Jacqueline Hinckley's Weblog

Walking down the new wide sidewalk on Bruce B. Downs, I see two older people on scooter-style wheelchairs headed towards me. I mosey over to the right hand side of the sidewalk, so there will be plenty of room to pass. The older gentleman, leading the way, with a woman behind him in her own scooter, veers towards the middle of the sidewalk, and then the left side of the sidewalk. I wonder if he has a visual-perceptual or other visual problem, or maybe an attentional disorder that makes him tend to go towards any landmark. I scoot a little more over, and he heads right for me. I step off the sidewalk and stand still in the grass, to let them pass. The man pulls his scooter right up alongside me and stops. He holds out his hand and says, “I had to make you stop or you wouldn’t accept this pet rock!” He hands me a small rock, a pebble really, something about the size that some people would wear on a necklace. Glued to the small rock were two of those little black and white movable eyes, the kind we used to glue to things when we were kids. There was a mini blue pompom on top of the rock for hair. “Thank you”, I say. Immediately the man turns his attention back to his handlebars, and takes off. Coming up behind him, but never slowing down, the woman calls out as she passes by, “It will give you a lot of good luck!”

I am standing on Bruce B. Downs holding a small pet rock. Was this rock meaningful to them, in some way? Was this their idea of a “random act of kindness”? Were they carrying a scooter-basket full of pet rocks, giving them out to anyone who crossed their path? Did they have many family and friends to give pet rocks to, or nobody to give anything to? Would they remember that they had given me the pet rock? Would it be out of their heads as fast as they had driven away?

I don’t know what this pet rock meant to them, but it must have meant something; otherwise, why do it? The pet rock has a place of honor on my desk. It seems to exude a very good karma.

Aphasia, they say, is an impairment of all modalities of language, including listening comprehension, oral expression, reading, and writing, due to a brain injury like stroke. This definition is technically correct, but incomplete.

I first learned that this was an incomplete definition as a Master’s student, serving as a resident assistant for a specialized aphasia rehabilitation program. Every Friday night after our early dinner, I watched a gentleman in the program dress carefully in a classy suit, shined shoes, pocketchief and matching tie. He would rap on our door with his gold-tipped cane, pull out a 3×5 card from his coat pocket, point to some of the words written there, and say “koo koo?”. These were the only words he could say. But he was asking us to call him a taxi to take him to the bar of one of the nicer hotels in town. We could see on his card that he also had the address of the hotel written down, and the address of the residence where he would return to at the end of the evening. In the interim, it was apparent that he successfully ordered his drinks, and by all reports he managed to get his usual, favorite cocktails. He would return no later than 10 p.m., cheerfully waving to thank us for checking on him, and uttering a slightly slurred “koo-koo” as a “good night”.

I think of some young men who had strokes with aphasia in their twenties. One of them spent a year and hundreds of job interviews determined to return to work. Another one, who had been a salesman, tried for many differen jobs, finally accepting a pizza delivery job. “Just pizza, you know”, he told me, “but working, working. And then next one, better.”

Another person, who also had had a stroke at a relatively young age, went from working as a highly educated professional with a graduate degree to working as a janitor. He did this, remaining independent and pursuing new computer technologies that helped him to write and communicate with people, for over 20 years. He tirelessly worked to get information and articles about aphasia out to newspapers, magazines, and professional conferences. At a national convention for people with aphasia, at the end of his talk, he stood in front of hundreds of people and yelled out, “I am proud to be aphasic!” And the entire audience clapped and cheered with him.

There’s a lot more to aphasia than the impairments. The impairments are the things that make the distinctive signature of aphasia, how we know that someone has aphasia after they are tested or evaluated. But for the person with aphasia, the list of impairments is just a gateway to a new journey, a new life, what Cleo Hutton described as “stroke-land”.

Speech-language pathologists have a very unusual role in all of this. We figure out when someone has aphasia, or doesn’t. We recommend and provide therapies that help the person improve language and communication skills. We share information about aphasia, what happens over time, and how the person can get back to doing the things that are important in his/her life. We serve as guides, helping to bring people from a place and time without aphasia to a new place and time with aphasia. And yet, we ourselves have never experienced what it is like to live in that “stroke-land”.