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Home>Service> Awardees of Fervent Global Love of Lives Award> 17th Fervent Global Love of Lives Award 2014> Yuan Peng-Wei—A Dreamer with ALS
[Fulfilling dreams without confinement]

Every wheelchair is a vessel of remembrance that floats on a cold day in December. 
How much I want to build a lighthouse of my own to guide those loitering boats. 
My heart is a port, and I thank whatever ship that stays and leaves. 
As I breathe, the cold condenses the air, which allows you to explore life as you breathe shallowly and to realize the purpose of life as you breathe deeply. 
With every breath, comes gratitude for love and possessing.
—Yuan Peng-Wei
 
Thirty-five Countries Before the Disease
Before being diagnosed with ALS, Yuan Peng-Wei was proud to be a distinguished alumnus of Daan Vocational High School and National Taiwan University of Science and Technology. He was also a hardworking employee at Foxconn and Systex who had traveled to 35 countries. When Yuan became sick, he still embraced the spirit of "living at the moment" and made every day in his life count.

Apart from successfully developing an LED panel to communicate with others, Yuan, who can no longer speak, also dreams to start up a store named "the Store of Story", where family members of patients with ALS can sell their artwork. As patients with ALS take part in art activities, they relieve stress so that patients and their families can once again be dignified by helping themselves and others.

The Spark of Dream --- the LED Panel
When Yuan started to design an LED communication panel, things were not as what he had expected. "Patients with ALS are too few in number to form a real market. No manufacturer would want to mass produce it." many had remarked. But because of Yuan's good intentions, a miracle occurred: the Executive MBA program at National Chiao-Tung University launched a fundraising event, and the NCTU Eco-City also formed an alliance with the ALS Association. Within six months, Yuan started from learning the needs of patients with ALS and their families, and then he observed how patients led their daily lives at home, and then worked on the design along with engineers and physical therapists.

Students in the EMBA program at NCTU also formed a team named "The Dream Factory", which was responsible for patent filing, fundraising, supplier seeking and custom designing a model for commercializing the LED communication panel. Finally, 50 units were produced.

Many were grateful to the Ministry of the Interior for its support, with which Yuan's great invention, the LED communication panel, became an item issued by the government that patients with ALS are eligible to apply for.

A Dream that Benefits the Underprivileged
Racing against time, Yuan exceeded his limits and became someone who helps others and realizes dreams by developing the first LED communication panel and establishing the Store of Story to benefit the underprivileged. The Dreamer with ALS truly stands out from 2239 candidates and is awarded the 17th Fervent Love of Life Awards.

Beyond Confinement
At the end of 2003, Yuan discovered that his voice became hoarse, that he could hardly recover from a cold and that his tongue constantly trembled. After six months of diagnosis, the doctor confirmed that Yuan's neurons had been affected and that he suffered from ALS. Yuan was said to only have two to five years felt.

At first, Yuan was in denial. His family and friends supported him so that Yuan could overcome sadness and disappointment. Yuan has been sick for more than 3000 days, during which his sister has regularly given him a message, cleaned his ears and cut his nails. His eldest brother, who lives in the US, also returns to Taiwan regularly to pay him a visit. As conditions deteriorated, Yuan's eldest brother and his wife bought a computerized communication device for Yuan, and Yuan's second eldest and younger brothers set up the device. Yuan's wife never gave up on him either.

Web design and liberal arts were never Yuan's field of interest and expertise, but with his family's encouragement, Yuan pondered upon what he could still do for the public. Yuan now sits in a wheelchair and can only move his fingertips for eight centimeters, but he clicks on a mouse to select from the 37 phonetic symbols (the Zhuyin symbols) on the LED communication panel so that he can express every word in his thoughts despite difficulties. But only by patiently typing out every word in detail can experiences and emotions be shared. "Disabilities result in more delicate organs." As Yuan writes and draws, he remedies his conditions mentally and learns to cherish every breathing moment.

A patient's family member once sadly said that patients with ALS are like fish stuck in a tank. Indeed, A fish stuck in a tank best describes a soul trapped in a gradually frozen body, but the mind is still free to relate to the outside world. Patients with ALS can still by all means have fulfilling lives, in which memories and imagination are an ocean of freedom that Yuan is so grateful for.

From a Dream to a Reality
Yuan was once asked, "Why is your blog always beautiful?" Yuan's artwork contains a wide variety of colors, so that viewers could see the past glory through the bright scenes.

In fact, many patients with ALS are people with many talents.They are adept at photography, poetry, and story telling. Yuan has always dreamt of establishing an online shop named "The Store of Story", a dream factory for patients and their families to sell artwork. The good news is that, in 2013, this project received subsidies from the Stock Exchange.

Apart from art and creation, many patients with ALS want to fulfill dreams before their limbs become numb. Lin Zhan-Rong, another renowned patient, once launched an event called "Wheelchair GO", which serves as a good example that patients all have their dreams. The Store of Story aims to encourage patients to voice out their dreams, so that with a social network, they not only can encourage one another, but also work with one another.

Some would hold Yuan's hand and say, "Thank you for teaching us how to face death." In response, Yuan could only awkwardly smile. What Yuan preaches is not how to die, but rather, how to live. Yuan has never experienced death, thus he cannot and he does not need to teach it. Death, no matter peaceful or not, is inevitable. The only choice we can make is how we live.

Living is Dialoguing
Yuan exerted his expertise in mechanics that he had learned at Daan Vocational High School and National Taiwan University of Science and Technology as well as all that he had experienced in 35 countries to create the first LED communication panel despite all difficulties he has faced as a patient with ALS. His creation has benefited other patients with the same disease. For Yuan, living is dialoguing. In order to inspire others, he first found his own value and purpose of lives.

Breaths with Love that become Countless Words
Life is difficult. Its fissures are sometimes hard to close. But it is because of these fissures that light can find its way in, There are over 300 patients with ALS in Taiwan. The author of the Diving Bell and the Butterfly was also a soul trapped in a frozen body, and when Yuan won a literature contest held by the Bureau of Cultural Affairs of Kaohsiung in 2012, he only moved a mouse within an eight-centimeter radius. He was awarded for what he did by voicing out every word in his mind and by emitting his enthusiasm from deep within.

ALS has haunted Yuan for ten years, and his life now is worlds away from when he traveled to 35 countries. Elbows and hands are the only parts that Yuan can move now, but his soul attempts to escape from the prison of his body: he not only took part in 150 hours of graphic design training online, but also diligently created artwork.

Yuan has excelled in many competitions, such as the Taiwan Blog Contest, and the International Competition for Artists with Disabilities held by the Phoenix Sister Cities Commission, and many more. Yuan has published over 1000 poems and essays on his blogs, and he posts at least one article and one picture everyday. His self discipline shows how he races against time.

Chou Chin-Hua, the founder of the Chou Ta-Kuan Foundation, once visited Yuan Peng-Wei, who was in a wheelchair with his neck muscles paralyzed. His head remained in front of his chest, but he always wore a smile. At his front door, there was a computer-generated graphic poster in which Yuan and his wife stood in front of the Sydney Opera House. This picture of Yuan's honeymoon memory took him a month, but his past happiness was what drove him forward. Despite the fact that he could hardly move his body, he still found light from fissures, which stand for internet artwork.