28″ x 36″ • Mixed Media
I made this piece to illustrate the story of Juan Reyes, a retired military doctor who was diagnosed with ALS. In his story Juan talks about how the symptoms first started in his hands, so the large central figure has its hands rendered as silhouettes that are captured in the boxes that surround it. The boxes show the color of a sunset to represent the memories he relived in his story, and the underside of the boxes (revealed by mirrors placed beneath them), capture hidden changing images that represent what is happening beneath the surface. I wanted to capture the sorrow, the hope, and the strength of Juan in this image. I incorporated the colorful feather boa mentioned in the story, and I even put in a hidden fart joke that I think Juan would approve of (it’s revealed in one of the mirrors). Juan emerges as a superhero out of the cavern of the central figure to represent the power of his advocacy and a focus on who he is.
by Katrina Byrd
One day there was the word.
And the word was death.
“You have Amyotrophic Lateral Sclerosis (ALS).” The words dripped from the doctor’s lips like broken glass landing in a jagged pile on MSgt (ret)USAF Juan Reyes’ weakening shoulders. Though Juan is dying, death is the farthest thing from his mind. An Air Force Paramedic by trade, he provided care for people during the worst moments of their lives. After his ALS diagnosis, he continued caring for others in despair by transforming himself into a superhero.
It’s a bird! It’s a plane! It’s superman!
Smoother than a James Brown spin. Powerful enough to rock the mic, work the pen and command respect no matter what room he’s in. Tough as nails, gentle as a pony. He ain’t just Juan, honey. He’s The Juan And Only!
“Medic to Comedic,” The Juan And Only says in an email brain brainstorming ideas for this event piece.Six years after diagnosis, he’s in a wheelchair, has a feeding tube and has limited use of his hands. “How losing the ability to stand led to me standing up.”
He entered the Air Force March of 1986. His career as a paramedic spanneed 21 years. Some of his assignments included Hellenicon Air Base Greece, RAF Upwood United Kingdom, and Andrews AFB Maryland The last 12 years of his career were spent as an Independent Duty Medical Technician.
October 14, 2015 at 10:30 a.m. the neurologist told Juan and his wife, Meg, he had ALS, a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord. 100% fatal. No cure. Life expectancy 2 to 5 years. ALS is a service connected disease. After the diagnosis, prognosis and explanation of treatment, Juan and Meg went to their car. It was a sunny, breezy day. Shadows of the leaves danced on the windshield as the sun broke through the canopy of trees lining the clinic parking lot. They cried. As a couple, they’d cried many times before. This time was different. They mourned what was to come. Husband, father of four, son and defender of his country, Juan had to choose whether to live or die. He chose to live. He chose to live outside himself.
“I want people to not be afraid to advocate for themselves,” he says. “It’s their right.” Juan didn’t turn away from the ALS Clock. He faced it as Juan Reyes and as his alter ego. The Juan And Only, a muscle bound, wheelchair user, rolls through social media platforms layin’ down the truth about ALS. “Roll a mile in my shoes,” he writes in an ALS Awareness post where he encourages readers to step into the world of living with ALS. “Place mittens on your hands,” he writes. “…Now have a drink, write a note, get dressed.” For this rollin’, truth takin’ superhero nothing is off limits. In his poignant and humorous posts, he talks about “rocket boosters(farts)” and being eye to “ass” level with literal “asses” and “asses” who refuse to recognize his humanity. My personal favorite, a t-shirt design with the slogan on the back that reads, “If you can read this, put me back in my wheelchair.”
His compassionate, advocacy work isn’t just on social media. The Juan And Only is a peer mentor with I AM ALS, a patient centric organization promoting advocacy, awareness and education. Juan serves on the Veterans Affairs team and he is co-chair of the Many Shades of ALs team. I met Juan in the fall of 2020, seven months after Dora, my partner of 23 years, died from ALS. After I told of caring for Dora during her ALS journey, I cried. Juan tried to comfort me, but he started crying too. Throughout our service at I AM ALS, Juan shared my love of feather boas. In meetings where I couldn’t hold it together, he adorned himself in a rainbow colored boa to remind me that there is joy and that he will always have my back.
“I would spend more time with my family,” Juan says as we discuss slowing the ALS clock. “We use to go camping …traveling.”
“I would want more time on the porch with morning tea,” I say.
“Why does ALS have to take everything? “ We dry our tears and realize ALS can’t take our spirit.
And then there was the word. And word was life. And together, in our own worlds, we live it to the fullest.