Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (22 page)

FURTHER ALONG
in your recovery now. You are obviously making more progress, because you go out for social occasions—
without
the leg brace that has become standard equipment for you during walking lessons.

You are at your house again, feeling somewhat normal…wearing shoes, even. You are dressed to go out with friends. Jim is upstairs getting ready. You are standing in the kitchen waiting. But you have blind spots that affect your balance; if you start to fall a certain way, there is no way you can catch yourself. There is simply no safety net; your left heel doesn’t work, nor do any of the toes on your left foot.

Winnie, your cat, pounces in front of you, causing you to reel backward. There is no hope of sparing the fall. You plunge backward, making a tremendous noise, as usual. Falling is less scary now than it was, though.

You’re not moving. Actually, you are sitting. You have executed a perfect butt plant (“plant” being the operative word). You’re sitting smack in the middle of a large potted hydrangea in the corner of the room, dirt smeared along the back of your nice outfit. Broken branches and leaves are everywhere. Jim materializes, panting for breath. He must have skipped every step coming down the stairs. “I thought the kitchen was falling into the basement.”

“Honey,” you say, “I’ve been potted, my soil’s a little dry, can you grab the watering can?”

JIM BUYS YOU
a jogging stroller.

The idea is for Rory to sit in the stroller while you walk. This serves two purposes—first, you will be getting exercise, and second, you will have some stability as you move. Instead of using a walker, you’ll have the stroller, and be able to cover a lot more ground and get a bigger feeling of accomplishment.

It’s one of those heavy-duty strollers that holds up to eighty pounds. In the beginning Rory doesn’t mind riding in it, but as time goes on you have to bribe him: “I will do this for you if you do this for me.”

YOU’RE OUT SHOPPING
with Jim and Rory. At the store you’re visiting, there’s a little movie and a video with a bench so the kids can watch movies while the parents are shopping. There are about eight kids around the TV. You are kind of hovering behind the scenes, and you hear one of the kids say, “What happened to your mother?”

“Well…”

You can see that he is trying to speak in low tones, probably because he doesn’t want to hurt your feelings. You look away and pretend you can’t hear anything, pretend you’re going about your business, but you really make a point of listening to his answer.

“Well…,” he goes on, “she had an emergency and had to go to the hospital, and it broke her leg.”

This is how he has processed your injury. The other boy asks something else, but you can’t make it out, and Rory’s response is even quieter. Maybe he doesn’t want to draw attention to you, maybe he doesn’t want to draw attention to himself, but you know he’s trying to protect your feelings.

He is always so compassionate, so concerned about how you feel.

YOU ARE NOW USING
the stroller every night. Rory helps you to work out by taking his seat. You move around the neighborhood together, night after night, week after week.

Then one day it dawns on you.

Thanks to all the nights with Rory and the stroller, thanks to the many grueling months of rehab, thanks to the seemingly endless series of pool sessions and walking lessons, both with therapists and on your own initiative—you’re now walking more or less independently around your house.

Under your own power.

Up and down the stairs.

When you want.

You are not walking
exactly
as you walked before the stroke, but you
are
walking. If you had listened to the people who told you solemnly that you would be in a wheelchair for the rest of your life—and that your failing to accept this was “denial”—what a different life you would be leading.

If it is a determined mind that springs recovery, that’s definitely what you have.

YOU WANT TO PROVE
something to yourself—and to Berbie. A walk-athon for the Jimmy Fund charity is taking place in Boston, and you want to be part of it. There is a contingent that is walking the whole twenty-six miles, and then there is another contingent that is doing half that, thirteen miles. Finally, there is the three-mile walk, which is what you have signed up Jim, Rory, and yourself to do. Berbie and her husband had set up Team Daisy to raise money for the Jimmy Fund. The team had grown each year, with many families and friends wanting to help a cause that benefits so many children with cancer.

You want to complete the three miles for the Jimmy Fund. You want to be part of the Team Daisy contingent. It’s important to you to show your support and prove to yourself that you can contribute. It’s a huge undertaking, because up to this point you really have not walked any significant distance. Three miles is a lot for someone who has had a stroke and is still partially paralyzed.

