Award-winning writer, certified health advocate, creator of the blog An Empowered Spirit
Welcome to “7 Questions with A Couple,” a monthly series that includes quick conversations with a variety of experts and influencers from throughout the MS community. We are beyond thrilled to kick off the new year with Cathy Chester. Cathy is a tireless voice who inspires others through her efforts as an author, advocate and creator of the award-winning blog AnEmpoweredSpirit.com.
1. When you were diagnosed with Multiple Sclerosis in 1986, there were no disease-modifying therapies for MS. What gave you hope then and what keeps you hopeful for further medical advancements today?
Since there weren’t any FDA approved medications and also no internet, information about MS was hard to find. I couldn’t grasp what the disease was and wasn’t because I didn’t know enough about it to make any informed judgments. It took months of determination and asking a million questions to find out what I needed to know. Any hope I mustered wasn’t helped along by the bleak picture doctors painted about my future. I only heard quit your job, give up your apartment, move home with your parents, and call if you need more steroids. Hope? I didn’t know enough to have any.
Thank goodness I was born with a positive attitude, had a strong support system of loyal friends and family, and created a medical team I knew I could depend on. Hope finally arrived on my doorstep when I realized I’d always float because of these three critical things.
Today I’m more than hopeful that new and better therapies will be discovered based on the competitive marketplace for MS drugs and also the dedication of countless scientists and researchers who continue to reveal new information about MS.
2. How did you not let the fears related to MS hold you back from moving forward as a spouse and a mother?
I kept my eye on the prize of how I always dreamed my life to be, and that included being a wife and mother. It’s what I always wanted. I think fear shows us what we need to overcome, and admittedly my dream became more daunting when it included living with an unpredictable disease. But if you’re lucky like I’ve been to find the perfect life partner who’ll support and love you unconditionally then fear is easier to face. Fear has no room at this inn. When it does come knocking, which it inevitably does, my husband and son help me face it head-on. My inner strength and resilience combined with their love and support help me kick fear to the curb. As I age fear comes knocking more often than it used to because my MS changes incrementally, yet we continue to be determined to move forward every day to live the best life we possibly can.
3. What sparked your confidence to share your story and use your voice to help others live with MS?
My story of diagnosis begins in 1986 and soon after I started writing articles for local newspapers about living with MS. I wasn’t as open about the emotional side of MS as I am now but I knew from the beginning there was a great need to educate others about MS. I also led a local support group to share my story and to help others share theirs. As the years passed my voice became stronger when the internet and social media came along and I created my award-winning blog, AnEmpoweredSpirit.com, as a way to use my patient voice in a stronger and more meaningful way. By that time I received my certification in patient advocacy which opened more doors to advocate for others. I knew that my experiences and expertise would help others in the MS community (and their loved ones) to find their own voices for what they needed and deserved, and that alone made me feel like a million dollars!
My mission in life is to help as many people in the community as possible, however, and wherever I can. The sky is the limit on the number of ways I can inspire, educate, and empower them through my work, and now my life is an open book! I find when I break myself totally open is exactly when others say to themselves, “Me too! Hey, I’m not alone!”
4. Congratulations on receiving the WEGO Health Lifetime Achievement Award! Such a huge honor! What does such a recognition mean to you?
Thank you. I’m thrilled about this incredible honor and humbled by such a prestigious award. Being recognized by WEGO tells me I’ve been doing something right and boy, does that feel incredible. After over three decades of advocating it means that my work has meant something to others which only makes me more determined to continue doing the same for the rest of my days. Being an advocate isn’t what I do, it’s who I am.
5. What is a perfect day in the life of Cathy Chester?
I was just telling my husband that I’d like the gift of one perfect day where I’d feel completely well. I can’t remember what that feels like. No pain, no weakness, no cognitive fogginess, no fatigue. I’d love to wake up one morning and have a full, productive day without the need for a nap, where I could run or ride a bike or take a beautiful restorative walk in nature for miles and miles. Hot or cold temperatures wouldn’t affect me, there’d be no pills to take or long infusions to endure. No bowel and bladder issues. No anxiety over symptoms. And no one would have to spend one second being concerned about my health, including me. What a beautiful dream.
6. You’ve had MS for over three decades. What are the three top pieces of advice you’d give to a person who was recently diagnosed?
- Trust your instincts to be your guide. If you feel in your gut something is wrong (as in your body is telling your something is awry), or that even something is right for you (let’s say a new treatment you’re interested in), trust yourself. It took me a long time to realize how important this was. Along with being fully informed, you alone should be the one to make any final decisions.
- Nurture your relationships and find people you can trust. As you grow older, you’ll find this becomes even more important.
- Create a medical team you’re comfortable with. They should be good listeners, proactive in your treatment, knowledgeable about current research, and responsive to your questions. If they’re not, it’s time to find someone else.
7. If they made a movie about your life, what actress would you want to play Cathy Chester? Why?
Meryl Streep, of course! Because she’s the best actress that ever lived (aside from Katherine Hepburn.) Don’t you think Meryl could play a girl from New Jersey, which she is?