What Do You Say?

Friday, 7 November 2008

What do you say when you know someone is dying? She has definitely lived and fought a strong battle. After 6 years of being afflicted with the horrible disease (and hers a familial one - as she lost her twin sister, mother, and grandfather to ALS), Peggy Chun has decided to move ahead with her "end-of-life plan". I remember when my dad first was diagnosed with ALS. We arranged to visit her. She graciously met with us, and started giving us advice on everything my dad should do and check out. Since my dad had already lost his fine motor movements in his hands, I frantically took notes on everything she had said. Two and a half pages later, we had walked out with lots of helpful information, from a veteran if you will. She told us everything from who the best doctors were to the best foot massager to help the circulation in the legs. The spellboard she used back then and her ERICA computer system (where she moved the mouse with her eyes to type the letters) is no longer operable. In recent months, she has lost her ability to control her eye movement, the only movement she's had in years. Since her ability to communicate is failing, she has decided to start the weaning process from the ventilator.

Chase and I met a few others from the ALS Support Group as we visited Peggy in her colorful, eclectic Nuuanu home this afternoon. An artist with a flair for drama and a love of color, Peggy's room has always been full of photos, paintings, lights, funky decor, and now, a decorated Christmas tree. After the nurse fixed her eyes and strapped her chin so her mouth would close, we stood around Peggy's bed and talked to her. Divina rubbed her cold hands, which were wrapped in socks to keep the heat in. Chase warmed up (after waking from his car ride nap) and was interested in her cat and all the angels hanging from the ceiling, the Christmas decor, and of course Peggy. I held him in front of her so she could see him. I really didn't know what to say, but she moved her eyes a bit to where Chase was, so I knew that she was interested in him.

We chatted a bit about ALS support group stuff, the Christmas caroling, donating a turkey for Peggy's early Thanksgiving celebration, and visiting another friend Lisa, who apparently is also losing the battle with ALS (which is so disheartening to hear as my dad always had a special kinship with Lisa). Peggy's family and friends are surrounding her with love these days, and they're trying to fulfill her "bucket" list of things to do by partying it up. Coming soon, they're taking her on the Superferry to Maui, and having a pajama party at her place so they can roast smores (since she's always wanted to go camping, but will have to camp "in" this time.).

I showed Chase Peggy's book, The Watercolor Cat, which covers the story of her battle with ALS, along with her colorful watercolor paintings. It was a nice distraction while we were in traffic with a fussy Chase. I am grateful for meeting Peggy and knowing her, even if it was for such a short time. She was an inspiration to me when my dad had been first diagnosed with ALS. Her courageous and positive attitude has always been so wonderful to see (as it was to see her dressed up in costumes for almost any occasion!). Her team of "Peg's Legs" and family have been so united in supporting her 24-7 through this journey. Her lively spirit will be missed, but she has touched the hearts of many, and so I know her spirit will live on.