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 8: Returning the Panic Button

After my one and only seizure--which happened about six months after the stroke--my family arranged to get me a LifeLine button, in case I had some other emergency and no one was home to help me or the kids.

It has been very helpful. I've never actually needed to use it in the almost three years I've had it, but it has put my fears at ease when I'm alone at the house. I'm guessing that it's been just as helpful as talk therapy to address my fears, and more cost-effective.

But as I get more and more mobile, I knew that it didn't make sense to keep it. I'm driving on average four days a week, sometimes with kids in tow. I'm on a low  dose of anti-seizure medication. LifeLine is is cheaper than psychotherapy, but still expensive.

So my last challenge was to make arrangements to surrender my LifeLine equipment. I called them last week to tell them I don't need it now, and on Monday, I packed up the equipment, drove to the hospital that rents the equipment, and turned it in. Other than the fact that it was tricky to juggle my cane and also haul the stuff in a bag through the long hospital hallway, it went smoothly.

I wish I could say that I feel relieved. But the fact is, I'm still scared a lot. I wish I could have some implanted (and free) device that would call 9-1-1 if fell or had a sudden change of brain wave activity. At least now my fear is usually is sort of a low-level anxiety, rather than a stop-you-in-your-tracks panic.

When I told my kids that I had returned the "panic button" and the intercom, my kids were surprised. My daughter was disappointed that she couldn't test it one more time. My son smiled, and gave me a big hug.

Challenge 7: Remembering Piano

Not long after I came back from Spaulding, I sat down at my piano. I wasn't sure if I could play anything at all, but I tried to think of the piano as a therapy tool--both physical and cognitive.

From time to time, I've been going through my sheet music for my favorite pieces. With some pieces, I've tried to pick out the notes. Sometimes I listen to recordings and follow along with the sheet music. Other times I just listen.

But there was one piece that I couldn't find in my music books, and I also don't have a recording. It was a slow Scott Joplin piece called "Solace" that I've been playing by memory since middle school, and it was one of my show-off pieces. But when I tried playing even a few notes by memory, I couldn't. My left hand waited for cues from my right hand, while my right hand sat on the keyboard, useless as a dead fish.

So my challenge was to drive to the music store, track down the music, and hopefully pick out some of the melody, in any way possible. After thumbing through anthologies, I found the song. To my dismay, the music didn't look like anything I remembered. Did I confuse the name of the piece? Were my music-reading skills affected by the stroke even more than I realized?

I was never the most talented pianist, but that was beside the point. I loved making music. And now one more piece of myself was lost. This really sucks, I said to myself.

I bought the music book anyway. When I came home I googled "Solace," and found a video clip of someone playing the piece. Halfway through the clip, I recognized it. It was "Solace." But I had always skipped the first two movements, and even forgotten they existed. And I don't think it had anything to do with the stroke.

Afterwards, I tried to play a few lines. It didn't sound much like music, and I'm not sure it ever will. But at least I now can tell you: I used to play this Scott Joplin song called "Solace" for decades; I always skipped the first two movements; and that was part of who I was.



Here's a post by Marcelle Greene about ragtime and stroke. Here's a video clip of a performance of "Solace" (with a lot fewer mistakes, of course, than I used to to make. The parts I used to play start at 3:37).

Challenge 6: The Mall

I drove to the mall for the first time. I went in, had a sandwich, and went home.

I've never been that much into shopping, especially at the mall. I'm not, in general, a triumphant shopper. And over the last three years, I've gotten really good at ordering things online.

And yet, going to the mall--either alone or with my kids--is one of these ordinary experiences I wanted to try. Not because I enjoy it that much, but because of all the other things in it that make me feel like a semi-competent adult. Dealing with traffic, parking, food, crowds, fast-talking sales people--it's all part of rehab.

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.

Grief

I am so sad about the events at the Marathon.

I will resume my blogging next week.

If you can, please join me in giving to this charity: The One Fund.

Challenge 4: Highway Driving

I'm feeling more confident about my driving now, but still I haven't done much highway driving. I've done a few three- or four-minute trips, but I wanted to go further.

Specifically, I wanted to drive to Lincoln, a town that's about 15 minutes west from my house. I can imagine Robert Frost composing poetry while strolling through the woods and the small, rolling orchards of Lincoln (although I'm guessing that he--like me--wouldn't be able to afford a house there). The landscape is beautiful, but the bigger draw for me is chance to visit farm animals there. I used to take the kids to see the cows, pigs, and sheep at a community farm, but I confess: it was mostly a good excuse to do something that I wanted to do myself anyways.

So I drove in Lincoln and back on Tuesday. Unfortunately, I knew that the driving would be very tiring, so I didn't actually do anything there--I pulled over in a parking lot, rolled down the windows, and breathed deeply for about 5 minutes. And then I turned around and drove home. I'm looking forward to driving there again, and getting out to visit with the animals.