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Becoming an Advocate for Multiple Sclerosis in Midlife: Cathy’s Story

Published on 06/01/2015

Cathy Chester Profile Pic Social Media - Version 2 An early diagnosis of MS and the prospect of an empty nest propelled Cathy to her next act of writing and blogging about living with ability in spite of disability.

Tell us a little about your background…

I grew up in Northern New Jersey, the youngest of three children in a Mayberry-type town that was idyllic and a great place for kids to grow up. I graduated from Boston College with a Bachelor of Arts in English and a minor in Business.

I began my first job three weeks after graduation; it was a dream job in publishing, at McGraw-Hill Book Companies in New York City, as a secretary. I was promoted shortly thereafter to copywriter and then on to editor.

For better or worse, I left there to accept a higher paying job at a real estate company for a mogul who, at that time, rivaled Donald Trump.

Being single in Manhattan in the early 1980’s was a lot of fun, and the company treated us like gold with limousine rides home and entries into the hottest Broadway shows and clubs.

Cathy Chester's weddingIn 1988, I married the love of my life and my best friend, and in 1992 we had a beautiful and healthy son. We settled in Northern New Jersey. I decided to be a stay-at-home mom and loved every minute of it.

At the age of 28, I was diagnosed with Multiple Sclerosis. This was part of the reason I decided to stay home with my son. In order to raise my son the way I wanted to, I also needed to take care of myself and manage my disease.

 

Tell us more about MS. Are there common misconceptions? How has the treatment changed in the nearly 30 years you’ve had the disease?

MS is an autoimmune disease where the body’s own immune system attacks the myelin (covering of nerve fibers) in the central nervous system. This can affect the brain, spinal cord, or optic nerves (vision). It is not contagious and no ones dies from having MS. I was diagnosed with a spinal tap and an MRI. I am lucky that I got diagnosed right away. Some people have to wait years for a final diagnosis!

I’d like everyone to understand that people with MS are the same people they were the second before their diagnosis, so they deserve the same respect and dignity despite having a disability. We may not always look as if we have the disease; that is why it is sometimes called “an invisible illness.”

Our biggest complaint is usually fatigue but not everyone believes us because we “look so good.” So when we say we’re tired, imagine what it feels like when you have the flu. We are about 1000% more tired than that!

I tell newly diagnosed people they’re diagnosed at a better time than I was. There was no Internet or approved medications when I was diagnosed. I was told by the doctors to go home and rest—and if I had troubles call them and they’d give me steroids. Today, there are over 10 FDA-approved medications with more on the way. There are not only injectables like the one I take, but also infusions and orals. Pharmaceutical companies are crawling all over each other to compete for new drugs because they know there is big money out there.

There are also new companies popping up, going around big pharma and straight to the researchers to try to get these drugs on the market faster and for less money. And someone is always working on a cure. There is hope, but I do wish there were more drugs available to those who have MS far worse than me. The people whose “type” of MS will never get better. They are in walkers and wheelchairs. I pray for them every day. Every day there is more hope. My hope is for a cure in my lifetime.

The joy of our lives is our son, Jordan, born in 1992

The joy of our lives is our son, Jordan, born in 1992 – Cathy Chester

 

When did you start to think about making a change?

When my son was approaching his senior year of high school, I knew I had to carve something out for myself, something that combined my passion for paying it forward to others while creating a type of joy in my own workplace.

This idea had been brewing for a while. I knew I needed more in my life, something for the greater good to satisfy my desire to help others. So, at the age of 51, I signed up for a 7-month certificate program in patient advocacy. It was a grueling, wonderful, and eye-opening program. It covered patient care, healthcare laws, marketing yourself, real-life case studies, the importance of living wills and DNR’s (do not resuscitate), how to discuss difficult subjects with families, the importance of respect and dignity for the dying patients, follow-up care for the family, and much more…

I wanted to be certified to be able to help others navigate their healthcare. But after graduation, I realized that people wanted advocates with nursing degrees. I was crushed—for about five minutes. Then a bright light bulb went off that told me I could use my love of writing (which I had since I was a child) and marry it to health advocacy. And so I took my next step.

