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.