Deja vu: A Perspective Revisited

That Saturday evening at 11, I was ready to go to bed after spending most of the day baking Christmas cookies with Nancy, Rose Zabanal of UPAA and our "Barefoot Contessa" of cookies, Cathy Anderson but I couldn't resist checking my email. There it was: Paul's email announcing Daria's brain tumor surgery day after Christmas! It sounded very ominous: recently discovered, fast progression of symptoms pointing to a fast growing tumor. Naturally, I was shocked! Paul had explained Daria's absence at our Christmas party as Bell's Palsy - a nasty, virus-based illness, which can leave annoying slight residual symptoms but... brain tumor!?!!
It brought back memories of my own illness because of the similarities: the dreaded cancer, surgery around Christmas time and my husband living with an illness of his own. The memories swirling in my mind led me to my desk drawer, where I kept the original letter I wrote to friends and family that year when I was in the throes of undergoing breast cancer treatment.
At this time of the year when we pause to ponder the meaning of Christmas, I think it is appropriate to share it with you. Although it presents an individual perspective, the universality of fear AND hope when faced with a threat to one's mortality cannot be denied.

December 4, 1997

In three days, it will be exactly one month since the mastectomy. I look at the thin line on one side of my chest where my breast used to be and I know I am mending. In one way. In other ways, I am waiting for my private world to stop spinning so I can see where I am. And where Britt is. And Thomas, Zandra. And the rest of the world that I love and loved me back.

With heroic efforts, we tried to keep the flowers alive and like all mortal things, they slipped away. The wonderful dinners became leftovers and then they were gone, too. The greeting cards with their beautiful words of encouragement and support are somewhere in my little bag. The one with all the magazines, the books, the stampitas, loose change, video cards and the journal where I wrote "F" words in. I am sure the heavens were choked with smoke from jos sticks lit in Hongkong and candles in Spain. And God had an earful from novenas from the Philippines, prayers and good thoughts from Nepal, Micronesia, the mainland, Kauai. Everywhere friends, family and even strangers put in a good word. Everywhere where Britt's email SOS reached as he sought counsel, helping hands, prayers, information. Whatever. And got back much more.

It is staggering to be the object of so much love and concern. Me, the strong one. Me, the giver. It is a role I am not used to playing.

There are times I am able to locate my sense of humor. It is hard to live up to being half-Kate Moss and half-Dolly Parton. On others, I cry a little while I put feelings to words. Many times, I am afraid. Of dying. Of chaos. Of being nothing. Of a paper cut in the wrong arm.

Last night, I felt the need to walk down the street. Just to experience walks I've had before. I looked up the sky and saw the same star that was over me a month ago. It was only then I noticed it. But it must have been there long before then. As surely as life has always been. In one form or another. As surely as it is marching on now while I'm trying to keep in step. One wobbly step at a time.

Yes, life has gone on. So must I. So will I.

Thanks for being there for me and mine.

Love always, Divina

PS. May your Christmas and New Year be as blessed as you've made ours!

If you didn't make it to the ALS Support Group Christmas Party at the Philippine Consulate this year, here are some of the things you missed out on....crazy holiday hats, Secret Santa Joe, a one-man band, 'ono food and desserts, dancing, piano playing, gift give aways, a caroling preview, and fun chatting with new friends and old.

ALS Support Group Christmas Party at the Philippine Consulate Tonight!

Tuesday, December 9 2008

WHAT: ALS Support Group Christmas Party
WHEN: Tonight, Tuesday, 12-9-08 at 6 pm (or earlier if you want to help set up!)
WHERE: Philippine Consulate
2433 Pali Hwy
Honolulu, HI 96817
(808) 595-6316

** Appear in Christmas colors with your Christmas paraphernalia (earrings, beads, etc.). To continue our beloved Peggy's idea of a fun Christmas costume - headgear! antlers preferred (but Santa hats, okey, too!)
** Bring a dessert dish to complete our Gyotaku meal!
** Come with your pahhhhty attitude and prepare to have a wonderful time!!!!!

To my dismay, I discovered that the restrooms at the consulate are NOT accessible. For some reason, because the lanai is flush with the ground, I thought everything was. There is a step-up to the bathrooms. Does anyone have a ramp we can borrow for anyone who needs it? Other than this oversight, the following are okey!:

1) Food: MDA is paying our our Gyotaku-catered menu of yummy stuff: mochiko chicken, yakitori, maki sushi, teri beef, rice, noodles, and namasu. Thanks to Jen's pake negotiating, MDA is getting a good deal! Penny is bringing oriental chicken salad and we all said we would be bringing desserts. I will bring a pan of my sister's famous bite size pecan pie-lettes! Nancy will make punch and Jen will bring the water cooler for it. There is a cold-water fountain at the lanai so no need bring water. Nancy and I will bring carafes for tea and coffee.

