Hannah Schneider

The Shattering of Denial

Cinemagraphs and still images that showcase the journey and impact of denial breaking through.

As an individual with the rare genetic disorder Bardet-Biedl Syndrome, I struggle with the increasing possibility of becoming visually impaired, and eventually, blind. The odds are not in my favor- over 90% of individuals with BBS experience vision loss, and yet I remain in a state of denial about the mutated genes inside me that will likely cause retinal degeneration. My future remains unknown to doctors, so why worry about something that has the tiniest chance of not happening? I have 20/20 vision right now, so what is there to worry about? Am I setting up myself for failure in the future when what is surely inevitable happens and I lose my vision, along with my hopes and dreams, and everything I worked towards through my education and commitment to a future in the creative industry? This denial that I will never lose everything and be left with the vast darkness allows me to keep getting out of bed every day, to keep living, and to keep making plans for my future. 

The series of five images I have created speaks about my fear of what happens when vision loss shatters my state of denial and the world I have planted roots in. A glass orb is used to represent the sighted life that I have now, one that is threatened by the cracks that appear as the sphere falls, or the genetic disorder permanently planted in my body that causes retinal degeneration and vision loss. The sphere has a rose tint, representing the phrase “seeing the world through rose-tinted glasses”, as I do due to my state of denial. At the beginning of the series, the orb is floating steadily in the picturesque sky, unthreatened by the future. This image, like the first three images in the series, is a cinemagraph, with the inside of the sphere containing imagery of me that reflects my mental state at that sequential point in the series. After three images, the orb completes its journey in the air and crashes to the ground. Its outer shell has cracked into pieces, and what is left behind is revealed to be an eyeball that a hand is reaching down to grab. Upon the arrival of the last image in the series, the background has become almost completely blurred, degraded, and darkened, with the vision loss process reaching its end. The background imagery is almost undecipherable, and what can be still seen is me reaching out to the viewer with the eyeball and its remaining shell placed on my hand. I have no eyes, as my remaining eye is in my hand and my vision is now gone after the orb crashed to the ground.

I hope that after viewing this series, viewers get a better understanding of how challenging it can be to come to terms with a serious medical diagnosis that causes lifelong conditions. One may fall anywhere on the spectrum of the stages of grief, from denial to anger, bargaining, depression, and acceptance. I hope that one day in the future, I will find myself fully accepting my genetic disorder and the medical challenges and loss it may bring, but for now, I stay planted in the comforting state of denial.