“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 love story and 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. The project began as a way to support my sister's everyday challenges as a single parent and devoted caregiver while being her witness. It is meant to give voice to my nephew as I question what my nephew “sees.”
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. Seeing beyond their circumstances fuels her dedication to David's care and her own personal growth.
Multiple artistic interpretations convey realms of 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 likelihood he experiences synesthesia, a condition in which one sense is experienced through another, such as seeing color when hearing a sound. Because David’s communication is minimal, we will never know what his internal experience is. The title, one, one thousand…, references Lori counting how long the seizures last. Image captions are Lori’s handwritten narrative.
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.”