It’s important that fellow islanders walk by her side | Guest Column | March 26
March 26, 2010 · Updated 2:00 PM
Janet “Jani” Levy Pauli is one of more than 70 Bainbridge Island residents with multiple sclerosis (MS). She was diagnosed in 2000 and is currently involved in the annual Walk MS fund raiser on Bainbridge Island as an organizer and team captain of Rock Walkers.
She agreed to share her experience with this difficult disease with Michael Lisagor, who edited her responses to his questions as follows:
Q: What was your initial reaction when you were diagnosed with MS?
A: By the time I got diagnosed (it took about nine months), I was both scared and relieved. It was hard to get the image of a wheelchair out of my mind. But I also wanted to do something – to be proactive. For me, the unknown is much scarier than knowing.
Q: How has MS impacted your life?
A: MS teaches you very quickly that life is unpredictable. It is my nature to be in control, juggling lots of commitments. Now, I am at peace with the ups and downs of my MS symptoms – that everything I plan may not happen and, for the most part, I’m OK with that. I no longer feel like I’m letting anyone down when I say no. I don’t have to try to be Superwoman! And, I am much more comfortable asking for help.
I think MS has made my marriage stronger. That may sound odd to people who don’t deal with a chronic illness. My husband, Bill, is my rock and I couldn’t live my life the way I do without him.
Q: How did you get involved with the MS Society?
A: Several years before I was diagnosed, my husband and I were volunteering at Helpline House and I was shocked to learn how the young women with MS were affected. Their marriages broke up and they didn’t have the financial means to get the medicines they needed. That was when the counselors at Helpline told me about the MS Society. Doing the MS walk was a way to do something with our sons to help others.
Q: What is the biggest benefit you have received from the MS Society?
A: Knowledge, medicine and friends. I attended the first women’s event at IslandWood several years ago. I had never been with so many women who understand what it’s like to live with MS. It was empowering and inspirational and I have continued to meet amazing people by working on the Walk and going to MS Society events.
A: Why is having the Walk MS on Bainbridge Island so important?
A: I have lived here for over 30 years; this is my home. I want people in my community to understand this disease and to join in my efforts to help everyone with MS live a better life. I’m not afraid to ask for support and for people to see my vulnerabilities. It helps me to know my fellow islanders are literally walking by my side. It’s a couple of hours on a Saturday morning. I am hopeful that we can walk together to help others (and me!) live a better life with MS – and to create a world free of MS.
Q: How do you maintain hope?
A: By knowing the amazing work doctors and scientists are doing to better understand MS and to create medicine that will make our lives better. They may not cure MS, but they are learning how to slow it or even stop it. People have dedicated their lives to that goal. How can I not have hope?
Michael Lisagor and Jani Pauli are members of Bainbridge Island Outreach Task Force.
Take a Walk MS
On Saturday, April 10, registration at Bainbridge High School begins at 8:30 a.m., followed by the walk at 9:30. This is a kid-friendly, three-mile stroll through Winslow that includes: free Pegasus coffee; lunch cooked by B.I. Barbeque; Bon Bon chocolates; and Island Fitness massages. To register: www.walkMS northwest.org (select B.I. and then the team list on the left); call (800) 344-4867; or on-site on April 10, courtesy of COBI staff.