Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (16 page)

MS. INYOURHOUSE-OT
is followed by Mr. Inhouse-PT.

He is much more aggressive. He is the jolt you want and need. He is the missing ingredient. Mr. Inhouse-PT was actually on a hiatus from his job at the hospital. He will eventually go back to his day job. What was that? President of a hospital!

He has gone back into physical therapy just to take a break from the stress of running a hospital. His goal, he tells you, is to get back to the basics. You can sense that he loves what he was doing, and that he is enthusiastic about it. He really knows his stuff. You can’t wait for him to come to work with you. Having him ring your doorbell is the same thing as someone saying to you, “You’re going to walk today. You’re going to get stronger today.”

HE HAS YOU DOING
floor exercises on the very first day. He is a superior cheerleader and great at prompting you to do more than you thought you could. He gets down on the floor with you, barking out the count and saying stuff like, “Come on, you’re going to run around the block next week. Keep it up. You’re strong. You can do it.”

This is exactly what you wanted. This is exactly what you were looking for.

ONE OF THE REGULAR EXERCISES
involves walking around the island in your kitchen wearing your Keds sneakers—and without a brace. This means you constantly hyperextend your knee and turn your ankle as your foot and leg flop along on the hard surface.

It is difficult, and it doesn’t feel great, but the mere act of putting on your sneakers in preparation for this exercise now gives you an enormous boost. You remember when you were a kid, Keds used to advertise that their sneakers could make you fly. Here you are, a kid again, getting ready to fly with your winged sneakers. It’s actually a dual-purpose exercise: In addition to the walking itself, you need to learn to tie a shoe with one hand. It’s laborious, but you give thanks to God for giving you the ultimate motivation: hope.

Your mom is always at your house babysitting you and doing laundry and household chores while you do your exercises. All the while, she observes your sessions with the aggressive Mr. Inhouse-PT. You know she believes he’s pushing you too hard. You assure her that you love his approach and feel good—even though all your joints hurt.

Whenever you learn a new trick, you call out to her like a young kid: “Hey, Mom, look at me! Look at me! Give me a piece of gum and then I’ll be multitasking.”

Despite your pride in what you’re accomplishing, your gait is really pathetic. Several times during the exercise, your knee will hyperextend inside out. It isn’t pretty to look at and it doesn’t feel great, but it is getting better. As bad as it looks, as much as it hurts, it is better than it was yesterday.

THE PHYSICAL THERAPIST
has put you next to the sink to do toe raises. Your right foot keeps taking over, leaving your left foot dangling.

It occurs to you that people don’t realize how important their toes are. Leaving aside the fact that they are located low on the body, toes are shamefully low in the body-parts hierarchy. If you tell someone you have a broken toe, it doesn’t elicit anywhere near the sympathy as telling them that you’ve just broken your leg. And yet, it can be just as debilitating. These seemingly insignificant body parts at the end of your feet, you now realize, hold the entire weight of the body up. They are what allow you to stand erect. If you don’t have working toes, your balance isn’t correct, and you can’t walk. Your toes do a great deal to control your feet and to help direct the rest of your body.

You make a mental note to tell everyone you know that they should love their toes and treat their toes with respect.

Mr. Inhouse-PT sometimes takes you outside so the two of you can walk around the island in the cul-de-sac where you live. You are certain that you’re quite a sight for the neighbors. You have a sling on your arm, a shadow of hair stubble with a big surgical question mark on your head, a castlike brace on your leg, and your cane Steady. You’re walking like Frankenstein, except your balance isn’t quite as good.

THE PT IS NOT
actually working on your gait, so it doesn’t matter to him how stupid you look as you walk around.

What he’s working on is building up your stamina. You are weak and tired from your hospitalization and he knows it. Some of this fatigue has to do with the medication you’re receiving. A lot of it is simple physical exhaustion from the hard work of trying to reclaim your body and your mind. It takes an enormous amount of energy to do the smallest task, like getting out of a chair.

The fatigue you feel is a major detriment to the quality of your life, and the physical therapist knows it. So, he’s trying to help you build your strength up.

You have no control over the sudden onset of fatigue in your life now, and you hate it. You never took a nap before in your life, but now naps are necessary and impossible to avoid. You always feel groggy and drugged when you wake up from a nap. You don’t have the refreshed feeling that Mom says “rejuvenates” her after a twenty-minute “power nap.”

