Tue, Mar 17, 2009 page2

• FEATURE :‘Glass doll’ fights pain to find fulfilment on track

  • By Deborah Kuo / CNA
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  Tseng Kuan-hua (曾冠華) is often called “glass doll” because of his condition — osteogenesis imperfecta (OI), better known as brittle bone disease.

  Tseng faces life with a smile, even when in intolerable pain.

  Despite having undergone more than 20 operations on his bones since childhood, 26-year-old Tseng lives life to its fullest and has won numerous trophies in wheelchair track and field competitions, has completed a round-the-nation wheelchair marathon and has won a nationwide wheelchair ballroom dancing competition.

  

  Tseng Kuan-hua, who suffers from brittle bone disease, stretches before performing a wheelchair ballroom routine on Sunday.

  PHOTO: CNA

  Tseng, who describes himself as a “bullet-proof glass doll,” said: “I may have brittle bones and bone deformities, but my mind is strong.”

  He has had OI — a genetic disorder characterized by bones that break easily — since birth. His parents felt that he was a “soft” baby when they held him in their arms, but they did not take him to hospital and he remained undiagnosed until the age of six, when he was hospitalized after he fell to the ground and could not get up.

  Even coughing could cause a new fracture during his teenage years.

  Since then, he has had to make frequent hospital visits for endless rounds of surgery, which caused him to miss school for periods of up to 18 months.

  “I’m going to the butcher tomorrow,” he would say when told he required more surgery.

  Despite being a “veteran” of the operating theater, Tseng admitted that he still feels scared before he is wheeled in.

  “Before the operations, I was afraid to go out in shorts during the summer because my legs were curved like a No. 3 and dotted with steel pins,” he said.

  Currently a student at Hua Fan University in Taipei County majoring in architecture, Tseng is about five years senior to his classmates because of his illness.

  He said he is used to getting raw deals on campus or being left out by his peers, but added: “It’s OK to be left out. I’ve learned to enjoy myself.”

  Tseng grew fond of physical exercise with the encouragement of a physical therapist at the Cheng Hsin Rehabilitation Medical Center in Taipei.

  “I felt so happy when I found I could work out like normal people. It feels good to be soaked with perspiration,” he said.

  Many trophies stand on the shelves in his room, representing his sporting achievements. He has taken part in Taipei’s special games for the mentally and physically challenged since he was a junior high school student and his victories include gold medals in the 100m and 200m wheelchair race.

  He represented Taipei in last year’s National Disabled Games, winning the 110m super hurdle race and finishing fourth in the 100m wheelchair race.

  “On the track, the fastest gets the championship. But in life, victory is more difficult to define,” he said.

  Before he discovered the joys of ballroom dancing, his was a solo act. Ballroom dancing in a wheelchair, however, is a different matter, in which dancers have to coordinate and interact with their partners, a discipline that has taught him about sharing and collaboration with others, he said.

  Most of the surgery Tseng has undergone occurred during his teenage years. During that time, he was befriended by a number of wheelchair-bound people who invited him to join a campaign calling for a barrier-free environment in Taiwan for the physically challenged.

  When he was 15, Tseng joined these activists on an ambitious round-the-nation rally, a “mission impossible” that they completed in 10 days.

  The “wheelchair army,” however, endured a horrible start, with lashing rain and difficulties on the road almost breaking their determination. It took almost a whole day for them to make the relatively short journey from Taipei to Sinjhuang in Taipei County.

  Tseng said he would never forget how they toiled on the road to make their voices heard. Some of them had to put up with bleeding arms and hands because their wheelchairs were so shabby, but none of them complained or asked for a rest stop.

  Still, he added, their suffering helped illustrate just how much pain physically challenged people sometimes have to bear — indescribable pain that most people can never even dream of.
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