By Leong Imm Chon
Abridged and translated by Wu Hsiao-ting
Photos courtesy of Chen Jing-wei
Despite living with a rare disease and being bound to a wheelchair, Chen Jing-wei fearlessly pursues his dreams. He earned recognition as one of Taiwan’s Ten Outstanding Young Persons in 2023.
Chen Jing-wei (陳景維), a 23-year-old resident of Yilan in northern Taiwan, daily confronts the challenges of spinal muscular atrophy, a genetic disorder affecting nerves and muscles, weakening the muscles over time. The Tzu Chi Foundation initiated support for him in 2019, enhancing the accessibility of his home, covering wheelchair maintenance expenses, and arranging monthly volunteer visits. These visits provide care and companionship for both him and his grandmother, Li Mei-hua (李美華), now 70. (For further details on Jing-wei’s story, please refer to the January 2021 issue of Tzu Chi Bimonthly.)
My connection with Jing-wei began in 2020, when I joined the Tzu Chi Foundation. He was a college sophomore at the time. His limbs and torso had already significantly weakened, and his spine had contorted. With his health in continual decline, life’s impermanence wasn’t an abstract concept, but an everyday truth.
By the end of 2020, only his right index finger retained mobility. By the end of 2021, even this sole movable finger began to stiffen and curve, compelling him to switch to an eye-controlled mouse in 2022.
Despite his physical condition, Jing-wei shared the vision of his life with me, fixing me with a crystal-clear gaze and full of anticipation for the future: “My life goals include successfully completing my university studies, publishing a book about my life’s journey, and stepping onto the TED stage.”
In my previous role as a school counselor in Malaysia, I provided guidance to many students, most of whom grappled with despondency in the face of illness or other challenges. Jing-wei, however, stood apart. He had learned to embrace his reality and coexist with a debilitating illness. Acutely aware of life’s delicate nature, he treasured every passing moment, striving to make the most of it.
Mei-hua, Jing-wei’s grandmother, assumed multiple roles when he was diagnosed with spinal muscular atrophy at only eight months old. In addition to her role as a loving grandmother, she also became like a father and a mother. She sold breakfast and took on cleaning jobs to make a living while tending to Jing-wei’s needs the best she could. She never allowed the hardships she confronted to define her, empowering her grandson to bravely pursue his dreams.
“I hope I outlive him!” These words from Mei-hua reverberated in my mind for a long time. She was afraid that if she passed away first, there would be no one to take good care of Jing-wei. I wonder if I’d have her courage if I were in her shoes. She has dedicated her life to safeguarding Jing-wei, and her positive attitude allows her to face difficulties with a smile. Her influence inspired Jing-wei to approach each day with a smile as well. Like the best of partners, the grandmother and grandson have grown together through thick and thin, their mutual support bringing light to each other’s lives.
Achieving recognition
In April 2023, when Jing-wei expressed his desire to apply for the prestigious Ten Outstanding Young Persons Award, I couldn’t help but cry. Witnessing his determination to embrace life’s opportunities moved me to tears.
Addressing me as “Sister,” he asked, “Do you think I’m eligible to apply for the award?”
I encouraged him to give it a try and assisted in refining his autobiography, which was necessary for the application. It felt like I was helping him realize yet another dream. For three years, volunteers in Tzu Chi and I had been helping him to turn his dreams into reality:
We supported him in publishing his first book, The Little Me, Who Wants to Shake This World, written in about ten months, spanning approximately 108,000 words. By writing the book, he hoped to inspire people with his life story. We also helped create an audio version of the book, allowing the visually impaired and others like Jing-wei to access the content by listening. Additionally, we organized a trip to an ocean park where Jing-wei rode a Ferris wheel for the first time. His grandmother also enjoyed the carousel, accompanied by our volunteers.
Jing-wei’s original aspirations included delivering a talk on the TED stage. While this particular goal remains unfulfilled, Master De Xin (德昕) from the Jing Si Abode encouraged him with these words, “As big as your heart is, so too is your world.” This statement broadened our perspectives. We came to understand that it’s crucial not to fixate solely on the channels that might have the most significant impact. With that in mind, Jing-wei has since embraced every opportunity to speak, accumulating over 70 presentations to date, reaching an audience of tens of thousands.
