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. This story of devotion, personal growth, and perseverance is written in my sister's hand. Multiple artistic interpretations convey realms of Lori’s spiritual practice and David’s unknown perception of the world. The work is an explorative dive into what is “real” and what is outside our imagination. The title references Lori counting the seconds until the end of a seizure.
“I suppose you have received many letters from desperate mothers. Here is mine.” My sister wrote these words to a neurologist when my nephew was two years old.
At 28, David is non-verbal, experiences daily seizures, has advanced 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 situation fuels her dedication to David's care, her spiritual practice, and personal growth. Often, she must work at being okay when things are not okay.
A single parent, Lori alone deals with stress when David refuses food and medication, rushes him to the hospital for an IV and carries his full weight when he collapses.
I began the project to be a voice for my nephew, a witness to my sister’s life, and to shed light on Lennox-Gastaut Syndrome. LGS is diagnosed in only 1-2% of individuals and is resistant to most seizure treatments. Except in rare cases, individuals with LGS experience seizures for the duration of their life, along with co-existing disorders such as autism, sleep disorders, and global neurological impairment. With an increased risk of dying as a result of a seizure, we hope to raise funds for its treatment and cure.
More than one in five American families provide in-home care for a loved one. Sacrifices put them at potential increased risk for adverse effects on their well-being in virtually every aspect of life, ranging from health and quality of life to relationships. In sharing this story we hope caregivers feel less alone in their struggles and show the medical community a deeply personal side of neurological care.
With David’s minimal communication, we will never know what his internal experience is. When I asked his 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.