Shingle Springs resident Monica Joy has an invisible illness — invisible to people who see her smiling face; invisible to insurance companies; invisible because of its rarity to most of the medical community; invisible to research.
She has superior mesenteric artery syndrome (SMAS) and intestinal dysmotility. Only 500 people have been diagnosed with SMAS, a life-threatening condition, since its first description in 1861.
The onset of Monica’s invisible illness was five days into her freshman year at Ponderosa High School, two years ago.
A growth spurt during the summer with resultant thinness might have precipitated the collapse of the aorta lying over the top of her duodenum, compressing it and blocking food from entering her intestines. The syndrome causes extreme pain, nausea and vomiting and often leads to severe malnutrition.
Without being able to eat or keep food down, Monica’s health was in danger.
“She was tall, thin and had just started high school,” said Lili Joy, Monica’s mother. “The doctors thought she was stressed and anorexic.”
“They gave me anti-depressants and sent me to a psychiatrist,” said Monica, 16. When the psychiatrist saw no evidence to support anorexia, testing for other sources of Monica’s problems continued.
“This syndrome is very difficult to detect,” said Lili, “Only a specialized angiogram will show it and you have to suspect it in order to have the angiogram.”
Through doctors at the UCSF Children’s Hospital and the Nationwide Children’s Hospital in Ohio, SMAS was diagnosed.
Monica had a series of feeding systems, multiple surgeries and many hospitalizations.
She is now two months free of a feeding tube and she must have surgery every two months in order to have Botox injected into her pyloric valve to allow food to pass into her intestines. She takes special experimental medication compounded for her by Grandpa’s Pharmacy and may need a gastric pacemaker one day.
While most of us are encouraged to eat healthy, get plenty of rest and listen to our bodies, Monica Joy has to do this every day to survive.
To combat the nausea she suffers 24/7 she’s learned to nibble tiny meals all day long — “my purse is so full of snacks, I’m like a mom,” Monica said.
She also has to get uninterrupted sleep and to stop worrying.
It’s put restrictions on sleep-overs and parties, the stuff of normal teen years, but the disease has also increased bonds with old friends and helped her make new ones who accept her new normal.
“You find out who your real friends are, ” said Lili. ” Some people step forward to help; others take a step back.”
A basketball player with a strong academic focus, Monica had to rethink her whole life.
“For the first year, I had this bright yellow feeding tube protruding from my nose, constant nausea, no energy and was always vomiting, so I couldn’t go to school or very far from home. I was isolated for about six months,” said Monica.
Most of her friends melted away, so she turned to music.
She had played piano since fourth grade and had taken singing lessons, so she wiled away hours at home and in the hospital with a keyboard. Piano teacher David Taylor came to the house to continue her lessons and encouraged her to write her own music.
“I wrote lyrics and heard the melody in my head, so I put them together and wrote a song I called ‘Awkward,’” said Monica. ” I wasn’t sure it was any good, but David told me I should put it on Facebook and I did.”
Favorable comments on the song and Monica’s voice encouraged more music making even as the feeding tube failed and she went in for surgery to reroute the connection between her stomach and her intestines around the artery.
The surgery helped, but a new problem was revealed: Monica’s intestines and stomach didn’t work together to move food through her body. Food remained stuck in her stomach or in the small intestine, causing pain and vomiting.
“After the surgery, they told me that I was going to get better and I needed to push myself because I wasn’t in a dangerous condition anymore,” said Monica. “So I was excited. On the first day home, I exercised, ate a big breakfast, had friends over, got a cat and had Chinese food. A few hours later I was writhing on the floor in terrible pain and had to be taken to the hospital in an ambulance with a gall bladder attack.”
Monica said sudden changes is what her life has become.
“I’ve had to learn to live in the moment because everything can change. It’s a balance between living it up and playing it cautious,” Monica said.
Her entire family, father, Robert; mother, Lily; and 14-year-old sister, Lauren have had to make changes in their lives as well.
“Lauren, who was in sixth grade at the time, had to become independent,” said Lili. “Some great neighbors, the Silverbushes had her stay with them when we were in San Francisco with Monica.”
“I didn’t want to always miss school and basketball,” said Lauren, who took care of organizing her own transportation to practice.
She was often the first person aware of problems Monica was having and now plans to become pediatric nurse practioner.
“I didn’t know she would get so sick,” said Lauren, now in eighth grade.
“I didn’t know if she would ever get better,” said Lili.
Family vacations had to be curtailed after Monica suffered debilitating attacks, once having to be rushed to a hospital on an Indian reservation.
Robert and Lili learned to navigate the labyrinthian world of insurance and to do masses of medical research in order to find answers for their child.
“We’re both in the medical field, but as a parent, navigating the insurance and research data is daunting,”said Lili.
After the first year of Monica’s illness, Robert and Lili decided to get her music recorded. The Track Shack, a professional recording studio in Sacramento where Eddie Money and John Legend have recorded, offered to record her first CD at a reduced cost after checking out her YouTube and Facebook recordings, especially after they heard what she wanted to do with the proceeds from the sale of the CD.
“I admire artists like Bono and Will i. am who give back. I don’t know if my music is good or bad, but people like it,” said Monica, “I want to help people with my music.”
She talked to her family and a friend, Rachel, who she had met in the hospital and who had the same disease.
“We came up with the idea to help children with invisible diseases, like cystic fibrosis or SMAS, ones like mine that don’t show and we started a non-profit organization,” Monica said.
The Website, invisibleillness.org is under construction. People who purchase Monica’s CD “Only Children” on ITunes, cdbaby.com, Amazon or Spotify will be contributing to research and to support children with rare and severe diseases.
“Eventually we’d like to link songs to specific diseases so you can sponsor a disease when you purchase a song,” said Lili.
Monica, with her own disease currently managed, is able to plan for the first time in two and a half years.
She performs her original music and various covers locally at the Whole Foods Bier Garten at the Palladio in Folsom and has aspirations of performing at the Cozmic Café on Main Street in Placerville.
“I still can’t plan too far ahead, but I want to go to college and it’s my dream to go on tour with my music,” Monica said.
The songs on “Only Children” are about her experiences during her illness like the birth and death of relationships, missing home and her friendship with Rachel. Her voice is strong, confident and reminiscent of Norah Jones.
You can find Monica’s performance schedule, download songs, order CDs, see lyrics and listen to Monica Joy’s music on monicajoy.bandcamp.com or monicajoymusic@facebookcom.
Help her to help others.