Dependence

Last week a friend invited me to a get-together at her new home. I was feeling adventurous, so I drove myself. It was the first time since I got my driver’s license back that I drove to a place I’ve never driven to before. It was very nice to be self-sufficient. I even had the mental and physical energy to remember to stop and get some flowers on the way there.

But driving myself is also bittersweet. For almost three years, I’ve relied on rides from so many people: friends, family, neighbors, writing group members, fellow church-goers, friends of my parents, caregivers--to name a few. I know that for the people who have gave me rides, it has not been without cost: most people have many other commitments that compete for their time. But for me, it has been one of the unexpected gifts for me of the stroke. Without that space in time that cars can provide, I would have missed out on so many interesting stories. People have talked to me about their the work projects; their own family dramas; the political causes they're dedicated to; their pet peeves; their personal histories that they wouldn’t divulge with children around. There are so many corners in people's lives I wouldn’t have discovered without my years of forced dependence.

The Words to Say It

A little more than a year after stroke, my therapies were winding down. I needed to try something new, maybe a class. Several family members and friends suggested seated Tai Chi or yoga classes. I tried to be enthusiastic.

People assumed that I would be more comfortable in a chair. It was hard for me to move, right? But when I finally went to the gentle, i.e. seated, yoga class, I knew it was the wrong thing. I stopped going.

At that point in my recovery, there were still so many thoughts that I couldn’t articulate because of my aphasia. But there were other thoughts I couldn’t say because my vocabulary, even pre-stroke, didn’t include many neurological terms. I was lucky that I had heard the word aphasia before the stroke, thanks to writer Oliver Sacks. But the word proprioception--and the concept--were still new to me. After the stroke, it took me a long time to figure out that the general feeling of loss on my right side was different than say, the numbness I had felt from local anesthesia at the dentist’s office. In fact, I’m still mulling over the difference between lack of sensation and lack of proprioception.

So I couldn't explain that it felt precarious to do exercises in a chair, especially the flimsy chairs at the yoga class. Not because of balance issues, really, but because I didn’t know where the right side of the chair--or my body--was.

About a year ago, I found a great yoga teacher. She comes to my house about once a month. Most of the standing poses are beyond me, although sometimes my teacher cajoles me into trying a standing pose with the kitchen table to stabilize me. But usually, we work on the living room floor. When I need to stand up, I do have enough strength to haul myself up with mostly with my left leg, or  using the couch as a prop.

But I like being on the floor. There aren't any edges.

Coming Soon: "After Words," a Film about Aphasia

If you're reading my blog, you probably know what aphasia is, and how devastating it can be. But so many people have never heard the word. Raising awareness of aphasia--what it is, and how it can radically change a person's life--is important. It will help more people to get the support they need to lead a productive life.

So I'm really happy that After Words, a film about living with aphasia, is airing on many PBS stations, including WGBH in Boston. It will air in Boston on February 3 (Super Bowl Sunday) at 3pm. If  your local PBS station isn't on the schedule that the National Aphasia Association has published here, ask your station to air it.

Please watch it, talk about it with friends, and use the word "aphasia." Talk about how Gabby Giffords has it. Or how common it is: more than 1 million Americans are estimated to have it, and countless family members are affected, too.

In addition to the PBS showings, there are two special screenings in Boston (March 3) and New York (April 10). The screenings include conversations with cast members, the directors, producer, and (in New York only), Oliver Sacks. 

Full disclosure: I'm in it; my kids are in it; many of my friends from the Aphasia Community Group of Boston are in the film; and one of my former speech pathologists, the amazing Jerry Kaplan, is one of the directors. 

Here's a trailer from the film.

Out of the Comfort Zone

Right after the stroke, I was warned repeatedly to be very, very careful. So I was. I went without falling at all for more than six months after the stroke. When I did finally fall, it was a very gentle plop in my backyard. I've stumbled some other times, but I've always been able to catch myself.

But since October, I've fallen three times. The last time was Monday, when I got up early (very unusual for me) and decided to go outside to get the newspaper with my PJs and  robe on. As I was climbing up the four steps up to the porch, with the newspaper clutched under my right arm, I suddenly lost my balance and fell sideways. I landed beside the steps, into a pile of plastic shovels. I broke my daughter's play shovel. I got a scratches on my right hand knuckles. My dignity was hurt. I was shook up.

Sometimes a little thing can mess up my balance: an especially windy or cold day; an outfit I haven't worn much; two steps that don't have a place to grab on to; holding something I usually don't hold. That day, I was challenged by all these things. (That, and my lack of coffee.) Usually I'm meticulous about preparing myself, but I didn't do that on Monday. I just wanted to get the damned newspaper.

My husband and I agree that, in some ways, it's a sign of progress: I'm  pushing at the edges of my comfort zone. I just hope that I can get through this phase of my recovery without any more serious injuries than scratched knuckles.

What Kind of Mother Am I?

I walk to pick up my kids at school most days. It's tricky to walk and have a conversation at the same time for me, so I go very slowly  and lean on my cane at lot. But on the weekend,  I try to squeeze in a walk alone. That way, I can concentrate completely on my gait: am I walking evenly? Can I push myself to walk faster? Am I remembering to swing my right arm?

But even on weekends, sometimes the only way I can get a walk is to have my seven-year-old daughter tagging along. She chatters on, making me wish that my walking could be more automatic, so that I could have a real conversation with her. But instead, I'm rather stern: please don't walk right beside me, I say, because there isn't room for me, my cane, and you; please don't walk right in front of me, I say, so I won't trip.

A few weeks ago she accompanied me, and I strongly suggested that she walk behind me on the narrow sidewalk, so I could concentrate. So she did, but she still kept a running commentary.

"Oh Mommy," I heard her voice, " you're not using your cane much! Good job, Mommy!"

A few steps later, she commented,

"Mommy, you're walking almost normally!" Then she observed a little bit more.

"Actually, Mommy, you walk a little like a robot."

Almost normal mother. Robot mother. Watched mother.

Sweeties

Right after the stroke, I had to practice saying (and spelling) my children's names. At this point, I still confuse the two names, but probably not more than other parents who don't have aphasia. But just to simplify, when one of my kids has helped me, I usually just say,

"Thanks, Sweetie."

The problem is, my brain can't switch tracks easily, even now. So when I want to thank someone--anyone--I often can't stop from tacking on a "sweetie" after the end. The cashier at the pharmacy, my neighbor who is twenty years older than I, the UPS driver--they're all my sweeties, now.

What's in a Name

Many people are puzzled why I called blog "My Happy Stroke." Even I forget why I chose the name sometimes.

So I wrote About My Blog's Name, partly to remind myself of what I was feeling in the early days of my recovery.

You can click on the link above, or on the right-side column on the homepage, after My Stroke Story.