In preparation for the walk, you have been pushing yourself, in your brace, to increase your stamina. You can walk a mile or so with the jogging stroller that Jim gave you for Mother’s Day, but a mile and a half is murder, and it takes you a very long time, sometimes as much as two hours, depending on the kind of day you’re having. You can never be sure what kind of day you’re going to have after a stroke; one day you can feel great and the next you can feel lousy.

For a while, you think it is the weather that makes everything hurt so much when you train for the walk, but then you conclude that there is simply no rhyme or reason to your body’s reactions. Some days you are in more pain and are more exhausted than others. There’s chronic pain and you have to put it in the background. If you bring it to the foreground, it can take over your day and your life.

That, you decide, is not going to happen. As you prepare for the walk, you’re constantly putting pain in the backseat. You may have had a stroke, but the stroke is not going to have you.

Time to complete the three miles for the Jimmy Fund, for Daisy, and for yourself. Time to move on with your life.

RORY DOES NOT WANT
to ride in the stroller on the Jimmy Fund walk. You have to draft your godson, Olly, Berbie’s older boy, who is about sixty pounds, to sit in the stroller. It’s better to have more weight in the stroller. You feel like you have more stability, and you get to work out your arms at the same time.

They are long, very long miles, but you finish all three of them with Jim by your side. It takes you more than three hours, and there’s a lot of pain, and you’re more tired than you can ever remember being in your life by the time you finish. But you do it.

You are extremely proud of yourself. But as Jim drives you home you wonder whether you’re going to be laid up for a while.

THE WALK SETS YOU BACK
so badly that you are out of action for two weeks. You miss some of your therapies because the spasticity really kicks up after such extensive activity.

You realize that you’ve overdone it. It’s tough. But you tell Jim that it was worth every step to have achieved it.

SUNSET.
You are sitting in your headquarters chair staring at the shadows on the wall, feeling depressed, drooling quite a bit, and you do not have much control over it. Your face is flaccid; the muscle control is so weak it just sags.

Jim wants to talk about work and you are too tired. You have started to realize that it is unlikely you will ever go back to work.

You have been looking for ways to avoid accepting that, thinking of ways that you could do it, but having only the right side makes it difficult. You know there are adaptive devices, but knowing you don’t have the energy level that it takes to be in a fast-paced work environment has set you into a funk.

You can’t work.

You also feel you are failing as a stay-at-home mom. Rory needs a lot of motherly care, and you’re not able to do it, since you cannot even care for yourself. You have to rely on your mother and Jim as the primary caretakers for Rory.

Rory does not understand the magnitude of what has happened, really, but he senses that something is very different. He knows that you are injured and that something important has changed. When you were in the hospital he would get frustrated; he would want to go home, he would want you to be home. You were gone for a couple of months and he had been shuffled around a lot—to your mother, to Jim, and to friends who covered when neither of them was available.

Rory realizes that you always need someone at home to babysit
you
. You need someone to help you with your needs. He has stopped going to you for anything
he
needs.

MIDNIGHT.
You’re in bed. A call from Rory’s room. He is not feeling well.

You say to Jim, “Please let me go try and console him.”

You go into Rory’s room. He says, “I want Daddy, I don’t want you.”

He says it over and over again. He’s emphatic about it.

You say, “Well, let Mommy help you,” and he says, “No, you can’t help me. You have your own problems. You fall down and you need help and you need someone to get you up.”

You go back to your bedroom. Jim takes care of Rory.

You don’t get to sleep for a long time.

FOR THE CHEMOTHERAPY
infusions you have agreed to, you choose to have your blood work done the day before, thus sparing you several boring hours in the waiting room while they process the results. Sometimes you go for blood work on a Sunday at the sister hospital near your home. Often the phlebotomist tells you that it’s “not ordered for Sunday,” which causes another long wait for your approval to churn its way through the hospital’s computer system.

