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.
Dealing with What You Have
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.
Bitter Prescription
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.
Potted
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?”
A Walker Disguisedas a Stroller
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.
Moving On
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.
Limping for Joy
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.
Your Own Problems
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.
A Trip to the Bahamas
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.
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 20
