Jeanie Waterbury: “Finding the way when faced with ALS”
Lance is from of the Oregon Chapter of the ALS Association
On a crisp sunny day in February, the staff of the Tualatin Hills Nature Park gathered to plant a Western Hemlock. As they turned the soil on the grassy slope, they paused for a few words. Normally planting a single tree does not take the attention of the entire park staff. But this day was different. This tree was different. It was being planted to honor the work and spirit of Jeanie Waterbury, a longtime park ranger at the nature park who was diagnosed with ALS in August 2003.
Jeanie Waterbury migrated to Oregon with her husband Tom in 1978 from upstate New York. They now live in Beaverton, Ore., and have two sons, Brian, 21, and Jason, 19. Contributing to the community has always been high on Jeanie’s priority list. In her work at Tualatin Hills Nature Park, Jeanie has educated thousands of children about nature and how important it is to keep a balance in the natural ecosystem. Coping with challenges has been the forte of Jeanie’s professional life. “I loved teaching and watching the troubled kids who didn’t do too well in class get excited by nature in a real-life setting.” Being positive is second nature to Jeanie.
In the spring of 2003, Jeanie’s greatest challenge came when she noticed it was becoming hard to say certain words. This problem was soon followed by weakness in her arms. Seeking answers, Jeanie embarked on a quest for information. After five months and six doctors, Jeanie learned that she had an alphabet disease. “At first I thought it was MS. I did not know what ALS was. As I learned more, I was in shock,” Jeanie says. “But at some point, we decided to move forward and live life. It’s not that it’s not hard. But this disease makes you realize how limited time is. Do it now. You don’t know what life will bring.” With that idea in mind, Jeanie and Tom took a long trip to visit family and see their favorite spots in upstate New York where they grew up, met and fell in love.
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The fact that Jeanie has a positive attitude and is proactive in dealing with ALS does not surprise her husband Tom. “Jeanie has always been the organizer and talker in our family. If it’s possible to see it this way, ALS has brought us closer together,” Tom says. “Our family has rallied around us. Just about every week or weekend, some family member is here to visit and support us.” Jeanie’s three sisters and all her extended family from across the United States have made it a point to visit, and everyone cherishes their time with Jeanie. Since her speech has slowed, Tom frequently helps others understand what Jeanie is saying. With a laugh, Jeanie says, “Tom is finally getting the last word in!”
As her symptoms of ALS increase, Jeanie needs more support to accomplish day-to-day tasks. Not surprisingly, Jeanie has been surrounded by love. As a long-time member of the Southminster Presbyterian Church, Jeanie inspired a group of 18 church members to create a “Share The Care™ ” support group to care for Jeanie’s needs and provide support for Tom and the entire family. This group, coordinated by Jeanie’s good friend Barbara Walker, offers caregiving and companionship to Jeanie on a daily basis
This support has meant the world to the Waterburys. “Without this help, I would not be able to continue working to provide health insurance for Jeanie. It is good to know everyone loves Jeanie and is so supportive. I can’t be more appreciative of Barbara, our family and the church,” Tom says.
For Jeanie, the experience of receiving love and care from her church group has meant even more. “I like to be in control,” Jeanie says. “But it has been rewarding to have other people help me with this disease. It has been humbling at times, but people have been thankful to me for the opportunity to help. I feel like Sally Field in her Oscar speech … ‘You like me. You really like me.’ It’s an amazing gift.”
When asked what she might share with others about her experience with ALS, Jeanie says, “When people ask, Why me? Why do I have ALS? I say, maybe it’s not about me. Maybe it’s about the people around me. It’s about what this experience brings out in family and friends. It’s about what they think about and what they do in life. I am humbled by the love people have given me since ALS entered my life.”
Jeanie and Tom are active members of the Portland ALS Support group sponsored by the ALS Association and the OHSU ALS Center. The Waterburys have utilized the services and supports of the ALS Association to cope with life with ALS. The ALS Association staff has been inspired by the positive and proactive approach that Jeanie, Tom, their family and friends have taken in their journey with ALS. We wish them well.