Two things coming together: my reading Diane Ackerman’s moving book One Hundred Names for Love (2011), about her husband’s aphasia following on a stroke; and a Stanford Report piece on Mark Applebaum’s performance piece Aphasia. Both stress the expressive deficits characteristic of aphasias and the distress these deficits produce in the aphasic.
I’m very close to the topic, having gone through 12 years of watching my man disintegrate from dementia (brief medical history here, notes on Jacques’s linguistic abilities from 1998-2002 here). Over the years I’ve read quite a lot on aphasias and dementias, strokes and TBI (traumatic brain injury); curiously, as Jacques’s death (in 2003) recedes in time, this literature has become more painful for me rather than less. (I find it especially difficult to endure the tales of the heavy burdens on caregivers.)
I was alerted to Ackerman’s luminous book by a posting (“The unbearable loss of words”) by Julie Sedivy on Language Log about it. Ackerman’s husband, Paul West, is a writer, and suffered terribly from his loss of words (and information) — but he recovered, bit by bit.
Then there’s Mark Applebaum’s piece. Applebaum is an associate professor of music at Stanford and a prolific composer (honored year after year at the Stanford Humanities Center’s authors’ reception — composers count as authors for the purpose of this annual entertainment; this year’s event is next Tuesday). From Camille Brown’s Stanford Report story:
Aphasia is a 9-minute piece expressly written for a “singer” to perform without making a single sound. Premiered in February 2011 during a Stanford Lively Arts event, Aphasia consists of hundreds of transformed vocal samples derived from the voice of professional baritone Nicholas Isherwood and set to a score of hand motions coordinated to each sound.
While the piece was inspired by a conversation between Isherwood and Applebaum, the idea to write a piece for a mute singer with hand motions was Applebaum’s own “obsession.” His intention was to have Aphasia come across as a metaphor for “expressive paralysis,” something that unnerves him every time he “confronts the terror of composing a new piece.”
There’s a video of the whole piece on the Stanford site. For whatever reason, I found it riveting rather than distressing — though it did recall the experience of so many Broca’s-type aphasics of starting out being able to articulate only some nonsense syllable, over and over again. (For Paul West, it was mem.)
Paul West also recovered poetic and professorial vocabulary well before he recovered everyday vocabulary (leading to some significant misunderstandings by speech therapists). Jacques, going (roughly) in the opposite direction, preserved only some language of this sort in his last days. From my report to friends a few days before he died:
.. it seems likely that his last words were a few things he managed to whisper on Monday. There were three. One was said apparently in reference to something he saw where the rest of us saw only a blank wall: “Voici!” Yes, in French. Well, French was his first language.
Then, twice he seemed to be in discomfort and, we guessed, tried to ask for some help. Alas, jacques has always been a very polite person, so instead of gasping “Water!” or “I’m cold!” or something that might conceivably have been useful, he embarked on politely indirect requests, first “Would you be able…” and then “If you were to…” A few words in, of course, his strength failed and he wasn’t able to keep articulating, and he probably also forgot what he was going to say (that’s been happening for years).
What was left of him: a little French, a lot of politeness, some astonishing syntax (a counterfactual conditional!).