As we were adjourning from last Tuesday’s Regular Monthly BOD Meeting, Ronaele Whittington, brought up Violet Jones-Medusky. “Didn’t Vi pass away in late March?” Ronaele mused. Honestly, I can’t remember – I have been in many funerals of friends who have passed with ALS in the almost 40 years I’ve been involved with ALS in Hawaii. As memorable as Vi was – and should be in matters ALS in Hawaii – there have been just too many deaths to cram in an aging brain like mine. A cursory glance at ALS statistics in Hawaii shows that there is almost one death for every new case annually. Carrying the logic further: if ALS continues its present run and remains without a cure, we will have a constant 71 people with ALS in the state. With currently 20% of pALS expected to live beyond 5 years, there will always be at least 14 who will need specialty care at home or in community settings.
In May 2004, Vi, the mother of pro surfers: Mikala, Daniel, and Malia Jones, was diagnosed with ALS. To a longtime surfer and triathlete, the diagnosis was devastating. However, despite the disabling effects on her body, her heart and spirit remained defiant. During seven years living with ALS, Vi relentlessly involved herself in Hawaii’s ALS community, raising awareness and funds for ALS programs. Sadly, in 2011, Vi passed due to ALS-related circumstances. To help the then-loosely organized ALS core group of volunteers to continue their work of assisting pALS, Vi bequeathed $10,000 from her estate.
Not long after she was diagnosed, Vi, her husband Jan, and Daniel’s girlfriend (Natalie) started attending the MDA- sponsored ALS Support Group Meetings held every second Tuesday of the month at the Queen’s Conference Center. As one of the active support group members, I began to visit her on an intermittent basis at her beautiful home high up in the Tantalus ridge. We had a few things in common: our Filipino heritage, our being nurses, and our bottomless energy coupled with the compassionate understanding of what pALS and their families are subjected to daily. It didn’t take long for both of us to discover one more thing in common: we both understood the need for an ALS Residence for our pALS.
From this common vision, we started talking about how an ALS Hale would look like, beginning on where it would be located. One day, she excitedly called to say she found a perfect place up in Tantalus. I was somewhat skeptical about what she said. My few forays up Tantalus made me doubt that there could be such a perfect place in the mountain. I thought an ideal place for a Hale would be flat land – lots of it – preferably within healing sight and sound of the ocean. But that was just me, and because I didn’t have the heart to dampen her excitement, I kept my opinion to myself. Even then, I had recognized the need to take what ever we could get, including a not-so-ideal location.
One day in the summer of 2010, I came across a news item announcing the opening of the first ALS Residence in the country in Chelsea, Massachusetts. It was my turn to excitedly call Vi to tell her about it. Jan and I organized a conference call. A few days after, the three of us talked with Barry Berman, the CEO of the Chelsea Jewish Foundation which provided the space for the new facility called Steve Saling ALS Residence. We told Barry of our budding plans of establishing one on Oahu. He, in turn, shared their success story and encouraged us to continue working on our dream.
Today, I needed to go back to the website I started way back when, http://hawaiials.blogspot.com/2009/, to document some of the memorable events of that particular era of ALS care in Hawaii. I needed to be reminded of a different time with different characters. Our issues then were more up close and personal: Britt was still alive and I was still his full-time caregiver. Reviewing the posts brought back memories of a younger ALS community grassroots movement confronting the challenges of living ALS daily. On site, Vi and the many fundraising events she led were detailed in pictures and prose.
This day, a dozen years after she passed away, we miss her presence. I personally miss her counsel, her access to much knowledge and vast network, and her indomitable spirit. I have no doubt she would been a formidable force and a powerful advocate in our local movement towards a Hawaii ALS Residence. I still call on her spirit and continue to thank her for her foresight, inspiration, and generosity.
Aloha, Vi! You left us too early. Please continue to look down favorably on our movement and guide our steps.