After college in Michigan, where I was born and raised, I came to Hawaii at the invitation of my oldest sister and brother-in-law. They apprenticed me in their moving business. I fell in love with Hawaii and did not miss the cold mainland winters.
After I learned the ropes I started my own company, moving household furniture, with a partner. People were either upgrading or downsizing and needed a mover, even the Friends of the Library for their annual book sale, so it kept us busy.
Years later I started having problems with my hands and legs. I thought it was arthritis but the doctors couldn’t find anything wrong. It continued to get worse and I couldn’t do the heavy lifting anymore. Eventually I couldn’t work at all and my business folded. I put my belongings in storage, pawned things and depleted my savings but in the end I lost my apartment, vehicles and the lockers went to storage auctions.
I was too embarrassed to let my family know. I went from sleeping on friends couches to living in my van to living homeless in the park. Some of my friends thought I had MS but the doctors still couldn’t figure anything out.
My sister found me and helped me get into a care home. We also applied for Medicaid and eventually got a diagnosis of Amyotrophic Lateral Sclerosis. None of us knew much about ALS. When I got weaker I was put in the Wahiawa Long Term Care facility. After a bout of pneumonia I had to be put on a trach and ventilator to save my life. I had to be moved to Convalescent Center of Hawaii, one of the few places that provided ventilator care. That was 14 years ago.
It’s difficult logistically for family on the mainland to visit and difficult for my family and friends to see me like this. Everyone wants to remember me the way I use to be. Now I can no longer communicate, except to raise my eyebrows or smile for “yes”. I can no longer eat or drink and am on a feeding tube. I can no longer breathe on my own and a machine does that for me. I am a fully paralyzed quadriplegic and dependent on others for my total care.
People wonder why I don’t just choose to end it all. Maybe fear, or maybe my faith wondering what God has in store. My pastor, Charlie Gumm, visits me weekly and sometimes other church members drop by. And my sister is always surprising me with the unexpected. Like a 32” flat screen TV and permission to mount it on the wall, a Chicago Bears Championship t-shirt, a visit from two NBA Legends, an NFL football signed by Charles Tillman, a Marilyn Monroe impersonator for my 50th birthday, a visit from 5-0 actor Dennis Chun, Lost actress Arlene Newman-Van Asperen, and hospital gowns and pillow cases made out of sports material. My big sister has stuck with me through thick and thin and visits me daily. She advocates for my care and I owe her my life. She’s the best sister ever!