Challenge 1: Planned Spontaneity

On Friday I took my kids on spur-of-the-moment outing to Wilson Farms, a deluxe farm stand that I love. I've been there two or three times since the stroke, but this was the first time I went there with the kids and without another adult to help. I hoped that it could be a short trip with something to please everyone: a talking bird in the greenhouse (kids and me); luscious displays of fruits and vegetables (me);  barn with a few animals (kids); free samples of prepared foods (everyone).

Shopping--especially with kids--can be challenging, with or without a brain injury. Things didn't start out well. On the way there, my daughter was cranky enough that I had to pull over to wait for her to stop whining. Then, when we went into the greenhouse, we learned that the talking bird it had died. And then, my daughter balked at the idea of going into the barn without me (the stairs aren't very accessible). Thankfully, my son went in by himself and was entertained by the animals for a while.

When we went into the main store,  the crowds were in a pre-Easter frenzy. I had to respond to my kids' constant requests for purchases: kids' gardening gloves (no); garden clippers (no); pink tulips (no); daisies (yes); 3 lbs of strawberries (no, just 1 lb); a pint of blackberries (no); cheese (yes). My daughter was also in a frenzy about finding free samples. We came back about $25 poorer, with provisions we probably could have lived without.

In the end, it wasn't a disaster, but wasn't a great triumph, either.  But it did get me closer to my real goal: having spontaneous adventures, especially with my kids. These days I tend to plan every outing meticulously, because it's such a fine line between something that might bring joy to my family and me--or bring me to the point of utter exhaustion and frustration. But at some point, I would love to be able to get out without much preparation--and go.

The flowers I bought weren't very happy that I was
so spontaneous that I forget to put water in the vase first

Four Weeks, Eight Challenges

When I meet someone for the first time now, I'm not sure if they know that I had a stroke. They see that I have a limp and use a cane; some people might notice that I’m a little slow in answering questions; or another person might notice that I don’t use my right arm much. But I think people don’t always realize that I have a brain injury.

But I actually want to tell them about the strange journey I’ve been on over these three years. If I’m having a bad day, I might want  some sympathy and understanding for all my disabilities, especially the invisible ones: the fatigue; the spasticity; the tendency to be easily  overwhelmed--I could go on and on. (And I want some sympathy for my husband, too.)

On good days, I want to tell them about how much progress I’ve made, and continue to make. For instance, just since the new year, I drove myself to PT and back; I’ve tried several new recipes for dinner, instead of the old tired recipes that I’ve been using since 2010; I’ve taken my kids to the doctors, by myself--to name a few accomplishments.

So I’m going to make a series of posts about my recent “firsts”--things that I just started to do for the first time since the stroke. I’m also going to challenge myself to try new things on a faster schedule.  And then, of course, write about it. My goal is to challenge myself twice a week for four weeks.

I always think that I’m pushing myself a lot, but I know that having a public deadline can make things happen faster. Wish me luck.

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.