ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, December 25, 2008

We Can Only Hope That President-Elect Obama Read The Morning Paper in Hawaii Today

http://www.starbulletin.com/news/hawaiinews/20081225_Artists_strength_living_with_incurable_illness_will_be_an_inspiration_forever.html

10 WHO MADE A DIFFERENCE: PEGGY CHUN
Artist's strength, living with incurable illness, will be an inspiration foreverSTORY SUMMARY
READ THE FULL STORY
In a daily countdown, the Star-Bulletin is profiling 10 people who have made a difference in Hawaii during the past year.
These are people who worked in any field - community service, education, politics, law, labor, medicine, science, business, sports, entertainment, the arts - to make a difference. Some fought controversial battles in public.
All that matters is that each, to the one, had a devotion to their cause that made a profound impact on Hawaii.
FULL STORY >>
By Betty Shimabukuro
POSTED: 01:30 a.m. HST, Dec 25, 2008 "A celebration of life" - that is the phrase we use to take the edge of sadness out of a funeral. But when services were held for artist Peggy Chun on Dec. 5, it would have been hard to call it anything but a celebration.
"Mourners" wore butterfly wings, antennae atop their heads; a few dressed as penguins - and although tears were shed, smiles and laughter were in abundance as well.
Chun died on Nov. 19 at age 62 after a six-year battle with amyotrophic lateral sclerosis - ALS, or Lou Gehrig's disease - although "battle" might not be the right word. Even as the disease robbed her of all power of movement and speech, Chun seemed to view each progression as inspiration, not degeneration.
"I'm happier now than I've ever been," she said in 2003, a year into the disease and already traveling by wheelchair. "It's been one hell of an adventure after the diagnosis."
In 2008, although she could communicate only by directing her eyes toward letters arranged around an alphabet frame, Chun supervised the completion of a mosaic of Father Damien, made of thousands of tiny squares of paper that were painted by students at Holy Trinity School.
Although well respected for her art, the indelible mark that Chun leaves is in the example she set, finding purpose and fulfillment while coping with a devastating illness. She rallied hundreds of people around her - a volunteer army called Peg's Legs who shared her care and who were certain that her mind remained active and her spirits high until the end.
"She was a force of nature," said Lynn Cook, who became the family's spokeswoman in the final days of Chun's life. "If she didn't want the gallery to get wet, I swear she could deflect storms."
Chun prepared for each stage of her illness so that she could keep painting. She used her left hand when her right failed, then held her paintbrush in her mouth, then used a computer program that allowed her to paint through eye movements. She treated each adaptation not as a compromise, but as a new skill that added texture to her work. ...

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