S.W.A.N vs.SWAN

I really should have titled this blog the great delay as apparently 2 - 3 years between entries is as fast a pace as I can manage, same old reasons, not at all convinced anything to see or say here so the urge to pass by rather than sit down and post is an overwhelming one but as mentioned in my last post which was a mere 6 months ago which by my standards is approaching prolific there is a project underway that began as a series of photographs of M but has somehow morphed into something more collaborative. The background is this: Paola is a friend, a very talented friend, she first took a photo of M for her series Growing Up, in it M’s face is obscured by a lamp she is holding, a large disc of light that almost covers her head, to say that Paola has gift for visual metaphor is an understatement and then some. I don't recall now how much time went past between that image and the beginning of Swan, for a while we thought it would be good to have Paola make a series at M’s school as I felt that if she could capture M’s unique difficulty in such a beautiful way then that world of kids with special needs is one that she could shed light on in an utterly empathetic way but for various reasons to do with privacy regulations etc it just became too difficult. Somewhere along the line the focus came back to M and I shared with Paola that we were scheduled to have an overnight EEG exam to observe M’s brain patterns while sleeping followed by an MRI scan of her brain, Paola came along and photographed the experience. In the images she made she brought beauty and understanding into a strange world of medical technology and research as well it must be said as making me laugh when I might otherwise have cried from the stress of tests that have no answers. When I saw those images I realized that while I may never find the words that can help me make sense of all of the wonders and challenges of having a child like M. Paola through her lens captures most of it without a single word. The project is called SWAN the acronym meaning syndrome without a name taken from this website http://www.undiagnosed.org.uk. More on lack of diagnosis in another post