Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (21 page)

YOU ARE DETERMINED
to practice walking in your own house.

Which means you fall.

One day Jim is vacuuming upstairs and you crash down the stairs, landing in the entryway among the scattered rugs; now your limbs are scattered as well. You can’t get up. When he stops vacuuming and looks down the stairs, he sees your feet. He freaks, as you knew he would.

This is how stroke affects the radius of the injured one—not just the afflicted person, but the family, the extended family, and the friends. In a way, everybody around you falls when you fall.

THE GARAGE IS
a big source of falls. Eventually, you manage to fall both up and down the stairs that lead to the garage. It must be the way the steps are constructed, with a half step from the laundry to the garage-step landing.

One day, you step down carefully to put some paper in the recycle bin in the garage. Your ankle turns, things spread apart, and you realize that you are falling, very slowly, à la Alice in Wonderland. Alice fell continuously through the rabbit hole; you fall continuously, at every conceivable juncture of your own home.

It’s surreal. Your legs are running away from home. You can do nothing to stop them.

When you “land,” you are spread-eagled, one leg in the garage and the other leg in the laundry room. It’s a complete split, with the doorjamb pressed up against your crotch. Nadia Comaneci couldn’t get out of this position. But you don’t call Jim.

It takes you almost a half hour to unwedge yourself. You feel like a parked car, with two cars sandwiching each bumper. As though you were a car getting out of such a spot, you do a fifty-three-point turn, inch by inch. By the time you free yourself from the doorjamb, you are sweating—but relieved that you don’t have to put Jim through the trauma of finding you grimacing in the cheerleader position.

THERE ARE MANY
falls in the bathroom. Once, feeling spunky, you try standing up in the shower on your own. Without using the shower chair, without anyone else in the room for support. You’re feeling lucky—you want to feel normal again. People who have had strokes do give themselves showers. They do.

At first, it works. Your hair feels good—there’s shampoo in it—and your body feels slippery. The water is hot. You lose track of time. Then you notice the tub rim hurtling toward you.

Your guardian angels take care of you, though, because you miss banging your head on the corner of a metal table by a few inches, hitting only the side of the tub with your neck. You’re sprawled over the side. Everything has stopped but the water.

You feel your body when the shock wears off, and you definitely haven’t broken any bones. But you have a hellacious time getting up. Water and bubbles everywhere.

You don’t call Jim.

He would freak, and you’re not too crazy about letting him see you as a human mop, washing the floor with the front half of your body, naked, with suds all over you. It might take him a while to get past that picture.

Half an hour later, using the shower chair as your anchor, you are back on your feet. The bathroom looks like a lake. You check the mirror; you look like a beached whale. It’s a mess, but one thing is certain: You’re clean as a whistle.

YOU TRY THE SAME
shower maneuver the next day.

You get the same result.

Actually, you don’t get
exactly
the same result. This time you shoot out of the tub as if someone had thrown you across the room and land all the way on the floor. You pick up quite a bit of momentum.

You are completely wedged up against the door, in the corner of the bathroom. It is so slippery that you have no chance whatsoever of getting up.

It’s no use.

You have to call for help.

As you lie there, you recall a Valentine’s Day card Jim made for you; it read, “Julia, A to Z.” V was voluptuous; P was pilose, a soft covering of hair, referring to a Latin man at work who used to stroke your arm and say, “I love your hair.” You had to get a dictionary and look up some of the silly love words he used: Z was for zaftig, meaning Rubenesque.

Maybe those letters would have different words attached to them now.

JIM HAS BEEN BATHING
Rory in his bathroom; you don’t want to alarm either one of them, so you try to keep your tone light: “Honey, I need your help for a second.”

When he hears you, Jim rushes to the door. He’s terrified, and you know it.

He can’t open the door—it’s unlocked, but your voluptuous zaftig body is blocking it like a dead bolt.

“I’m fine, I’m fine I’m fine I’m fine.”

You can tell he is panicking; you keep trying to explain that you are okay, you just can’t get up. He starts pushing the door with all his strength. You slide enough for him to squeeze through.

Your legs are up the wall. Bubbles are everywhere. You look like you’re posing for
Playboy
. Sexy sexy.

You laugh.

Jim’s not laughing though. To him, you are still a disaster in the corner, possibly injured. He stares at you. His face is white with panic.

“Okay,” he gasps, “what do I do?”

“Hey, there,” you say, with a provocative wink. “I’ve been waiting for you all of my life. Don’t you want to jump my bones?”

YOU ARE SITTING
at your desk. The computer screen is glowing. The cursor is blinking. Nothing is happening.

You had been thinking that you would be able to get employment somewhere down the road, but you realize, after an hour at the desk, that you simply no longer have the mental tools to put a portfolio or resumé together. You can no longer organize. You can no longer multitask. You can do one thing at a time, and you can only do that if you are paying very, very close attention. The policies and procedures you wrote before your stroke were, you realize, really composed by someone else. Someone you used to be.

This, the doctors tell you, is a result of the stroke. It’s what happens when you have a brain deficit. Your ability to put things in sequence, and then handle them as they need to be dealt with—that sense of organization—has been lost with your stroke. That part of your brain has basically been blown to pieces. This is a big part of the reason you’re regularly overwhelmed by fatigue from basic personal tasks like getting dressed.

Your days of being on the phone with a customer, working at your computer, and listening to one of the support reps at the door, all at the same time, are over.

You stare at the computer, at the empty screen and the blinking cursor waiting for you to take action.

You switch it off.

RORY THROWS
a ball to you.

You are trying to get your left hand to work, trying to develop hand-eye coordination again. You watch the ball as it rolls on the floor to your son and try to pick it up in midair as he tosses it back. You want to make the left side work, and you want to include Rory.

