She’s broken or she’s better
This week, I was talking with a fellow stroke survivor about the way that others classify us. The way that doctors classify us. The way that we classify ourselves.
And the huge disparities in between.
You see, what is on the outside doesn’t necessarily match what's on the inside or what we perceive as our own deficiencies. We undeniably fall under the stigma that we are broken until we are better.
That leaves me wondering, what is the definition of better?
The simple definition of recovery is a return to a normal state of health, mind, or strength.
By this definition, I am unequivocally not better.
Who gets to choose our version of better?
Is it enough to be able to cook our own meals? To walk? To be able to make our own decisions? To be able to keep up with the fast pace of life?
I realised that I need so much more than my pre-stroke self did. I need you to stay by my side when we are in a new situation. I need that you treat me kindly, in a way that I didn’t expect before. I need you to have patience with me.
I found this, and the realisation of it, an incredibly debilitating aspect of my stroke. I was full of independence before, but now I wait in the shadows to peek my head out and see if it’s safe to enter your world.
All hell breaks loose when I get it wrong, as I often do. But if you're honest, you don’t see that side of me, do you?
You classify me as better. And that’s unfair.
I have become a master of the black or white. There are no in-betweens for me. You either see a well-put-together master of disguise or a shockingly, unraveled woman coming apart at her seams.
In the words of a not-so-wise doctor: You can walk. You can talk. You should be happy. He said this to me about a year following my stroke.
It made me so livid that I am still talking about it, a half a year later. I think by saying that, he made an erroneous, flawed judgement based on his perception of what better looks like. He unjustly didn’t listen to what I was asking him.
I wasn’t asking him his thoughts on my recovery. I didn’t expect that he could fix me. I was simply asking him for a referral.
However, his cavalier, off the cuff remark made a lasting impression on me. I was mad. At him and all people who think that they have any right to make snap judgements on my recovery.
As I paid the bill from that doctor’s visit, I had to laugh.
He classified me as broken. And that’s also not fair.
It leaves me pondering the question, why do others have a say?
If you don’t mind, I will say for myself what better looks like.
For me, it is not enough to walk and talk again.
I want to be able to create things.
I want to run a marathon.
I want to help my children with their maths homework.
I’m not better until I say so. And only then. If I decide along the way that better takes a different form, I reserve that right to change my path. As well, I reserve the right to figure out what Stacie 2.0 looks like thru searching high and low, discovering what makes her tick and combing thru all of her guts and glory.
Why does it matter to me? Shouldn’t I just get on with it? With my recovery, with my life and everything in between.
Who cares if you finish my sentences for me? Do I really mind if, from your perception, hobbling around on my good leg is good enough?
Here’s the thing, it does matter to me and I would be lying if I said otherwise.
I only want to surround myself with people who get it.
I am in the process of creating an arsenal of therapists, doctors and a village of people who not only get it, but want for me to go thru this process of redefining myself and come out better from it.
This week, in particular, I strongly considered giving up. I felt exasperated by the overload of life + recovery + you.
I can see how this happens to my fellow stroke survivors. It just becomes too much and the expectations of us are too little… or too high.
For others, stroke recovery is not visceral. You see only what you want to see. However, for the survivor, we don’t have that luxury. When I wake up, I don’t expect anything different than what I went to bed with the night before.
However, what I do expect is my will, to keep pushing, to find my new self amongst the rubble, to stay present in my mind. I expect that my sharp memories of where I started and how deeply important it was for me to find that new self don’t fade.
I read that a mere 10% of stroke survivors actually fully recover and it leaves me feeling heartbroken. To not regain me, in all of its chaotic brillance, to not be able to find my 2.0 whatever she looks like, brings me to tears.
So with that, I pick my exhausted self up, though battered, though not better but decidedly unbroken, one more time and force myself to soar.