Visiting Lisa

Monday, November 24, 2008

Divina, Chase, and I visited Lisa Yamaguchi this afternoon at her Pearl City home. Diagnosed a couple of years ago, Lisa is now fully dependent on a ventilator and feeding tube. Her mother and father are her primary caregivers in their home. My dad always held a special place in his heart for Lisa, as did she for him. I haven't been able to visit her since after my dad passed last year, so this visit was long overdue. Though I spent much of the time chasing Chase around their house, it was so nice to be able to talk to Lisa's parents, and most of all, to be able to talk to Lisa and be there for her during this difficult time.

Lisa's mom Jane spells out her words for her by watching Lisa's eyes, as she moves her eyes up for "yes" and to the side for "no". She told us about her recent outing to see Cirque du Soleil and her future plans to go for a drive around the island and take a dip in the ocean. She is really looking forward to seeing her niece graduate from high school this spring. She joked about her "expectant belly", and though she couldn't smile, she let us know that she was smiling inside.

Before we left, we held hands and listened to Na Leo Pilimehana's "Friends" song. Here we are pictured with Lisa and her mom Jane. I've also included a picture of Lisa with her friends, from one of her fundraisers she had a couple of years ago. A former preschool teacher, Lisa is a dear friend with a kind heart. You can tell from the photos and letters that decorate her room, Lisa is well-loved by many friends and family members. We hope a few people will be able to Christmas carol to Lisa's home this year.

You can copy and paste the link below to see a website some of her friends set up in 2006.
http://lisa.oceanit.com/mambo454/index.php

Hope you all have a Happy Thanksgiving. Give thanks for good health, family, and friends. Remember to surround yourselves with loved ones during this holiday season.

A "Peggy" Story

We were putting away the chairs and tables. It was a well attended meeting and we ended in good spirits. The new member we were expecting to arrive did not. But Audrey (or was it Jennifer?) had cautioned that she may not come. There had been rumors circulating that the local artist, Peggy Chun, was recently diagnosed with ALS. Fortunately, no one else in the group knew she was supposed to come, so only I was disappointed when she did not.

We were almost done with our task when she breezed into the auditorium. She was dressed in slacks and brought a wind of energy into the room with her. She still had her hat on and was carrying a beach straw bag. She hugged Audrey and then, me. She effusively said her apologies for being late. We continued putting away stuff while she described the many things she had been busy with lately. She was busy, she said, preparing for her death.

I had never met this lady before but I thought then, that people must find it hard to stop her when she is in this kind of mood - expansive, garrulous, effusive. When she finally paused for a second, I asked her, "So, you are prepared for dying. But have you prepared yourself for living with ALS?"

She looked at me and blinked, as if she had never thought of that before. Then she said, "Oh, yeah. That's right." She blinks several more times, smiles, turns, and continues to speak with Audrey, the thought now tucked somewhere in consciousness.

I can't remember what else happened that night. But in the six years following her diagnosis, Peggy has taught us how to live with ALS: a life without fear, fun without reservations.

Farewell, Peggy...

http://www.honoluluadvertiser.com/article/20081120/NEWS01/811200367/1001

Read the beautiful article written by Honolulu Advertiser's Lee Cataluna as we bid farewell to Peggy Chun. After 6 years of living with ALS, Peggy lost her battle last night, surrounded by much love from family and friends. With deepest sympathy to the Peggy Chun Ohana.

Rainbow

I thought I would stay with the view from my window theme for a while longer. So here is a picture of a lovely rainbow from my bedroom window and a picture of me in my living room.

Rainbows have a special place in the hearts of all people who live in Hawaii. We are so lucky to live in a place where we can see rainbows almost every day. From my bedroom window I can look towards the mountains and see a rainbow on most days. As the rain from the Windward side of the island comes over the Koolau mountains and the sun shines from the West the synergy that creates rainbows comes into play. It is a beautiful sight and brings sensations of hope and joy that nature is alive and well.

Last Year's Christmas Caroling

Here are some pictures from last year's Christmas Caroling. In these pictures, we were singing to Peggy Chun. It was so much fun, but we had to leave early (darn baby Chase!) and couldn't visit everyone. Hopefully, this year, we will make it all the way through the evening!

So, get your singing voices ready and come join us for our first practice on December 2nd at UH Saunders Hall Graduate Student Lounge at 5 pm.

Peggy's Early Thanksgiving

Sunday, November 16, 2008

It was a celebration of life, for a woman who has fought a long, hard battle with ALS. She has lived with much love, laughter, compassion, and tenacity. As Peggy joined the party (which I'm sure went well into the night) on her hospital bed, under the tents on her front lawn in Nuuanu, friends and family gave blessings, sang songs, and shared stories about the well-known local artist. Many people from the ALS support group came out to show their support for Peggy Chun this afternoon.

Full moon

I am new to the process of blogging but thought it might be fun to share some thoughts that I have on occasion. As I write different blogs you should learn more about who I am and my current journey with ALS.

A few nights ago I had the pleasure of sitting in my wheelchair by our Pali highway window and viewing the rising full moon. I thought of you able to view the same moon no matter where you are on this planet. In our apartment we have lots of beautiful windows. My favorite is the Pali highway window. It is right next to the kitchen and looks out towards Koolau mountains. In the lower portion of the window I can see the tennis courts and doggie park for the apartment across the street. If I tilt my wheelchair a little higher up the window I can see the Chinese, Japanese, Hawaiian-local cemetery. Then, the Pali highway with all of its rushing cars and lights. After that the houses claiming the hillside and then finally the mountains themselves. There is always a very strong breeze blowing through this window. It is cool and moist coming from the valley. Tonight, go outside to your local park for me if you can and look at the moon. Send me positive thoughts and I send them to you as well.