When I was 10, the orthopedist I saw determined that my heel cord had been stretched sufficiently that it was now only necessary for me to wear my brace at night. Of course I had looked forward to this day, hoped and wanted it to come. Because it would be an outward sign that I was now “normal.” But of course that thinking was deeply flawed. The limitations would not go away. The leg was still shorter, the right foot smaller than the left foot, the muscles less developed, more spastic, balance still bad. Foot still turned in. All this is still true, though not easy for the untrained eye to notice. What would be different would be that no one would know. A relief. And also a kind of terror. What would be expected of me now that my appearance had changed? Perhaps this was the beginning of me understanding that I both was and wasn’t my body. That double bind.
That summer, before the brace came off, I went to a summer art program. It was at a school strange to me, the brainchild of a neighbor who was the principal there. I knew only him and none of the children. There was a girl in my class named Jill. She wore her very long hair in a braid down the middle of her back, and was a year or two older than me. I was having trouble using the drinking fountain at recess because it was right handed and my right hand was not strong enough to keep the water on while I bent to try and drink. She helped me. She seemed just to know why, and what to do. Perhaps someone was also bugging me about the brace, and she stepped in. She was so kind to me, and her kindness and strength kept anyone who might taunt me at a distance. I soon learned that she had a little sister who had more severe CP than I did. She was in another grouping of younger kids below us.
Jill and I became good friends in the six weeks of our art summer school. I looked foward to seeing her and feeling her kindness and wisdom. She was very talented at drawing people, something I wished I could do. And she was my protector in a strange place. No one bothered me or asked me questions about the brace after that. Toward the end of our school session, we went on a field trip to an art museum. I no longer remember what we went to see. But I do remember riding back to school on the bus and sitting next to Jill. I started to cry a little, telling her that I was going to miss her and that I wished we could go to the same school all the time. She did not try to pretend that was even likely, or that it would be a good idea to wish for that. But she did hold my hand, and say it was going to be hard, but that I could do it. For the rest of the way back to school, we just held hands, and looked out the window. It was the first loving good-bye I would experience. And the first time someone trusted me to take care of myself on my own.
Not having to wear the brace was hard, in the sense that in large part, I gave in to the temptation to convince myself that now, finally, I could be normal, like everyone else, because my disability did not show anymore. In a way this was very much me believing that I WAS my body. So of course I wanted it to be different, to be the way I wanted it to be—like everyone else’s. At times I was angry. I can remember, at 14, throwing my right shoe with all the force I could muster into the hall closet doors, because I was so mad that my right foot could not break it in, and that I still had to wear s different size on each foot. My Mother firmly scolded me for my bad attitude and made it clear she would not put up with any more of my shoes getting hurled into her closet doors. I stopped throwing my shoes and stuffed the frustration inside.
Almost three decades later, the summer after my diagnosis of MS, I was at the Farmer’s Market. There was a vendor selling walking sticks he had carved from driftwood. I thought I was looking at them for “later.” The man convinced me to try one out. I was amazed at how much easier it was for me to walk. And so I bought one, with a wood burl in the top of the handle in the shape of a star. It fit my hand perfectly.
I was quite aware that walking with this stick was teaching me patience with showing that I had a visible disability once again. Pedestrians have the right of way in our town and so you can literally stop traffic simply by standing and waiting at a crosswalk. I began to have the feeling that all these people stopping and then watching me cross the street with the walking stick were somehow accessories to me letting physical imperfection show, and allowing myself some kind of help with moving along.
It’s a handsome stick. I still have it, though now it sits in the corner, and instead I walk with Romeo when I walk any distance, which allows me to swing my arms more freely, walk faster, and entrain my gait with his, balance on my own two feet better. All wonderful.
Like having a handsome service dog, having a cool walking stick also draws attention and comments. For some reason lots of people would joke about the possibility of me hitting them and fighting cars off with it, something that never occurred to me. Some people gave me compliments. And some stared. The staring made me uncomfortable. Until one day I “got” what it had all been “for.”
I had not yet started to eat this way, though most of the time I was vegan with a little cheese here and there. And flax oil. I still did not know some things I needed to know. It was a hot summer day. I was making my slow way to the co-op. I was nearly to a half-way point, the motel where the bus station is, where I could sit on a bench in the shade and rest before going the rest of the way (the entire trip is probably about a quarter of a mile). Ahead of me on the sidewalk came a mother on a bike. Her little girl followed her on her own small bike. The mother simply stared at me and my walking stick, as if she had seen a snake and did not want to ride over it. (No nod, no smile, no acknowledgement of me.) The little girl imitated her mother precisely. Now at any time in my life up to that moment, I could have, and often did, feel any of the following: self-consciousness, embarrassment, anxiety, self-judgment, hurt, or worry , victimization, anger, self-loathing. But this time I looked at this woman and saw she was so afraid of a little thing like a walking stick that she was passing that fear on to her daughter. And all I felt was unconditional love for the two of them, and all they’d have to go through to heal those mistaken fears. It was quite a surprise. But there it was, and that was all there was.
Suddenly, what my Spirit had evidently been trying to teach me for the last 50 years became clear in that moment: to learn to see myself and my need for assistance through the eyes of unconditional love, and to see those who couldn’t see that way with that same love.
