Marty and I are miles from where we started. Her progress, her improvement from the early days of the strokes is really amazing given our starting point.
When is enough, enough? When have things progressed as far as they can go, when do you arrive at “as good as it gets”? How do you know when it is time to accept the losses, accept things for what they are? It’s a question that has been banging around in my head since I had a brief conversation with my trainer about a dead turtle.
I have been working with a personal trainer now for a couple of years, you would think, as hard as I work, I would be svelte, but only the morbidly obese would call me svelte. Gretchen, the trainer, has pushed me, prodded me, goaded me, listened to me, talked to me and been my fitness muse for the last two years.
Gretchen is an absolutely fascinating woman. She’s a very private woman and you need a can opener to pry her open to find some of the real Gretchen. I love the challenge of plumbing the depths of private people and she is a genuinely private interesting woman who has lived an interesting life and is a paragon of fitness and nutritional virtue.
Gretchen, bless her black heart, has me doing all kinds of things I would not have thought I could still do at my advanced age and suspect height to weight ratio. She is sneaky about it, she just simply says, “Here, put these things under your feet, put your hands on the floor and drag your tookus across the floor like a young man.”
I say, “Okay, I can do that,” thinking this should be easy, it’s not.
While you are sweating and depriving your brain of oxygen Gretchen chats you up to help you forget the pain and the general lunacy in the physical act of jumping on and over a ½ ball thing. The chatting is pure misdirection to take your mind off the pain.
We were talking about pets the other day. She has three dogs, two cats, no fish and no birds because apparently the birds get eaten. She does have a turtle. She used to have two turtles that her sister gave to her youngest daughter. She told me one of the turtles died and she had to bury the turtle one weekend when her daughter was gone.
The real point to all of this was the simple question, “How do you know when your turtle is dead?” When do you accept what is?
I mean think about, what does a turtle do when it’s alive that it doesn’t do when it’s dead? Can you check to see if their breathing, check a pulse; look at their pupils, anything, anyone?
With Marty (I know, it’s a leap), it’s not about a dead turtle but have we reached the best it’s going to be? I would really like to know if we are at the apex of her recovery and if we, mostly me, need to understand and accept that reality. I want to know if this is where her cognitive abilities peak, if this is where my understanding of her understanding is as good as it will ever be. The real question is when do I stop pushing her and when do I cap my own expectations of her and me?
There are days I get frustrated, there are days I get mad at the slow, turtle like pace of change. At times, because I am right up close in the middle of everything, it’s hard to see if there is any change, if there is any improvement. It drives me a little crazy. I don’t know if we have leveled off, I don’t know if cognitively Marty will improve anymore, I don’t know if we have peaked and this is as good as it will get. I know we have come a long, long way. I know where we are today is markedly better than where we were five years ago, I just want to know if five years from now, as we look back, will we look back and see even more progress. What is real, what is unrealistic optimism?
For me, it helps me to tamp down unrealistic expectations if I know and understand what is real, what is possible. It’s key for a reasonable perspective. Preconceived notions of what we want, of what we would like to be, can be incredibly disappointing and frustrating. I get angry when my happy expectations are slapped with the cold reality of this disease.
They tell you that after about six months of recovery from stroke or other traumatic brain injury you are what you are, you have reached your peak recovery. I reject that notion. It’s been six years since Marty’s second stroke, she still works at recovery every day, she still finds new versions of old skills. The brain continues to find new paths, new ways to do things.
The question is when is it enough, when will we be at the best it can be, when do we bury the turtle?
Gretchen said she just watched the turtle for a couple of days; it didn’t move or look alive so it was dead to her. A lesson for living in her house, you had better be moving or you get buried in the backyard.
I don’t want to think we are done. I don’t want to think Marty can’t continue to get better. Marty has always thought she would continue to get better, on this she has never wavered. One of the mantras of recovery is, “I’m better today than I was yesterday, I will be better tomorrow than I am today.” Believing this, Marty has never stopped trying, she has never simply accepted life as is but has always looked for life as it might be. Maybe that’s the answer to the question.
It would be better if the damn turtle would just turn belly up, but that would be too easy.