Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (17 page)

YOUR LEFT SIDE
is already paralyzed and not working, but your right side goes into deep spasms whenever the physical therapist starts working with you. You are in excruciating back pain and your neck is in a chronic state of spasm. You decide that you have to find other methods of alleviating the pain without increasing your medications.

It happens one afternoon, when you are seated in your headquarters, that you knock the big phone book onto the floor. You curse your spastic left arm, but then notice that the page has opened to the acupuncture listings. You stare at the book on the floor. You stare at your spastic left arm. You find yourself thinking about angels.

Then you pick up the phone, punch in a telephone number from the phone book, and set up an appointment.

HE’S FRENCH;
he’s been to China; he’s learned all types of treatments; he promises to help get your body well. You love that he is confident that he can help. You sense serenity and a positive presence in his office.

“I recommend adding electric stimulation through the needles,” he says. “I’ll target the nerve endings. This will not only be good for pain control, but it will break up the tone in your muscles and stimulate some sensation in your nerve endings.”

You trust him instinctively, but you’re still not sure what to expect. “I have a whole body of pain problems,” you say. “Am I going to look like a porcupine? Will I be so electrified that I could light a stadium?”

He laughs. “No, no. It doesn’t work that way.”

He explains the whole thing: The needles don’t cover your body; they’re strategically placed at particular pressure points.

“Will it hurt?” You know all too well that you can handle pain, but you’d rather not be surprised.

“It’s going to be a little prick, then you’ll feel the electric stimulation, and then you’ll relax with the needles inserted for about twenty minutes.”

“Good thing it’s not a big prick. I hate pricks. Listen, what you just described sounds dangerously like sex. I’m not sure my husband is going to let me come back!”

He chuckles. Thank God. If there’s one thing you’ve learned from your therapy it’s that not everyone who treats you appreciates your sense of humor.

HE ASKS QUESTIONS—
where the pain is located, what your medical history has been, how you feel about the treatment you’ve received so far. Only Dr. Neuro has shown you this kind of concern. You talk for a long time, you explain how you hurt everywhere, but currently your back and neck are in severe spasm.

“Julia, when you’re resting with the needles, I want you to envision yourself walking—even running. It’ll be exercising your brain and helping your body to remember. It’s almost like physically doing it.” You nod.

He seems wise.

AFTER A FEW SESSIONS,
he can sense the different areas where the muscle tone is causing pain.

He puts tiny needles in your head that promote circulation to the injured area where your surgery was (a section of your skull had been removed and surgically reattached). It’s amazing how it helps, but like the deep-tissue massage, the relief it brings is only temporary. If you had a localized injury, the needles might help more in the long term. A neurological injury is a different animal altogether. But even short-term relief is a blessing.

FOR ACUPUNCTURE
treatment to work, you have to put your mind into it as well as your body. Going in for your treatment, you have to let the world stop and concentrate on the healing process. You have to remove all the clutter from your mind. You often hear people say, “Oh I tried acupuncture and it didn’t work for me.” But you quickly learn that you cannot go one time and expect a miracle. You need to go over a period of time, and you have to go with an open mind and not just expect that these needles are going to cure you. You need to make the conscious choice to put your mind and your own positive thoughts into the healing process. You can’t just walk in the door for a treatment and then a cure happens. You have to work with the acupuncturist. It’s up to you how much you get out of it.

In fact, you realize, that’s the way it is for just about anything you involve yourself in these days.

YOU AND JIM
schedule it so that you have PT, OT, and speech therapy all in a row; that means you go in for the morning session and stay there through the afternoon.

The sessions are about forty-five minutes apart, and eventually include pool therapy, which you resisted at first. Getting into a bathing suit, you knew, was going to give you another stroke—not because of the difficulty of getting into the outfit, but because of the emotional reaction of seeing yourself in a mirror decked out for the beach! The bathing suit was an exercise in itself, and often you would have to rely on strangers for help. It’s simply impossible for you to squeeze yourself into a suit with one functioning hand.

THE POOL THERAPY.
Exercise in the pool, it turns out, is important, because in the water you can correct yourself without destroying your knee. Your knee really suffered from hyperextension, and stabilizing it is one of the things that you must work on constantly.

The calibrator. It tells them how strong your hand is, how much you can squeeze, how well you can use certain fingers, and how strong each finger is. The results are not good, but you say to the therapist, “Okay, that’s why I’m here and I’m just going to improve on that.” The therapists are blown away by the strength of your unaffected hand. They can’t even use it as a comparison point for what the affected hand should be able to do, because it’s stronger than that of most men.

The mirror. They have a full-length mirror on wheels that allows you to look at your left side. This makes the exercises easier to perform, because you can visualize what you’re supposed to be doing and mimic your right side.

The parallel bars. Holding on for dear life.

The hand bicycle. It has pedals for the arms; you pedal the chain. Your hand won’t stay on the handle, so they have to tape it in place.

The neck contraption. You lie on your back with a metal halo on your head to stretch the spasms in your neck. It looks—and feels—like a torture device from the Inquisition. But, oddly enough, it does help, and you quickly become addicted to this evil-looking prop.

