My youngest daughter, Mathilde, had a seizure last Sunday.
I was taking pictures of her for my new series when she suddenly collapsed and started convulsing on the floor. When she regained consciousness, she had no recollection of what had happened. She was also slightly dizzy and had a terrible headache and she immediately threw up. She was taken by ambulance to the hospital and after hours of testing, the doctors concluded that she had had an “unexplained seizure”.
She will be followed by a pediatric neurologist and apparently, the probability of a repeat episode is about 50% – if it happens, it will likely be in the next 6 months. Those are odds she is not aware of, yet since last Sunday, my normally happy and determined girl is very afraid. She’s afraid in so many little weird ways, I can’t even begin to recount them.
This is a close up of the last picture I took of Mathilde before her seizure. I don’t know if this is when it started or maybe a minute before. I don’t remember if this is when she told me “Brrr, I’m cold” or if it was just after. I don’t know if she’s about to pass out or about to blink.
Why am I posting this? – I ask myself. Is it transparency, voyeurism or exhibitionism? Call it what you want – I am just a mother, still trying to process last week. Every day I stare at this picture. Perhaps I hope there is something to decode here, something that would explain things, something that would help me make sense of it all. I wish for answers I know I will not get.
I have witnessed in the past year a few very difficult events. Most of them were related to disease and death. On very rare occasions I have taken a picture. But many times I have created photos about these traumas after the fact. Maybe the best way I know how to deal with horror is to photograph it – real time or not, real life or not. Mathilde and Amy laugh about it often; I am “officially a creepy mom”.
A friend wrote me after hearing the subject of my newest work “Traumatic experiences make for a good artist, hey?”. I don’t know. People have already philosophised about this in much better ways than I can. Many artists indeed process their personal pain through their work, or at least use it. I am no exception. But I do think I’d happily create something meaningful while not suffering! The thing is, I very much believe that Art is about sharing. That doesn’t mean that I want to share accurately – I don’t need you to exactly know what I saw or what I went through. What I hope is that someone sees my work and can project their own experiences and thoughts onto it. When photography hands you over more keys and less doors, it truly becomes a universal language.
But back to my little munchkin. It’s clear she has been shocked by what happened, but slowly but surely, she is fighting back. I did not use artificial lighting when photographing her before she seized – she didn’t have a photosensitive reaction, but still, because of the coincidence of timing, she was apprehensive about being photographed again. Something she brought up on her own several times last week because she is one of the main subjects of my next body of work. And, because the topic of the series is very close to her heart, she’s extremely committed to it. Yesterday she announced at lunch time she was ready to pose again. I became slightly anxious myself. My current work talks of emotional states relating to illness and medicalisation – and though it has nothing to do with what happened to her, it was hard for me (and I assume her as well) not to draw parallels – and so for a moment I really wished I was taking pictures of happy fairies instead! But she wanted for us to work again and she was determined despite her fear. As her mom, I’m not the most impartial judge of character, but for sure, yesterday I witnessed true courage.
This picture too is straight out of camera. We were done with the work and she leaned back. It’s not posed. It’s just her. I was about to tell you what she said then because it was clear in that moment she had understood something important about life – and with it she had also lost a bit of her innocence.