Saturday, March 16, 2013

We Sprung into Spring Last Tuesday!

   The weather turned out fine despite the gloomy skies and wind of the morning.  There was even a glorious sunset to boot, as guaranteed.  The ono grindz is legendary, no question.  When the group gets together, it is always a good time.  Adrianna, MDA Exec Director, introduced the newest members of the crew: Fundraiser Jade and Health Care Services Coordinator, Jeana.  Welcome aboard, ladies!
   Never mind that Phyllis J, Ronaele W, and Tanya M-H - kids Zach and Chase in tow - came a little bit late.  They were immediately engulfed in the camaraderie and conversation.  
   As always, these pictures will be our guideposts in memory and look forward to our next beach happening in October, when we "Fall into Fall."
    Meanwhile, next month (April) we go back to the Queen's Conference Center for our regular meeting.  Thank you, everyone who came to the beach, for your presence, potluck contribution and the fantastic fellowship!


Back: Dale Mahi, Tami Honzaki; Front: Jessie Koppel, Nancy Fujino, Jeana

Paul Mahi and Bruce 

Guests Angie and Cecilia

Kathy O'Connor

Our buffet table with KathyO

Jessie's ono pasta
From Divina's calamondin tree

Kathy O's yummy salad and chicken

Portuguese Bean Soup!

Nancy's veggie curry

The MDA Ladies: Jade, Adrianna, Jeana and Niki

The early bird group

Dale's captive audience

Look over here and smile!
Ronaele Whittington and Phyllis Johnson

Tanya Mau-Halsall with Chase and Zach

The shadows are lengthening as we chow down.

Saturday, March 9, 2013

Starting a "Caregiver Series"

     If you have noticed, this blog provides a variety of information about the ongoing life of Hawaii ALS Support Group.  This group meets every second Tuesday of the month at the Queen's Conference Center, at the corner of Beretania Street and Punchbowl in Honolulu.  It started about 12 years ago, when Joyce Okahashi and I brought the need of organizing a group to the attention of then MDA Directpr Kathleen Hurtubise.  Since then, the group has been meeting regularly, thanks to the unrelenting support of MDA.

    One way to continue to help families with ALS everywhere is to provide a forum in which information about caregiving is offered and discussed.  This blog will start a caregiver series, in which relevant topics are introduced and reflected upon.  Comments are welcome; in fact, encouraged!

     What do you think?

Thursday, February 28, 2013

Ushering in March

        Ever wonder why February is a such short month?  That's because we all can't wait for winter to go and for Spring to start! Who is not ready for the scent of flowers, gentle breezes, light showers? March cannot come any sooner!

        March 2, Saturday! Yes! The first Caregiver Breakfast of 2013 happens! A while back, in the early years of the Ohana, we organized breakfasts on selected Sundays, exclusively for caregivers. In private as well as  during meetings, caregivers had always expressed the need to get together and talk story.  I added the part where they do it while eating ono grinds.  Gathering caregivers together was also a way of empowering women, who generally, take up the responsibility of family caregiving. In the spirit of fun,  we joked that men who wanted to join needed to be bestowed the title, "honorary women." The many get-togethers that followed were always well attended, especially when we chose to alternate the breakfasts with afternoon teas.  Hoping to build on this success, we would like to reinstate these outings beginning this Saturday, again, for the same reasons - to offer respite, camaraderie and exchange of valuable caregiving wisdom.

     In the spirit of abandon created by our "March into spring", our regular meeting will give way to another social, "forced" upon us by reason of an unavailable room at the Queen's Conference Center.  Our "Spring into Spring" event will be held on Tuesday, March 12, 5:00 - 7:00 pm, half an hour earlier than our usual meeting time, at Ala Moana Beach Picnic Site #30. Conveniently located close to the handicap parking stalls and the comfort station, this spot has been our favorite.   Please bring a potluck dish to share.  A glorious sunset comes guaranteed.

     Then, on March 30, Saturday, we will have a baby shower for Tami and George Honzaki.  Tami's dad, Lloyd Fujino, had ALS; so did George's mom, Elsie.  Tami and George both came to support group meetings with their parents. When both parents passed away, Tami and George continued to come to support group meetings and participated in all events of the group.  We lovingly watched in the sidelines as a romance blossomed in our midst. We were happily there when they eventually walked the aisle.  And now there's a baby girl making an appearance by Stork in May. Some group aunties are stitching together a quilt for her.  Naturally, a baby shower is in the works at, where else? Paul Gagnon's home, where the wedding shower was held!  We will talk about the details on Saturday and will post them here...

     That should wrap up March and we look forward to April!!!