 

What is your next act?

I am a health advocate, with a focus on Multiple Sclerosis. Since 2012, I have been writing for several health websites (Multiple Sclerosis and Boomeon) in addition to my blog, An Empowered Spirit. I love being a blogger and creating a brand that represents who I truly am and helps me to leave my unique mark on the world. I write about ability, social good, animal rights, books and classic TV and films, and Broadway—those are my passions.

I am also proud to be a regular contributor to The Huffington Post and have appeared in their Impact, Post 50, Travel, Books, Third Metric, and Entertainment sections.

Cathy Chester At BAM (Bloggers at Midlife) in Nashville, Tennessee with blogger Helene Cohen Bludman (Books is Wonderful) and author Doreen Mcgettigan (Bristol Boyz Stomp, The Stranger in My Recliner).

At BAM (Bloggers at Midlife) in Nashville, Tennessee with blogger Helene Cohen Bludman (Books is Wonderful) and author Doreen Mcgettigan (Bristol Boyz Stomp, The Stranger in My Recliner).

 

What’s been your most popular post on your blog?

My son’s 21st birthday. When Jordan was born, my dad, a wine connoisseur, gave us a case of port for him—1992 was a great year for port—with a sign for our son saying “When you’re 21, open the first bottle and toast and think of your grandfather.” Dad never expected to be around! So we all toasted together with my parents and I wrote a post about it. It’s still my most popular post. And my favorite and most meaningful.

 

Why did you choose this next act?  

When I graduated from college, I did what I thought I was supposed to do. Following that path, I tuned out my instincts and never took chances in my professional life. I realize now that I was never really happy.

Of course, when I got MS, my career halted and I had to care of my physical needs first. I had to quit my job and give up my apartment to move back home. I couldn’t function very well after my diagnosis. I had trouble walking, my hands were very weak, and I was tired all the time. My family surrounded me in love. My then-boyfriend (now husband) ran to me and said, “We’ll get through this.” And when I told him he could leave with no questions asked, he stuck around—for 26 years now.

I believe there are silver linings in everything that happens, no matter how difficult they are. I see now that I learned to lean more on my spirituality and to listen more to what my heart was saying.

And so I began a new journey that led me to who I am today.

 the blogging community Midlife Boulevard from left to right, Jane Gassner, Sandra Sallin, Cathy Chester, Connie McLeod, Lisa Carpenter, Ruth Curran, Lois Alter Mark, Helene Bludman, Janie Eanus.

I was thrilled to finally meet a bunch of women in person who I’d only “met” online through the blogging community Midlife Boulevard. (l to r: Jane Gassner, Sandra Sallin, Cathy Chester, Connie McLeod, Lisa Carpenter, Ruth Curran, Lois Alter Mark, Helene Bludman, Janie Eanus.)

 

What challenges did you encounter? Who keeps you going?

Of course my biggest challenge is MS. I fight great fatigue and physical weakness every single day. I must rest a few hours each day, and, as a result, am not as productive as I’d like to be. It’s annoying, of course, but you deal with the hand you’re dealt the best way you possibly can.

At this point in my life, what I’m doing is what excites me. I’m learning something new every day and that keeps my brain elastic. I am curious by nature so being able to continue the learning process is thrilling for me.

The people who are closest to me have always been very supportive and excited about the work I do. They are my biggest fans!

 

What did you learn about yourself through this process?

Now that I’m in my fifties, I listen to my instincts more often. If something feels right I go for it; if not, I take a pass. And, as I write more, I’ve noticed that my old introverted self is suddenly pushing me out of my comfort zone to do new and exciting things.

Over the past two years, I’ve approached people I’ve respected for a long time but would never have approached for an interview. People like Alan and Arlene Alda, David McCullough, Valerie Harper and Steve Wozniak, to name a few. Here’s a Huff Post Live Interview I was in with Valerie Harper.

My writing brought out my voice, something I quashed for many years because I wasn’t as loud as others and at times very shy. I felt I wasn’t being “heard” while growing up, and I thought my opinions didn’t matter.

