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

by Julia Fox Garrison

  And all that matters is that Edie made the bumper pad, the rocking chair, all the components that pull the pieces together in your son Rory’s nursery, and her eyes could never, ever tell you a lie.

  Edie makes her eyes say, “Don’t worry, honey,” and dim themselves, and the wall settles in again.

  The Moaning Lady

  SHE KEEPS MOANING.

  You start asking questions about the lady who keeps howling at all hours of the day, even though she knows she’s driving everybody nuts.

  The nurses tell you the woman is in her early forties. She has had a severe left-hemisphere stroke that caused aphasia, a major brain dysfunction that damages speech and the ability to express thought.

  She used to be a schoolteacher.

  She had married for the first time in the past year.

  Her husband is a big strapping guy who is completely devoted to her. He visits all the time.

  Her stay in the hospital has already been a long one. She has been there for four months.

  You ask when she’s likely to get out.

  “She’s indefinite,” the nurse tells you.

  It stops you cold. Parts of you are paralyzed and you have a lot of body-part issues and some cognitive problems. But at least you are able to talk and communicate with others. This woman is trapped inside her head without the ability to express herself. Your prison is a portion of the hospital—hers is her skull, and she has no idea when or if she is getting out.

  It occurs to you that there must be a lot of people like this in a lot of hospitals, people who have a worse struggle than you do.

  PAUL’S VISIT IS OVER. You’re on your own again. He left some cologne for you. You spray a little of it on your wrist, and then in the air, watch the droplets scatter and disperse into the air, close your eyes, and take a deep breath.

  Heaven.

  Disabled Chariot

  FOR MOST PEOPLE a wheelchair conjures up ideas like illness, debilitation, and helplessness. It’s hard to escape these preconceptions when you find yourself spending time in one.

  You find that when you’re sitting in a wheelchair your personality changes because you’re not at the same level physically as everyone else. You’re actually at the level of everyone’s crotch and people have to talk down to you. “Talking down” to a person is slang for talking negatively.

  Your wheelchair offers a very uncomfortable seat, no matter how you rig it. Extra cushions and pillows work only for a few minutes. After a stroke that causes paralysis, one side of the body doesn’t shift. As a result, your body doesn’t shift and you’re constantly putting weight on one side. Shifting your body is a natural response, but with a stroke, it has to be a conscious thought. After a while the cushions don’t do the trick.

  WHY IS IT that when you’re sitting in a wheelchair, people think you’re deaf?

  People treat you differently when you’re in a wheelchair. In a store, salespeople are standing and you’re being talked down to. Sometimes they don’t even acknowledge you and speak to the person pushing you, as if you’re not there. You think they figure you’re powerless, that you can’t even get around on your own strength. So it’s best to talk to the one who got you there on two feet, the one who is steering you.

  Or do they act that way because they’re fearful, because they don’t want to acknowledge the possibility that human beings suffer physical trauma?

  No one ever teaches etiquette on how to deal with someone who’s not able bodied. Maybe they figure your body is fragile, so your emotions must be as well. Or maybe they feel they simply can’t risk hurting your feelings. Not out of any consideration for you, but because it would be too uncomfortable for them.

  You decide that most people who don’t acknowledge you must do so because they’re protecting themselves, because they simply can’t cope with your illness. Illness makes some people feel too vulnerable to their own emotions.

  This kind of person typically comments, “God knew you had the strength to handle it.” You think, “Huh? What the hell does that mean?” You begin translating this idiotic comment as “Thank God it was you and not me!”

  You’re tempted to ask, “Since you know God’s thoughts so well, what else is he telling you?”

  WHEELCHAIRS ARE EXTREMELY CUMBERSOME for something that’s meant to help human beings be more mobile. You quickly realize that if you need to get somewhere first by car, and then get mobile on the street, it can actually cause injury to package the chair and load it into the car.

  Some towns are definitely handicap unfriendly, something you didn’t notice until you had attached a chair with wheels to your ass.

  The wheelchair, you are told repeatedly, has brakes on the wheels to keep it from rolling. Mastering the brakes is the first step to master when using the chair. The therapists drill in the “safety first” mantra incessantly.

  YOU WANT TO BECOME more independent. You think, “I should at least be able to brush my teeth at the sink. I’ll use the wheelchair.” Jim usually brushes your teeth in bed before leaving the hospital for the night.

  One morning you decide you are going to get to the sink at the foot of your bed to brush your teeth. You maneuver the wheelchair and work your way to the sink only a few feet away. It’s a difficult feat considering you have only one hand to push the wheel. Initially it appears that you’re going to spin in circles like that crazy teacup ride at the amusement park, but then you figure it out. Proud of your accomplishment, you struggle to stand at the sink. Wobbly, but determined, you get up. You have an ever so brief moment of satisfaction when you see, out of the corner of your eye, the wheelchair roll away from you.

  Oops. Forgot to lock the wheels.

  Now the wheelchair is six feet away and you’re clinging to the sink for dear life with your only useful hand. You’re not even near the call button. You are not in the sight line of the open door. You might as well be stranded on a deserted island.

