I've been thinking about my hemianopia

Sometimes I watch my vision. I watch the kaleidoscope fragments dance through the middle of my world before melting away into the emptiness on the right side of my visual field - it’s not black, it’s just empty of colour, light, form, there’s nothing there, like unconsciousness. Sometimes I watch the words on a page melt, characters on a screen disappear, half of the room vanish. Sometimes I like to stare at a busy road and watch cars and trucks and buses disappear into thin air. Sometimes I’ll lie in bed in the dark, holding my phone above me, and watch how I can make the light move across me from the left and be snuffed out as soon as it crosses the centre of my vision. And I think about how this is my strange experience only, and I can’t share it with anyone. Vision is alienating if you think about it too much.

But most of the time I just let my eyes dance around and I go about my life, now practiced at quickly scanning the environment to fill in the blanks. Human brains are good like that, we can learn new tricks. I can get by, run on my trails, ride my bike. My deficit can go unnoticed and be forgotten. What vision impairment? What stroke? I wonder if no one else can see it, feel it, experience it, if it’s all quite literally in my head, maybe I too can forget about it. Rather than feel alienated, I can pretend it doesn’t exist.

And so I often do. I don’t share the information freely, the lack of tangibility and visibility makes me feel like a fraud of a stroke survivor. I don’t know when to mention it when I meet new people, so I hesitate and feel like I missed my chance and now it’s weird, extra fraudulent, attention seeking.

What vision impairment? I don’t express how it can impact me to those that know it exists. I don’t want accommodations or extra considerations. But when I can’t move my head and eyes fast enough to take in a new, crowded environment, it causes me to feel so overwhelmed and anxious I can’t breathe, and my head starts to feel hot, and the visual aura seems to dance more frantically. It's hard to pretend it doesn’t exist in those moments when I don’t feel safe.

To me my vision impairment is this very real living thing that I share my days with, always there existing only to me. It’s my brain, dancing in my visual field, my subconscious, my inner monologue. Sometimes it feels like a curiosity, like when I’m watching objects disappear, other times it feels callous, mean, moody. It’s a reminder of trauma and resilience, good luck and bad luck. When people ask about it, I feel exposed. It’s a nuanced experience I can’t adequately explain or describe to you.