Societal attitudes toward disabilities have changed in more ways than I ever imagined and I'm grateful for it. The shift from hushed voices talking about illness to inviting patients to share personal stories makes me feel like I've crawled out of a dark, scary hole and landed in a place where I can feel the sun again.
The busy, productive and enlightening few weeks I just had helped me feel this way. If you asked me what I've been working on I'd have to say the main focus has been about Multiple Sclerosis. But if I said it was only about MS it would be like saying Cary Grant had a pleasant face. It doesn't complete the picture.
Indomitability. Character. Compassion. Intelligence. Curiosity. Commitment. Love. Friendship.
It began with a road trip to Philadelphia where I was invited to be on an MS patient panel along with 3 other advocates. It was an incredible opportunity to express our opinions on what it's like living with MS.
Folks asking US to speak OUR truths? That seemed surreal yet amazing.
Sitting at our roundtable were key players from a public relations firm, a pharmaceutical company and a well-respected health and wellness website. They wanted to hear our personal stories, opinions and what we've heard from other MS patients across social media channels.
We were open and honest, holding nothing back, particularly while discussing a recent television ad by a pharmaceutical company that did not portray someone living with MS in an accurate manner.
The patient perspective is alive and well these days. Our voices have become a hot commodity for big business and the medical community, and we are ready to be heard.
Damn, it feels so good.
The Four MS Musketeers: Danielle Sciocchetti, Dan and Jennifer Digmann (who I was thrilled to finally meet in person after knowing them for years; they are such dear people) and me. Four people living quality lives with MS
Passion. Intelligence. Creativity. Integrity. Brilliance. Family.
That same week I attended a meeting at the office of the Consortium of Multiple Sclerosis Centers (CMSC), a place where I feel part of an incredible family. As their blogger, and part of the press corps, we had more planning to do prior to CMSC's upcoming 30th anniversary meeting being held at the Gaylord National Resort and Hotel in National Harbor, Maryland. The event brings together over 2,000 MS leaders from around the world to discuss what's new and on the horizon for the MS patient.
The meeting welcomes healthcare professionals, researchers and advocates to not only celebrate 30 years of achievements but to also learn more about new and emerging therapies. It's a chance to hear new information that positively impacts both the clinical practice and research. There's also opportunities to attend over 130 hours of educational sessions for the multidisciplinary audience. (To find out more about the annual meeting and what's being offered please click here.)
Listening intently to the opening speaker at the CMSC annual meeting, 2015
Now it's time for a little vaguebooking, something I generally despise but for now it'll have to do. I'm working on a project proposal that, if granted, will have far-reaching benefits for the MS community. So please cross your fingers and toes, don't walk under any ladders or break any mirrors while thinking about me, okay? I'm praying for some smooth sailing.
Resolve. Courage. Character. Willpower. Spirit. Spunk. Determination.
My husband and I recently visited the fascinating Museum of the City of New York. If you're in Manhattan and have a chance to visit I highly recommend it. A history and art museum that opened in 1923, one exhibit in particular stood out to me that day.
No narrative is necessary to accompany the following photos. It's self-explanatory. That said I would like to say that every physically challenged person featured in these photos are champions. They are true heroes.
Here's a look at the photos I took from the exhibit "The New York Marathon: The Great Race":
Those of us who are physically or mentally challenged continue to dream of living a "normal" life, where a cure will be found, better medicines will be discovered, and tolerance and compassion will be in abundance.
For now I'll continue to use my voice to help create positive change for my community. For now I'll bask in the glow of seeing others in the disability community thrive in ways none of us ever dared to dream of.
Let's all keep moving forward.
I love this post. It is full of energy, excitement and hope. I am thrilled that you are discovering positive developments in the disability world that will impact so many lives. How wonderful that you are given a voice to help that change. Kudos to you, my friend, for being a strong advocate for your community. So proud of you!
This is very dear to my heart as my youngest is disabled. She does life from her wheelchair and at 25 years of age I still find life very difficult for her at times. I agree with you in that we have come a long way to advocate for people with disabilities, but we still have a long way to go. When you begin looking at the world through the eyes of someone different than yourself, you begin to take action in making the world a place for all. Thank you for what you are doing on behalf of many people with challenges.
Good for you that you are having the opportunity to express the patient's perspective in such an important way. Keep up the good work! I try to do the same thing in the hearing loss space. Fingers crossed for you on your big project.
