THE COLORS OF HEALING

    Zoe Hsu, both an artist and a teacher, has lived her entire life with hereditary epidermolysis bullosa (EB), a rare genetic disorder often called “butterfly disease” because of the fragile nature of the skin. She suffered from painful blisters and wounds from birth, which could be triggered even by the smallest touch. Changing dressings and tending to her wounds became part of her everyday routine. In addition, Taiwan’s hot and humid weather forced her to stay in air-conditioned rooms to prevent irritation. These seemingly minor aspects of daily life turned into constant reminders of how her life differed from that of others.

    During her school years, the disorder often affected her studies. At times, blisters on her eyes left her unable to see clearly for weeks, making it practically impossible for her to finish homework or take tests. She could not play freely outside with her classmates. Later, she briefly worked as a substitute teacher. As much as she loved this job, she struggled to balance her passion for teaching with frequent medical leave.

    Despite these obstacles, Zoe found refuge in painting. As a child, she discovered that art distracted her from the pain and itching of her wounds. What began as a simple pastime grew into a source of healing. Through painting, she could make friends, join competitions, and contribute to projects, building a sense of confidence that her illness had once threatened to take away.

    In 2020, Zoe joined other EB patients in a large collaborative exhibition at the Chiang Kai-shek Memorial Hall. Although it was a huge project, she was proud of it because it showed people their strength and creativity. For many visitors, it was the first time they had heard of EB. For Zoe, it was evidence that her work could help change people’s opinions.

    Her accomplishments have been widely recognized. She has received honors such as the Ten Outstanding Young Women Award, the Fubon Talent Award for the Disabled, and more. Each award, she says, reminds her that she is not just surviving, but living with purpose, and that her art can inspire others facing hardships.
Today, Zoe is not only an artist but also a teacher. Having once been a student in the Taiwan Foundation for Rare Disorders’ art classes, she now guides the next generation of children with rare disorders. She is constantly amazed by her students’ creativity and feels a special connection with them and their parents because she understands their concerns from her own experiences.

    The foundation supports her with medical supplies such as wound dressings, nutritional supplements, scholarships, and other opportunities. Yet Zoe has also come full circle: moving from being a beneficiary to becoming one who can give back. “I want to encourage children and their families,” she says. “We can all grow, learn, and live well, even with challenges.”

Writer: Jia-Yi Huang
Reviewer: Giancarlo Rotolo