by Mike Lisagor and Shannon Dowling
At 43 years old, Shannon Dowling is at the statistical middle of people who have multiple sclerosis (MS). She lives on Bainbridge Island with her husband Ted and their young son Wheeler. She is the Operations Manager of Bainbridge Performing Arts and runs Bainbridge Island Signing Academy where she is an Advanced Signing Time instructor, private voice teacher, theatre teacher, and music director. The captain of Team Star Wars for the April 13 Bainbridge Island Walk MS, Dowling agreed to share her experiences with MS in the hope it would help more people understand the significant impact this illness has on individuals and their families.
What was your initial reaction to being diagnosed with MS?
My initial reaction to being diagnosed with MS in 2009 was denial. My father had just passed away and my husband Ted, our three-year old son, and I had just moved to Bainbridge Island after placing my mother in assisted living for dementia care. So I just put the diagnosis completely out of my head.
A year later, I went to the neurologist for persistent headaches and was diagnosed with MS again. The doctor suggested that I get a second opinion, and that’s when I realized this was my second opinion. This time, my “initial reaction” was relief. I had barely been able to keep up with my life, and having an explanation for it was just what I needed to learn how to start focusing and prioritizing.
How has MS impacted your life?
Having been so relieved by my diagnosis and knowing that an officer of the Fortune 500 company I worked for at the time also had MS, I disclosed the information to my supervisors and asked for a change in my current assignment because my doctor said the number-one thing I needed to do was to reduce stress in my life. During my ten-year career there, I had moved into a management position based on my performance and passion for the company culture. Yet, for the first time, I received a negative performance review and was told I needed to prove my loyalty to the company before any accommodations would be made. So I ultimately left the company.
One of the gifts that I have received as a result of my diagnosis is the importance of prioritizing my daily activities. When I was diagnosed in 2010, I was walking with a cane at home (I was not emotionally ready to use it at work) and was falling down on a regular basis. My first goal was to dance in a show again while I still could.
I worked hard to prepare my body and danced in Chicago at Bainbridge Performing Arts in May of 2011 (without disclosing my MS). I then danced in Cats and sang the role of Hansel in the opera Hansel and Gretel. Still, I learned I needed to be careful about how much I take on because during the rehearsal process for the opera I had my first relapse. It was a tough reminder of how much MS has impacted my life.
I am not a fan of the three-times-a-week injections and their side effects, but once I saw the data on mobility in people who choose medication vs. people who don’t, I decided that I needed to do everything I could to keep moving. My symptoms have made travel particularly difficult, so doing things like visiting my mom and taking my son on day trips have become very difficult to manage.
But the most frustrating part about the disease is that people have a difficult time understanding what it is like for a person with MS—that every day I have to choose what I can and can’t do for myself and my family. This is why it is so important to find a cure for this illness.
How has your having MS affected your family and friends?
Fortunately, I am blessed to have an amazing group of family and friends. The largest impact it has had so far has certainly been on my husband. Through the unpredictable symptoms and my relapse, he has quietly stepped in to take care of the house, go to the grocery store, and keep up with our son’s busy schedule. He comforts me when I feel down and celebrates when I am feeling well. He also encourages me to rest when he sees me overdoing it. We also have amazing support from his loving parents.
My son is incredible, taking care of me in his sweet six-year-old way when I can’t keep going. It breaks my heart when I don’t have the energy to play with him, especially when he shows me that he understands that I physically can’t do it by choosing activities that we can do while I lie down.
My friends see me less now that I have to limit my activities, but the true ones are always there for me. They help me continue to move forward with my life as a person living with MS, not as a person defined by it. And I now work multiple jobs and have support from my employer and clients. I feel very fortunate!
How did you get involved with the National MS Society and the walk?
With my final diagnosis in 2010, I signed up for the walk with a small group of people I had told about my diagnosis. I also started using National MS Society resources to do things like find out about research studies that I could participate in. Last year, I could barely do the walk, but this year I have a goal of at least 20 walkers on my team and hope to raise $5,000 for the National MS Society.
At first my team was affiliated with my company, Bainbridge Island Signing Academy. But now the effort has blossomed into partnerships with both Island Fitness and Bainbridge Performing Arts as Team Star Wars. Who doesn’t want to see an entire team of people dressed as Star Wars characters having light saber battles on the walk? You can join our team at http://main.nationalmssociety.org/goto/TeamStarWars.
The Walk MS helps me remember that I am not alone, and that there is hope. Prior to my diagnosis, I thought all people with MS were in a wheelchair. While this is still the fate for too many, it is the work of the National MS society that keeps me positive that eventually there will be “a world free of MS.”
You can join the over 80 people on the island with MS and their friends and families at the seventh annual 2013 Walk MS, Saturday, April 13, at Bainbridge High School. Registration begins at 9:00 a.m., the program starts at 9:30 a.m., and the walk is at 10:00. This relaxing kid-friendly three-mile walk through downtown Winslow features free Pegasus coffee and BonBon chocolates, a barbecue lunch, Island Fitness massages, face painting, and a post walk concert by the Hep Replacements. The other Kitsap County walk location is Klahowya Secondary School, 7607 NW Newberry Hill Rd, Silverdale, WA.
To make a donation or register as an individual, join or form a team, or volunteer, go to www.walkMSnorthwest.org (select Team Info on the left for existing teams). You can also call 800-344-4867, selecting option 2. And you can e-mail Jessica.Kurtz@nmss.org. Registration will also be conducted at the walk.
Featured image courtesy of Shannon Dowling. R2D2 photo by Fiona Dalwood.
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