There is a very rare phenomenon known as anesthesia awareness, where under general anesthesia, during surgery, some patients wake up during the surgery and are aware of what is happening but because of the anesthesia can’t say anything to alert the medical staff that they are awake and aware. I can’t even imagine how frightening, how totally helpless you would feel.
I think, for Marty, that’s kind of the way it is in her head because of the strokes.
She sees things, she hears things, she understands things, she is aware of everything that goes on around her; her brain just can’t bridge all of those thoughts and ideas to her verbal center. She simply can’t put to voice the awareness and thoughts that are stuck in her brain. For Marty, who had few thoughts that didn’t get voiced, who always expressed her opinions, who had a never ending supply of suggestions and ideas, it is torture to listen to the people around her and not be able to participate.
The other day Marty sat in front of the piano, eyes locked on the sheet music for “Dream a Little Dream of Me.” Her right hand was resting on the ivory and black keys of the piano, not moving. I sat to her left and watched as she sat there frozen, mentally processing, absorbing the notes on the paper in her brain and trying to then transmit those notes to her right hand. She was stuck, she knew what she wanted to do, she just couldn’t initiate.
I sat there and said, “On your mark, get set, GO.”
Marty sat there, locked at the page, smiled and said, “Say it again.”
“On your mark, get set,” I paused, looked at her as she intently focused on the page, and said, “GO.”
She started to play, moving her hand across the piano keys with a skill that belies her disability, hitting the single notes, deciphering and fingering the chords, the music lifted from our piano, “Stars shining bright above you….”
Marty played haltingly through the song and then we moved to the next few songs as she worked her way through the myriad of notes, the flats, the sharps, the chords, the time, the tempo; a language foreign to me, one she has been fluent in for decades.
My mother taught me the notes, Every Good Boy Deserves All Good Favors, or something like that, many years ago. I could correlate that to the keys on the piano but it makes for a very, very slow and stilted musical piece when you have to recite the “reminder” for every note you play. The notes, the connection of those notes to the piano are rooted so deeply in Marty’s brain the strokes couldn’t erase them.
After she played the piano for a while I asked Marty if playing, if getting stuck in the process was frustrating.
“Sure it is.” She said. “I know the notes, I know the fingering, I just can’t get my hand to move.”
It is the most frustrating part of her life, the most poignant, the most painful part of brain trauma for Marty. I suspect she is not alone, to have words in you that you can’t get out, to have thoughts and feelings and no means to express them completely and accurately must be excruciating. So much of what Marty was, is still there, stuck, unable to be given voice, unable to be pulled out of her scarred brain.
When there are distractions, when there are a lot of people having multiple conversations, when she is fatigued Marty’s brain, lets her down, it gets locked up, just like at the piano where she knows the notes, she instinctively knows the fingering, in her brain. She can’t get the damn fingers moving in time, in tempo, with the grace and skill of the musician her brain knows her to be. Just like the piano she can’t get the words from her brain to the tongue, her thoughts have no voice, like the notes on the page have no sound.
The brain is remarkably complicated. It takes a tiny pin hole in a tiny blister in very small blood vessels to radically alter someone’s life forever. Microscopic blood cells clotted together, reducing blood flow to parts of the brain can damage enough cells to make even the simplest of life’s tasks insurmountable. Both of these tiny events conspired to damage enough of Marty’s brain to rob her of her voice, but they didn’t take who she is.
The brain can be remarkably resilient, finding new pathways, finding new ways to do some of life’s simplest tasks, or even some of life’s more complicated skills, like playing a piano. Marty has never stopped her recovery. Six years after the first stroke, five years after the second, I still see Marty finding new ways to perform old skills; I still see her brain trying to find ways to free her from the strokes.
On her best days, without distraction, one-on-one, Marty can have a conversation about many things. On her best days Marty can still say things that she knows are funny, that she knows will make me laugh. On her best days, when she feels good, has slept and is focused, Marty can talk to you and get some of those thoughts in her head into the universe. She really had a marvelous brain.