Finding My Shimmy

I was diagnosed with MS in July of 2013, shortly after my 29th birthday. While doctors told me that it likely manifested years earlier, when weekend-long bouts of vertigo were brushed off as a possible symptom of a sinus infection, I don’t see those as my first attacks.
 
Much like your first kiss, you never forget your first attack — the one that really counts.

I remember what I was wearing. I remember the cheesy pickup line that was tried out on me just minutes prior. I was watching my former Greek dance troupe perform at the Greek Fest in Milwaukee. I had recently retired after dancing with them for nearly 25 years and this was the first Greek Fest that I wasn’t performing in since I was four years old. For their finale, they invited former troupe members to join them for their final number — Zorba’s Dance.
 
It was just about the end of the song. We were all moving our feet so quickly to the fast music and then, with only a brief warning, my entire left half went into painful spasms. My nerves were on fire. For about a minute and a half — though it seemed much longer — electricity shot down my left arm and leg. For a minute and a half, they were not mine.

In the confusing months following diagnosis, I was told I needed to manage stress (easier said than done) and stay active (also easier said than done). In the middle of a bout with dueling depression and denial, I decided to start dancing again, this time in the form of American Tribal Style (ATS®) belly dance. I was a little apprehensive about getting back into dance (and eventually performing) after having such a violent introduction to my disease while doing something I loved in front of an audience, but I figured belly dance would be a healthy direction to explore. After all, what better way is there to feel in control and in tune with your body than to make it move in ways no human body should? And incidentally, the mother of ATS®, Carolena Nericcio-Bohlman, also lives with MS. If she can do it, why shouldn’t I?
 
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It’s been nearly three years since I began studying ATS® and it, along with its overwhelmingly amazing sisterhood, has become such an incredible source of joy and strength and purpose.
 
I get fatigued. My balance is sometimes off. I have to work a little harder to make my body create the beautiful lines and movements, which results in additional strain and fatigue. I have to conceal it. My stamina isn’t what it once was. My body isn’t what is once was. The day following long workshops or performances is usually rough. For some, that may be enough to give up. Despite all of that, when I dance, I no longer feel broken.
 
In having multiple sclerosis and understanding its complexity, its range, and, most of all, its relentless unpredictability, I don’t know what tomorrow will bring. Every step I’m able to take each day brings me joy. Every step, every movement, every shimmy, every cue that I’m able to read from my fellow dancers is joy, is hope, is strength, is beauty, is trust.
 
And I have a better appreciation for those things now than I probably could have prior to my diagnosis.

Find something new to love. Make yourself uncomfortable. Push forward. Find your shimmy.

 
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Cat

Cat Stappas

Cat was diagnosed with multiple sclerosis in 2013 and writes about her experiences in her blog, It's Only A Bruise. She hopes to make the dark corners of the internet a little bit less scary for both the newly and the long-time diagnosed with some honesty, positivity and — sometimes — some tongue-in-cheek humor. You can read her blog here and follow her on FacebookTwitter, Instagram and YouTube.