Today, as I use my voice, it’s instilling the self-esteem and confidence I always lacked. I am spiritual by nature but never expressed that in my youth. It wasn’t popular back then so I just never discussed it. Today I shout it from the rooftops and let the chips fall where they may. Overall? My readers seem to enjoy it.

I’m leading with my heart and so far it’s been right!

Cathy Chester At the Social Good Summit in New York City with Lois Alter Mark and Jennifer Iacovelli.

At the Social Good Summit in New York City with Lois Alter Mark and Jennifer Iacovelli.

 

What words of advice do you have for women seeking to reinvent themselves in midlife?

That’s easy. Listen to you heart. Learn that your instincts are usually right. And if something doesn’t feel right, let it go and move on. And always, always, be kind to yourself and to others. Open yourself up to the Universe. Being open to anything is important because you never know what’s coming around the bend.

 

What words of advice do you have for those interested in blogging?

It’s important to do what you love but to also be supportive of others doing the same thing. I believe that being successful in blogging and in any writing is, in many ways, a collaborative effort. I’ve found the women I’ve met in the blogging community are intelligent, savvy and kind hearted. We lift each other up and support one another. I’d tell anyone doing what I do to find her “tribe” and to get to know them. You never know what magic will happen there.

Lois Alter Mark (from Midlife at the Oasis) and I met the keynote speaker at BlogHer '13, Sheryl Sandberg, CEO of Facebook and author of the book "Lean In."

Lois Alter Mark (from Midlife at the Oasis) and I met the keynote speaker at BlogHer ’13, Sheryl Sandberg, CEO of Facebook and author of the book “Lean In.”

 

What resources do you recommend?

For blogging and writing tools:

I learned how to create my blog with someone who placed “how to” lessons on Youtube! I’ve signed up for several newsletters, from grammar rules to SEO (search engine optimization) to science and health newsletters that provide news and information: Seth GodinTechlicious, SteamFeed, Goodreads, Bloglovin, Jeff Bullas.

I’ve taken part in many webinars and I enjoy listening to podcasts that offer advice about writing and where to submit to various publications, particular those from Beyond Your Blog.

For blogging networking:

I’ve enjoyed attending several blog and writing events and love networking with all of the people I’ve met. I went to BlogHer ’13, which I loved for networking. I attended a SITS Girls mini-event (twice) and learned a lot about blogging. I’ll be attending the Philadelphia Writers Conference in June. I enjoyed the Random House event last year and I enjoyed BEA (Book Expo America) at Javits Center, with author interviews like Elizabeth Gilbert and Wally Lamb.

I loved the BAM – Bloggers at Midlife Conference that happened this year in Nashville. Also every year, in conjunction with UN Day, is The Social Good Summit held in New York City. It’s all about giving back to the world through kindness and compassion—all the topics bloggers should cover. If you help one life, you help the world. I love this summit.

I must add that my blog was the stepping off point where I got hired to write for other websites. Being active on LinkedIn also provided me with a few jobs as well.

For women in midlife:

Midlife Boulevard, Better After 50, AARP, Next Avenue, ZestNow, and Fab Over Fifty.

I also read a few spiritual newsletters, such as Daily OM, Be More With Less, and Notes From The Universe.

For resources on MS:

National Multiple Sclerosis Society, Multiple Sclerosis Foundation, Multiple Sclerosis Association of America , CAN DO Multiple Sclerosis (Colorado).

Cathy Chester with her "two boys" keep her sane and strong despite living with an unpredictable disease

We are a very tight-knit family who love each other unconditionally. My “two boys” keep me sane and strong despite living with an unpredictable disease. They are my angels.

 

What’s next for you? Do you think you have another next act in your future?

My New Year’s Resolution is to become more disciplined with my time so I can fulfill a promise I made to myself to write the book I’ve always wanted to write. That’s a project that’s very important to me, and I look forward to diving in very soon.

Writing is my passion and writing a book is one of my Bucket List items. I have a lot to say about the 30 years I’ve spent living with an unpredictable and incurable disease like MS. I want to put a positive spin on it because I want others to know that you can live a vibrant life no matter how an illness affects you. Because let’s face it, nobody escapes this life without facing some sort of physical challenge. This message of ability despite illness is a message that is near and dear to my heart.

