I have been diagnosed with Darier Disease, also known as Keratosis Follicularis, since I was seven years old. I began to show symptoms of the disease when I was only four in the form of small hollow pits on the palms of my hands and bottoms of my feet. I have been consumed by this disease for the past sixteen years and will continue to be for the duration of my life. Darier Disease presents itself differently in every individual who has it. As for myself, the disease impacts my skin in the areas of my neck, stomach and chest as well as my forehead, arms and legs. It takes form in many different rashes across my body. There is not an inch of myself that is not affected. Darier Disease is a genetic condition, however no member of my family that is currently living presents the disease other than myself; leaving for me to only feel lonely and isolated due to this unexplainable incurable condition.
The mirror on the left is engraved with my skin cells. I decided to go to the core of myself where my condition begins. The reflective surface allows for the viewer to see themselves within the piece; however they are abstracted by my damaged cells. On the right side, the other mirror of the piece, is engraved with the scientific medical text that explains Darier Disease for dermatologists to understand the extremely rare condition. The text ends with a sentence that describes how incurable the disease is. As it reflects on the viewer they have a less obstructed view of themselves as they did within the first mirror. This allows for the piece to feel as it is giving the viewer more information the longer they try to discover what is occurring. It turns them into the examiner. The prolonged looking at one's self is something I have to do multiple times a day to ensure the care of my condition.
In the middle of the two mirrors is a digital photographic print. The print is a grid of sixteen individual images of my skin from varying areas of my body. The total of images is meant to show the number of years of where I have presented symptoms of Darier Disease at the time this piece was made in the fall of 2023. Throughout I display the levels of severity of the disease based on different sections of my skin that are more inflamed than others. The image in the middle that contains my eye is meant to confront the viewer with the degree uncomfortableness that I have confronting myself and managing this condition every day. The images are arranged in a grid to symbolize the hundreds of photographs taken by dermatologists at the numerous appoints that I have every year.
The piece is installed in a corner to form the formation of a bathroom vanity. Further symbolizing the sense of constantly looking and the longer one spends with the piece the further unease.
This piece was exhibited in Taking Shape from December 5 - December 19th 2023 in the Raizes Gallery at Lesley University in Cambridge MA.