YOU ARE DETERMINED
to get better.

You have a basket placed next to your chair. The basket contains different strengths of putty, a variety of children’s toys, and a few sand balls for squeezing. The putty is different colors, reflecting the strength and resistance.

The OT puts pennies in the putty and your job is to work them out of the putty with your now-useless hand. Now, if she’d put diamonds in there, you would be a lot more efficient. One of the toys in the box is a block of wood with a series of holes. There’s a peg attached to a long piece of string. The object is for you to thread the peg through the different holes with your bad hand. It’s a toy intended for three-year-olds, not thirty-seven-year-olds. But, you don’t care about the intended audience. You only care about getting whole again.

The exercise is supposed to help you with dexterity, but you find it extremely difficult. You keep thinking that you can will yourself to do it but you eventually have to admit that you have no power to pull this particular trick off.

At the very least, you think, it builds up your strength for the next day.

SPONTANEITY IS
no longer part of your world.

You have to have everything methodically lined up and planned out with great effort and great will. You cannot just thread the peg through the holes in the wood. You must focus with laserlike concentration on the task and carefully issue orders to your hand and to your mind.

It is as though breathing suddenly became a conscious activity that you have to choose to execute, rather than something automatic.

In order to perform the simplest tasks, you must retrain your brain to be organized in the way that it no longer is. This is to compensate not only for your one-handedness, but also for your memory.

It changes the way you cook, the way you walk, the way you pick up a glass of water. You hate it. It makes you sad.

Cooking in particular, it turns out, is now an extraordinary downer. You decide to put the task aside for a while, with the intention of doing it at some point in the future with Jim. There are so many other areas for your body and your mind to retrain. Time to keep the frustrations to a minimum. Time to accomplish something so you can move on to the bigger things.

Time to try simpler tasks.

YOU ALWAYS ATTEMPT
to open a door with your affected side. Your left hand has to do the work. That means it usually takes you several minutes to turn the doorknob, a job that took you less than a second and barely a thought in the days before your stroke.

At his tender age of three, Rory always waits patiently. He has a sense about him. This morning you, Rory, and your mother are headed somewhere and you are hindering the exit by trying to turn the doorknob on your own. Your mother and son stand behind you and wait patiently for you to open the door by yourself. Your mother knows how important it is to you. It takes you at least five minutes to get the handle turned enough for you to open it. Once you have won the doorknob battle, Rory smiles, turns to your mother, and gives her the two thumbs-up gesture. That simple, innocent gesture melts your heart and inspires you to do more.

YOU ARE IN THE BATHROOM,
and you are standing there in the dark. You make a promise to yourself: “I am not going to go to the bathroom until I can turn on the lights in here.”

You have been struggling with it for several minutes when Jim happens to walk past you in the hallway. He flicks the switch without missing a beat. You are stunned, because you were determined to achieve the goal, and he removed the conquest without even realizing it was your battle to win. For a moment you are angry, then the absurdity of your situation sets in, and you start to laugh. He comes back and asks you what is so funny. “Never mind,” you say. You close the door and plop down on your geriatric toilet, which has a higher than normal seat and handles on either side.

YOU HAD OVER TWENTY VISITS
each with the occupational and physical therapists. That is what your insurance allows before you get sent to outpatient care. Each step is a new adventure for you, and the question that is always on your mind is, What’s next?

When you run out of visits, you do not want to run out of what’s next. You are on a journey that doesn’t end at twenty visits. You arrange for a visit to a local rehabilitation facility that, as luck would have it, is just over a mile from your house.

THE LOCAL REHAB PLACE
really is convenient; Jim drops you off and Mom picks you up. Your first session is with a therapist who specializes in neuro injury.

You sit down with the therapist in her cramped little office and her assistant is there and they ask you what your expectations are.

You say, “My big expectation is that I don’t want you to tell me ‘no.’ I want you to make that a dirty word. I also don’t want to hear the word ‘can’t.’ That’s dirty, too. Unless you follow it up with the word ‘yet.’”

“You mean you don’t want us to tell you no, you can’t do a certain exercise?”

