Four Years Ago

The last time the Winter Olympics happened, I watched them from my bed at Spaulding Rehab.

Someone from my family would come almost every evening--usually mother. She would help me eat, and keep me company. When it was time to watch the Olympics, she would turn on the TV and put it on the right channel. Changing the channel was still mystifying for me.

It's Greek to Me

My aphasia is mild now. I can have a conversation. I can write short emails without too much trouble. And of course, I can write a blog.

But the aphasia is still there. Even the people I'm closest to sometimes don't realize that I'm struggling in certain ways.

For instance, I still have some auditory processing problems, especially with numbers. Last April, my mother and I were watching the Boston Marathon on TV (this was before the bombs went off, when finishing times still mattered). We were enjoying hearing about Joan Benoit Samuelson, a fellow New Englander who had won 30 years ago. In the commercial break, my mother and I had a conversation that went something like this:

Mom: Wow, 2:ΣΨ:ΠΏ. They had said that she wanted to finish the marathon in under 2:ΣΔ:ΓΦ.

Me (looking blankly at my mom): uhhh…

My mom probably decided that I couldn't hear her.

Mom (in a louder voice): I said, she wanted to  finish the marathon in under 2:ΣΔ:ΓΦ, and Benoit’s time was 2:ΣΨ:ΠΏ.

Me (still looking confused): uhhh...

Mom(in a loud voice, again): it was two minutes under the other time.

Me (in a loud and agitated voice): Mom, don't you know that I can’t understand numbers?

It was my mother’s turn to look blank. We had a short conversation about how my brain can't handle numbers in certain situations, and then we went back to watching TV.

Sometimes I think that recovering from a brain injury is like peeling an onion: there's always another layer to peel. Each layer gets thinner and harder to see, but I know it's there.

(Fortunately, I can usually understand written numbers. Samuelson's time was 2:50:37, better than her goal of under 2:52:43. Go Joan!)

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

Piano Therapy

Since the spring, I’ve tried to practice piano regularly. It doesn’t sound much like music yet, but I have progressed a lot since the early days of my recovery. I work on scales, basic exercises, and pieces I learned when I was in third or fourth grade.

Sometimes I do have a good cry at the keyboard. I miss making real music. But I do think that trying play the piano has helped me a lot, in unexpected ways.

When I practice, often I don’t focus directly on finger dexterity, because it’s too frustrating. I still don’t have much sensation or proprioception in my hand and arm. So I focus on looking symmetrical while playing. I compare the angle of my right wrist to my left wrist, or left chest or the right chest,  or the angle of my forearms.

Then I make tiny adjustments of position or posture, and at some point, I usually get a sudden feeling of awakening in some muscle in my right side. Usually it’s a muscle (or group of muscles) in my trunk: my shoulder, or upper back, or my chest, or my abdominal muscles. It can be a stretching feeling,  or a heavy feeling, or an itchy feeling. But that feeling of my body waking up is addictive. So I try to hold on to that feeling, and make it happen again.

One day a few months ago, I was getting tired after about 15 minutes. I needed a change of pace, so I decided to really  to work on arpeggios for the first time (but with  my left hand--it’s too frustrating to try with my right hand at all). When I (and most people) play arpeggios, I have to lean from end one of the keyboard to the other end, and back again. So I leaned, and voila: I had that wonderful awakening feeling--in my right buttock. Now I think of arpeggios as “butt practice.”

I’m sure I could find a few reasons why regaining sensation in this part of my body is good. But the biggest is very utilitarian: any gain of sensation also helps me regain strength, and any gain of strength helps me to improve my gait. In stroke recovery, everything is connected.

Treat or Trick

On Halloween, I stayed at the house, while my husband went around the neighborhood with my daughter and some of her friends. They were the first trick-or-treaters to arrive at our house, and I could hear their excited chatter as they came up the steps. I was a little bit nervous. I wanted to greet them with the right mix of warmth, surprise, and admiration. I was also nervous about spilling the candy, taking too long to open the door, or tripping on the rug.

The doorbell rang. I opened the door, I mustered my enthusiasm and and said,

"Trick or treat!"

The children looked at me. I looked at the children. After a moment's hesitation, the children dug in to the candy bowl. As the children started to file back down the stairs, my daughter looked at me.

"Mom, you don't have to say 'treat-or-treat,'" she said coldly, without waiting for my response before leaving.

Did she understand that the aphasia that made me say the wrong thing, I wondered? Or is she already feeling that all moms are clueless, anyways?

I closed the door. Under my breath, I said: "Happy Halloween! Happy Halloween! Happy Halloween! Happy Halloween!"

Sports Fan

I've never been into teams sports, to put it mildly. So my husband has been flabbergasted that I watched at least part of each game of the World Series.

I watched partly because it's harder to have fun with my kids since the stroke--I can't ride a bike, or go skating, for instance--so cuddling with my kids in front of the TV suddenly seems like a great option. Also, I keep reading that learning something new is good for your brain, so learning the rules of baseball at the age of 49 must be great for my cognitive skills, right?  (It's also entertaining for my husband, who still can't believe the depths of my ignorance about the national pastime.)

But the biggest reason why I kept watching because I have been mesmerized by the twisting, turning movements of the players, especially the pitchers. The movements were beautiful. These days I get so focused on the mechanics of walking that I sometimes I forget about all the other movements a body can make, even a non-athlete body. Even I used to be able twist my body to vacuum in a corner, or turn suddenly to chase a child, I keep thinking.

I want to work more on my twisting and turning muscles. Inspiration lurks in funny places.

What I've Been Doing Lately

Recently I haven't been posting a lot. Here are some of the things I've been doing, instead of blogging:

making dinner - some grocery shopping - taking my son to piano lessons and nagging him to practice - looking over the kids' homework - driving myself into the city once a week to go to a class for people who have aphasia - driving once a week to the YMCA to work out - shopping for clothes for the kids and myself - organizing four years of photos - walking to school to pick up the kids four days a week - scheduling various medical, dental, and other appointments - trying to play piano for 20 minutes a day - managing social calendars for myself and the kids - writing emails - doing yoga on the living room floor

Compared to most people--especially if they have a job--my life unfolds at a slow pace. But it's a huge jump from my activity level a year ago, and I'm very pleased about that. I do wish, though, that I didn't feel exhausted all the time.