Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (25 page)

AFTER EDIE WAS ADMITTED
to a nursing facility because her cancer was terminal, you and Jim used to visit her every Sunday, and Jim and Rory would play in the parking lot while you sat with your friend and chatted and laughed.

Now she has started to decline, and when you come out of the neurologist’s office, it seems very important to go visit her right now.

In the car, your mother asks whether you would rather go home. She can tell you’ve been crying.

You say, “I really think we need to go visit Edie, because I just have this feeling that it is today that she’s going to go.”

Everything falls into place. Your mother arranges for someone to pick up Rory from school and you and she drive up to the nursing home.

Edie is in fact going to die today. It’s obvious. When you walk into the room, she is flanked by her two daughters on either side of the bed.

A priest gives her the last rites. She is conscious and alert, and participates throughout the ritual. It’s a surreal experience.

You are sitting next to her. She is very thin and her eyes are big, but she is totally coherent, and you can’t stop looking at her.

Edie knew that you wanted to have another baby. She knew that you were hoping to again use all the bedding that she had made for Rory: the bumper pad, the rocking chair cushion, all the beautiful things that had made Rory’s nursery so cheerful.

You say, “Edie, the doctor told me I can’t have another baby.”

She nods and says, “You shouldn’t, honey. Think of Jim and think of Rory.”

Think of Jim.

You say, “Well, I really wanted to use your bumper pads again.”

“Well,” she says, “save them for Rory when he has a child.”

Here she is dying and you’re sitting telling her about your little problem. But it’s how you’ve always talked.

BESIDES EDIE THERE ARE FOUR OF YOU
in the room: her two daughters, Mom, and you. She says good-bye to each person individually. People take turns sitting in the chair next to her to say good-bye. It’s like Dorothy in
The Wizard of Oz
before she clicks her heels three times to go home.

IT’S YOUR TURN.
She is holding your hand.

She tells you she can see her husband on a hill and he is waving to her to come to him.

She keeps saying, “Julia, how do I get there?”

It feels close and right for her to say your name.

“Julia, how do I get to him? How do I get there?”

“Edie,” you say, “you have to do that on your own, and when you get there, what a nice welcoming it will be.”

EDIE ALWAYS HAD
the most beautiful silky white hair and gorgeous blue eyes, even at eighty-two. She was smart and she was beautiful.

As soon as her soul leaves her body, her body becomes a shell. You stroke her hair, like you did on so many of your visits. Her once silky, snow-white hair appears to yellow instantly. It suddenly feels like hay. You notice her gaping mouth and see that her bright smile is gone and that her teeth seem to have darkened abruptly.

You think, “That’s it, that’s what it looks like. Her soul is gone and this is just a shell.” Edie isn’t in the room anymore. Only a shell.

DURING ONE OF YOUR LAST
visits with her, you had asked Edie to send you a sign after death that she was okay. You told her that, if she felt like it, she could send you some money from the other side.

She always called you “honey.”

Your father drives you back home. One of Edie’s daughters has given you a little Winnie-the-Pooh bear to give to Rory. That bear is in the car with you and Dad. You bump it accidentally, and it says, “Have some honey, my friend.”

You’re startled. It’s as if Pooh Bear had come to life.

It’s Edie, so Edie. It’s her saying good-bye.
“It’s okay, honey. Think of Jim. Think of Rory. Honey, it’s okay.”

And that’s what she’s saying now, somehow.

DEALING WITH THE FEELINGS
of grief you have after Edie passes is a blessing.

The grief for her makes you put aside your issue about not having another baby. You can’t allow yourself to be thrown into this depression. You have to deal with your emotions about Edie. And you have to think about Jim and Rory.

It’s her gift to you.

PAUL AND GLENN SUGGEST
taking a trip with them as a diversion for the whole family from the rigors of stroke recovery. Paul decides on Disney World. You think, why not, it’s known for fairy tales—maybe you can make believe none of this ever happened. But you’re apprehensive about going on the trip, what with the logistics and stress of traveling. Besides, being out of your element makes you uneasy. Paul reassures you. “Disney’s perfect for you. They treat cripples great.”