I’m also looking at ways of finding speaking engagements. I’d like to talk about my experience with illness and get my message out about ability despite disability. I want to find ways to go beyond the written word, challenging myself to spread my wings by speaking to groups of people. I love people and I’d love to share my thoughts and listen to what they have to say.

Lastly, this year, I’m focusing more on fine-tuning my writing skills, and I’ve been submitting my work to several more literary publications. Hopefully they will be accepted! We shall see.

I also have a need to find a cause that’s bigger than myself. I’d like to find time to do some volunteer work. I’m looking at several options because I know that even a few hours a week can make a difference in the lives of people—or animals!

Beyond these near term goals, I’ll always have another next act. I hope to always be evolving, learning, creating, thinking and seeking new and exciting adventures.

 

Contact Cathy Chester at ShifraChester@gmail.com.

Check out her blog: An Empowered Spirit

 

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37 Comments

  1. Cathy Chester

    Thank you for featuring my story, Helene. If what I have to say helps someone it’s all more than worth it.

    I admire you and your site and love what you are doing!! Through you others will learn, grow and network as well. Kudos to Next Act and the fine work you do.

    Many thanks, my friend.

    Reply
  2. Lois Alter Mark

    What a great interview! I’m proud to say I’m friends with Cathy in real life and this totally reflects the amazing and inspiring person she is.

    Reply
    • Cathy

      Thanks for what you said, Lois. At the beginning of blogging I learned a lot from your example and well, your “bubbliness” (is that a word, and if not it should be to describe you!) Thank for your friendship and your love!

      Reply
  3. Haralee

    Cathy’s story is truly inspirational. The fatigue she speaks of so casually and manages so well while doing and giving so much more is incredible.

    Reply
    • Cathy Chester

      You are a gem, Haralee, in every single way. Your kind heart shines through, and I look forward to someday meeting you in person to give your a great, big hug!

      Reply
  4. Tam Warner Minton

    I too did an article on Cathy….she is amazing! I love the in depth interview!

    Reply
    • Cathy Chester

      You are pretty amazing yourself, Tam, in all you do despite the adversities you’ve recently had to face. Here’s a virtual toast to you!

      Reply
  5. Hélène

    Yes, I’m not surprised that Cathy has such a strong fan base, and such supportive friends. She is the definition of inspiration!!

    Reply
  6. Mindy Trotta

    You are such an inspiration, Cathy, and this article showcases why. The positivity you bring to all the bumps and tumbles in life is so refreshing, and one can’t help but feel better by just being around you. This was a great opportunity for people to really get to know you–fabulous article.

    Reply
    • Cathy Chester

      I may be a writer, Mindy, but the only word that came to mind after reading your comment was WOW! Thank you, dear one. Your comment means a great deal to me, and I am blessed to call you a dear friend.

      Reply
  7. Lisa @ Grandma's Briefs

    You are amazing. I’m so honored to call you my friend. You tirelessly inspire and encourage others. And here, you do it again. Fantastic interview.

    Reply
    • Cathy Chester

      Lisa, You inspire me right back! Together we are stronger and will see each other through this MS journey. You are a dear friend.

      Reply
  8. Cathy Sikorski

    Cathy,
    Love this article about your journey. I’m so happy to have met you as one of your writer friends! You already provide so much hope and inspiration. Your book, when it arrives will just be your icing on the cake! Love, Cathy Squated

    Reply
    • Cathy Chester

      One of the great gifts of attending BAM was meeting you, Cathy (Squared) because I enjoyed our time together so much. I felt I’d known you for a long time. You inspire me so, together, we’ll keep inspiring each other! You are a gem.

      Reply
  9. Ellen Dolgen

    Thanks for sharing your journey. Your inspirational words, helps us all re-kindle passion within ourselves. Thank you!

    Reply
    • Cathy Chester

      Thank you for saying so, Ellen. I appreciate your sentiments more than you know.