THE THERAPIST
makes you pick up pegs of different sizes and place them in little slots. The game is similar to checkers. You have to pick them up and place them where they belong. It’s clumsy and uncomfortable, and your fingers are twisted like pretzels. You can tell that you have sustained major damage just by the awkward way your hand holds the pegs.

SHE MAKES YOU
hold a cup of water in your weak hand and attempt to drink. You soak yourself. She hands you another cup. It’s plastic, not paper, because your hand is so spastic it crushes a paper cup before it gets close to your mouth. You’re enjoying this about as much as being the target in the dunk tank at a carnival.

“If I had known that you had this soaking exercise planned, I would’ve skipped the morning shower. Jim could’ve used the break from bathing me!”

YOU GO THROUGH
a couple of replacement therapists; you could tell if they were innovative or not, and there are times where you feel like saying, “You’re just going through the motions.” But you keep it to yourself, because there are times now where you know it won’t help your cause to speak your mind. You need each therapist to fight for you—to write letters to doctors and insurers and explain why you need more therapy.

As it stands, you’ve had a long hiatus from therapy because of insurance problems. You know that if you’re not careful, you will basically fall into a black hole. No matter how good the chemistry feels, no matter how nice the therapist is, you realize that if you stop making progress, one of these people will write you off and be done with you. There is no real relationship—you are both at work. They may act as though they care about you enough to make sure you keep getting what you need, but you can’t assume that’s the case. You watch your mouth.

YOU ASK THE THERAPIST
to test your left hand so you can see how you’re doing.

She measures your hand strength once—then once again to make sure she got it right.

You’re getting stronger. Pretty soon they’re going to put your picture on a box of Wheaties!

THE SECOND PHYSICAL THERAPIST
you inherited is trying to discharge you from the outpatient program.

If he does, that means your treatment is over.

Therapy makes you accountable for progress, and that is what you want: to be accountable to someone other than yourself for making headway over the effects of your injury. It really helps the psyche when you know you have to own up to someone who can tell whether you have been doing your exercises by how much you’ve improved.

Today you are in the pool having your therapy when your primary therapist comes in and announces that he does not want you to have any more one-on-one therapy in the pool.

You look up at him.

“Why is that?” you ask.

“Because,” he says, “you’ve had one-on-one therapy for an extended period of time and I need to make the pool therapist available as a benefit to others.” It comes out so smoothly you know he’s rehearsed this little speech.

About half a dozen other patients are staring at the two of you, waiting to see what will happen next.

“Well,” you say, after splashing the water with your hand a little for emphasis, “I feel that you are not articulating your reasons in a manner that I can or will accept.”

You may not have rehearsed this, but it seems to be coming out without any difficulty.

“I feel,” you continue, “that you should not be saying things like, ‘as a benefit to others.’ We are talking about my therapy, which means we are talking about
me
, and
me
is the reason I am here.”

You’re getting a little worked up, but so what.

“So,” you say, “you don’t tell
me
that you need to help
others
instead of me, because
I
am in therapy and
you’re
getting paid as a result of that therapy. It’s not that there’s a problem with the insurance. It’s not that the money isn’t coming in. It’s not that I’m not making progress. The problem is really stupid: I’m an inconvenience to you. From your point of view, I’m taking too much time to get better. Well, I have a feeling that some people are just a little too resigned to the fact that a patient has had a stroke. I have a feeling that some people are a bit too eager to get patients to say, ‘Well, that’s probably the best I can do, that’s how it is going to be.’ That’s
not
how it is going to be. I’m making progress—you know it, and I know it. As long as I’m making progress I’m
not
going to say ‘That’s how it is.’ Your goal right now seems to be to discharge me, not to help me get better. You know what that means? It means
you’re not doing your job.
You’re supposed to be my advocate, and instead you’re spending all your energy trying to get me to be as apathetic about my progress as
you
are. But if
you
were here in this pool, would you be satisfied with the current return that you had in your legs? Would
you
feel like you’d gotten your money’s worth before you’d learned how to walk again?”

His eyes are narrow now and his lips are tight. He turns on his heels and walks away from the pool.

“
Excuse
me,” you yell after him, “I asked you a
question
.”

But he’s gone.

The other patients in the pool start applauding, and the noise echoes satisfyingly around the water and off the walls.

YOU ARE WILLING TO TRY
anything to get better, to go down any avenue if it holds even a shred of hope to return you to the way you were.

Nancy’s mother is a volunteer on a prayer line and is associated with a priest known for administering healing services. He is scheduled for a Saturday afternoon service in Boston at a church in Mission Hill. Nancy says you should go; she insists that her daughter Alison had experienced the healing power from Father McDonough at a service.

Getting into Nancy’s SUV, you realize that your body becomes very rigid, just like a stick. Jim picks you up like you are a log and tries catapulting you into the car. Mom is in the backseat and Nancy is in the driver’s seat and you’re being rammed into the car, the proverbial square peg in a round hole. You’re laughing hysterically, which makes the rigidity problems worse.

