Today Wednesday the 28th of May is World MS Day. To me it is a day to celebrate the fact that I refuse to let MS dictate how I live my life. It is also a day to bring about awareness for the millions of people around the world living with MS.
A number of months ago I was asked to take part in a project call “Seeing MS”. It was a project to bring the hidden symptoms of MS to the world and make them visible through photos. 9 people living with MS were teamed with 9 photographers and symptoms such as Balance, Dizziness, Pain, Spasticity, Fatigue, Brain Fog, Numbness, Hot and Cold and Blurred Vision.
My symptom was Balance…but how do you photograph balance? I was teamed up with a photographer by the name of Andreas Smetana. Andreas is based in Sydney and with me in Melbourne we weren’t actually able to meet in person. We spoke by phone for about an hour and then had a Skype call. But I found it very difficult to describe exactly what goes through my head when I loose my balance. It was a tough ask for him to come up with an idea for a picture but a couple of months after speaking with him I was asked to attend a factory in Prahran for an unveiling of “My” photo.
I was videotaped as I walked around the corner to view the photo. It was 8 metres long and I was stunned, actually almost speechless, as he had nailed it! Through an hour conversation, Andreas was able to depict exactly what goes on in my head and what I “see” when I loose my balance. I had no idea how he was able to do this but was amazing!