Still Running The Good Race
A beloved member of Hawaii’s running community, Vi Jones-Medusky refuses to let Lou Gehrig’s disease slow her down, thanks to friends and family including (from left) Natalie Fonda,Glizza Asejo and daughter Malia Jones Stedman. But in May 2004 she was diagnosed with amyotrophic lateral sclerosis (ALS) and can no longer run, or even walk.
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shopping together. We’ve done everything together, so for me that’s why it’s kind of hard (to see my mom in a wheelchair).”
Jones Stedman says this experience has taught her the importance of family and to appreciate your time with one another.
“This disease, I think it slows you down, but it really brings out what’s important, whether it’s with your life or your family in general,” she says. “My mom has had this disease for five years, but it’s really pulled us all back and just getting to spend that quality time.
“Our family is very active. We travel; everybody is a pro surfer. I grew up in Hawaii, but I’ve been traveling as a model and surfer for the last 10 years. We could be living all over the globe, but just loving my mom so much and just wanting to spend that quality time with her, we’re enjoying every moment. Maybe that’s not surfing together, but we’re still swimming together and living life together as family.”
Yes, you read that right, they still swim together. One day a week, friends and family meet Jones-Medusky at Kaimana Beach for Swim Day. They help her into the water so she can exercise her range of motion and they massage her body.
Recaps of these fun weekly excursions are often posted on her blog (www.violetsweb.blogspot.com), with the help of Fonda, who has been with Daniel for seven years.
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Fonda, 24, does the typing for the blog, however, technology today allows Jones-Medusky, who can no longer use her hands, to work on the computer, including e-mail.
And “thank goodness for Skype,” she says, which allows her to communicate via a webcam with Mikala who lives in Bali with wife Emma and their 5-year-old daughter Isabella. The couple is expecting another daughter in November.
“Vi makes my life so much happier, and being able to help her and see her smile, it totally enriches my life,” says Fonda, who was born in San Francisco and raised in Kaaawa. “Vi has taught me to take things day by day, and she’s always saying we should find one thing that’s beautiful in each day. Also, if you listen to Vi talk to anyone, she always says I love you. That’s the last thing she says, so it’s just remembering to tell each person that is important in your life that you love them.”
Another important person in Jones-Medusky’s life is Asejo, who for the past year and eight months has been her hands and legs.
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Asejo first met “Aunty Vi” through her cousins who did yardwork at her house. She also was a classmate of Daniel’s at Hawaiian Mission Academy.
“I used to always see her running in Ala Moana Park when me and my friends would be driving to go surfing,” says Asejo. “You would always see this lady with her sports bra and she would have her six-pack (of abs), and I would say there’s Daniel’s mom, the ripped lady.”
Then, just when Asejo was thinking about leaving her job at a dental office, Jones-Medusky was looking for someone to assist her with the things she could no longer do on her own because of ALS. The two instantly bonded.
“ALS is a crappy disease where you get stuck in your own body and you can’t move, but your mind is all there,” says Asejo. “The hardest thing about taking care of Aunty Vi is seeing everything go slowly. But she has taught me to stay positive.
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“I’ve also learned that no matter what, and I know it sounds cliche to say, but you really need to just appreciate your everyday life. Being able to go to the bathroom by yourself and being able to walk. It sucks to not be able to do the little things like take hair off your face.”
Jones-Medusky was born in Hilo, raised on Oahu and graduated from Hawaiian Mission Academy in 1970. Since 2007, she’s been on a “permanent vacation” from her 20-year career as a nurse.
“The thing about this disease, you have to have a lot of patience,” says Jones-Medusky. “Before ALS I think I was a patient person, but you need to be even more patient.
“I think I’ve done everything I wanted. The only thing I didn’t do is run a 100-miler, which I didn’t think I had in me. And my whole life, one of my goals is to encourage more people to get out there and exercise and enjoy what God has created for us.
“I am just so thankful for every one of my family members and all my friends. I can’t say enough good things about them. They’re my angels and my wings that lift me up.”
To register for Vi’s Adventure Trek and Run call 593-4454 or e-mail .(JavaScript must be enabled to view this email address). Entry fee is $20 and includes a T-shirt featuring original artwork by late local artist Peggy Chun, who lived with ALS from 2002 to 2008. The run starts at 8 a.m. and is limited to 280 participants. Entry deadline is Aug. 20.
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Thank you Ms. Ting for this great article. Violet is an inspiration to everyone for appreciating our lives and making the most of our situations no matter what. Mahalo again for writing about Vi, a remarkably courageous person.
Posted by Lorenn Walker on 08/05 at 09:12 PM