Somehow he gets you into the SUV. With that, you’re off to get healed.

IT IS A LARGE CHURCH
and there isn’t a parking lot. You and Mom go to get seating while Nancy parks. You find an empty pew in the front on the right wing of this cavernous holy house.

You have never been to this type of service and don’t have a clue what to expect. Are you going to walk out of this place healed, as if nothing had happened to you? You’ve seen movies where that happened. You know it is unrealistic, but a piece of you is hopeful anyway. You expect a miracle.

Nancy approaches you. In a stage whisper she says, “Come on. Father McDonough wants to see you.”

“We can’t lose these seats, we’ll end up in the back.”

“Come on, come on. He’s waiting for you.”

You and Mom follow Nancy reluctantly, passing the front of the altar and heading toward a doorway into the vestibule. There are five or six other ill people seated with their companion standing beside each person.

Once you’re in the vestibule, Father McDonough stands over each individual and asks why he or she is there. After listening quietly, he puts his hand on the person’s head and says a prayer. The atmosphere is solemn. Once he has touched and prayed for each ill person, you all exit the room. As you exit the vestibule, you see the church is packed, but the very first pew in front of the pulpit is empty. You think there must be a “Reserved” sign up there for someone, but there isn’t. The three of you settle into this pew, not entirely sure why it hasn’t been taken yet.

Father McDonough stands at the pulpit and mumbles prayers over the microphone; the congregation is supposed to repeat after him. You can hardly understand what he is saying. He is so old and he moves and speaks stiffly. He reminds you of a robot. You whisper to Nancy that maybe he should go to a healing service himself!

The service chants quickly go to the background of your mind. You’re thinking, “A few months ago, I left home one day to go to my job, and now, I’m sitting in a weird church in a tough suburb of Boston listening to an old guy drone on. I’m sitting here looking for the miracle that will make it the way it was before my stroke.”

You feel splintered and the current environment makes you feel like you have multiple personalities. You have to keep blowing your nose. What the hell are you doing here?

YOU STAY
for the entire service. Three hours.

If you weren’t in enough pain when you arrived, you are in agony by the end of the service. It’s monotonous and you hurt. Some healing.

After all the chanting is done, Father McDonough starts going around the church and touching people, and people are falling backward in the aisles. Every time he touches someone, they crumple into a heap or fall backward. Maybe the miracle is that no one gets hurt when falling to the floor. Each person falls, light as a feather.

You don’t understand. You think it’s an act. You’re dubious. You keep waiting for a huge thud from a falling body and whoops of pain.

When it is your turn to receive his healing touch, you brace yourself. No way are you dropping.

Father touches your shoulder gently and you stand, solid. He touches your shoulder again, this time with negligible force. You stand your ground, firm. He pushes you more firmly a third time, but the healing spirit, whatever it is, isn’t entering.

You are ready to get into a shoving match with him, except he is so frail you feel you can blow him over and
he
will crumple! Inside, you’re screaming, “Yeah, okay, you touched me, so what? I’m still wearing a sling on my arm, still have the brace on my left leg, and I’m still paralyzed on my left side.”

You wish you could have shed the sling and brace, tossed it gleefully on the altar, run out of there like they do in the cartoons, thrown your hands in the air, yada yada yada. It’s not happening.

YOU AVOID LOOKING
around the place; you’re not eager to see the pain of others. There is this one woman, though, who catches your attention. She is an Asian woman located three pews behind you, and when Father McDonough goes to touch her, she falls backward in the pew. You have watched the whole thing and you wonder what is wrong with her, and you can tell that she is with her husband and son. You want to respect her privacy but you can’t stop yourself from watching. You feel like a voyeur staring into this woman’s world and wondering what her illness is.

Mercifully, the service ends, and you head for home.

During the ride home, you ask Nancy how you came to be chosen for a private consultation with Father McDonough. Did her mom arrange for it somehow?

“No,” Nancy answers, “it was so weird, Julia. Mom didn’t even know you were coming. I came into the church after parking the car—right in front, by the way—and Father McDonough was in the back of the church. His back was to me, so I put my hand on his shoulder. Without turning around to face me, he said, ‘Bring her to me.’ That was it. Is that weird or what?”

JIM GREETS YOU ANXIOUSLY
in the driveway. You realize he had been visualizing you walking out of the church as you once were. Maybe he too had been secretly hoping for a miracle.

But he takes one look at you and knows nothing has happened.

With mock glee, you shout, “I’m healed, I’m healed. I just have to wait until my hair grows back.”

You glance over at your mother’s car and see the whole front end has been smashed.

“What happened to Mom’s car?”

Jim explains sheepishly that he had forgotten where her car was, and had backed into it, crushing the hood and grille. He’s embarrassed; Mom had offered to move it before you left for your mission in Mission Hill. Mom drove away in a broken car, and you entered your home with your same old broken body.

“Since the healing service didn’t work,” you ask, “let’s try this: Take me to the body shop and leave me there so I can get fixed along with Mom’s car.”