This update includes a big mahalo to lunch buddies and dinner providers, along with a tech update, and some glimpses of my work at Hawai‘i Public Radio.
Meal support & lunch buddies
As some of you know, Jennifer and I have been using the ianacare app, which allows friends to help with dinner deliveries a couple of times a week and for friends to volunteer as my lunch buddy when I’m having lunch at the office.
Since I have lost most of the use of my hands, having friends assist in feeding me lunch has become extremely valuable. The experience is an intimate one, and it not only serves as a way for friends to help, but also as a way for me to connect with friends while talking story.
Meal deliveries from friends, which includes a mix of home-cooked meals, food picked-up from local restaurants, or gifted DoorDash deliveries have relieved some of the cooking burdens from Jennifer. My care now takes up the biggest portion of her time each week, followed by running her business and her own self-care.
We are extremely grateful for all the friends and family members who have helped us with meal deliveries or as lunch buddies. If you’re interested in helping, even if you’re not on the island, check out the help page to learn how you can help from a distance.
A gifted support squad
Traveling in my power wheelchair to get my hair cut has become a increasingly difficult since the sidewalks in the area are very rough, which takes a toll on my body. It just so happens to be that my wonderful administrative assistant, Mia, does hair and make up for our local opera company and various theater groups, and volunteered to cut my hair at my home. She did a great job giving me wonderful haircut!
In our last update, I shared the news that I’d receive my EyeTech eye gaze machine. Since then, a digital copy of my voice—banked back in July of 2021 thanks to a grant from Team Gleason—has been downloaded to my machine.
While I have not lost my voice, my voice does get tired when I use voice-to-text technology for all my written communications. My eye gaze machine allows me to connect to the internet, work from home more effectively, face time with my family, and when necessary, will allow me to communicate using my very own synthesized voice.
Here’s what it sounds like:
I’m spending an hour here and there practicing because it takes a lot of getting used to using your eyes as your mouse navigating webpages and my voice communicator. I’ll soon become an expert!
Still at it!
As many of you know, I have spent a large portion of my career in public broadcasting. This week marks my seven year anniversary of joining the best public radio team in the country, Hawai‘i Public Radio! It’s been a great seven years of leading an awesome team, and together we have accomplished a great deal. While I continue to deal with my ALS diagnosis, it does not impede my ability to continue to lead this wonderful team and station. We still have a lot of work to do, and I look forward to continuing to advance our mission.
HPR recently completed its spring membership campaign. Fundraising on the air is an activity I always loved to do. Unfortunately, I’m no longer able to fundraise on-air as much as I used to since I don’t have the energy to be live on the air for more than one hour at a time. It also has an impact on my voice quality. Regardless, the few hours here and there I was able to be on the air raising money for HPR gave me great joy and happiness, and we had a lot of fun doing it, too!
In April, HPR was honored as one of the Best Places to Work in Hawai‘i. Every day I am blown away by the work and passion of our team. When it comes to delivering relevant local news and locally curated music to our community. Their passion continues to fuel my passion to continue working and leading our stations.
Back in January–during my brother Tuly’s visit, I was also able to welcome close to 700 guests to a live taping of The Splendid Table at Hawai‘i Theatre. I don’t get out very much anymore, but being back on the stage in front of so many of our radio members was energizing, and I felt back in my element, even if it was just for a few minutes.
And finally, Jennifer and I are trying to get a ceiling track installed in our living room to make transfers easier and safer for the two of us. We’ll share more details on this in a separate post but we just received the initial estimate which is just under $17,000 for the equipment and installation combined.
We have increased our GoFundMe campaign goal to help with this installation and other ongoing health-related costs. We’re grateful for everyone who has contributed so far to this fundraising campaign in support of my journey. More information about how we have invested your dollars so far, along with what’s around the corner was added to the GoFundMe campaign page in April.
Jennifer and I continue to be blown away by your love, support, and friendship. It means the world to us. Thank you!