In 2020, Jing-wei won the prestigious Presidential Education Award, which honors students who manage to thrive and shine despite tough circumstances. The recognition was followed two years later by the Golden Eagle Award, a prize that commends outstanding citizens with disabilities. His journey of triumph continued as he was named one of Taiwan’s Ten Outstanding Young Persons in September 2023. His path to these accolades wasn’t without obstacles and rejections along the way. Nonetheless, he was always quick to bounce back, and he continued to advocate passionately for people with disabilities.
Jing-wei wasn’t the only one in his family recognized with awards. In 2023, his grandmother was selected as one of the ten exemplary loving mothers in Taiwan. Mei-hua’s phone call to me sharing the happy news filled my heart with immense warmth. I feel privileged to have played a part in helping them receive well-deserved recognition. Their inspiring stories serve as a beacon, offering hope to others.
Chen Jing-wei has shared his life story with many people. During his visit to Jiaoxi Junior High School in northern Taiwan, he encouraged students to understand the challenges posed by his illness by replicating and experiencing the stiff body posture he endures.
Jing-wei’s professional journey
After Tzu Chi began caring for the family in 2019, we improved the accessibility of their home and provided subsidies for Jing-wei’s rehabilitation. The foundation offered additional assistance, such as for tuition and transportation fees, but Jing-wei graciously declined the support. To cover these expenses, he sought corporate sponsorships, actively delivered speeches, and applied for scholarships to alleviate his grandmother’s financial burden. Before completing his university studies, he established a home-based studio, taking on projects in graphic design, social media editing, event planning, and more. While the initial outlook appeared promising, a series of challenges surfaced, one after another.
In addition to caring for Jing-wei, Mei-hua also cared for her husband and her mother-in-law. As Mei-hua aged, lifting Jing-wei became increasingly difficult. Consequently, Jing-wei had to hire and cover the monthly salary for a full-time home caregiver. At the same time, his studio faced irregular project flow and an unstable income. Despite his efforts to secure a full-time remote job, his job applications seemed to vanish without a trace.
For more than a year since his graduation, securing a full-time job was the foremost thought on his mind every morning when he woke up. To assist him, I recommended his resume to Jing Si Publishing Company, highlighting his design and planning strengths alongside his current situation. Taking Jing-wei’s physical condition into account, the company’s human resources department carefully evaluated his suitability for the position, his support system, and the logistics of recording remote work attendance.
After several months of waiting, Jing-wei joyfully shared the good news over the phone one day: “I’m officially starting my role as a design specialist at Jing Si Publishing on October 18.” He expressed gratitude towards me and others who aided him in securing the position. Not only was he relieved that his grandmother no longer had to worry about the monthly caregiver fees, but he was also elated to have secured his first job, signifying the recognition of his professional capabilities.
Chen Jing-wei received the Ten Outstanding Young Persons Award in September 2023. His grandmother, Li Mei-hua, joined him in accepting the honor, sharing in the joy.
Limitless potential
While I couldn’t directly experience the pain of Jing-wei’s illness or his grandmother’s struggles, our shared exploration of life’s possibilities over the past few years has been a profound learning experience. Together, we have navigated the unknown, gaining insights and growing through the process, discovering hidden treasures within life’s challenges.
I came to realize through this journey that the key to overcoming life’s challenges lies not in the problems themselves but in our attitude towards them. Mei-hua chose to shoulder the responsibility of caring for Jing-wei, and Jing-wei chose to courageously embrace coexistence with a rare illness. Each choice revealed different landscapes. I chose to accompany and assist Jing-wei in realizing his dreams, supporting him in exploring his resources and abilities, and leveraging his strengths for positive change.
Letting go emerged as a precious gift I learned from Mei-hua and Jing-wei. It instilled strength in facing the challenges posed by a rare illness for both the grandmother and grandson. Jing-wei, by letting go of and not obsessing over his physical challenges, transformed his rare illness from an obstacle into a source of motivation, encouraging him to surpass limitations and live with vitality. Mei-hua, by letting go of questioning why her grandson faced such challenges, embraced the reality of the rare illness, willingly assuming the responsibility of caring for her grandson.
Life doesn’t adhere to a fixed formula, and that’s what makes it brim with possibilities. Despite having to deal with the torment of illness, physical limitations, and economic pressures, Jing-wei strives to explore endless opportunities, enriching his life’s journey to the full. As he exclaimed to me, “Sister, let’s continue to do more things and make a positive impact in the world!”
Only love and acceptance can lead us to a place where we can truly be ourselves, embracing life’s sorrows and navigating through pain with resilience. Let’s embrace our unique journey and make the most of it!
