“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…” promotes advocacy through imagery. This unconventional documentary exposes the impact a rare and incurable form of epilepsy, Lennox-Gastaut Syndrome, has on a mother and son's experience of lifelong care. At 28, my nephew David experiences daily seizures, has minimal communication, scoliosis, severe autism, and requires 24-hour care. After years of pursuing conventional approaches to stop his seizures, my sister Lori turned to nonconventional healers, working in energetic and mystical realms. Her love for David and finding meaning through their circumstances fuels her dedication to his care and her own personal and spiritual growth.

Because of David’s minimal communication, we don’t know his internal experience. Since he was a toddler, I’ve wondered what he sees, thinks, and feels. Combined with Lori’s handwritten narrative, I employ multiple artistic interpretations to convey what is “real” and what is outside our realm of understanding. Colors symbolize elements of spirituality, courage, love, and dedication as well as reference the possibility that David experiences synesthesia, a condition in which one sense is experienced through another, such as seeing color when hearing a sound.

one, one thousand… refers to Lori counting how long each seizure lasts and is a different kind of love story. 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.” 

Captions and essays written by Lori Sandler

one, one thousand... presentation recording, November 1, 2022 

My Silent Buddha, Wisdom from My Son Talk, 2013

A portion of photographs sold goes to the Lennox-Gastaut Syndrome Foundation. For more information about Lennox-Gastaut Syndrome or to make a donation, please visit  LGS Foundation.

one, one thousand...

2020 - ongoing 

copyright © all rights reserved
debe arlook 2022 terms of service
Using Format