The Friday before Memorial Day, I drove to this quaint, orchid shop in Kahaluu, past the elementary school into this unassuming driveway where a small, barn-like shed with galvanized iron sheets for walls, houses a busy work arrangement of tables and chairs topped by all manner of workshop paraphernalia. A tall, lean, elderly lady with an envy-producing, ramrod-straight back, charmingly welcomes me with a smile. She knows what I came for – the 300+ purple dendrobium orchids that I will have to string together in groups of 10 to facilitate the tying of leis during our ceremony that afternoon. We chat as she bundles my order and sheepishly pushes a newspaper-wrapped bouquet of white dendro sprays into my hands. “Extras for your table,” she says. Such an aww moment, and I add more profuse thanks for her trouble. We pledge to see each other again next year. God willing, we both say.

PNAH nurses (President) Cielito Matias-Schwartz and her mom, Edel Matias, arrived to join the event.

Arriving home my daughter and I quickly dig in to the task of bunching the orchids in tens. Before long, the car is packed with a folding table, a rattan basket of what-have-you’s, the accumulation of signs that are showing their annual use and age, my potluck dishes, and the dog. And, oh yes, the orchids.

Sign-wavers line up on Beretania in front of the capitol to thank rush hour commuters for celebrating May as ALS Awareness and Families Appreciation Month.

Arriving at 4pm in front of the State Capitol, I see there is already a bunch of new faces massing under Fr. Damien’s statue. My granddaughter and I unload the car under the flagpole, and I leave to park the car on the Kinau Hale parking lot across the street. Arriving back at the base of the statue, I gather that people have already picked up the sign of their choice. At 4:30 pm, we line up at the Beretania side of the Capitol to wave our thanks to the rush hour commuters for helping us celebrate May as ALS Awareness Month.

John Repczynski, a pALS since 2013, joins the sign-wavers.

My granddaughter, Tennille, and our furbaby, Tofu, join in the sign-waving line.

This year, we gathered to remember the 322 souls in Hawaii who have passed since 1998, when MDA-Hawaii first started tracking mortality data. When MDA-Hawaii office folded before the pandemic, ALSA-Golden West office in Hawaii took on the responsibility. Since ALS is such a sneaky illness, there must be more deaths than we know as our figure does not include veterans unless they are registered with ALSA. There are 21 new cases yearly in Hawaii; but this year, we have 24 deaths. It appears that from year to year, the deaths are only replaced by the newly diagnosed, a trend that assures there is no end to suffering and death by ALS.

Kumu Kathryn Mahealani Wong chanted an o’li to help set the solemn and caring mood for the “Lei of Remembrance” memorial ceremony.

Quickly the half hour of waving passes and we retreat to the courtyard to assemble our semi-circle with the table holding our orchids, and the empty wheelchair standing guard next to it. AnnMarie Ingram and Mona Fuimaono are our lei-stringers today with Sandy Repczynski and Rex Like alternately reading the names of the dead.

Sandy Repczynski reads the names while Mona Fuimaono and AnnMarie Ingram string the leis assisted by Kumu Wong.

I begin by welcoming our large group, especially the Nishi family which easily composed half the audience, and our chanter, Kumu Kathy Mahealani Wong. Kumu Mahea Wong opens our ceremony recalling the majesty of the Koolaus behind us and the eternal watchfulness of Providence. The reading of the names follows with members of the audience taking turns to pick a string of flowers which the stringers would then take and join with the others to form a complete lei. All in all, about five leis were put together and adorn the empty wheelchair. When all the names are read, John Repczynski reads the Closing and Rededication prayer after thanking everyone whose job it is and who volunteers to help with ALS families. We all proceed to Fr. Damien’s statue where Rex and Mac Negre use MacGyver-ed hooks made of pipes to reach the lei over Fr. Damien’s hat. Then, we pose for a group photo.

Cielito Matias-Schwartz hands a string of lei to AnnMarie.

The day ends with a potluck, where we again feel lucky we are still on earth enjoying the blessings of life. We share a simple meal while updating ourselves with what’s new in our respective horizons.

Rex Like and MacHoover Negre strive to put lei over Fr. Damien’s statue.

Until May, 2024, we have the year to reflect, act, and be grateful for all the goodness our ALS community receives.

Part of the crowd that attended the ceremony stay behind to take the annual photo after with Fr. Damien’s statue.