Artwork #56

Roger McBee

Anne Kay (Primary Lateral Sclerosis)

Photography, 2018

I was honored to be asked to be a model for the Texas Bold Beauty Project. I am a strong proponent of letting people see beyond what might be considered a defining, possibly negative, trait. I saw this transformation, as professional photographers now capture the spirit and personality of both children and pets waiting to be adopted.


As for my disability, in 2005, I began a journey to discover the cause of my symptoms. It was determined I had Primary Lateral Sclerosis, a very rare neuromuscular disease. For the past 6 years, I use a power chair, adapted vehicle, and my semi-service dog, Oz. I say semi, because as a Lab, he never quite got over his desire to retrieve deer. 


When asked about the disease and impact on my life, I am upbeat. I have been blessed with a good life and a penchant for laughing during some trying situations. There are challenges in this not-so-accessible world, but thanks to the kindness of strangers and the ability to see humor in just about everything, I manage quite well. 


The term “wheelchair bound” doesn’t mean “stuck.” Quite the opposite! My chair and I are bound for more adventures and good times ahead.


I told my photographer that when I dream about myself, I am always walking, but wondering where my wheelchair is and when I will need it.  I also confided that the scenes, lore, magic, and mystery of the West and Southwest are a major part of my story.