I met Larry while volunteering at a center for people with Aphasia. Aphasia is a speech disorder brought on by an injury to the brain- a stroke, or an accident. It hinders the ability to speak, to get words out, or when trying to say a word the wrong word comes out. The center has many different classes throughout the day, one of which is computer, where different programs are used to regain reading and language skills. I volunteered as a computer facilitator, helping members through the exercises in the programs. Larry was one of these members.
Larry did not have the type of Aphasia brought on by brain injury. He had Primary Progressive Aphasia, a form of cognitive impairment that involves a progressive loss of language function. It is caused by degeneration in the parts of the brain that are responsible for speech and language. It begins very gradually and initially is experienced as difficulty thinking of common words while speaking or writing. It progressively worsens to the point where verbal communication by any means is very difficult. The ability to understand what others are saying or what is being read also declines. In the early stages, memory, reasoning and visual perception are not affected by the disease and so individuals with PPA are able to function normally in many routine daily living activities despite the aphasia. However, as the illness progresses, other mental abilities also decline.
Larry was 62 when he began showing the signs of PPA. When I first met him he carried a briefcase with papers containing the work he had done as an architect and builder. He was always proud of his work, and shared with me the many projects he had worked on. We sat together at the computer for an hour twice a week and went through the programs that dealt with definitions of words, unscrambling sentences, reading and comprehension. He was aware that there were things he couldn’t remember or struggled with, but always said he didn’t understand why this was happening and why he couldn’t understand things. He was already robbed of the ability to make sense of the disease he had been struck with. He repeatedly told me he hoped the doctors could fix things for him. It was truly heartbreaking knowing there was nothing the doctors were going to be able to do, and his abilities would continue to decline.
We forged ahead week after week, though he stopped carrying his briefcase with his work, as he no longer really understood what his life has been and the work he had done. I watched him lose the ability to understand the meaning of words, when given three choices for a definition, he could not choose one. His decline forced me to start using uncomplicated programs, basic and simple, until those too became too challenging. I attempted to focus on the things he still could do, and felt awful about his awareness of things changing, and his inability to understand why the changes were occurring.
Over a period of close to three years I watched as Larry could no longer make sense of words and numbers. His response often when I would tell him the correct answer for something was “That’s an oddball.” As if now learning the meaning of a word was a new and strange occurrence for him.- so out of the blue. It was that regression into a sort of innocence that always pained me. Something so basic, that now seemed so profound to him.
I met with him on Monday and Wednesdays, and one Wednesday I came in and he asked me who I was. He had lost his ability to recognize faces. It was shortly after that he left the center, it was no longer able to provide the classes he could partake in.
Larry died two years ago, and his family is donating a new computer lab to the center this month in his memory. I received an invitation and it took me back to those years, when I first met him, when we would talk about his life before the center, when we would talk about why he couldn’t understand things, until we couldn’t talk at all anymore. It reminded me of the struggles he faced, that his family faced. It reminded me once again not to take for granted the abilities we have, the blessings in our lives, that something so basic as knowing the meaning of a word, or the ability to say that word, is not so basic for some.