“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, as well as 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, 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 own personal and spiritual growth.


Because of David’s minimal ability to communicate, we cannot truly know what he sees, thinks and feels. Multiple artistic interpretations, in addition to Lori’s handwritten narrative, are used to convey the known and unknown physical, emotional, mental and spiritual experiences of their lives. 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?  In a rare and astonishing gesture, he leaned toward me with sustained eye contact. 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 the mental well-being and physical health of family caregivers. Our story is an alchemy of life that nurtures awareness and compassion for the “other” with the intention to help alleviate the stigmas attached to mental and physical disabilities.

 





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 the 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 


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