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February 23, 1984 - May 23, 2020 | Cedar Park, UT

A life with RDEB

“She has really grown into an awesome woman and I am proud to have her in my life.”      —Justin

Luna zips around the living room in a blur of silky fur. Her nails click on the concrete floor as she jumps onto Monsie’s lap. Petting her dog, Monsie’s brown eyes twinkle as she retells the dramatic start to her own life. Her mother, Elaine, worked for a telephone company in New York City until her last day of pregnancy. “She went into labor at work and took a cab ride to the hospital. She thought she was going to have me in the cab.” Monsie chuckles at the near miss. It would be another 23 hours of labor for Monsie to make her entrance. Then, during the hospital’s ink-stamping of her foot, the skin peeled off when nurses removed the paper. They rushed Monsie to the NICU and she was diagnosed with Epidermolysis Bullosa (EB), a genetic connective tissue disorder  causing extremely fragile skin.

Managing the disease would not be easy. Throughout much of her childhood, Monsie was heavily sedated on pain meds as her mother struggled to offer her the care she needed. “The doctors instructed my mom to do my dressings two or three times a day, but she noticed that was actually causing me more trauma, so we cut it down to once a day,” says Monsie. Elaine’s private insurance didn’t cover bandages. “It was all out of pocket,” Monsie recounts. “She had to save money and buy what she could. Back then it cost a few hundred dollars a month.”

Because Monsie lacks the connective proteins that adhere the dermis to epidermis, even mild friction causes painful blisters and chronic open wounds to her skin, and to the mucosa of her eyes, mouth, and anus. Her subtype, recessive dystrophic (RDEB), is one of the rarest and most severe forms of EB. Monsie’s scars were conspicuous to observers. She remembers being chided by a stranger while sitting in her stroller as a toddler. “This is the world?” she asked silently, feeling ostracized. Her mother glimpsed the sadness on Monsie’s face. Elaine bent down and said what would resonate for the rest of Monsie’s life: “Don’t ever listen to negativity that people put in your head because that does not define who you are. You are beautiful how you are. Someone is going to find you beautiful.” Monsie took those words to heart, as her mother unabashedly exposed her to the world. “My mom put me in school and I didn’t really care what kids thought of me. If they did say anything, I didn’t even let it enter my brain.”

Elaine, a single mother of Jamaican descent, moved from New York to California in search of a new start and a better school district for her daughter. Education was beneficial for Monsie as it distracted her from the “mind-numbing” pain associated with EB. As she grew, Monsie desperately wanted to stay in school, despite the physical challenges. By the time she reached middle school, she was underweight and malnourished. Even with the assistance provided by using a feeding tube, it wasn’t possible to keep up with her nutritional requirements at school. Elaine decided to remove Monsie from public school and began homeschooling. Monsie turned to the internet to maintain social interaction and avoid isolation.

It was online where she first started her relationship with Justin, whom she met through a mutual friend when she was 17 years old. Justin understood Monsie’s condition better than most. He’d seen a documentary film, The Boy Whose Skin Fell Off, about EB, and was sincerely sympathetic. The two spent countless hours talking on the phone and video-chatting, eventually becoming best friends. After years of sustained support, their friendship turned romantic. “Once we were dating,” Justin recalls, “her mom taught me how to do Monsie’s bandaging. I’d sit aside and watch to see how it worked.” He promised Elaine that he would always care for her daughter and never abandon her medical needs. Monsie and Justin wed in a private beachside ceremony in California alongside their friends and mothers.

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The couple has since lived in the desert regions of the southwest, where Justin was raised. Monsie often wakes dehydrated due to her skin’s continuous loss of moisture and the dry Utah air, even with aggressive use of a humidifier in the home she shares with Justin. For the constant pain she prefers not to be heavily medicated, often using Tylenol or Ibuprofen—and in extreme cases, codeine. “I’m not a person who likes to take pain medication,” she confesses. “I don’t like to be out of control of my body and miss moments that are meaningful to me.” Beyond managing pain, there is the continuous need for bandaging, something she can scarcely manage on her own.

Between preparation, un-bandaging, showering, aspirating blisters, cutting dead skin, lotioning, and re-bandaging, the process can take up to three hours—on a good day. Monsie says, “If I were to perform this on my own, it could take six to eight hours due to the limited use of my hands.” She also needs help with putting on socks, tying shoelaces, pulling up and pulling down jeans, and buttoning. Justin prefers assisting in these ways and managing additional housework over having someone else enter their home. Since her care is round-the-clock even when asleep, their daily routine reveals the depth of his devotion. “There is some envy behind the simplicity of those who get to shower or get dressed easily,” she says. With Justin’s loving support and physical strength, the two manage to keep each other on the move, with joyful spirits.    