  You have to wait to be discovered. After what seems like a month, a nurse breezes in.

  She scolds you for impulsive behavior. She reminds you of how dangerous it is not asking for assistance. She tells you you’re impulsive for not locking your wheelchair.

  Okay. If you’ve been in a wheelchair all of your life and you’ve already formed habits like locking your wheelchair, then failing to do so might be considered impulsive and dangerous. But when you’re being introduced to this new way of life, you don’t think of these things. More fucking labeling. Suddenly your condition required you to be in a wheelchair. It didn’t mean that you automatically knew how to function in that wheelchair. It doesn’t just happen instantly. It feels unnatural.

  “Nurse, do you ever get the urge to slap someone? I do. That would be truly impulsive of me, if I acted on that urge. So you should be thankful I’m not impulsive.”

  ONE SUNDAY AFTERNOON Jim wheels you outside for a stroll toward North Station. You’re several blocks away from the hospital when suddenly the wheelchair spits out the front right wheel. After a few feeble attempts to do surgery by reattaching the wheel, you suggest that he leave you curbside and return with a working chair. “Give me a tin cup and maybe I could make some money while waiting. I can probably make a lot of money; I’m so pitiful looking! I can hold a cardboard sign—Need Money for New Wheels.”

  Jim ignores you; with all his might, he pops a wheelie, putting your weight on the hind wheels of the chair. It’s like a wheelbarrow but in reverse. He has to negotiate curbs, potholes, and general street debris. He is holding the handlebars down so that your feet are up in the air. You’re looking up at him. “You’re my hero.”

  It must have been an odd scene for the passersby: Maybe a pair of homeless people had just discovered a wheelchair and were taking it back to their campsite.

  Jim is sweating profusely by the time you arrive at the hospital. No wonder—you’re no waif, and you’re dead weight, too. He’s breathing heavily and he looks like he’s on the verge of collapse. You feel like screami
ng, “Get this man on a gurney—stat!”

  SOMETIMES YOU FALL while trying to sit up by yourself in a chair.

  Sometimes you fall while trying to get out of bed.

  Sometimes you fall when you are practicing walking.

  You fall when loved ones are there in the rehab hospital visiting you.

  You fall when there is no one in the room to notice you have fallen.

  Sometimes you fall in your dreams.

  The key to falling and surviving, you eventually learn, is relaxing whatever can still be relaxed before you hit the floor.

  Falling is a side effect of your injury. It is a fact. You must accept that it happens. It is now part of who you are. This is sometimes difficult for your loved ones to accept. At first, Jim would get frustrated and upset when you were lying on the floor. Now he gets so sad when he sees you fall. He doesn’t say anything, but you can see him collapsing inside when you look up from the floor. He tells you he hates to see you on the floor and wants to save you from hurting yourself. He’s in more pain than you are when it happens.

  This morning you stop him as he is coming to help the therapist pick you up for what must have been the tenth time within an hour and a half.

  “Jim,” you say, “if I’m not falling, I’m not making any progress. I’ve got to learn it all over again, and I have to fall if I’m going to learn anything. Do you understand? I have to keep trying to move forward. And sometimes that means I have to fall backward. Okay? I’m going to mend, don’t worry.”

  You know that’s the same kind of response as “Be careful.” It doesn’t change anything. What else can you say, you wonder.

  “And, guess what,” you say. “I think I’m starting to bounce!”

  He nods. You let him pick you up.

  “Honey,” you say, “I keep falling for you over and over again. You’re my prince!”

  You start again.

  Fall Down Seven Times, Get Up Eight

  Moving your way up a ladder. Step by step.

  IMPACT. The smell of alcohol and people and linoleum. Face cold against the floor. More walking practice with the therapist.

  Your mom is watching.

  “Oh, honey, be careful.”

  She constantly tells you to “be careful.” As though the words will prevent you from falling, as though the falling is because you’re careless. She says it because she’s deeply concerned for you, but she doesn’t realize that when you fall, it is not because you are being careless or failing to put safety as a high enough priority in your mind. You’re being careful. You’re falling anyway.

  Parts of your body that look like they are connected to you are following their own rules, or vanishing completely without any warning. That’s the problem.

  It’s true, though, that you’ve never been a particularly cautious person, and it is difficult to get into the overcautious frame of mind necessary to move your body from point A to point B. So you say, “Okay,” when she says, “Be careful.”

  STAIRS ARE THE number one enemy. Overactive muscle tone makes your knee impossible to bend. You never can tell when it’s going to happen, but it happens a lot when you’re trying to make it down a flight of stairs. Today, as your mother watches, your knee locks, and the spasms travel up your leg to the hip, locking it in place. Your leg has just become a stilt. The stairs and the landing zoom into a close-up. The therapist grabs your belt at the last moment, preventing another full-force head impact, which is nice, but you are flat on your face again.

  “Be careful.”

  The Quasimodo Walk

  YOU CAN ONLY DO A FEW STEPS, with the aid of two people, before you are tired and too unsteady to continue. And it’s not so much walking as assisted striding.