      Reply
  10. pia

    This is an “I adore Cathy” comment. One day she asked me a more than reasonable question that she really really needed the answer to.
    I not only didn’t answer the question but as I was having a miserable day—worse than miserable really—and unburdened myself to Cathy who promptly switched to helper mode.
    It was something I will never forget and will always be grateful to Cathy for

    Reply
    • Cathy Chester

      Oh, Pia! I wish I could remember the conversation, but whatever it was I hope it helped. You are a sweetie to recount it here. Many thanks for your lovely ways.

      Reply
  11. Doreen McGettigan

    You are fabulous! You are also a bright inspiration. Thank you for sharing your story and I am looking forward to your book.

    Reply
    • Cathy Chester

      Thanks, dear Doreen. You are an inspiration to me in all the goodness that you show and the “fragments” that you share on your blog. I am proud to know you.

      Reply
  12. Judy Freedman

    Cathy is such an inspiring person. This interview really captured her spirit. A wonderful job and I enjoyed reading.

    Reply
    • Cathy Chester

      Thanks, Judy. Coming from you that means a lot because I’ve told you so many times that you inspire me! Love you to bits, Cathy

      Reply
  13. Hélène

    Wow! Cathy’s interview really brought her fans out. I am not surprised she is so beloved. Thanks to everyone for reading and sharing.

    Reply
    • Cathy Chester

      Thank YOU Helene for the opportunity to share my story. I look forward to reading more stories about women and the choices they’ve made. What a wonderful thing you are doing on your site!

      Reply
  14. Carol Cassara

    I thought I knew a lot about lovely Cathy, but it seems there is more to learn! Loved doing so today.

    Reply
  15. Nancy Hill (@Nerthus)

    Helene, Cathy is such an inspiration and so sincerely caring. You couldn’t have picked a better person to feature! And Cathy, you rock!

    Reply
    • Hélène

      I agree Nancy! Thanks so much for reading!

      Reply
  16. Carolann

    What an informative post! It will be the first place I send anyone who ever needs info on this topic. Love the backstory and pics too!

    Reply
    • Hélène

      Thanks for that, Carolann. I have a friend with MS and I was so happy to share Cathy’s story with her for courage and inspiration.

      Reply
  17. Deb

    Wonderful interview Cath! Your spirit sparkles your loving kindness shines through. SO grateful to have you in my life!

    Reply
  18. Joy

    It’s great to learn more about you, Cathy. Thanks for sharing your journey as well as your future plans! Your advocacy is so relevant and I hope you know how much of a blessing you truly are to a lot of people, with or without MS.

    Reply
  19. Ruth

    I am so blessed with your story. Indeed, your a successful woman at the early age but MS doesn’t stop you to live your life to the fullest. I hope that everyone who has MS or any medical condition will be like you, not losing your hope but to advocate health reform. This moved me that I should stop whining over petty things but appreciate life.

    Reply
    • Cathy Chester

      Thank you, Ruth. We ALL whine once in awhile. The key is to pick ourselves up after our pity party and move on. Life is delicious. We just have to figure out sometimes how to make it delicious within the abilities we have, eh?

      Your comments made my day, and I thank you for sharing your lovely thoughts.

      Have a wonderful day~
      Cathy

      Reply
  20. Elouise

    Hello! I could have sworn I’ve visited this site before but after going through a few of the articles I
    realized it’s new to me. Anyhow, I’m certainly delighted I stumbled upon it
    and I’ll be book-marking it and checking bak frequently!

    Reply
  21. newclashofkingshack.com

    Snuff by Terry Pratchett Not totally surprising
    Pratchetts Discworld series made my list of great fantasy books 2011.
    Authored by Jodi Picoult, the novel is based on the love life of Chris and
    Emily who were soul mates since they were kids.

    Shouting aloud one good curse is much better when relieving stress than to keep it all inside.

    Reply
  22. Noreen

    This site was… how do I say it? Relevant!! Finalky I’ve found something that helped me.
    Kudos!

    Reply
  23. Carri

    I’m now nott sure where you are getting your
    info, however great topic. I nweds to sppend a while
    finding out more or working outt more. Thanks for magnificent
    info I was looking for this info for my mission.

    Reply

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