“You’re only bringing me along to get a free pass to the head of the line,” you say as a retort.

On the ride to the airport, you realize that you left your medicines on the kitchen table at home. You know you can’t go without them, but you’re afraid to own up. Finally, you do. Jim, agitated, turns the car around to retrieve the life-sustaining drugs. You think to yourself that this is going to be some trip.

Jim’s completely silent.

This is his expression of anger. You want to scream, “Let it out! Let it out! Yell at me! Get it out so your blood pressure doesn’t rise and then you have a stroke. Just yell at me.”

From the backseat, squeezed between the luggage and Rory, Dad says he’s never seen Jim so mad and notes that this silent treatment is much more effective than Mom’s barking. Dear old Dad, ever the antagonist.

You arrive at the departure gate just as they are closing the hatch. This creates quite a stir for the passengers packed into the plane. As you hobble down the aisle to take your seat, you can feel all eyes on you. The scramble to make the plane exacerbates your stroke deficits. The left side of your face is sagging, and you’re drooling. Your left arm is extremely spastic, flopping up and down as if attached to a puppet string. Your leg is stiff and hurts from being crammed under the seat in front of you.

By the time you arrive in Florida, you feel bent and twisted like a pretzel. The flight has taken more of a toll than you could have imagined. You stay positive though and look forward to better things to come in the land of magic. And the magic happens as soon as you arrive at the beautiful resort. Upon checking in, you are informed that your party has been upgraded to your favorite ride—the concierge floor—where food magically appears at breakfast, lunch, and dinner, with snacks and drinks in between. What luck, you think, as if your stroke has somehow led to this good fortune.

YOU THINK YOU’RE
in pretty good shape for someone who has had a stroke. You had been doing a lot of walking around the neighborhood back home in anticipation of the trip, but you sense right away that you’ll need a wheelchair to get around. Being out of your own environment and in a strange, albeit wonderful place puts a strain on you physically. You eye the wheelchair and balk at the thought of surrendering to it, but if you don’t use it, your whole party will suffer. Every destination here requires a lot of walking and you know you’re just not up to it. You set aside your pride and resign yourself to planting your ass in the chair with wheels.

As you approach the Star Wars ride there are warning signs posted at all points of entry about the risks to people with health issues. You have just become Disney’s worst nightmare. You’ve arrived at the gate in a wheelchair, a leg brace, and a neck brace, with every intention of going on this ride. The nervous attendant takes one look at you and says, “Please, ma’am, we recommend that you don’t go on this ride.”

“Why? I’m going to defend the ship as well as anyone else.”

“The ride bounces you around a lot, which might not be the best thing for you.”

“I know, but it’s a risk I’m willing to take to claim victory over the dark forces. I’m prepared for battle. As Yoda says, ‘Don’t try. Do.’ And that’s what I’m doing.”

The attendant is licking his lips, and if his eyes get any wider, he’ll lose his eyebrows completely. Apparently, it isn’t part of his training to allow disabled, yet fully armored, patrons into his fleet. He excuses himself and returns momentarily with his supervisor. The supervisor reiterates that you should forgo this ride.

“I’m going on the ship—my family needs protection. Do you want me to sign a waiver that you are not responsible?”

“No, that won’t be necessary, but we want you to understand that you may be at risk of injury.”

“I’ll take my chances. May the force be with you.”

IN THE AFTERNOON
you and Rory go to the pool for downtime, while Jim goes for a run.

Rory immediately heads to the long, serpentine pool slide. After a few runs on his own he begs you to do it, too. Although you’re leery of trying it, you consent because you want to show him that you can do anything you set your mind to. You hobble across the boardwalk and climb what seems like an endless set of stairs. The lifeguard tells you to sit and you use his shoulders as a railing to get into a seated position. You’re sliding. Swoosh, into the pool below, water shooting between your legs and up your nose. Still submerged and trying to right yourself, you are sent flying. Mayday, you’ve been hit broadside by a torpedo. An overly anxious kid didn’t wait the requisite interval and came immediately behind you, slamming his feet into you as you were struggling to your feet. You hobble back to the pool area.