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    18 Comments

  • Avatar
    scottwohl  Feb 26, 2016 11:27 AM
    This rang truer than true: "Much like your first kiss, you never forget your first attack — the one that really counts."
  • Susan Lesperance   Feb 26, 2016 11:33 AM
    Cat, your article, "Finding My Shimmy" hits the mark. It gives hope to the newly diagnosed and reminds those who have lived with MS for a long time that there is nothing they can't do...life goes on--just different and sometimes with greater difficulty. Thank you for inspiring us with your grace and courage.
  • Agnieszka Kedzior   Feb 26, 2016 11:51 AM
    Beautifully written!
    I especially like this part: 'And I have a better appreciation for those things now than I probably could have prior to my diagnosis.'
    Keep on dancing and writing Cat!
  • Sally Kuhlman   Feb 26, 2016 12:15 PM
    Cat, thank you for enlightening us about MS and its impact on your life via your blog "It's Only A Bruise" and as a guest blogger on "MS Connection Blog". Your honest approach to bringing knowledge of MS to us is refreshing and insightful. You have shown time and time again that you are in charge and not MS. My favorite advice from this blog is "Make yourself uncomfortable. ... Find your shimmy." Blessed to have you in my life. xoxo
  • Avatar
    ambrocious  Feb 26, 2016 12:35 PM
    Thanks Cat, reading your post makes me feel less alone, and is a helpful guide to those who don't have to suffer with the terrigying unknown of what tomorrow will bring us. Keep on dancing girl, don't let it get you!
  • Sotiria Papadopoulos   Feb 26, 2016 12:39 PM
    You write beautifully!! Thank you for opening up about this to all of us. I don't have MS but I have other neurological conditions that have changed my life a lot. Like you, the Greek dancing really hit me hard. The last time I performed was close to 10 years ago. I felt so off at folk fair that year it was unreal. Couple days later I was hospitalized. I can't dance at all at the moment. You just gave me hope that one day I can dance again. I was dancing with Gypsy Moon Dance belly dancers. My goal is to get back with them. Ha Greek dance I accept it, that I'll never be able to do. Again thank you for giving me hope. I literally just got out of physical therapy and read this. You are a strong and beautiful woman that can inspire many. ❤️
  • Druanne   Feb 26, 2016 12:54 PM
    <3 Inspirational <3
  • Anna Connors   Feb 26, 2016 3:16 PM
    I have MS and I belly dance too. I happen to have Primary Progressive MS. That really sucks because I have my symptoms everyday. I admire everything that you're doing to do the thing you love and brings you joy. My dancing means the world to me. I'm going to keep dancing as long as my body will allow me too. I refuse to give up without a good fight! I was lucky enough to meet the beautiful & talented Carolena when I visited SF. I was awestruck with her and the studio. Keep on doing what you're doing. I'm so inspired by your story! Shimmy on sistah!
  • arminius74  Feb 26, 2016 3:43 PM
    I totally agree with you. You have to find things you love and have them bring joy to your life. I was diagnosed with MS in July of 2015. However, I had symptoms of the disease for years. I just didn't know what was causing them. I even ran the NYC Marathon back in 2011. I loved running and I apparently didn't let the MS get in the way because I finished in five and a half hours. Fortunately, the other thing I love is writing and that's how I know I had MS many years ago. I kept writing in my journal and there it was: tingling in my hands and feet. I can't run anymore but I can walk almost every day. Exercising for me is one of the things that keeps me happy. Writing is the other. So you are correct because doing things that can make you happy is one way to battle this autoimmune disease. I say to you and everyone, keep going and keep the joy and happiness in your life. That is essential.
  • Michael   Feb 26, 2016 8:36 PM
    Inspirational!
  • Avatar
    SmartyPants  Feb 26, 2016 11:46 PM
    Beautifully written, your story inspires me, i was born in Milwaukee but moved to Oregon in the early 80's, where the dark winters drained my vit d and i think that and i had mono at 15 i got progressive ms. I too found my way, i worked 35 years in service to people with disabilities, then was forced to retire due to MS. my right leg is half paralyzed, i have severe back pain, and yes even had a heat induced vertigo for 19 days. Did you know "dizzy" is when you spin, vertigo is when the room spins.
    But i over came, i found my journals from the days when if first moved to ORegon and worked as a timber cruiser in the Wallowa Mts, and as i read them i started to chuckle and thought these would make good books, so i wrote three books, "From the Waters of Coyote Springs" 'Felix and Eve" and "The Arrangement" all ebooks look on amazon under Diane DeVillers. The three books are also available in one paperback book called "The Eve Chronicles" Check them out. We all have our own story. You should write about your life. I will follow your blog. Stay in tough dear heart.
  • Lynne Jones   Feb 27, 2016 9:49 AM
    Your statement of "much like your first kiss, you never forget your first attack" is so, so true. Thank you for sharing your story.
  • Barbara   Mar 7, 2016 4:18 PM
    You are remarkable! Dance and keep on dancing! Dance for those that can't. Your lovely inspiration and determination shines through.
  • Rene' Tompkins   Mar 8, 2016 7:54 PM
    So inspiring to hear and see success! I wish I wasn't in denial regarding my disease. I have found an amazing all natural product that has change my life when it comes to my crazy fatigue and taking my MS meds. I thought this summer I would never be the same. I will keep on going thanks to stories like these. Thank you!
  • poetzinheelz  Mar 16, 2016 12:26 AM
    So happy to find a fellow MSer that loves to dance! I have always loved reading but from the time i begun listening to Michael Jackson at age 16 dancing became my thing. Throughout the years at social events with my family and friends I would be the *life of the party* cause as soon as i hear music I on the dance floor!

    I never studied dance formally or attended classes but i continued listening and grooving at home & after MS attacked my legs in '05 I thought for show with all the balance, leg heaviness, bumbling stumbling i would not be able to love dancing again but strangely when I couldn't twirl about on my two feet I sat on the floor and danced at home, solo until i felt confident enough to attend a Christmas dinner & dance in 2007!!

    I had such a good time, (but i did not twirl) and I danced for the first time in public in my high heels...which I realized helped tremendously with my balance because when I dance in my heels I don't stumble.

    Since then I dance more, at work where I am a cashier I am the only one always busting moves to some song on the radio. I also have fallen in lust with wearing high heels in my now mature age of 51! As a young woman flats & sneakers was my go to footwear for any occasion now I have more higher heels than flats.

    So MS tried to KO my love of dance but wearing my high heels when I dance I stomp on it each and every time because now I can even do a spin or two!!
  • Jennifer Boyd   Mar 19, 2016 4:54 AM
    Thank you so much dear.
    You give me courage.

    :-*
  • Geri Davis   Mar 19, 2016 11:43 PM
    I am a Disabled Women Vet now living in Virginia and surviving the many challenges of Progressive MS after spending a couple of years at the Veteran Affairs Medical Center (VAMC). After living an active 50+ years, I.have learn to live, laugh, and love as much as you can. Keep the faith and keep God in your life. GPD
  • Joanne   Mar 31, 2016 10:56 AM
    Cat, you have a lot of heart and that's what counts with MS. I was diagnosed in my 50s with moderately severe MS, but had always been active. I kept up my exercises, modifying them as needed, and I'm still on my feet at 76. Muscles need to move!
    PS, you're a very good writer!