Choices.
Why would you ever choose anything different?.
It’s a heavy, hot Saturday night. Wall clock ticking, clothes sticking like a second skin. The air feels already used when I breathe in. I can hear the neighbours watching the World Cup. My friend Simon knows none of this because my friend Simon is dead.
Simon died from the epilepsy that he endured from the age of 3. Atonic epilepsy. Drop seizures.
If you imagine the invisible man knocking someone out with the ferocity of prime Mike Tyson, with that fury & devastation, that’s what a drop seizure looks like.
One moment Simon would be mid conversation, then as fast as that phantom punch… he would collapse & whatever was in the way on his descent, most always, his head would strike.
Simon loved sharing his story. He loved to share his truth of the experience of his life with epilepsy for one simple reason, he wanted to help other people.
Simon took the condition that fought him his whole life & made it a positive, knowing everyday “This could be the day it kills me.”
It was never unspoken that photography & documented, preserved testimony, his testimony would live on after that day would eventually arise.
We talked about it all the time. The last conversation we ever shared was focussed on that.
Two months after that conversation an Atonic seizure took Simon’s life. Immediately following a conversation with his Father we were able to fund raise a considerable donation to Epilepsy Action in Simon’s honour.
Simon would have liked that. Over the years together (16 in total) we had fundraised for epilepsy charities many, many times & that we had taken his illness & all the pain it had caused, the bullying, the trauma to do something good, that his positivity & will to live, to fight back against that invisible attacker may inspire anyone else with epilepsy not to give up meant the world to Simon.
As a photographer, as a person you can choose to make & keep promises. My promise has always been to never let the light of the lives, people & events fade.
You can choose to be a guardian of the pictures you have been so fortunate to collaborate in making.
My question to you is, why would you ever choose anything different?.
