one, one thousand …
“I suppose you have received many letters from desperate mothers. Here is mine.” My sister wrote these words to a neurologist in 1997 when my nephew was two years old.
one, one thousand… is a different kind of love story. It is an unconventional documentary exposing the impact a rare and incurable form of epilepsy, Lennox-Gastaut Syndrome, has on a mother and son’s experience of life-long care. At 28, David is non- verbal, experiences daily seizures, has scoliosis, severe autism, and requires 24-hour care. After years of pursuing conventional approaches to stop my nephew’s seizures, Lori turned to nonconventional healers, working in energetic and mystical realms. Her love for David and seeing beyond their circumstances fuels her dedication to his care and her own personal growth. These photographs witness Lori’s everyday challenges as a single parent and devoted caregiver while giving David a voice.
With David’s minimal communication, I’ve always wondered what he sees, thinks and feels. His personality is sweet and he seems to have a good sense of humor but, we don’t know his internal experience. Multiple artistic interpretations are used to convey David’s unknown perception of the world and Lori’s spiritual practice. Herein lies the intersection between what is “real” and what is outside our realm of understanding. Color references the possibility he experiences synesthesia, a condition in which one sense is experienced through another, such as seeing color when hearing a sound. Photographs include Lori’s handwritten narrative.
The title “one, one thousand…” refers to Lori counting how long each seizure lasts. When I asked David’s permission to make this project, I did not know if he would respond. In a rare and astonishing gesture, he leaned toward me with sustained eye contact. I got my “yes.”
