It is going to be precarious for a while.

SUNDAY,
the day after you arrive, a visiting nurse arrives at your home to see what kind of inpatient care you need.

You’re expecting her to prescribe an aide to bathe and dress you in the morning, and perhaps to help with morning household routines. After all, there’s a three-year-old to take care of, too.

For some reason, though, she only stays for a few minutes.

After the visit, you learn that she has not recommended a home nurse. Only occupational and physical therapy, and a few visits with a speech therapist.

A snap decision.

Or is it? The insurance company is unwilling to offer home nursing unless there is no other avenue for household needs. In other words, if you have relatives, you don’t need a nurse.

It’s a cost-saving measure for the insurance company, but a decision that puts even more of a burden on Jim.

Somehow, you didn’t think that was possible. But obviously it is.

THIS IS YOUR
new regular morning routine:

Jim puts a sock, brace, and sneaker on your left foot.

Jim puts a sock and sneaker on your right foot.

Jim helps you into the bathroom.

Jim gets you into the tub, seated on the shower chair.

Jim removes the sneakers, socks, and brace.

Jim washes your face and bathes your body.

Jim holds your left arm over your head and shaves your underarm.

You hold your right arm over your head while Jim shaves your right underarm.

Jim shaves your legs.

Jim washes your hair.

Jim hoses you down.

Jim towels you dry.

Jim puts the socks, the brace, and the sneakers back on to move you back to the bedside.

Jim removes the socks, the brace, and the sneakers once again, so as to begin the process of putting clothes on you.

THIS MORNING,
Jim is dressing you. He is threading your legs through your underwear and then threading your legs into pants. To pull the pants all the way up, he has to lift you up while holding onto the waistband of the pants.

As you’re hoisted in midair, you remark: “I never thought you’d be working so hard to put my pants on. In the old days, you’d be trying to get them off!”

The top comes next. He takes your dead-weight left arm first and threads it through the sleeve, then puts your right arm through the other sleeve, then pulls the top down over your head. Your arm flops to the side and dangles off the bed.

“This is a strange new dance. I’m having a hard time letting you take the lead. Perhaps you might want to get a new partner,” you say as he plops you on the bed.

Then the socks again. As you watch him put your socks on your feet for the fourth time in less than an hour, you realize he is drawing them over your feet in exactly the way one would place socks on a sleeping infant, scrunching them over lifeless toes.

Here come the brace and the sneakers again.

Now it’s time for him to dress Rory—who is still in diapers. You had been trying to potty-train him, and you were close to success, but he regressed and reverted to the diapers after your hemorrhage.

As you watch him, you realize that it’s a good deal easier for him to dress a squirming three-year-old than it is for him to dress his wife.

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?