Marty said, "I act like I feel happy. In fact, I really am happy. But I'm really tired of this"
Marty's husband asks, "Tired of what?"
"Being infirmed.", she replies.
For Marty, "infirmed" covers a lot. I know she is happy to "be" but I also know she constantly fights to think clearly, to see and understand things with an old clarity, and to say what is on her mind and in her heart.
I can see Marty's daily fights with clarity are exhausting for her. She lost what she always thought was the best part of herself, her ability to think and communicate. She's aware she lost it, losing it hurts her heart and she constantly struggles to get it back. It's a monumental and never ending war within her.
I watch Marty in crowds of people. I watch her when we are out at a restaurant. I watch her when we are with friends and I see behind her eyes; I see her mind churning and reeling, trying to engage in a way that is familiar. It tries to fire and just can't quite turn over and start running in the way she remembers. It's frustrating and she gets tired and turns inward. Coping with her new normal, finding ways in which she can function with the constraints of her broken brain is constant and I think, incredibly taxing emotionally, physically and mentally.
Recovery from a stroke, recovery from any completely debilitating event is life long. Recovery requires energy which requires rest. It took us a while but we finally discovered that the more physical and mental R&R Marty could get the better she felt, the better she related, the better she could engage. For Marty the mere act of engaging takes a tremendous amount of strength and energy, she needs the rest. Her daily struggle to participate in the simplest forms of life is the greatest testament she can give to all of us.
Over the holidays I watched Noah, our brand new wonderful grandbaby who is perfect in every way and is probably the smartest kid in the world, lie on his back and watch the ceiling fan as it slowly rotated over his head. He kicked, he moved his arms and his hands and he moved his head from side-to-side. He was constant motion. It's not surprising he requires so much sleep. When he is awake everything is a stimuli and he is firing on all neurons. It has to be exhausting.
I see him and his constant motion and I think of how hard Marty has to work to engage and be a part of all of the things she used to take for granted. I think it's like constant motion in her brain. I'd be tired of it too. I hope, like her, I would never get too tired to keep trying.