2) Raffled door prizes: the following have pledged to bring gifts:
John Wray - 2
Jennifer-3
Penny- 16 (yes!)
Joan matsukawa (KCC) - 1
Daniela Minerbi (KCC) - 1
Pat Nishimoto (Tripler)-5
Jessie- Koppel - unknown qty.
Laura Steelquist (HIMED) -1
Violeta Arnobit (Ace medical) -1
Divina - 5 GC's or Peggy calendars
Rouie Dumlao (my sister) - 1 Long's GC
Kathy O-christmas stockings

We'll make sure everybody goes home with something.

3) Additional revenue from 3 (three) sources: a)I passed the "Christmas stocking with string attached" last Wednesday at NAMI and got $94 cash. b) I emailed everyone in my eddress book and got the following monies pledged or checks made out to HALSSGO:
Auntie Myrna Rosales - 100
Lynn Wells - 100
Charon Pierson -50
Jennifer Nagtalon-30
Nelli Balingit-50
Nishihama and Kishida (Alton Miyashiro) - 100
Juo Leung - 30
and 3) Jessie Koppel - $300 pledge.

Folks, we need to send thank you's to these people as well as all who gave us gifts in many ways (above and as resource persons). I propose taking a group picture tomorrow with all our christmas regalia and make a card out of it to send to everyone.

3) Decor: UPAA left the stage decor on for our use. Our president will ask ConGen to have us use the chandliers and the PA system tomorrow. I will get poinsettias in pots to decorate the planter boxes and to raflle away as door prizes. Sundry decorations. I will be at the consulate as early as possible tomorrow to set-up tables/chairs. We need somebody at the reception table for nametags and taking attendance esp to take down mailing addresses for TY's. NEED VOLUNTEER. We will set up 7 long dinner tables and 2 tables for buffet.

4) Programme: Can we have someone do an invocation? at yesterday's UPAA party, one of our alum read a poem by Maddie Stepanek from his heartsongs. it was very touching! We will have Kathy O's friend the one-man band, a short holiday game engineered by Kathy O, a piano rendition by Daniela Minerbi and a few words from a representative of Philippine Consulate (probably Consul Paul Cortes who sang a stunning Christmas song last nite). We will also have an, ahem, dress rehearsal from our Singing Christmas Troubadours - some from our group and some from UPAA.

If I have forgotten anything/anybody, please let me know! Meanwhile, Cathy Anderson and I are planning the cookie baking for Wednesday for the 7 families we are visiting on Thursday.

Okey, reindeer and elves, see you all tonight ready to have fun, food and festivities!

Peggy Chun's Memorial Services Friday

The public memorial services for Peggy Chun are set for tomorrow, Friday, December 5th at Kawaiha'o Church. Visitation is at 1pm, with services following at 2pm. The family is also having a private lu'au for Peggy’s friends and family that same day.

Also, a note from Kimi, Peggy's daughter-in-law:

Get your last minute Christmas shopping done all in one place! Artwork by Peggy and others, prints, calendars, cards, cookbooks, The Watercolor Cat book, and more. Plus, check out the household treasures looking for new homes as we begin to plan a move to a new location.

Peg’s Legs Christmas in Nuuanu
An Art & Treasure Sale at Peggy Chun’s

Friday December 19th 11am to 4pm
Saturday December 20th 10am to 4pm

Peggy Chun Art Studio & Gallery
3115 Alika Avenue Honolulu, Hawaii 96817

Most importantly, come and see us because we miss you all! Even if you’ve finished your shopping, just come for the refreshments and socializing. And don’t forget your Christmas costumes in honor of Peggy!

Friends and family are welcome! Mele Kalikimaka!

Email kimi@peggchun.com or call 808-595-8434 for more information
www.peggychun.com

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.

Vi's Adventure Trek and Run, October 18, 2008 at Kualoa Ranch, Oahu, HI

This morning, more than 200 hikers/runners joined Vi Jones-Medusky, a multi-marathoner and surfer, who happened to have been diagnosed with ALS a few years ago, at raising funds to increase awareness of ALS and support for local families with ALS.  The effort was done in cooperation with volunteers from Hawaii Ultra Running Team (HURT) and MDA Hawaii.  Where dinosaurs used to roam in "Jurassic Park" movies, hikers/runners hoofed it, dodging cow "cakes" and breathing in that crisp, cool, clean Hawaiian air.  For many, never mind the clock...they came to have fun and enjoy Mother Nature.  If you click on the picture above, you can see the slideshow in a bigger size.