Tradition- that’s what assures that important things are given due prominence and serve to ensure continuity. Every year, May has always been celebrated as ALS Awareness Month. Here in Hawaii Nei, we don’t only believe that we need to be aware of the concerns of our ALS community, we also need to recognize the enormous responsibility families carry on by living with ALS daily! For the first time since 2019, we trekked to the Capitol to meet with our other friends in the community to witness Governor Josh Green, who has been working with ALSFH since 2017 for an ALS Hale in Hawaii. He is going to proclaim “May, 2023 as ALS Awareness and Families Appreciation Month” and sign the document.
While waiting for our appointed time of 12:00 pm, we share two kinds of lumpia (shanghai eggrolls and turon, the banana variety) and share stories with friends we haven’t seen for a while. The executive floor of the Capitol sports new picnic tables which were perfect for the wait time. Our company this year is bolstered by members of the Philippine Nurses Association of Hawaii and the new members of the ALSFH Board of Directors, Melody Calisay and Nieva Elizaga.
Soon, members of the Governor’s protocol staff, Mona Maehara and Keala Patterson, smilingly led us to the Ceremony Room, a few minutes earlier than our appointed time so we could have more than the fifteen minutes we were allowed to spend with the Governor today.
Entering the warm but simply decorated Ceremony Room – its entirely koa wood-paneled walls and comfortable chairs arranged facing the large beautiful, crescent-shaped desk in front of the State Seal – never ceases to make me feel awe and community pride. I easily get the feeling that as I am entering the Hall of Power, it also exudes benevolence, goodwill, and caring.
As Governor Joshua Green enters the room, he is immediately greeted with a lei by Katherine O’Connor. He makes his way to the desk, sits, and starts a conversation which acknowledges his intimate relationship with ALS (he had an aunt pass away with the illness) and his part in the years of talking with the late Jerry Correa of St. Francis Healthcare Systems with regards partnering with ALSFH to set up an ALS Residence in the vast Liliha campus of St. Francis.
Not a pin drop is heard as we listened to him, our hearts swelling with pride and hope as the man who holds the highest political power in the state highlights what he hopes to achieve with the group in the near future. His staff of strong, young, bright, and wholesome people are watchful, carefully orchestrating this ceremony so we are able to smoothly achieve our goals.
While Governor Green prepares to sign the document, we gather around the desk behind him to witness his signing as camera upon camera clicks to record this momentous event. When all is said and done, pALS John Repczynski, long an active voice in advocating for all things ALS, reads his response, outlining briefly the needs of our community so that the effects of the illness on individuals and families are mitigated/ resolved. John, a multi-Emmy awarded TV cameraman before his illness, was diagnosed in 2013. He represents the 20% of pALS who live beyond the 3-5 years normally given a newly diagnosed pALS – the target population of ALSFH.
Having accomplished our goal with this meeting, we packed up and headed home feeling we have done something good by organizing this event year after year since 2014. This is the first face to face Proclamation Day since 2019.