  You require three aides to get you “walking” again. One is holding your knee to prevent it from inverting to hyperextension. Another is holding your waist to keep you upright. And a third is leading you while rolling a full-length mirror on wheels with his feet.

  Your left knee keeps violently hyperextending—you can see in the mirror that it looks inside out. It snaps backward so hard you can hear bones and tendons cracking. Although you have a disconnect with your limb, you know you’re causing damage. All the therapists’ faces contort when they hear this snapping sound, which is pretty frequent.

  “I didn’t realize having a stroke could make me double-jointed. Such benefits I’m going to have. Once I get this walking thing down, I’m going to try out for the Boston Ballet.”

  OVER A WEEK of having three pairs of hands stabilize you pays off. Eventually, you’re able to stand on your own. This achievement allows you to go to “brace clinic,” where you can get an assessment for future mobility. Aides place you between parallel bars with a spotter in front and a spotter behind. You hold one bar with your right hand.

  You feel as though you’re in a high school gymnastic event, with the doctor as the judge. The trophy awarded would be the right to hear the words “You’ll walk again.” An award you had, but lost. An award you’ve taken for granted since you were fifteen months old.

  You psych yourself to walk.

  Your sheer determination grants you two very clumsy steps. But they are enough to prove wrong the people who were telling you that you’d never walk again.

  When the doctor who’s watching you says, “You’ll walk again,” you feel great. You already knew that, but it’s a reward to hear it.

  He won’t say when, though.

  “Okay,” you ask. “Where’s the test for my left hand. Do you have a knitting circle here? You know, I used to play the piano—are my recital days over? How about a sing-along for all the neuro patients?”

  THE FACT IS, it’s very hard to walk when you can’t quite identify where your body is. You stare at the feet and order them to move in harmony, but it is as if your brain is a radio tuner trying, and failing, to get a lock on a clear station.

  It’s not that your left side is unresponsive. It’s that it’s missing. If you don’t have any weight on your leg, you don’t know where your leg is.

  “I think she’s had enough.”

  Talking about you as though you’re not there again, but you’re too tired to protest. They wheel you back to your room.

  “Did you see that stairwell at the end of the hall there?”

  A fading nurse with no discernable facial features is pouring you back into bed; she nods indulgently.

  “I’m going to make it up that thing.”

  The nurse is now the color of dusk, a vague outline.

  Her voice: “Sure you are, dear.”

  ONCE YOU’RE ABLE to walk ten feet, you ask the therapist to work with you on the stairwell. Thank God for the alertness of this therapist; you come close to falling over the railing and down a flight of stairs. She grips you by the waist of your pants, giving you a wedgie up to your throat—but keeping you from hurtling downward, which is something you’re getting a lot of experience at. You think you may have to have surgery to remove your wedgie, though.

  When you walk now, you want to do it reciprocally—right foot, then left foot. Supposedly, you’re not ready for this. But you make her make you do it. And you do.

  THE PLAN IS TO VISIT your house again, then ride to your folks’ house thirty minutes away to visit your family and your son, Rory. The doctors think it will be good for your outlook. Jim has had to get several lessons from the physical therapists on transferring you in and out of a car, no mean feat. He also talks about the time you both spent learning how to get you in and out of the house without a wheelchair ramp.

  Either these events took place without you or your memory is collapsing again.

  As he drives you home, you stare out the window and are in awe of everything. It has been, you are told, two months since your stroke.

  The landscape looks different and the same. The colors are intense. You feel as though you are seeing things for both the first and the last time. It’s as though you’ve been blind since birth and have mira
culously recovered the gift of sight.

  You arrive home, and Jim backs the car into the garage. You sit staring at the cul-de-sac, the neighbors’ houses, and your yard. He wrestles the wheelchair, and you, into the house.

  You’re back.

  You left here a hundred years or so ago as Julia, a working mom. You don’t know what you are now. You’re broken.

  If you cry, Jim will cry, too. So you don’t. But everything is on the brink of death in the house: the plants, your neglected and apparently underfed cat Winnie, and you. Jim has been working, taking care of Rory, driving to and from your folks’ place, and visiting you in the hospital.

  Jim asks if you need anything. It occurs to you that you would love to lie down on your own bed. You ask Jim if he can get you upstairs.

  He wheels the chair to the stairs. He maneuvers you to a sitting position on the steps, then drops down and scoops you up, almost, as a fireman would. But he doesn’t really “carry” you up the stairs—it’s half carrying, and half dragging.

  “Honey,” you say, “it’s like the scene in Gone With the Wind. You’re Rhett, I’m Scarlett.”

  He flops you on the bed. You lie together in silence, both sweating profusely from the workout.

  “I’m going to make it up that thing,” you tell him, before you doze off.

  “I know you are,” he answers.

  Musical Chairs

  YOU LEAVE YOUR HOME and set off for your parents’ house, where the whole family has gathered, waiting for your arrival.

  You catch a glimpse of yourself in the car mirror, and worry that the left-side paralysis has made your face—among other things—appear misshapen and asymmetrical. Jim eases the car into the driveway. Everyone quietly watches as he takes the wheelchair from the trunk, sets it up next to the passenger door, and lifts you into the rolling chair.