In addition to all her daily needs, Monsie needs to be vigilant about sun exposure. When she was 16, she contracted squamous cell carcinoma on her knee, a skin cancer commonly instigated by EB. Although her doctor advised her to amputate the leg, Monsie refused—a strong self advocate. Since then, the cancer has required over 40 surgeries and temporary use of a wheelchair, adding to the monumental toll of the disease.

However, the largest source of impediments isn’t actually Monsie’s health, but the institutions that govern it. In order to maintain eligibility for Medicaid, the couple is required to stay at poverty level to avoid hitting an income cap. This poses many restrictions on where they can afford to live and work. “I’ve had to ask my manager to stop giving me raises,” Justin adds with a gentle laugh. In 11 years of marriage, they’ve moved 11 times. The couple admits that the added struggles imposed by this income cap takes a toll on their relationship. In order to earn enough money to support a good life together, they were forced to get a divorce so that Justin’s income is not docked from Monsie’s healthcare allowance, or worse, made ineligible altogether. “We are at that point where there are no other options for us,” says Monsie.
Even at times when her coverage was more secure, Monsie and Justin have found themselves subject to medical discrimination. “In Arizona, we couldn’t find a dentist who would even fill a cavity. They were too afraid of her disorder. They didn’t know what EB was,” says Justin. On one occasion, Monsie showed up for an appointment—with a cavity and in a lot of pain—only to be turned away. “That’s part of the reason we moved to Utah,” explains Justin. “Twice we drove from Prescott to Salt Lake City, 14 hours one-way, just to see a dentist.”

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In light of such obstacles, Monsie made another life-sustaining friendship in Jamie Hartley. She was a singer and painter who, like Monsie, had RDEB complicated by squamous cell carcinoma. Jamie founded United Survivors with Epidermolysis Bullosa (USEB), an organization devoted to increasing self-reliance in those with the condition. She prompted Monsie to become an advocate, for herself and the larger EB community. “Before that, I would never do public speaking,” Monsie recalls. Jamie’s mentorship dramatically shifted Monsie’s capacities. “She was an amazing human being,” Monsie remembers.

Jamie became a fierce ally during Monsie’s most life-threatening episode. After moving to Utah, Monsie was denied healthcare coverage for six months and, as a result, was afraid to be admitted to the hospital for a severe skin infection, one of the leading causes of death for individuals with EB. “I’d never gotten that sick in my life,” says Monsie. Without coverage, she felt helpless. In response, Jamie made a YouTube video calling attention to seven months of denied Medicaid coverage and advocating for an immediate change. The video not-over-dramatically painted the situation as life or death. It went live shortly before Monsie was rushed to the hospital.
“I went to the ER and I explained to the doctors what was happening,” recalls Monsie. “My heart rate was over 140. My oxygen was in the 80s. My blood pressure was 50/30. It went to my bloodstream. The doctor in there started to cry. ‘How could anyone allow someone to get to this point?’ That’s when I knew it was really serious. I think I was in denial. I was in the hospital for a while. It was scary. It almost claimed my life."

Only after the video attracted attention did the State of Utah reverse its decision to unenroll Monsie. “I’m grateful that my friend pushed me to make that video because I wouldn’t be here without it.” Jamie taught Monsie self-reliance, but also demonstrated how to serve others in need. Unfortunately, not long after saving the life of her best friend, Jamie lost her own battle with cancer. Monsie explains, “Jamie worried about everyone else until the day she died. Her death also made it more true that this disease is real. Even though I’ve lived it, it’s different when you see someone else suffer. You feel you might be watching what you have to go through later.”

Since Jamie’s passing, Monsie has further harnessed the power of her own voice as a tool for raising awareness. She continues to advocate for a holistic approach to treating EB, focusing on treating symptoms as well as more curative measures.
With her unrestrained voice, supported by Justin’s care, Jamie’s legacy, and a community that knows and loves her, Monsie continues to advocate for herself and other individuals with EB. Justin’s admiration for her has only strengthened over the years. “She really does not let EB stop her from doing what she wants,” he smiles. “She has really grown into an awesome woman and I am proud to have her in my life.” Sitting on the couch beside her soft-spoken husband, Monsie quips, “He always tells me that where he is weak I’m stronger, and I tell him the same thing.” Together they’ve found the tender reciprocity that defines their sense of loving—and being loved—unconditionally.

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