“I mean I don’t want you to tell me no, I can’t do anything. That’s not in my vocabulary. I am determined, and you should know that. Don’t tell me so-and-so is something I can’t do or something I should not do yet. I have been called an overachiever. I’ve heard that several times from therapists, and I know they don’t mean it in a good way. What they are saying is that I overdo instead of doing just the right amount. So I’ll admit it. I always tend to be excessive. But that is my personality. That is how I have always been; everything I do is always over the top. My friend Berbie always calls me ‘Miss Excess.’ I’m coming back now, so it’s what I’m going to be doing in my recovery. Miss Excess. Or maybe Miss Success. Anyway, that’s my expectation. I don’t want you to ever say, ‘No you can’t.’ Okay?”

She looks at her assistant. Then she gives a little nod and says, “Okay.”

I know I sound like a spoiled brat, but I only like the word “no” when I say it myself.

BUT THERE’S A CATCH.
You can do any exercise—but they get to say how many times you get to do it.

They give you a list of exercises and they insist that you can only do a certain number of sets. You chafe at this. You’re trying to rush your body back to normal. That’s your plan.

But while they will not limit your goals, they will not let you hurt yourself on the way to achieving them.

“The thing you don’t understand yet,” she says, “is that, with a stroke, there is no such thing as rushing. We’ll help you get where you want to go—but you’ll have to do it at our pace. We will not let you hurt yourself on the way there.”

She waits for this to sink in. Then she continues.

“This isn’t a to-do list. This isn’t something you can check off. It’s your life. It’s going to take you a while to build up the strength you need. That’s a fact, and it’s not going to do either of us any good to ignore it. So you can’t do the exercises in double doses. You’re going to have to learn to build yourself back up. Slowly.”

“The only thing I’ve ever done slowly in my entire life is wake up in the morning.”

She just grins. Okay, it is one of your personality flaws. It is time for the impatient patient to get a little better at the patience game.

ALL THE SAME,
it is really tough to be somebody who wants everything done quickly and then all of a sudden is working at less than a snail’s pace.

The first thing that physical therapists do is measure all your abilities; they mark them down and then they watch your progress. This is what they use to show insurance companies in order to continue your therapy.

And it is the insurance companies, not the medical professionals, that determine what you need for therapy. You are only allowed twenty therapy sessions per discipline, meaning you can have twenty PT, twenty OT, and twenty speech sessions for the year. Those are the rules set down by your insurance plan.

It doesn’t matter whether you sprained an ankle or had a massive brain hemorrhage causing a devastating paralysis—it’s still twenty visits. Or so the rule book says.

Fortunately, you’ve got someone who will help you rewrite the rule book—Jim.

Jim is an amazing advocate, writing letters, fighting with the insurance companies, and pushing, pushing, pushing. He always wins.

You certainly have a good case: You are still improving.

That’s the thing when you’re in therapy. You have to keep showing that you are improving. If you are still getting better, then you are in luck, because the insurance company says, “Okay, if she is improving, we can’t let her go yet.” But if you are on a plateau—even a temporary plateau—they say, “That’s it, you’re done.”

So you are always pushing back at the therapists, focused on improving, obsessed with measuring your skills and proving that they are on an upward path. Your goal is always to get more and more done, to prove more and more progress, to exhaust every avenue for recovery you possibly can—so you can keep your insurance. You are completely driven.

But you have to do it s-l-o-w-l-y.

SUDDENLY YOU REMEMBER
your very first day of therapy back at the rehab hospital.

You looked at the treadmill longingly and said, “That’s what I want to do. I want to get on that treadmill and I want to be able to run again.”

You now know that it would be quite some time before you could get on a treadmill. You now know that your gait would never be the way it was. But you do not expect it to be perfect and you would like to run. Not that you’re a marathon runner or anything—you just want to know what it feels like again.

When they are doing the intake on you that first day of therapy, they had you on your stomach and they had you lifting different parts of your body. Your hamstrings were nonfunctioning at the time, and when they had you lift your leg while you were on your stomach, you couldn’t do it, and the attempt caused your back to go into serious spasms. You threw it out because you had not done any exercises with your back. You had been lying in a bed most of the time and your back had gotten very weak. It is a common side effect with people who have had a stroke: When they start therapy, their backs get seriously strained.

SLOWLY.
You are doing the exercises. And you are getting stronger. But slowly.

The therapist at the rehab center: “You’re going to have to learn to be patient. We’re going to build you up a little bit at a time. But we are going to build you back up. That’s a promise.”