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 the visually impaired. I know their struggles, their feelings of depression, frustration, incompetence and alienation. There is no cure. Daily vitamins 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 my 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? Uncertainty begets anxiousness. To what degree my life will be affected is undefined. 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. How much of life was missed by the gaps in vision.
Did he discriminately embellish the empty spaces?
Working on and completing “Flawed Pedigree” will be a path to clarity, knowledge and hopefully acceptance.