You’d think someone on the medical staff would give you a heads-up. But you really do have to figure this stuff out for yourself. For instance, you learn that you always want to be the first patient to arrive in the infusion room. This gives you a selection of where you will be planted for the day. The room has strategically placed beds and lounge chairs; you learn to think about location. Do you want to be near the TV, near the restrooms, or near the entrance where there’s human activity to observe? You opt for the bed because you are still having problems with balance and the sitting position hurts your leg; fluid pools up. You want the one near the entrance because you can watch television and also see new faces entering the room.

There’s only one nurse attending to all the patients in the infusion room. You learn that it’s best to endear yourself to her. If she doesn’t like you, you tend to have a very bad day. If she decides that she wants to help you, as opposed to
having
to help you because it’s her job, the day goes much more smoothly. You realize that she’s seen human suffering every day for a long time, and has had to create a hardened shell in order to survive.

Knowing that you are going to be there for an extended stay, you let Jim equip your little bag with “keeping busy” items. He bought you a Walkman, which goes in the bag; you bring books on tape and a tablet if you want to write or sketch. Most of the time, you just sit and observe the workings of the room—the people coming, the people going—and think about what the other people who are hooked up to needles and bags are there for.

It’s a long day.

ANOTHER DAY OF INFUSION.
You are all settled in and the IV is going. Jim has left to go to work. You think it is going to be the latest in a sequence of boring days. You know what the next week will bring—a hangover without the party.

But you’re wrong. It’s not like the last time.

Jim has e-mailed all your friends, alerting them to the fact that you are being infused; they show up on a prearranged schedule. People keep materializing. Everyone takes an hour and comes and sits with you. So most of the day, you are simply being entertained. It’s a wonderful surprise.

AT THE END OF THE DAY,
you are finishing up, and you are waiting for Jim to pick you up. A short man with patches of reddish hair and a really bad comb-over, who has been hooked up to his IV for almost as long as you have, has been watching you hold court the whole time. Now all your friends are gone, all the other patients have left, and it’s just you and Mr. Comb-Over.

You turn and smile at him, sharing the pleasant, anticipated moment of being done, finally, with the day’s treatment. But his round face is scarlet with rage.

“Oh, I’m glad to see something’s wrong with you,” he hisses. “The way you acted all day, you would have thought you were here on vacation in the Bahamas.”

He is angry with you for finding something other than unhappiness and rage at this situation.

You have spent the day laughing with your friends, but that is how you diverted your attention from your problems. You made light of things, sure, but you always made light of yourself, not of anyone else. You cracked good jokes about your situation. You stayed sane because you allowed yourself to laugh. Now this person is angry that you were laughing—not at anything in particular that you were laughing about, but at
the fact of your laughter.

You look right at him and say, “I bet that really pissed you off that I was laughing.”

“Yes,” he mutters, “it did.”

“Well,” you ask, “what do you have?”

“I have colon cancer.”

“I’m sorry to hear that.”

His face is still red. He stares at you and says, “This hospital did it to me.”

You think about this for a minute, and say, “No one did anything to anybody here. We are here because this is what we have to go through. You know, with your attitude, you are going to die.”

Silence.

“Your
attitude
,” you continue, “is what is going to get you through this, and if you have an attitude that is negative and blaming, then you will not have any energy left to put toward your recovery.”

You keep talking. He starts to listen to you only after he finds out what has happened to you. You don’t volunteer it. He finally asks you, and you tell him that you have had a massive brain hemorrhage that has resulted in left-side paralysis, and that they are still trying to diagnose it, but they felt that the chemotherapy was at least a cautionary treatment.

He’s shocked. He says, “You’re younger than my youngest daughter. I have four daughters, and you are younger than my youngest daughter.”

This seems to make him able to see the human side of the situation. You keep talking. He is now listening intently to you talk about changing his attitude and being more positive about recovery. He nods and even smiles a little.

His wife and daughter come over and hug and kiss you and say, “Thank you so much. This is the first time in almost eight months he’s changed his mood. He just needed somebody who was going through something as serious as he was.”

“Positive thought,” you say, “is all you have. Remind him when he needs a boost.”

They promise they will. They leave.