Five Women in the MS Community Help Me Feel #strongerthanMS: Who Helps You?
Did you ever hear the question, “If you could have anyone sit at your table, alive or dead, who would you choose?” When asked this question I’d usually answer with a variation of people like Eleanor Roosevelt, Cary Grant, Joan of Arc, Abraham Lincoln, Golda Meir, Mother Teresa, Albert Einstein and Frank Sinatra.
Quite a group, don’t you think?
After learning that the Multiple Sclerosis International Federation declared May 27 as World MS Day by asking “What makes you #strongerthanMS?” I asked myself who would be at my MS table.
I began to wonder what helps make a person with MS stronger. When you live with MS there are so many people who go in and out of your lives, people who try to make a difference in your quality of life. They could be family, friends, doctors, nurses, fellow MS'ers, researchers, employers, employees, and sometimes even strangers.
After awhile you begin to build a community of people to lean on.
I thought I’d begin this conversation about what makes us #strongerthanMS by introducing you to five special women in my MS community. Two of them are in our MultipleSclerosis.net community!
I asked each of them to briefly discuss the two question MSIF’s posed: What does equality of access and #strongerthanMS mean to them?
(NOTE: It’d be impossible to write about every person who’s helped me feel #strongerthanMS for the last 28 years. I wish I could personally thank every one of them.)
June Halper – June was my first nurse when I was diagnosed, and taught me not only about MS but also that a diagnosis is a small part of who I am. There isn’t enough room to list all of June’s incredible accomplishments. Many years ago I remember her saying, “I won’t rest until they find a cure for MS.” She truly meant it.
“World MS Day will take place on May 27, 2015 throughout the world – a bit redundant but true. Actually, the world of MS occurs every day in the lives of all those affected by MS: those carrying the diagnosis, their family, friends, and social circle. Today MS implies hope, empowerment, and new possibilities due to changes brought about by research into the cause, treatment and future cure of the disease. The world of MS has expanded for the professional community as we have resources and tools for caring, sharing, education, and wellness. So here’s a toast to those who came before us who provided us with these tools; and a toast to the future full of possibilities for a cure, full remission, and reversal of the disease.” ~June Halper, APN-C, Chief Executive Officer of Consortium of Multiple Sclerosis Centers, Executive Director or International Organization of Multiple Sclerosis Nurses, MSNICB
Lisa Emrich – I met Lisa on LinkedIn when she recommended me for my first paid writing job. We finally met in person in 2011 and I became enamored with her gentle and caring ways. I have a lot of respect for Lisa and her vision of creating a much-needed directory called Carnival of MS Bloggers, a site that showcases the growing number of MS blogs now available. I am honored to call Lisa my dear friend.
“Barriers are not always physical, financial, or social; sometimes they can be emotional. I am thankful for the love and assistance from family members, and my therapist, for helping me to bring light into the darkest corners of my inner self so that beauty, love, and life can be freely shared.” ~Lisa Emrich, Multiple Sclerosis Patient Advocate, Brass and Ivory (blog), iConquerMS.org, HealthCentral.com, MultipleSclerosis.net, RheumatoidArthritis.net
Tresa Miller – I first met the hysterically funny and deeply passionate Tresa when we were peer advocates for a pharmaceutical company. We struck an immediate bond after she called me “Cat” and her “Yankee friend.” I guess if you’re from Indiana my Jersey “accent” seems kind of funny! She’s a force to be reckoned with and has an innate ability to make everyone feel renewed and energized despite MS. She’s truly one special lady.
“The Tri-State Multiple Sclerosis Association in Evansville, Indiana was my go-to resource both at diagnosis and through the 19 years with this disease. They assigned me a mentor at diagnosis and I really don’t think anything has ever been more appreciated. To get the opportunity to speak with someone that was not only in my shoes but also in my head as well was invaluable. She lifted me up, gave me practical advice and hope. Physicians give you clinical advice, but your own advocate gave me the truth. As a result, I live a beautiful life and am reminded as I talk to newly diagnosed patients to count my blessings every day. If I’m walking in a straight line and have my eyesight, I can do anything!” ~Tresa Miller, Owner of Grateful Threads Fabric
Dorothea “Dottie” Pfohl – I met Dottie while working at IOMSN (International Organization of Multiple Sclerosis Nurses). A dedicated nurse, Dottie is a ball of energy with a heart of gold who deeply cares about patient care. Recently retired, I have no doubt Dottie’s golden heart will continue to reach patients in many meaningful and caring ways.
“Thinking about barriers and accessibility my first thought was of nephew Peter Fischer who, despite severe limitations became an architect and started a business and advocacy career around accessibility. I also reflected on the personal and realized that this year I stumbled across the barrier of retirement from my role in the MS Center and what that step would mean. Going forward I sensed a shift from what I do to who I am. The barrier of what I accomplish crossed I can focus less on what I have done or will do to being who I am now. It’s not just endless vacation but it is a little victory and like folks who live with MS it is one I claim with pride. Every barrier broached is a finish line.” ~ Dorothea “Dottie” Cassidy Pfohl, RN, BS, MSCN, University of Pennsylvania Department of Neurology (retired)
Christie Germans – Christie is a powerhouse despite having MS. Her energetic spirit is palpable whether I’m reading her posts or speaking to her online. On her award-winning blog, The Lesion Journals, she introduces herself as “a number crunching photographer who loves riding my bike really, really fast!” Christie is the embodiment of joy, laughter and hope, and I look forward to meeting her in person later this month.
“There are many people and groups who make a difference in my life with MS that it is impossible to list them all but here are some on my list: Kate Milliken, via the really cool Moodifier, for helping me stay true with my emotions. The initiative iConquerMS for empowering me to fuel MS research with my health data. The Multiplesclerosis.net blog for keeping the MS stories real and honest. This MS Life for creating a compassionate support program. Race to Erase MS for funding millions of dollars for MS research, and even Phil from the Amazing Race who motivates me to ride my bicycle. These are some of my heroes who have helped me grow to become #strongerthanMS. Most of all, though, are my fellow MSers who remind me each day to live everyday as full as possible.”
I’d like to thank June, Lisa, Tresa, Dottie and Christie for being such strong, vital and empowering women. The positive impact you have on the MS community helps us all feel #strongerthanMS.
Who would be at your table that makes YOU feel #strongerthanMS ?
About World MS Day (from worldmsday.org): “World MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by Multiple Sclerosis. World MS Day is the only global awareness raising campaign for MS. Every year, the MS movement comes together to provide the public with information about MS and to raise awareness on how it affects the lives of more than 2.3 million people around the world.“
Have you ever experienced any of the following financial struggles due to your MS?