NEWS | FEATURES | PREVIEWS | EVENTS
By Ilene Dube, JerseyArts.com
originally published: 01/06/2023
Portrait of Juan M. Sanchez by Timothy Kelly, artwork by Juan M. Sanchez
business It’s not a word you usually hear, and yet once you learn what the word is, you’ll find yourself thinking about and saying it.
Coined by the late Juan M. Sanchez (1984-2013) to describe his approach to life, busual means, simply, “better than usual.”
Timothy Kelly, She Feels What She Sees, 2017. Acrylic on bristol board, 5×7”
“Juan had the heart of an artist,” says his widow Katie Morgan. “He saw beauty in everything.” In his honor Morgan has organized Duality: A Study of Complexity and Becoming, to run at the Art Alliance of Monmouth County in Red Bank Jan. 7 through 31.
Sales and donations will be directed to the Boomer Esiason Foundation to fight cystic fibrosis by raising awareness of and improving the quality of life for those affected by the disease. The nonprofit is named for former NFL quarterback Norman “Boomer” Esiason whose son, Gunnar, is living with cystic fibrosis.
“I have long wondered what to do with Juan’s art, some unfinished,” says Morgan, who teaches yoga to private clients and facilitates a bereavement group in Red Bank. She is pursuing a master’s degree in clinical mental health through William & Mary College. While he didn’t have an extensive portfolio of finished pieces, Sanchez’s work will remain with his family as cherished mementos; digital prints will be made available. “This gift did not die with him.
Advertise with New Jersey Stage for $50-$100 per month, click here for info
“So, in order to truly live like our Juan,” Morgan continues, “we share his generous spirit with a larger community. While his personal art won’t be for sale, some of it will be displayed, along with the work of other artists who have heard his story and been inspired to donate their own works of art.”
Ceramic artwork by Joseph Lipardi
The work chosen embodies the idea of duality, continues Morgan. “It, in some way, plays, however subtly, with a story of two…with the space between feelings, identities, objects… all through photography, ceramics, original digital art, traditional paintings and even wood carvings. All of these sacred works are a reminder of the ways in which we can honor and savor our ever-emerging and shifting humanity.” There are 11 artists in the exhibition.
Each January, the Art Alliance of Monmouth County dedicates its gallery space to a charitable cause, and the board approved Morgan’s request to benefit the cystic fibrosis community. “I spent the year reaching out knew to artists, some of whom Juan or knew of him. Some artists are offering a percentage of the sales, while others are donating the full amount of the sale, minus the 20% commission taken by the gallery to cover operating expenses,” says Morgan.
“Cystic fibrosis impacts just about every single day of my life,” Gunnar Esiason, 30, told Future of Personal Health, an online health column. Gunnar directs the Boomer Esiason Foundation. “The condition primarily impacts my lungs and digestive tract by clogging organs with thick, sticky mucus. It is terminal, and there is no cure. The presence of such mucus in the lungs and airways allows for chronic respiratory infection. We always say that CF isn’t what’s trying to kill us, it’s the bacteria that’s doing it. For years, we’ve been treating the symptoms of CF — the cough, chest tightness, infection — with inhaled medications, steroids and antibiotics. On the digestive side of things,” Esiason continues, “we use pancreatic enzymes and supplements to help us gain weight. A lot of people with CF, myself included, have a hard time putting weight on. Not only do we have a hard time absorbing calories, we also expend a lot of energy fighting off chronic infection.”
He is on a feeding tube with a goal of 5,000 calories each day. The treatments, medications and therapies take up much of his day: about two hours using a nebulizer, an hour on an airway clearance vest, and an overnight g-tube feed, in addition to taking 30 pills a day.
The trajectory of Sanchez’s treatment and regimen followed a similar course.
Since his death at the age of 28 in 2013, there have been pharmaceutical advancements, says Morgan, including gene therapy to halt the progress. “It’s not a cure, but can help to avoid a lung transplant, which is a risky procedure. It’s an expensive disease for a child to have, and the Boomer Esiason Foundation can help to pay for a lung transplant or even for college, which can be out of reach for families who have to pay for expensive medications. New medications are also exorbitant.” Health insurance only covers a part of the expense.