He tosses.

You drop it.

He picks it up.

You roll it back.

He tosses.

You drop it.

He picks it up.

You roll it back.

Rory likes the game.

YOU HAVE DEVELOPED
all kinds of little projects to improve yourself. You want to increase the strength in your hamstrings, which are very weak. You are leaning forward on a chair and Rory is behind you, lifting your leg up patiently, helping you improve your resilience.

“A little higher.”

He lifts it higher.

“Okay, higher.”

He pushes your leg up over his head—and then he drops it.

There’s no time. You have no control. It’s just like an anchor; it smashes into the tile floor with your toe pointing straight down. You fall to the floor. The pain is excruciating, and even with Rory there, you can’t help letting out a little howl.

The toe, you realize, must be broken.

Rory is crying.

You can’t even speak, it hurts so much. Your left side is hypersensitive to pain.

Jim rushes in. He heard the noise.

You think,
It’s going to stop—the pain will stop—and then Jim is going to help me get up—and then I’m going to get this hamstring strong again—and I’m going to walk like I used to.

Rory is still crying. Jim is comforting him while pulling you up from the floor. At least somebody can still do two things at once.

Maybe lifting your leg isn’t Rory’s job.

ONE PARTICULAR OUTPATIENT THERAPIST
at the center never seems to click with you.

The two of you don’t manage to establish good chemistry, and you realize now how important that is for people who suddenly find themselves in a relationship with a therapist. One person might be great for person A but not for person B, and you find with this therapist that he must have assumed that you were in la-la land because you always talked about getting better.

His attitude—like that of so many of the caregivers you have inherited—is basically, “Well, you just have to learn to deal with what you have.” Maybe there are some patients who need that kind of approach in order to figure out how to deal with their situation. But there are other patients—you, for instance—who are willing to fight, willing to step out of the box and not set the ceiling for themselves.

“You know,” you told him yesterday, “if I took the attitude you’re recommending—‘Learn to live with what’s left’—I’d still be in a wheelchair, drooling. I’m going to Rollerblade with my son.”

He says, “Yeah, well, there are ceilings in this life after something like a stroke happens to you.”

THIS MORNING,
you actually say to him, “My ceiling is only blue skies. When I look up to the sky I know that I have so much more improving to do. I’m a work in progress, as everybody is, and I’m not going to give up.”

He looks at you over the top of his glasses and says, “Okay, I respect that, but what, specifically, does it mean?”

“It means I am disappointed with my gait. I find myself staring at people walking, trying to relearn the mechanics. I really feel labored when I’m walking, and I want to get that heel-toe action going, but my toes don’t work. It means my heels really don’t work either, which is weird because, I mean, what do you need your heels for? That’s what I thought before all this. Well, you need your heels to strike the ground and then you press off with your toe. Mine don’t work. Also your heel is very handy for keeping you stabilized and balanced, and because mine is impaired, I have balance blind spots. My heel on my left side has caused more backward falls for me. I have a lot of backward falls because of my heel not having the proper sensation or strength.”

He nods a little.

“It means I’m not done yet,” you continue. “In fact, I’m not done getting better until I’m in my grave. My epitaph may say ‘Okay, I’m done.’ Please don’t act like you’re done with me. We need to work on my gait.”

He nods a little again, the same way.

THE TWO OF YOU
work on your gait, but you can tell that he is getting frustrated.

He has broken your gait down to four components. It’s not that you don’t understand his instruction. Your left side simply won’t listen to your brain’s instructions.

Therapists have certain measurements, and one of them is for the Achilles tendon. Yours are very, very stiff on both sides, and that is related to two things. Some of it is due to the stroke, but most of it is related to a surgery you had on both your heels back in 1990 and 1991 that moved your Achilles tendon to remove some golf-ball-size bone spurs. That contributed to the tightness in your heels. So your foot movement is limited, and when he measures, there isn’t much improvement.

You ask, “What do I need to do?”

He sighs.

BACK AT THE HOUSE,
on your own, you hang off the steps from your toes, holding on to the railing and just letting your heels stretch that way. The tightness is intense. It almost feels like your heels are tearing away.

But when you check your heel range, it has improved—the tiniest bit, but it has improved.

YOU RELUCTANTLY CONSENT
to more chemotherapy. Dr. Jerk is hammering his diagnosis and treatment to your neurologist. Dr. Neuro is still working on a diagnosis, getting facts and dismissing possibilities via testing. Being unclear of causation, he diplomatically states that he can’t rule out Dr. Jerk’s treatment and suggests that you consider following it until he has more conclusive information.

Dr. Jerk writes the prescription for a high dosage of the chemotherapy drug, Cytoxan, potassium (to ensure hydration), and Mesna (an antinausea drug).

YOU WILL BE AN OUTPATIENT
for the day. It will be a ten-hour session. Then you can go home for a while.

The outpatient infusion room is a dismal, depressing place. The atmosphere is austere, and the reasons people are there never make one feel optimistic. You need a total blood count prior to the infusion. You have to wait over an hour for the blood work results. You have lots of company.

You envision a skull and crossbones right on the bag. You have to go to the bathroom constantly because of the hydration. You have to do it right there next to the bed. You have to wait for the nurse to help you struggle off the bed and onto the little potty; meanwhile you have another patient right next to you on the other side of this thin veil of a curtain. Everybody in the room can hear exactly what you are doing. You do what you have to do.

Why is it that the curtain supposedly used to create privacy only causes more interest in what’s going on behind it?

The curtain doesn’t close completely; there’s a wide gap at the ends. There was a time when that would have bothered you. But once you have been in the hospital and had enough things done to you, you learn to just stare at the curtain and pee.