Poolside once again, you settle into a latticed lounge chair. You plop yourself down, knowing full well that you are stuck there until you’re ready for the struggle to extract your weighted body from the lounger. You take note of Rory’s gleeful squeals as he splashes in the pool.

When you’re ready to get up, you anchor yourself with your left hand as you try to hoist your body up. Your hand slips through the chair webbing and smashes into the cement. You try again, now scraping your hand on the hard surface so that it bleeds. You are captive in the chair’s web, like a bug in a spider’s web.

Rory is standing by you, watching.

“Can I get the lifeguard to save you?” he asks.

“What? Their job is to save people from drowning in the pool, not to save people from drowning in lounge chairs.”

This is war—you and the chair. You are going to conquer it. Using all your might, you somehow get yourself into an upright, if unsteady, position.

After a “relaxing” afternoon by the pool, you return to your room much the worse for wear from human torpedo strikes and web entanglements.

You say to yourself, “Did I really need to come all this way to go through a day like today?” Then you hear the excitement in Rory’s voice as he talks about tomorrow’s adventures, and the anticipation in Jim’s voice as he enthuses about the restaurant you’re going to tonight. Yes, you conclude, this really is worth it.

You’re already thinking about the next adventure in the magical kingdom where dreams really do come true.

NOW THAT YOU ARE HOME,
you have not only shoe envy, but pants envy.

You see women wearing these really cute Capri pants out there, but you have to stick with clothing that has elastic waistbands with no hardware. The truth is that you basically live in gym clothes during the week because of all the time you spend at the YMCA—but also because a lot of the activewear has elastic at the waist. You usually wear pants that have leggings so you can put your brace over them, but then you found “bootleg style” gym wear. It takes a while to get used to the brace being up against your skin.

You actually like having the pant leg over the brace. When the brace is visible, people stare at you and say, “What happened to your leg?” But when the brace is not visible and you’re having a particularly spastic day and your stroke is being naughty, it looks like you have cerebral palsy. Then people don’t ask anything.

A lot of times, if you’re out shopping and you notice someone staring, you will say, “Do you want to know what happened to me?,” and that will disarm them and give them the opportunity to learn that things really do happen out of the blue in this life.

Sometimes mothers hush kids and tell them not to stare. This feels wrong to you. You wish people would explain things to children; you wish parents would ask you, “Could you talk to my child about your injury?” You feel those are learning opportunities.

MARIE ONCE SAID
to you, incredulously, “You act
happy
that you had a stroke—you treat it like a badge of honor.”

You understand her point, but you know in your heart it’s better to find some area in your life where you can grow than it is to find some area where you can complain. As for wearing your stroke on your sleeve, well, you can’t exactly hide it, can you?

You refuse to believe there is any ceiling on improving yourself whether you have an injury or not.

And you want a pair of Capri pants.

YOU HAVE SIGNED UP
to take part in a study of stroke survivors. The study is called a Personal Status Monitor.

The point is to give clinicians some sense of how well the patients are functioning at home. It’s an area that needs investigating to see what can be done to improve at-home therapy and at-home awareness of what a patient needs.

So you have these electrodes on key muscle groups: on your legs, your back, your stomach, and your arms. You wear them for hours of repetitive activities. For instance, you have to pretend you’re eating soup—it’s really a bowl of water. You have to type on a typewriter. The interesting thing is, even though you think you’re not using your left side with these exercises, the left-side muscles are showing up on the computer. It’s interesting to see what is actually becoming involved when you don’t think it is.

The hardest thing is to repeatedly pull your pants up and down. You have difficulty getting your pants around your waist with one hand; that really exhausts you. (You have shorts on, so you’re not giving the researchers a glimpse of the moon or anything. You think it would be funny, though. You could have had something like “Surprise!” or “Moonstruck!” tattooed on your rear end.)