Artwork by Juan M Sanchez
Morgan and Sanchez had been together for 12 years. She was 14 when she met him in a youth group at St. Peter’s in Point Pleasant Beach. “He had a whole life’s worth of adult experiences. Being with someone with a terminal illness, who is in the hospital several times a year requiring treatments, we often felt like we were 70 or 80 years, but we were happy and those were full years.”
The couple married in 2012, seven months before Sanchez died. “Looking back, my logical brain understands but at the moment I wasn’t willing to see. Our lives were filled with hospital appointments but I was blissfully unaware he was getting worse, and looking forward to the life we could have together.”
Born in Medellin, Colombia, Sanchez presented with symptoms that could have been pneumonia, Morgan recounts. Cystic fibrosis was not yet well understood, and the gene testing now available did not yet exist. “People with the disease carry a large percentage of salt and are called ‘salty warriors.’”
At age 5, Sanchez was diagnosed with needing medical assistance, and so the family, including two sisters, came to Children’s Hospital of Philadelphia where, at age 6, Sanchez was diagnosed with the disease that would forever alter his life. The family moved to the US so that Sanchez could get continuing care from Monmouth Medical Center. He was able to go to school, albeit with extended absences for hospitalizations. A daily medical regimen allowed him to lead a relatively normal life.
“Unless you knew what was going on it was an invisible disease,” says Morgan. ”In the last few years of his life he relied on oxygen. It impacts the social quality of life.” His employers at Surf Taco, where Sanchez worked the counter, were understanding in granting time off.
Advertise with New Jersey Stage for $50-$100 per month, click here for info
“Juan was an old soul, who carried a heavy burden and was aware of the sacrifices his family made – that’s a lot for a child to carry,” says Morgan. “He had a lot of time for introspection so found himself doodling, sketching, and eventually making graphics on his phone, creating and recognizing beauty and documenting it. He was not formally trained, but took some classes at Ocean County College (where he earned an associate degree). He found he had this ability to see beauty and had the urge to document it. Juan was concerned about others who were sick and wanting to make others feel seen and special, so he volunteered at Camp Jinka art therapy program at Monmouth Medical Center, with children who had family members dealing with brain tumors.”
Portrait of Juan M. Sanchez by Timothy Kelly
Timothy Kelly, a painter with work in the exhibition and who ran the Camp Jinka program, recalls his friend Sanchez. “You can tell immediately when you met him that he was different. Juan was truly present. He was aware of his fate and lived every second of life as if it were his last. There was a light in his eyes… People were naturally drawn to him. The kids at Middletown Arts Center (where Camp Jinka had been based) were attracted to him like a magnet. Kids see pure goodness and Juan had pure goodness emanating out of his being. We should all try to live like Juan.”
Morgan had been an elementary school teacher but left the public school system in 2019 to pursue her yoga business. She had had a brick-and-mortar studio until COVID “propelled forward the evolution of the practice. I found yoga as a way to find peace in life after losing my husband, so I knew it would be meaningful to others.” She went on to train as a trauma-informed yoga instructor, who has led to working with private clients who have experienced trauma, and has branded her business “Manifesting Busual.”
“It’s not therapy, but a complement,” Morgan says, and that is why she is pursuing a master’s degree in clinical mental health. “Juan’s death has paved a path I wouldn’t have known I’d be on but found very fulfilling.”
The Art Alliance’s gallery hours are Tuesday through Saturday, noon to 4 pm Opening reception Jan. 7 from 6-8 pm No admission but donations are welcome. 33 Monmouth Street, Red Bank, NJ.
About the author: Driven by her love of the arts, and how it can make us better human beings, Ilene Dube has written for JerseyArts, Hyperallergic, WHYY Philadelphia, Sculpture Magazine, Princeton Magazine, US 1, Huffington Post, the Princeton Packet, and many others. She has produced short documentaries on the arts of central New Jersey, as well as segments for State of the Arts, and has curated exhibitions at the Trenton City Museum at Ellarslie and Morven Museum in Princeton, among others. Her own artwork has garnered awards in regional exhibitions and her short stories have appeared in dozens of literary journals. A life-long practitioner of plant-based eating, she can be found stocking up on fresh veggies at the West Windsor Farmers Market.
Content provided by Discover Jersey Arts, a project of the ArtPride New Jersey Foundation and New Jersey State Council on the Arts.
