Everyone’s aphasia is unique because every human is unique. Damage from stroke or brain trauma as well as the progression of primary progressive aphasia differs from person to person. Moreover, everyone’s reaction to their aphasia is different.
Lauren Marks talks about the unique presentation of aphasia in her book, A Stitch of Time (our current online book club selection).
Everyone’s Aphasia Experience is Different
Towards the end of the book, Lauren talks about how her social group moves to encompass other people with aphasia. The group is diverse, including a range of ages and nationalities. But Lauren is surprised that their aphasia experiences differ greatly, too.
She writes on page 300 about a new friend who developed aphasia when she was also in her twenties after a stroke. She was able to recover some of her language abilities, and the two women discussed their experiences:
And one afternoon, as we sat down over a glass of wine facing the River Thames, I asked about her inner monologue going mute. She had no idea what I was talking about. This had never happened to her. She told me that she had the same knowledge and sense of identity she always had. Like Lordat, she knew what she wanted to say, and the main struggle was that she couldn’t express that knowledge.
Lauren marvels at the idea that a person could experience aphasia and not lose their inner monologue. This is so different from her personal experience with life after a stroke.
Everyone’s Aphasia Reaction is Different
It’s not just the experience of aphasia. Lauren discovers that everyone has a different reaction to their aphasia. Lauren sees the positive aspects of her situation, including the ability to fall in love with language again as she reacquires it through speech therapy. She also recognizes that other people do not see the silver lining in their aphasia; that they see it as an impediment to expression.
On page 93, she marvels that relearning English makes her excited. “When I approached words now, it was with reverence again, an easy sense of awe. Recommitting myself to the contract of language was thrilling, but it also made me a tourist in my native tongue.”
Travel plays a large role in Lauren’s life — her stroke occurred while she was overseas in Scotland — so it makes sense that she approaches relearning language from a place of wonder. But I often wondered as I read the book how much other people would relate to her reaction.
Would they feel the same sense of wonder, or would their reaction be closer to frustration? After all, every manifestation of aphasia is unique, as is every reaction to it.