A very moving post Cathy, I loved it! Thanks for all you're doing. You're an inspiration.
Cathy you are a phenomenal woman and such an inspiration. To use your voice for a cause is very powerful.
Love this and so glad all your travels went well. Love your Cary Grant line, too. You are making a difference for so many people!
You are a wonderful advocate for all people experiencing disabilities ... I am always amazed at how far you travel to spread the word about empowerment. Please know that all you do is appreciated by so many of us, your peers.
What amazing events and opportunities you've experienced of late! Kudos to you for taking advantage and putting them to good use for creating positive change for those with disabilities. You rock, my friend. Wishing you luck and good fortune in terms of your potential gig! Keep us posted when you're chosen for the part (for which I have no doubt you will be fabulously empowering)!
I agree! I never really talk about my physical disabilities much especially in past. Now, I don't mind it so much. What a wonderful post Cathy. I will have to hit that museum up next time we are in the city. I don't think I've even been to that one. Thanks so much for sharing.
Dang but you've been busy. Kudos C squared. One of my longtime friends has MS and went on to win a national gold medal in an aerobics competition. You've also come a long way..hugs
"For now, I’ll continue to use my voice to help create positive change for my community. "
Don't stop being a voice and advocate for the disabled, Cathy.
The only way we can ever win MS and other diseases like it is for able bodied people and disabled to join forces. How can we not join hands? In order to accelerate improving therapies and treatments that can stunt or reverse the diseases.
In the meantime, it's often the able-bodied individuals who sit with disabled mindsets--suffering from lack of compassion and insight into the dreams and aspirations and hopes of our fellow men and women who struggle in silence.
It will serve us well to learn how we can be of better help and become part of the solution.
Thanks for the inspiring post, Cathy!
Hi Cathy fantastic! So inspiring thank you for sharing these photos...I thought of you, as I need advice.
My husband has taken a job in Washington DC. So we are moving.
Living in Phoenix, Arizona for the last 30 years and thinking about the post you did on your hope to move to warmer climate is on my mind.
I feel the warmer weather has helped me stay as healthy as I have for the last 17 years...and a great doctor. Do you have suggestions to find good MS doctors in the east/DC area? You can imagine finding good support is top of my list in all the changes. Thank you...love your posts.
You go girl! Talk about an empowered spirit. Instead of sitting around moping about your health challenges, you are standing up, speaking out and lifting up others. What a wonderful opportunity to be part of the panel and giving a voice to so many others living with this. Keep up your great work and I will keep cheering you on long distance from Switzerland.
Sounds like a very exciting time for you, right now. Grateful for your advocacy!
Cathy,
I'm impressed by your gladiator advocacy for people living with MS and other disabilities! Brava! For several years, beginning in 2007, I was that same kind of force for breast cancer and got to be high-profile. After James died, I continued for two more years, but found I couldn't write about cancer anymore. That's when 1010ParkPlace was born. I wanted to talk to women our age about a wide variety of topics. My other Top Breast Cancer Bloggers and I made great contributions to help families, living with breast cancer, and like you, I networked with researchers and drug companies and was on many panels. I know, all too well, the dedication and energy it takes to be an advocate. I salute you, sweet friend.
xoxox, Brenda
All mirrors will be left intact until we hear about your big news! Git 'em Tiger - your spirit is contagious!
I love this post and shared it on social media. I know two people with MS and my father was a World War II vet with a head injury - not MS but I know, too well, about that wall of shame and silence - it affected me, as a daughter, growing up. Rooting for you!
Every time I see the commercial with someone supposedly with MS diving into the water of a swimming pool, effortlessly, I think of you Cathy. Great post and I am sharing! The world is a better place with you fighting your fight. Thank you for that.
Cathy, your efforts are tireless (although I imagine you do get tired). I am acquaintances with a few men in San Diego who struggle with their MS. My daughter is a certified recreation therapist who hopefully will have a job at a state mental hospital in a few weeks. I am amazed at the amounts of compassion that people who work with others' disabilities have. I wish you good thoughts for your project!!
Cath...a very inspiring and positive post!! Awesome things are happening! Keep sharing your knowledge and let your voice continue to be heard.
You're Super-Girl in my book!
Thank you for your hard work and advocacy!