Anybody need
a little help second-guessing themselves today?
I think I have the book for you!
When I write
my blog, I typically summarize what an author has said and relate it to senior
care and the activity profession. In
this case, I had some difficulty in summarizing the book “A Stitch Of Time,” by
Lauren Marks. Her wording is so precise
and meaningful that “summarizing” ends up muddying the prose rather than
simplifying it. What makes this
remarkable is that the author is the survivor of a stroke which left her
aphasic.
Aphasia
isn’t rare. Somewhere around a third of
stroke victims will experience aphasia, an impairment of language involving
speech and/or comprehension of speech, and possibly reading or writing. From the Greek a “not”+ phanai “speak.” Other sources of brain trauma or disease can
also lead to aphasia.
We might
think of language as simply a tool for communication with other people, but it
is much more. We also use it to
communicate with ourselves. Marks talks
about the uses for external language and internal language, that inner voice
that you use to ask yourself questions or sort and label thoughts. She explains,
“Language is
wrapped up with our current and remembered sense of identity. We assign certain words to an experience, and
some of them become part of our telling and retelling of the event – the script
of our lives” (vii).
And,
“We use
words to describe ourselves to others, but also to describe ourselves to ourselves. This makes language and
memory often inextricably intertwined” … “Memory is a constant act of creation”
(viii).
Marks considers
herself to be fortunate. She pretty much
lost the ability to read or write, and her speech was profoundly affected. But because her inner voice was also muted,
she was unable to register how bad her speech sounded. And she was blithely unaware of how
devastating her situation would have appeared to her PhD student, pre-stroke
self.
“With my
internal monologue on mute, I was mainly spared from understanding my condition
early on. Unable to ask myself: What is
wrong with me? I could not, and did
not, list the many things that were. I
was no longer the narrator of my own life” (20).
While still
in the hospital, she had picked up a book and realized that she couldn’t read
any more. There was a momentary
disappointment, she says, but without the words to think about it, the
disappointment quickly passed. She also
tells of the moment she first picked up a magazine. The graphics were too visually stimulating,
“shouting” at her, and she put it down quickly (6).
With one
side of her brain damaged by the stroke, Marks experienced her environment in
new ways. The functioning side of her
brain was much more vigilant and sensory oriented. Without the distraction of language, it
hyper-focused on her surroundings. She
felt an “interconnectedness” with the world around her (20).
Another new
sense was of serenity, a pleasant, peaceful, almost meditative state that
occupied her consciousness when left to her herself. Lacking the constant chatter of an inner
voice, she could think but without noise.
She labels that meditative state “the Quiet,” and she valued it
intensely (18).
“It was a
placid current, a presence more than an absence. Everything I saw or touched or heard pulsed
with a marvelous sense of order” (3).
But the
agenda of those around her, who cared about her, was to pull her out of the
Quiet and into language use. In other
words, speech therapy, family visits, conversations, and recovery-oriented
activities worked against what the author then considered high quality of life. Marks recalls that as soon as a visit or speech
therapy would end,
“… I would
gently be redelivered to the happy stillness of the pervasive Quiet”(11).
As Marks
progressed in recovery and her language skills, both external and internal,
improved, she struggled with the actual meaning of recovery. If language, thought, memory and identity are
so closely entwined, and so malleable, who exactly IS the person recovering and
what identity are they recovering TO.
She expresses frustration with family and friends who seem fixated on
her returning to her pre-stroke identity, when she feels like she is in the
process of establishing a new identity.
In terms of
care planning for someone like Marks, we have several issues to balance:
Are we
attributing thought processes or feelings of loss that are not present? I certainly feel that being aphasic would be
frustrating for me, and it is easy for me to project that emotion onto someone
with the condition. But Marks and those
around her noticed that she wasn’t that disturbed about it, especially at the
beginning.
Also, how do
you define quality of life for someone who can’t communicate well? Marks valued the “Quiet.” Most of those around her were unaware of what
it was or that she enjoyed it so much. What if our agenda of promoting social
interaction and stimulation are actually depriving the person of what they feel
provides quality of life at the time?
But what if quality of life at the time is at odds with the goals of the
person who that individual was before the stroke? And what if quality of life at a certain
stage is at odds with the goals of the person who the stroke victim will become
as recovery progresses – if it progresses?
To whom do we as caregivers owe our loyalty and person-centered care
planning? Obviously, we encourage, we
flex, we try different approaches … we might even manipulate. Part of our expertise in person-centered care
is in figuring out what works. But for
whom? In this case, the author during
the worst symptoms vs. the author before the stroke vs. the woman writing this
book –each was the same person, but each would have had different
preferences/goals.
So, now you
have some more fodder for second-guessing yourself as an activity care-planner. You’re welcome.
© Donna Stuart, ADC February
18, 2019
Marks, Lauren. A Stitch Of Time.
New York: Simon & Schuster, 2017.
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