I have Macular Degeneration. It is a part of my genetic make up. It is my lineage. My father, his sister and my twin brother had early onset Macular Degeneration, Stargardt’s Disease in their late teens and early 20’s. I have lived all of my life surrounded by severely visually impaired people. I know their struggles, their feelings of depression, frustration, incompetence and alienation. There is no cure. Daily vitamin and mineral pills retard deterioration of vision. At its worse state Macular Degeneration patients are given injections into their eyes (intravitreal) to impede the damage.
“Flawed Pedigree” conceptualizes feelings of vision loss, recognizing my lineage and questioning my future. In its worst form, central vision becomes a large blur limiting and encumbering everyday life. I question as vision deteriorates does the mind replace what the eyes do not see? Are visual distortions created by the mind trying to fill the gaps? To what degree will my life be affected? I sometimes wondered when I was growing up how my father actually viewed me. What did he see or not see looking into my face. Were there missing pieces that he filled in.
Working on and completing “Flawed Pedigree” will be a path to clarity, knowledge and hopefully acceptance.
All images and text © Linda Barsotti
By Linda Barsotti