Alexandra Gardyne, from Midlothian, 32, says she remains ‘headstrong’ as her muscle-wasting condition – facioscapulohumeral muscular dystrophy (FSHD) – progresses. Now she is the subject of a one-off exhibition at the national Scottish Portrait Gallery by Scottish artist Damian Callan.
Alexandra has a passion for art and is putting a creative spin on her journey with FSHD and the challenges she faces – which saw her reach out to work with Damian Callan and other Scottish artists.
I was diagnosed aged 22 even though I had symptoms from toddler-hood. My walking is now significantly declining as is my overall physical strength. This causes many issues like my eyelids not closing at night; sucking through a straw is difficult, and lifting my arms above my shoulders and head is impossible to do by myself. I will remain headstrong regardless of this and I find art a beautiful way to do this.
Artist Damian is a figurative artist who said he found an extraordinary dignity and determination in the way Alexandra deals with the challenges of her condition.
My subject is the moving figure and for many years I have worked on depicting the characteristic movements of sports figures and dancers, as well as those of my wife and children. Alexandra contacted me to ask if I would consider working with her as a subject and model with a view to capturing the particular ways in which she moves and thus possibly offering an insight into the experience of living with muscular dystrophy. Through a process of drawing her in the studio and photographing her walking in the Botanic Gardens, I began with a series of charcoal and pastel studies and developed these into paintings; trying to abstract her movements into their essential elements. I have attempted to produce positive and uplifting images that recognise an extraordinary dignity and determination in the way Alexandra deals with the challenges of this condition.
Now living in Edinburgh, Damian’s work has been displayed at the BP Portrait Award 1997, Jerwood Drawing 1998, RSA Open, SSA Annual Exhibition – John Munro Award and VAS Annual Exhibition along with Solo exhibitions at the Scottish Gallery 2005, 2004, 2007, 2009, 2011 and Royal Overseas League.
The exhibition will also feature artwork from another Scottish artist, Ritchie Collins.
When I met Alexandra and she told me about the Muscular Dystrophy UK charity, I thought it was a great idea to host an evening of art in the magical setting of the National Portrait Gallery. It’s an honour to be able to draw awareness and raise funds for such a great charity through my work.
The evening, Saturday 9 November, includes a tour of the Modern Portrait exhibition room with a curator of the Gallery, followed by a one-off auction of up to 11 original pieces and specially selected signed print work. Tickets cost £28 and the event runs from 7.30pm – 11.30pm.