Welcome to no. 47 in our series Poignant Pics where our editor, Diana Nicholette Jeon, writes about Debe Arlook’s “Spike Waves”

In Lieu of Voice - Speaking for Those Who Can’t Speak for Themselves

I was perusing the stories category on the PH Museum site when I ran into Debe Arlook's Silent Buddha. Spike Waves was the cover image for the series; I was immediately captivated by it. It was unexpected. I wondered about the connection between the person and plant and whether it represented strictly formal similarities or hidden meaning; I speculated over the color vs. black and white. I was curious about Arlook's unorthodox use of pink background. 

The human presence, scrunched, face hidden, somewhat amorphous, seemed as though they were frightened or purposely hiding. The stark negative space of rich black surrounding the figure heightened that sense. The careful placement of the linens spoke of more than formal arrangement, perhaps of tenderness offered to the person by someone such as a caregiver. 

The sumptuous but subtly desaturated blue-green of the leaves was an interesting juxtaposition to the stark black and white. It seemed to have a life of its own despite the formal similarities that tie the two halves of the diptych together. 

Then, that pink. An unusual choice, one not generally associated with the background of photographic works. Is it innocence? Hope? 

The image kept me looking for quite a while. To be truthful with you, I didn't read the text accompanying the series or go deeper into the series until a much later date, so intrigued by this particular image I was. Instead, I contacted Debe immediately to ask about writing about this image. In speaking with her then, I learned the work was about her nephew, who suffers from a rare disorder of which most of us will not have heard. I could have known this via her artist’s statement, but auwe*, I hadn't read it. For me, this only re-emphasizes having non-visual accompaniments to art and the importance of stopping to read them when provided (I add the latter sheepishly. I’m a huge believer in the power of written statements to enhance the experience of the viewer.)

Because I don’t have any experience of this disease, I’m publishing the artist statement Debe has for the entire series here:

“I suppose you have received many letters from desperate mothers. Here is mine.”

My sister, Lori, wrote these words to a neurologist when my nephew, David, was three years old. Love, compassion and suffering - everyday experiences of the human condition - profoundly impact my sister and her adult son, who is diagnosed with a rare, incurable and debilitating epilepsy disorder, scoliosis and autism. Silent Buddha bears witness to these themes and my sister’s practice of accepting the unacceptable. This project exposes the hidden impact a rare disease has on families and the repercussions it has on a mother and son. Lori, a solo parent, commits to her son’s constant care, drawing strength from spiritual beliefs and practices reflected in her writings. The effects of Lennox-Gastaut Syndrome leave David with no formal method of communication. What he sees, feels and understands remains a mystery. Intuitives say David is an energetic healer working in higher realms, however, where he goes when he isn’t “present” will never be fully understood. This artistic interpretation is an introspective collaboration of their daily lives illustrating the effects of Lennox-Gastaut Syndrome. The work mixes documentation and artistic interpretation, drawn from the mystery of David’s silent mind and the reality of his condition.

Lori and I have the honor of working with the the Lennox-Gastaut Syndrome Foundation to support families and caregivers faced with long-term care hardships, raise awareness and funds to help find a cure.

Visiting the website of the LGS Foundation, I learned some facts about the syndrome:

• Lennox-Gastaut syndrome (LGS) is a developmental brain disorder that frequently evolves from early-life-onset epilepsy. The abnormal brain waves seen in LGS are a sign that typical brain development has been disrupted and learning and developing in a typical way will be difficult. Epilepsy is a brain disorder characterized by seizures. In LGS, seizures usually begin in the preschool years, and LGS usually emerges between 3-5 years of age. LGS can, however, start later in childhood.   

• Approximately 13,400 children under the age of 18 and 34,300 adults have LGS.

Asked about Spike Waves itself, Debe told me that although David is non-verbal, he still communicates via various mannerisms. “That particular day, David refused his medicine by turning away from Lori." (It seems that's quite a conundrum for Lori, because David requires the medication.) Debe also stated, "Six months after making the photo of David, I saw the fern. It reminded me of brain activity. But wasn't until I edited this image, accenting the shape of his headless body, that I saw the matching of organic shapes of the fern, his scoliotic curve and protruding ribs."

I found this beautiful diptych to be sad, tender, and curious, and that caused me to write to Debe. But, in the end, I learned about the raison d'être for her series, about the syndrome itself, and about Debe's kind heart and generous spirit. Bravo, Debe!

AfterNotes:

• November 1 is LGS Awareness Day. For more information, see https://www.lgsfoundation.org/lgs-awareness-day-event/ (click on Santa Monica event for the one Debe is involved with.) The complete Silent Buddha series can be seen here: https://www.debearlookphotography.com/silent-buddha. As part of Debe’s fundraising efforts, the images in the series are available to collect; a percentage goes directly to the LGS foundati. Contact Arlook via her website for more information or to acquire. You can also make a donation directly to the foundation here: https://www.lgsfoundation.org/donate/

• *auwe- (Prounounced “ow-way”) A Hawaiian word commonly used in everyday speech here in the islands, used as an exclamation of wonder, of surprise, of fear, of pity or affection, as in “Oh! Woe on that!”

Artist Bio

Debe Arlook is a Los Angeles based artist whose work draws from a committed pursuit of personal growth and existential query. Arlook is a Photolucida Critical Mass Finalist 2021, 2020 and PhotoLA Finalist 2020. She exhibits in national venues such as Center for Photographic Art (Carmel, California), Griffin Museum of Photography (Winchester, Massachusetts), Rick Wester Fine Art (New York City), and international venues such as Lishui Art Museum (Lishui, China) and FotoNostrum (Barcelona, Spain). She’s an advisor and curator for Pasadena Photography Arts and contributing editor for PhotoBook Journal.

See more of her work at http://www.debearlook.com

Author Bio

Diana Nicholette Jeon is an award-winning artist based in Honolulu, HI, who works primarily with lens-based media. Her work has been seen both internationally and nationally in solo and group exhibitions. Jeon holds an MFA from UMBC.