Debe Arlook
“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 between a mother and son, and two sisters. one, one thousand… is an unconventional documentary exposing the hidden impact a rare brain disorder has on a family’s experience of life-long care. one, one thousand… is Lori counting how long David’s seizures last.
David is diagnosed with Lennox-Gastaut Syndrome (an incurable seizure disorder) and severe autism. At 28, he is non-verbal, has scoliosis, and requires full-time care. After years of pursuing conventional approaches to stop his seizures, Lori, a single parent, turned to nonconventional healers, working in energetic and mystical realms. My sister’s devotion to David, and seeing beyond their circumstances, fuels her personal and spiritual growth, inspiring her to live a life of awareness, acceptance, and gratitude.
Statistics show it’s likely David experiences synesthesia, a condition in which one sense is experienced through another, such as seeing color when hearing a sound. Because of his minimal communication, we will never know. I use color and its dissonant placement as an artistic interpretation of David’s inner world of mixed sensory perception and the jarring seizures he endures. The rudimentary surreal collage depicts his impeded brain function and the unfathomable lives they both lead.
When I asked David’s permission to make this project, I did not know if he would respond. With rare and astonishing sustained eye contact, I got my yes. David would allow me to enter his vulnerable world.