I speak to people in the MS community every day in my work, and the comment I hear most often is that people wish others could understand what it's like to battle our disease. I wrote this post to spread a little bit of awareness.
I don't know about you, but I think of my life in terms of chapters. Except my chapters are not in numerical order, but are simply before and after diagnosis.
Before my diagnosis. I could ride a bicycle for miles and miles. I loved how free I felt after pedaling up a steep hill, then letting go to fly downhill and feel the wind gently brushing against my face. I also loved running around the bases while playing softball with my friends, or picking up a friendly game of basketball in the old neighborhood.
The best of all was when I began dating my husband and he gave me a few tennis lessons. Of course he beat the pants off me, but we always had a lot of fun.
It's been years since I've been able to do any of those things. I've lost the ability to run and I can't walk as far as I used to. I can still ride a bicycle, but only for a mile or so. And the road has to be flat. And paved. And wide.
Please don't misunderstand me. I don't mean to sound like I"m complaining. I'm simply stating my reality. I'm telling you my story so you can have a better understanding of who I am.
I don't want anyone to feel sorry for me because I never feel sorry for myself. This is simply the hand I was dealt, and I'm doing my best to focus on what I still can do.
I can walk. I can swim. I can bike. I can drive. I can stand. I can talk. I can dress. I can pee. I can poop. I can write. I can think.
And I feel blessed every time I can do any of these things, because they each are blessings. I am thankful for those blessings.
But I do want you to know that when you see me you're most likely seeing the best of me. If I have a social engagement of any kind I have to make plans to rest before I go to build up my strength. I nap a lot. Ask my husband and son. They see what goes into the daily grind of living with MS.
Think of this post as a public service announcement for anyone with a disability. We want you to see us for who we are, and not for who you think we should be. Please don't judge us based on what we can't do. We are so much more than our disability.
So when you see us remember that we're doing the best that we can. Accept us for who we are. Because in our hearts and minds we are still dancing as fast as we can.
So love us a whole lot more.
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Beautiful. That's all. Just beautiful.
Beautifully said Cathy! xo
Great post, Cathy. I can relate to every word. Keep dancing!
Lovely and important message..thank you!
So beautifully said, Cathy! Hugs!
Funny how I envy that you can ride a bike at all! I loved bike riding. When I lived in Michigan which was so darn flat, I used to ride for miles and miles and watch the red tailed hawks soaring overhead. It was freedom and it was glorious!
One day, I hope you and I will have that back! Who knew it was such a gift! Although, I always treasured it, I never imagined losing riding a bike.
I even remember the day I learned to ride a two-wheeler! Determination! All of us have that little child hiding within us. She comes out when we need her and take son the world. With MS, I need her every day.
Thanks for the inspiration!
Cathy, a lovely post about tolerance and compassion. You never stop impressing me with your perspective and even here, where you're telling the rest of us to stop and consider the situation for a moment, the message is gentle.
Also that cat on your home page...I love seeing him/her every time I visit.
Thank you for this post. I work with some people who have MS and they seem to tell me so much of what you shared. I am also aware that one of the hardest things is the unpredictability of the disease and questions about the future. Thank you so much for your insight into the internal experience of MS.
This is exceptional, Cathy. So true about the being seen when we are at our best. That's one of the things I especially love about working online: We can still look and be our best to the outside world even when the MS has a hold of us. Great post. Hugs to you! ♥
You are the best. You inspire me with every word. xoxoxo
So beautiful Cathy. Over the years I've had to stop doing several of the activities I used to love (running and tennis) due to injuries. And recently I injured my back which has left me with chronic and sometimes debilitating pain which has limited my activities even more. Your beautiful post has reminded me that I still have so much to be thankful for.
Such a great post. Two different diseases alot of the same symptoms it's a small world after all!
The fact that you can be grateful for the things that you can still do... that speaks volumes about who you are. Truly.
It's funny, when I've been in your company I've never noticed anything but a vibrant, sweet, joyful person. And, of course, you ARE the best audience for my jokes --- you always laugh like you mean it! I'm happy that you rested up for me 🙂
Keep dancing and sharing your beautiful story. You are a star performer.
You are indeed an empowered spirit and your spirit inspires the rest of us. Thanks for that post of true compassion.
Such truth and beauty from one I adore. Thank you for this, for putting a face to a disability that is often invisible and the chance for others to peek behind the curtains. Your courage is endless, and this is but one example of it.
Written like a true champion and ambassador for those who need hope! I just finished writing a piece where I paraphrased and attributed a statement to this brilliant woman I know, respect, and admire. Here is what I said:
"A colleague deals with MS’ limits by developing and maintaining a special relationship with her body. She has learned to listen closely to and respect what her body is saying. That means that preplanning is not always an option because when it is time to rest, she does not have an option. Do a little and rest, she says. Get up and do a little more. Listen to what your body tells you and push as much as you safely can."
That is you my friend, inspiring, hopeful, realistic, and oh so astute! Love this piece and you!
Not only do I accept and love you, but I admire and am inspired by you. So beautifully expressed, as always. And, really, a great message for and about everyone. We're all just dancing as fast as we can. xo
Beautiful post, Cathy. You always know how to find the good things about life and focus on them. I am always so inspired by your can-do attitude!
What a wonderful post, Cathy. I cannot wait to meet you in person, every time you share a piece of your heart I feel as if we are there in person. Although I can't pretend to know what your experience is, I do know a lot about not wanting to be boxed in or defined by my challenges. I can't imagine anyone seeing you for anything other than the warm powered spirit that you show up with every day. xoxo
Nicely stated. In my mind I am all before MS. I see in my life the difficulties of what once was automatic. The contradiction startles me. But I am grateful for what I have and can do, even if it takes longer or is a different approach. Peace & Joy
Come to the beach with me and I'll pedal for both of us on one of those funny bikes for two so you can go for a ride! This is beautiful and thanks for enlightening the rest of us. Thanks for sharing your journey. Remember I sent my sister to your site since she was diagnosed a couple years ago. She reads your sites that you write on and recommend. Thank you!
Terriific article, Cathy - I especially related to the "napping part" as I am a napper, too!
This really hit home, Cathy. My sister struggled through 25 years of Parkinson's and as it progressed, I think one of the hardest aspects for her was getting others to see that her failing body was NOT her. Her spirit, her mind, her essence, was still HER as she'd been before she became ill, but some people would make her feel so marginalized, as if she weren't still capable of being fully human. She had to make concessions and accommodations to her illness, but she was still who she'd always been inside.
It's good to hear about all the things you CAN do! There are so many so called 'healthy' people (because they don't have any specific condition) who don't bother to do do these things and just veg out on the sofa. More power to you for your positive attitude and example of how not to let a debilitating condition define you.
You walk the walk, Cathy, and are such an inspiration to all who have the privilege to know you, if only virtually. Thank you for sharing your hard-won insights and wisdom.
Wow, Cathy. I know several people affected by MS, including my sister-in-law. You're so inspiring and a wonderful writer. So glad I found your blog.
YEs yes yes yes yes. What a great attitude and reminder. This will go in my touchstone- to return to posts pinterest board. In fact it inspired that board and I will be creating it just for you! Big love for shorter bike rides. I'll sit next to you on the bench any day and watch tennis if you want.