In September of 2010, my grandmother Meriam (affectionately nicknamed “Gandy”) was diagnosed with Progressive Supranuclear Palsy.
In the medical world, Progressive Supranuclear Palsy (PSP) is a rare, degenerative brain disorder that affects movement, walking, balance, speech, swallowing, vision, mood, behavior, and thinking. In my world, PSP turned a once vibrant and tenacious woman into a shell of her former self.
These images were captured between the early stages of her diagnosis in December of 2012 until her death in September of 2014. I began the series when I was 15 years old as a means of preserving my grandmother’s memory for posterity, but the focus soon shifted towards providing comfort for my family.
Warning: images of death, viewer discretion is advised
Many believe that photographs are honest, while they simply depict what the photographer chooses to capture. The 1/60th of a second that the camera captures often fails to present the entire reality. I used that basic principle to my advantage. Those last few years with Gandy were difficult for my entire family, but my photos show the rare joyful moments in a time of sorrow. For my mother, they help her reminisce on the good times with Gandy, her mother, instead of dwelling on the pain of losing her.
When Gandy was asked "What word best describes your life?" She responded "Simplicity! I’ve had a simple but happy life and I’ve never wanted to live in the spotlight."In these images, I’ve tried to preserve the simple bliss that she loved through an unobtrusive, documentary style approach that preserves beautiful moments that happen even when she doesn’t live "in the spotlight."
The unobtrusive, silent nature of the Fujifilm X100S allowed me to capture these intimate moments with her - whether it was a fleeting smile or one of the often unseen moments of despair felt by those who go through these illnesses that steadily wear you away.
Without the low light capabilities and silent operation, I don’t believe I would have been able to capture the images that I did. I am eternally grateful to my X100S for being the perfect tool for me to capture these special moments that would have been lost without it.
Chandler Collins, an Alabama native, is a first-year student at the University of Virginia studying Public Policy & Film. In his (little) free time he serves as a photographer for the Cavalier Daily and as a portrait photographer.