They tell you to button and unbutton a shirt. It’s so frustrating; your real-life shirts are all sewn up these days: You can just put them on over your head. But the doctors keep telling you to button and unbutton the shirt. You’re sweating like crazy and you can feel your carpal tunnel problems worsening, but it doesn’t matter. They tell you to keep buttoning over and over again. You feel like slugging them. You feel like flipping them the bird with your left hand, but you can’t do it yet. Anyway it would be rude.

Eventually, though, you realize that if you don’t focus on the thing that’s frustrating you, it’s a little easier to do the exercise. Even if it’s stupid.

The last item on the list of things you’re supposed to do reads “bowel movement.”

“Excuse me,” you say, perusing the list, “but can we skip this one? Some things are meant to remain private.”

It turns out they just want you to pretend, to use the muscles you would normally use
as if you were
having a bowel movement.

So there you are sitting in the chair, pretending to do a number two for them, but your muscles aren’t showing up on the monitor.

“Is this exercise going to be studied by other doctors? I’ve always had a problem with constipation.”

“Push harder,” the guy behind the computer says.

So you push harder.

“Almost,” he says. “I’m just barely getting it on the screen. Try pushing a little harder.”

It’s like you’re in the delivery room, but you’re trying to leave a different kind of deposit.

Eventually, you really go for it—a full-strength, grunting, groaning, 110 percent committed, no-plausible-deniability mock bowel movement.

And this is the moment your mother chooses to walk in the room to see if you’re ready to be driven back home yet.

She stares at you there in the chair, then stares at the men at the computer monitors, then stares back at you.

“It’s okay, Mom,” you explain. “They’re paying me a hundred bucks for this. Somehow, monitoring a bowel movement is going to help stroke patients. Anything for science.”

YOUR HIPS RADIATE PAIN
constantly because of the way you walk. Your gait has become so out of sync that your right hip, your unaffected side, will have to be replaced at some point. You also develop tendonitis in your right knee from the geeky walk. It flares up regularly and you have to ice it down.

Hemiparesis is similar to what Siamese twins have to deal with, where one twin is unable to use a leg or an arm. The other twin has to carry the load and do all the work.

You visit lots of therapists and take part in lots of studies. The pain arising from your gait problems will, you learn, be chronic, for the rest of your life.

The spasticity and pain do not let up, even with the various treatments you’re undergoing. It’s time to do something more long term: Botox shots. You’ve been told this will help with the spasms because the Botox will paralyze the antagonistic muscle and allow other muscles to work. Your physiatrist administers twelve painful shots a session in your leg, shoulder, and neck. As he places electrodes on your leg, the doctor explains that he has to electrocute the antagonistic muscle so that he hits the correct one. The shots only last three months.

“Hey, I have some crow’s feet showing up on my face. Can you give me a little cosmetic treatment, too? Seriously though, speaking of feet—my foot is always in a clawlike position. Can you give my foot a shot, too?”

“Well, for me to relax the toes with Botox, you’d need to have the shot in the arch of your foot. There’s no fat there, and it’s extremely painful.”

“I can’t believe there’s a body part on me that doesn’t contain fat. Hell, it can’t be that bad. Let’s go for it.”

THE DAY FOR YOUR PROCEDURE
rolls around. Mom takes you to the doctor’s office.

You know it’s going to hurt like hell, and to brace yourself, you ask Mom to hold your hand. You’ve instinctively learned that holding another’s hand during waves of pain helps alleviate some of it.

Your physiatrist has you lie on your stomach. You look back and get a glimpse of that needle. It must be eight inches long.

“Hey, I thought I was going to have a
needle
inserted, not a freaking sword! How many patients have you done this procedure on?”

“I’ve never completed one. People get squeamish when they see the size of the needle. You’ll be my first. You sure you want to go through with this?” he asks.

IT DOES IN FACT
hurt like hell.

But it works. Painted toes and sandals are now a possibility.

No pain, no gain.