More often than not Marty was at the center, she was in the middle directing people, places and things. She was loud, brash, funny, incredibly smart and did I say loud? I shussed her once at some hoity toity museum in London and man did I pay for that little faux pas, big duh on my part.
Marty thrived on being at the center, she liked being involved, being in the middle of the discussion or project, it was just her intellectual and instinctive nature. She’s the one who would be in the kitchen giving advice on the stew or in the garage trying to miter cut crown molding, or at least telling you a better way to do it.
In her new life Marty really doesn’t want to be noticed. She is very self-conscious about her condition, her appearance and her capabilities. When she is honest with me she tells me she is afraid people are judging her, making value judgments about who she is and what has happened to her. She wants to be as far away from the center of attention as possible.
Even with a family who knew who she was and understands who she is today; she is not entirely comfortable. Everyone dotes on her, everyone loves her, everyone is truly amazed at her spirit, but she is still incredibly self conscious. More often than not when faced with the chaos of a crowd she gets quieter, more internal and withdraws and would just as soon be having a one-on-one conversation with my mother away from the crowd.
I can understand it. The unfocused stimulus around her just floods her senses. I know her instincts tell her to be right in the middle of things but her brain just won’t let her, it won’t fire fast enough with enough information and it won’t allow her to get up and walk and be right in the center of the action, so she gets self conscious. Her instinct to be involved is short circuited by the limited capacity of her fractured brain; and her natural inclination to be the eye of the family hurricane can’t really be sated. It must be incredibly frustrating. It’s a classic clash of want and can.
The single biggest loss for Marty has been her ability to think and to think quickly and to absorb information from multiple fronts. She is aware enough of her life and her limitations to know what is working and what isn’t working. She hates the struggle to say what she really wants to say and do what she really wants to do.
She listens, she watches, but she doesn’t really participate as she once did and my whole family misses that. I worry I put her in situations that does nothing more than make her feel worse, that just intensifies her sense of loss. It makes me wonder if I am doing her a service by putting her in the middle of the family and friend chaos at birthdays, celebrations and holidays.
After our recent trip to Dallas to fete our son on his birthday I asked her if she liked going up and doing that and she said, not really. I told her I was sorry that I knew it was hard for her to go. She said, as she often does, so very simply, “You didn’t make me go, I wanted to go.”
It is what she wants to do, she wants to be a part and parcel of all of this, she wants to celebrate her family and her friends, she will always choose to go and do, she just might not like it because it is so hard for her to just “be” in those situations.
Years ago my Mom and Dad went to China and stayed for about a month. Right after they got back I asked my mother if she enjoyed the trip and she said, “I will in about a month.” In other words, you do things that are out of you comfort zone, you participate in life that at the time may seem difficult but in the end are wonderful experiences.
That’s how it is with Marty, she wants to go, she often doesn’t like the doing, but she really likes the fact that she did. She is too often out of her comfort zone, her very life today is out of her comfort zone, but in the end, as we look back, being out our son’s birthday celebration is not only the right thing to do but an experience that builds both of our lives.