This past Wednesday I started volunteering with the Physical Therapists at one of the hospitals near(ish) to us. For most of the patients, you couldn’t tell by first glance what, if anything was wrong with them. Occaisionally you’d see someone who was limping or obviously stiff, but some of them appeared quite fit and healthy, bouncing down the hallway.
So it was hard not to do a double take when I saw a girl–a teenager, though quite emaciated–wheeling herself down the hall. She was followed, with obvious love and protection, by a silver-haired man I presumed to be her father. I was immediately caught in the catch-22 of neither staring at her nor avoiding eye-contact with her.
She was rail thin, though if she had been able to stand she probably would have been taller than me (I’m only 5; 1″). She seemed to hold her head up only with difficulty, and her fingers were arched in such a way as seemed to indicate she couldn’t get much use from them. But when I asked her if she was “Jess,” the next appointment I was expecting, and she answered yes with clear, calm voice. I went back and asked her PT where I should put her, since none of the stations struck me as particularly “wheelchair accessible”, and then brought back Jess.
She moved with complete confidence and accuracy, which made clear she had been in that wheelchair for quite some time. This made me all the more surprised when, after barely more than a hello to her PT, she began transferring herself to the bed. And I do mean “began”. I was surprised enough that she could use her wasted-away arms to support her weight, but some how I was even more surprised when she hooked her hand behind her knee and literally began hauling away at her own limb. It was something akin to watching someone hoist themselves by their own bootstraps—it should have been impossible, but there she was. It was a slow, tedious process, to be sure, but she was moving herself.
I wanted to watch the whole thing, but I had to keep doing other things, and I couldn’t shake the feeling that I shouldn’t be staring, even though her PT and the Student PT were both doing exactly that, though I supose medically speaking it would be referred to as “observing”. So when I had pause in my work, I “observed” too.
Lucky for me the Student PT was there, because that meant I got the benefit of hearing the PT explaining some things to him. Because Jess had no flexor control over her fingers, she had to grab ahold of things by “hooking” them in her wrist. This much I had observed. What I hadn’t realized was that, as the PT said “she has no abs—no functioning abs, so she always has to have a point of contact.” By this time, Jess had gotten one leg on to the bed, and was now working on the second leg. She had to brace herself on the bed with her right arm while hooking her left wrist under her second leg, jerking it inch by inch to join her first leg. She was bent nearly in half, with her head hanging down, and her short-but-stylish brown hair jerked along with the rest of her.
She finally made it to laying down in the center of the bed. I could see her face more clearly now; it was narrow, but very pretty, and not in a “make-up lady behind the counter” sort of way. She laid there very serenely while the PT explained to the student that they were going to be testing her nerve sensetivity. With a safety pin.
No, really. With a safety pin. Jess wasn’t to watch, and they would poke her in various places with with either the sharp side or the rounded side of the saftey pin. Jess had to be able to say if it was sharp or dull, and would be graded by how many she got right. In the case of her hands, she would have to say how much she could even feel it. The student wanted to know what would be the base measure of “how much”. The PT apologetically said to Jess that this was going to be very blunt, but “if she didn’t have feeling in her face, she wouldn’t be here with us now. So how it feels against her face is the base measurement of how it ought to feel.”
“Sharp. Sharp. Dull. Sharp. Dull. Sharp. Dull. Dull.”
I could hear her as I wiped down a bed. She sounded very patient—peaceful, even.
I didn’t get to see much of what they did with her, partly because I still don’t know if I should “intrude” on the patients by watching. But when it was over and she was transferring herself back to her chair, I came back.
She was once again bracing herself on one elbow, hooking a wrist behind a knee, and jerking herself along. Her head was hanging down, but she was chatting with the PT and the Student, and you could hear a smile in her voice. At one point the (male) student suddenly noticed that she had matched all her accesories to the color of her special gloves, and she stopped hauling on her leg long enough to look up at him in laughter that he was only just now, after the entire session, noticing. The PT said he was a guy, and she gave him credit for ever noticing at all.
Through this all, Jess continued to make achingly slow progress. You just about felt like crying when the rubber treads on her sneakers caught enough traction to keep her jerk from moving her leg, but she would just try again. And again. And again. She got herself to the edge of the bed, and had them posistion her chair for her. And then she attempted to get in the chair.
You see, the chair was slightly higher than the bed. This is okay when you are going from chair to bed, but it makes things much more difficult to go from bed to chair. The PT held down the corner of the wheelchair, but it seemed no matter how long and how hard she tried, Jess just couldn’t jerk herself into it. The PT offered to help; no, she was fine. Jerk. Jerk. Jerk.
After getting perhaps 1/3 of the way there and then making no progress at all—in between talking about a class trip and how she missed voting by a few weeks but managed to sway her dad into voting the way she wanted (a very smug smile there)—she slid her self back on the bed.
With the exact same amount of patience and sweetness that she had had when she first arrived, she asked for the chair to be slightly reposistioned. They did so; she tried again. When she got about as far as she had the first time; she paused, head still hanging down.
“Are you resting?” The PT checked to make sure she was all right.
“Mm-hmm.” Perfectly calm.
“She’s really getting a work-out—her tricepts are trembling,” the PT remarked to the Student.
In a few moments, Jess starts working again, this time using her head as well (jerking her head one direction encourages her hips to go in the other).
She gets about half-way through, and she just can’t do it any more, and she asks for help. Between her and the PT, she gets fully into the chair, and a still smiling, still serene Jess wheels herself out.
What are you supposed to think when you watch something like that? The PT looked sad. The Student looked like maybe he really pitied her. I felt extremely humbled.
I am sure that Jess is still perfectly human; I am sure she has her good days and her bad days, her days when life is looking up and her days where everything seems hopeless. But I seem to spend most of my days being impatient over what I can’t do or haven’t done yet. I, who spent most of the day trying to stream-line changing the beds into the most efficient process possible, shaving off seconds from every step and combining steps where I could—I don’t even consider the time it takes to get me from bed to chair or back again. I just do it, all the while think about all the things I’m not doing, I ought to be doing, I’ve yet to do, I want to do but can’t.
Jess was graceful. Not her body, which did not want to cooperate with her. But inside, the part of you that says you are perfectly justified to be upset and angry and impatient in the face of great difficulty. That part of you that says you are entitled to the life you think you want, the life you see others having.
Maybe some outside observer would have said I was the more graceful, as I changed pillowcases and disinfected beds in the space of mere moments, and that Jess was the one with problems, as she struggled to even move. But it seems to me that in my insides I boil with impatience and dissatisfaction, that I am the one with problems. And that inside of Jess, she was filled with grace.