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, albeit one of countless narratives untold by family caregivers. It is an intimate portrayal of a mother’s devoted care for her son and a testament to the love between two sisters.
This unconventional documentary exposes the impact a rare and incurable form of epilepsy, Lennox-Gastaut Syndrome, has on Lori and David. At 29 years old, my nephew endures daily seizures, has scoliosis and severe autism, and requires 24-hour care. After years of pursuing conventional approaches to stop his seizures, Lori turned to 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 personal and spiritual growth.
Because of David’s minimal communication ability, we don't know what he sees, thinks, and feels. In addition to Lori’s handwritten narrative, multiple artistic interpretations convey their lives, known and unknown physical, emotional, mental, and spiritual experiences. The title, one, one thousand…, references Lori’s description of counting the length of a seizure.
When I asked David’s permission to make this project, I did not know if he would respond. If he did, would I understand him? He leaned toward me with sustained eye contact in a rare and astonishing gesture. I got my “yes.”
Epilepsy and depression can strike anyone, with the former at any age. We all need help, care, and support at one time or another, making disability an equalizer. one, one thousand... lets those with disabilities, family caregivers, and family members know they are not alone. Lori’s courage helps shine a light on the need to nurture family caregivers' mental well-being and physical health. Our story is an alchemy of life that promotes awareness and compassion for the “other” to help alleviate the stigmas attached to mental and physical disabilities.
2020 - ongoing
Captions and essays written by Lori Sandler
one, one thousand... Discussion with Debe and Lori, November 1, 2022
The Candid Frame Podcast Interview with Debe and Lori by Ibarionex Perello, 2023
My Silent Buddha, Wisdom from My Son Lori Speaks about her relationship with David, 2013
A portion of sales go to the Lennox-Gastaut Syndrome Foundation. For more information about Lennox-Gastaut Syndrome or to donate, please visit the LGS Foundation.