Marty and I were sitting in the living room killing time,
waiting to head to the movies. We were
going to see Side Effects (a good film).
As we were chilling, visiting, and watching Mythbusters our
once every two week house keeper, Robin, started unloading the cleaning paraphernalia
from her car.
Marty says, “Robin is here.”
This is really pretty good because sometimes Marty can’t get
names right, even Robin’s who has been coming to our house for about 15 years. She doesn’t remember a lot of names; they
aren’t high on her list of things to remember and she only has some much
cognitive bandwidth.
I looked out and Marty added, “She’s walking up the uh, the
drivewalk. No that’s not right, it’s the
…..”
She paused, eyes intent, watching, thinking, I waited,
probably not long enough, “Sidewalk,” I said.
“Yeah, that’s what I meant.”
“That’s excellent,” I said.
“It doesn’t matter what you call it.”
She said nothing, just silence.
I always thought Marty was the smartest, sharpest, quickest
witted person in the room. I was both in
love with that thought and intimidated by it.
I think Marty always thought she was the sharpest, quickest
wit in any room. She probably thought in
her heart of hearts she was the smartest person in the room too but she didn’t
ever say it, in those exact words.
She hates to struggle with the words, with the thoughts,
with the statements. I really think
struggling with her words is harder for her than the not walking or the
incontinence or the general loss of independence. She can take indignity; it’s the feeling of stupid
she can’t stand.
I know she isn’t stupid, I think she knows she’s not stupid,
she just feels, less than, deep in her soul so many times during the day when
she can’t easily access the right word or phrase. She has enough of her mind to know how quick and
easy and fluid her chatter used to be, she remembers what a marvelous tool her
brain was. She is well aware she is no
longer the wittiest person in the room and it hurts her.
There are so many times I see her struggling to find the
word, the phrase, the retort, the rejoinder.
I see her thinking and then she turns quiet, she says nothing, or says something
like, “I don’t know”, when you ask her a question. She shuts down because she is afraid she
might say the wrong word, she might say “drivewalk” instead of sidewalk, she
might feel stupid, she might be embarrassed…..she might be reminded of what
once was.
She is probably least cautious with me; she knows I know who
she was and who she is now, she knows I accept her today, just as she is. I have told her time and time again how far
we have come on our journey and how proud I am of her struggle. I don’t
care if she says the wrong word I just want her to say words; that’s why I’m
here to help her with her struggle to find the words and interpret the thoughts.
I know how far we have come. I remember when she first came home and she
was crying to express herself, she was constantly perseverating, and we often
resorted to rudimentary sign language to communicate, to get her to
respond. I know how much better we are today, for Marty
that’s small consolation.
The improvement is accepted but ultimately, to Marty, it
doesn’t make up for the loss. She feels
self-conscious, mentally slow, and inarticulate. Ultimately, she feels stupid and we never did
stupid at our house, we unfortunately, never really tolerated slow to the lip. We did sharp, verbal diarrhea at our house.
Life changes, events in our lives change us cataclysmically
and irrevocably. Marty has lived
it. Accepting the change, embracing the
new normal is almost impossible; it’s even more difficult when you feel like
you have lost the best part of yourself, that part of your essence that made
you strong and confident.
If you get a chance, talk to her, draw her out and
watch. If you watch her you will see her
thinking, you will see her struggle, you will see that her mind, while not as
sharp or quick is still there, calculating, trying to find a way out of the stroke
clouded brain.
Marty’s broken brain does not make her stupid; it makes her
different from what she was. It’s all
part of our evolving.
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