My Cane

Around of the end of last summer, I started walking around my neighborhood without a cane. It was a little scary at first, but I'm happy that I've made the leap (so to speak). I'm putting more weight on my affected side, and in general I feel stronger.

But I still do use my cane, especially in bad weather. I also use it, for instance, when I go to a store; or to a meeting; or any time I might encounter a crowd--especially a crowd of children. When I have my cane, people give me more room to pass. They hold doors. Parents ask their children to step aside. When I can't spit out the words at a normal pace, people (usually) give me more time to speak if they see the cane.

Sometimes I think I should ditch the cane, but I wish there were some other way to signal that I might need extra space or time. I guess I could hang a sign around my neck, that says: "Warning: Brain-Injured Person," but the cane does seem more elegant.

I have many canes, but this is my favorite

I'm a Spaz

When I was in junior high, whenever a friend did something clumsy, awkward, or funny, we would laugh and say,

"Don't be a spaz!"

I think I vaguely knew that the word "spaz" came from "spastic," but I had no idea what spasticity actually meant. Until, of course, I was afflicted with this uncomfortable condition myself.

Looking back, one of the people who probably suffered from spasticity was a kid in my class who had spina bifida, or maybe cerebral palsy. He used crutches and his legs looked like they hadn't grown enough. Other than noticing his awkward gait, I didn't think about him at all. My top--and only--priority in junior high was to fit in.

There was also an adult in our neighborhood who probably had spasticity. He walked into the town center every day with a lopsided gait. I'm guessing that he also had Tourette's syndrome, because he also used to mutter curses, and jerk with uncontrollable tics. "He's harmless," my mother would reassure me, if I encountered him on my walk home.

A few weeks ago when I was walking, I had a good view of my shadow. I was trying to walk fast, which makes my spasticity more noticeable. I was swinging my right arm, and with each step I could see my shadow arm moving in jerky, awkward movements, like a wind-up toy losing steam.

At first I was amused by my spastic shadow. I was even tempted to spew curses, just to see reactions of passers-by.

Then I thought: please god, help me walk normally before my children start junior high.

(For the record: I believe I also have apraxia, which contributes to the awkward look of my movements. Like many stroke survivors, I have a cluster of conditions.)

Challenge 5: Walking Barefoot

Sometimes I think of my right foot as a patient who has been forgotten in a back ward of an old hospital for years.

In the first summer after the stroke, my PT encouraged me to walk on the beach without my brace and without shoes every so often to stimulate my feet. I tried it one or two times, but I gave up after realizing how many challenges I would have to overcome: the weakness in my ankle; the crushing fatigue; getting my shoes and brace off and on with one hand; etc. I also experimented briefly with walking barefoot in the house, until I had a few near misses with cans and knives in the kitchen.

Now my feet are usually are hidden away in thick shoes every day, except for bedtime and naps, and also for leg exercises on the living room rug (my yoga teacher has tried to coax sensation and movement, with some success, from my right toes).

So this was my challenge last week: to putter around the house barefoot for more than an hour. With bare feet, I unloaded the dishwasher; made lunch; sorted papers between the pile in the kitchen and the pile in the dining room.

It was tiring. Partly because spasticity can make feel as if I will topple over without the steadying influence of my shoes. But mostly, my right foot and toes seem to be terribly disoriented and confused. They ask: is the floor really cold? Or is that pain? Are all the toes pointing up or lying flat? And where, exactly, am I?

I know I have to walk barefoot more often to stimulate my foot. But right now, it feels like an act of faith, rather than an exercise.

Challenge 3: Personal Landmarks

There's a water tower in my town that looks like the pantheon. It's on top of one of the highest hills in the town, and it's about a half mile from my house. I hadn't walked to the water tower since the stroke.

When my kids were little and I couldn't stand one more trip to the playground, I would trudge up the hill with the kids in the double stroller and go to this small circular park. It has great views of Boston. It also has crabapple trees, which are just right for little kids to climb on, and the grass has tons of dandelions to pick. My kids were also intrigued by the series of manholes in one area of the grass, and we would hop from one manhole cover to the next.

Last Sunday I asked the kids if they were interested in walking up to the water tower. My son--who's acting more like a teenager every day--had other plans: hanging out with his friends, playing Mindcraft, and going to the hardware store with his dad. My daughter--who sometimes begs me to go on a walk--of course had no interest in walking that particular day.

So I walked up there by myself. Afterward I was pretty exhausted. According to my pedometer, I took about 2800 steps. I've been on longer walks, but not by much.

Maybe I can bring grandchildren there one day.