Saturday, February 16, 2013

Ode. Once again


Why take two steps
The last one just ended
In a ditch;
The colors are off and
The note is written in sap

Take it easy.
Oh, take it easy.

The chemistry is gone
Awry.
But I hear you 
In seamless harmony.
I ain't going yet.
And when I do, I ain't going far.


Only to the closest star.


Saturday, February 9, 2013

It's About Love

     'Tis the month of hearts, after all, so what's more apt a topic than love? Families living with ALS need oodles of love, not only to survive, but to thrive.  What kind of love is that which nurtures the ability to rise above mere existence?

     A nurturing love is the kind that takes commitment seriously. A person with ALS needs the assurance that he can depend on someone's caring. When one is vulnerable to a disease that saps physical vitality, erodes self-confidence, and keeps one feeling helpless, it is only too easy to succumb to despair.  To rebuild despite the daily destruction of muscle and image, one needs constancy in others.

     The only thing predictable about ALS is the fact that it is a willful, tireless, petulant and capricious enemy. Its course is highly individualized which makes it hard to generalize from the population it affects. One can only hope that, for the victim, it decides to be indulgent. Those of us who love need to persevere through the ups and downs that mark the course of the illness.

     When we say our love is strong, we must mean that it is strong enough to realize its imperfection - that it can wane,  not because it no longer cares, but because it also needs nurture. It should seek ways to renew itself - like a soldier in battle that understands he needs reinforcement with sleep, rest, food, respite, fresh supplies. We who love should seek to maintain equilibrium in ourselves so we can deal with daily chaos and an uncertain future.

     ALS is relentless. Our love should likewise be.

   





Thursday, January 31, 2013

A Renewal

     I am back.
     For too long, I have been silent. It was both a result of arm-twisting and personal choice that I became the President of the Hawaii Chapter of the University of the Philippines Alumni Association.  Because I could not say no to the association elders, I decided should do something worthwhile with the two-year term.  For 2010-12, I would lead the organization to establishing a Professorial Chair in the University of the Philippines so that in some way, all Hawaii alums will have the opportunity to give back to the University to which we owed so much. We worked hard to reach our fundraising goal of $36,000, the minimum for a Professorial Chair.  At the end of our term in August, 2012, we reached our goal.
     When I became UPAA president, I knew my volunteer energies would be limited to just the work with UPAA. I limited my HALS involvement to its very basic requirements.  With fulltime caregiving for Britt, I did not have enough time, energy or desire to burn any more candles at both ends.
     With the help of our other HALS ohana (Nancy Fujino, Kimi Morton Chun, Jan Medusky and crew, Tami and George Honzaki, our Yard Sale Crew, and many others), we continued to work on our usual concerns:

     1. Volunteer to facilitate and engage the MDA ALS support group clients in the monthly meetings;
     2. Organize our “Spring into Spring” and “Fall into Fall” socials in March and September respectively;
     3. Hold the annual yard sale fundraisers at my home in the during the summers of 2010-12;
     4. Organize and lead the December Support Group Christmas parties at the Philippine Consulate General;
     5. Conducted my own fundraising every year calling on family and friends to donate to Hawaii ALS; and
     6. Helping with our ALS families’ concerns, such as condoling with those whose family member who passed, cheering up folks who were hospitalized for acute illnesses, and communicating outside of meetings, generally through email, with clients, caregivers and persons who were from out of state but who have heard of our existence.

     In those two years, I did not once come back to this blog.
     And now I am and I feel good being back.  In July, 2012, Britt retired from being Professor at UH. Retirement is a whole new ball of wax, let me tell you. But that could be the subject of another posting.  I will be posting at least once a week. I figured, if I work my neurons hard enough, they’d come up with something relevant to ALS families.  I can’t promise beautiful, edited prose, but just something useful to share.  And perhaps a haiku or two.
     This is the year of the snake. This is my year. It will be fun.
Mahalo!

Tuesday, December 20, 2011

It has been awhile since I and my family have been in touch with the ALS group, since Celeste's passing last December. This past Saturday, the 17th, we celebrated her by having a 1Yr Memorial at her favorite beach at Queens near the wall. From the early morning hours to the wee hours of the late evening we celebrated her life. The highlight of the day was the scattering of her ashes. With family and friends on surfboards, outrigger canoes, and a fishing boat, we headed out to share Celeste with the power and beauty of the ocean and the beauty of that day; it was a humbling experience to witness the coming together to celebrate Celeste. I've included a link to a video I made of the scattering of her ashes, enjoy and we will be more in touch with all of you.

http://vimeo.com/user9707108/celeste-1yr-memorial