Sometimes I wish I could explain what it actually feels like to live in this body. I have the insight on this post-stroke, sometimes brilliant, sometimes exhausted version of myself, but I sometimes think it would be easier to pretend that I don’t.
Having the awareness and knowledge can be a weight on its’ own. To be fully aware of changes, struggles, fatigue and stumbles is a heaviness I carry with me everyday.
However, on top of that, there’s another layer which feels sharper. It’s deeply confronting to watch how my disability impacts the people I care about.
I see the worry flicker across their face, their shift in energy when they compensate, accommodate and protect. Sometimes the hurt in my body takes a back seat when I see hurt in their eyes. Witnessing this can be overwhelming in a way that I rarely speak about.
And then, layered on top of that, is how people react to me.
Since my stroke left me physically affected, people often assume I’m cognitively impaired as well. It’s like they see my body and immediately rewrite my mind in their heads. The tone shifts, patience turns patronising and the assumptions pile up. The mental load of having to gently dispose of those assumptions is exhausting.
Earlier in my recovery, I had the energy to correct people politely and regularly. I proved myself time and time again on how sharp I still am and the intelligence I still carry.
Nowadays I choose my moments. Some days, survival looks like letting things slide, not because I lack insight, but because I have too much of it and I know the cost it will take on me. Not every strangers assumption is worth my energy to correct.
I write in my book:
Many ask if I get upset and irritated with some people’s unhelpful actions and attitudes. Initially I was very frustrated and alone when I wasn’t offered assistance with stairs or was not given a seat on public transport. It reinforced why many give up trying to feel accepted and included in society. But a few years into my recovery I met a paraplegic who changed my perspective on this. He said, “See it as an opportunity to educate, Em.” From that day on, I began to try to view each obstacle as an opportunity. Nowadays if people ignore me (as pretending that they can’t see my need is probably easier than not knowing what to do or say), rather than put my energy into getting irritated, I choose to ask for help and explain to them how they can assist me. Usually they happily oblige.
Reinventing Emma, page 241
The people who know me and been on my journey with me understand this and make the weight lighter by meeting me where I am without shrinking me down or inflating my limitations. Their support isn’t loud or dramatic like strangers do, it’s steady, respectful and quietly empowering. This is the support that I am deeply grateful for.
My writing is so important to me because it’s less about sympathy and so important to share knowledge and advocate for the invisible experience that so many of us carry. The insight I have is both a gift and a burden.
It’s important to ask ourselves:
What would the world look like if we honoured people’s insight into their own lives as readily as we honour our assumptions about them?