Friday, June 21, 2013

June Is National Aphasia Awareness Month

June is National Aphasia Awareness month. 

Here in Massachusetts, there will be the first Aphasia Awareness Day at the State House on Thursday, June 27. If you live in Massachusetts, please join us between 11am and 2pm to raise awareness about this communication disorder. The event will include information about resources for people who are living with aphasia and their families and friends. For more information, see Justice 4 Aphasia. Many thanks to Karen Kelly for making this happen.

This might be obvious, but I'll say it anyways: these kinds of events are important because so many people who have aphasia cannot speak (or write or read) for themselves--and people who can't speak for themselves can't get the services they desperately need.

For people who don't live in Massachusetts or can't join us at the State House, there is a growing number of online resources for people who are affected by aphasia. A good place to start is the National Aphasia Association and its directory of  support groups and centers that offer speech therapy and courses. Also, if you are on Facebook, there are also at least two pages that are great places to connect with other people who have aphasia and their caregivers: Aphasia Recovery Connection and Living Successfully With Aphasia (sorry, I don't know how to link to a Facebook page).

Saturday, June 8, 2013

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.)