I might not make it there every time something like this happens, but I had made it there that time, and so I knew it was “there.” How complete and peaceful it felt. It was finally all worth it. Knowing this glimpse of unconditional love is the true healing, with or without a walking stick, a brace, or one side bigger or better than the other. I laughed out loud. It had only me taken 50 years and another serious diagnosis mirroring the first one to make things clear. If my struggles with the CP and then the MS had brought me here, it was indeed 50 years well spent. No matter how long it takes, I hadn’t wasted my time.
- – - -
I live on a street with lots of college students as neighbors. In one of the apartment buildings down the street lives a young woman named Ashley who is in a wheel chair. I don’t know what her medical situation is, but she has no legs from the knees down. She is also very heavy. She is the brightest and most positive person you can imagine. Very intelligent. And, by her own description, very stubborn. She lives alone in her apartment. I met her one morning when Romeo and I were walking by in winter and she called for help. There was snow receding, and ice all over the place. She needed someone to hold her wheel chair so she could hoist herself into it. We carefully picked our way over to her door. I tried but wasn’t strong enough. The former teacher in me hailed the next two college kids we saw in the parking lot, and they were able to help hold the chair. I thought about this a lot after. And how she had wanted no more help, but was making her way in a manual wheelchair in the snow/rain/ice with just a hoodie and her backpack on the back of the wheelchair. I had just made a big pot of minestrone so I put some in a container and left it at her door for when she got home. We would see each other off and on and say hi. She has a fantastic sense of humor; that first day she had quipped when I told her Romeo’s name “who needs men when you have a dog!” Sometimes I’d see a friend pushing her part of the way. One day I saw her coming toward us and she was crying. She has exema and it was very painful for her to push the chair. A sweetheart of the first order, all she asked me for was a hug, saying she had a ride to the doctor later on. At that moment some angel of a female college student walked by and offered to push her. So it worked out that time too. From time to time over the winter I would leave her a serving of something I made. And in the summer I picked her some of my raspberries.
This past summer, the evening of July Fourth, Romeo and I set out for a short walk before sunset. We went in the direction of crossing the busy street near the corner, which is the opposite direction we usually go in. As we approached that corner, there was Ashley on the opposite side of the street, probably having come from the laundromat, waiting to cross. Then I could see she was trying like hell to get the wheel chair out into the street, which curves up at that point. A car had stopped. And another in the opposite direction.
Not sure I could do anything about it, I called out, “Hi Ashley, do you need help?”
“Yes!!” she said, and when I got closer I saw she had a bandaged hand. She had sprained it.
I said, “I’ll give it a try. We’ll get across. Strength in numbers!” And I got behind the chair.
She said, “we need to go this way first, then turn around. Trust me.”
“Okay,” I said.
I saw the wisdom of her strategy as we went sideways, then turned around where the rise in the road was not as steep. I was able to push her all the way across until she was coasting down and onto the sidewalk.
“Are you good from here?” I said.
“Oh yes,” she said, “Thanks!”
Romeo and I stopped to wait, since we would have to cross again. I looked up and there was a huge line of cars both ways, all watching. And even one in a 3rd direction. They all waited while Romeo and I crossed the street. It felt like another moment of karmic culmination with layers of other lives breaking through. As if all these passers-by had assembled to witness me be strong enough to push Ashley across the street. Sure I was sore after, but nothing major. It reminded me of when I first got diagnosed and was beginning to walk around town with the walking stick. It was so noticeable—like being on stage when I crossed the street. And I had the huge awareness that I was balancing halves of my life, cut open like a ripe fruit. In the first “half” of my life my disability—the CP—had been “hidden” once the brace came off for the day time. And when the MS showed itself 3 decades later, it was the left side, the “good” side, that now also had trouble, and so I had had to return to practicing “showing” my difficulties.
I almost started to cry, since I felt a wave of support from all those cars. Not a single vibe of impatience. They, and Romeo, had helped carry us all across the street, and then me and Romeo back. I don’t know how many cars there were. 25 maybe.
I’ve seen Ashley a few times so far this Fall. She has a new deep purple coat that is a lovely color against her red hair. We were both excited afterwards to learn that we had each made it to hear Gloria Steinem give a talk, she in her wheelchair, me with Romeo. One Sunday she was just wheeling around enjoying the falling leaves on a beautiful morning. Romeo and I wandered with her to the end of the block. The other time was a school morning, and we were walking by her apartment. Something had stuck on the wheelchair brake and she was having trouble getting it to stay still so she could get into it. This time, three seasons from when I first tried to hold the chair, I felt ready and able to try again. I stuck my heels against the ledge of lawn and anchored my feet. The chair stayed in place while Ashley got into it. And I stayed in place, too. Nothing hurt. We succeeded together. Again.
My joy in my body being able to do more, however slowly or incompletely, has been made all the more rich because I can now help someone else, who, in her own unique way, is so brave and present in hers.
Perhaps, too, my joy is more complete because so many years ago when I had to stop identifying myself with what I usually did because I just couldn’t do it anymore, I found to my surprise, that “I” was still there—that I was somehow “more” or “other” than what I could do. So I was living beyond what I had called “the death of the functional self.” Now as function improves, or returns more often or more fully, for longer times before I tire, I am still glad to remember that I am not only what I can do, but something not quite measurable, but ever so much more.
And that I do not function alone, ever. Even when it feels otherwise.