I MiSs dancing
I was never good at dancing, but it was always an integral part of my soul. I would dance for every stressful moment that felt insurmountable, I would dance to relieve tension in the people around me, I would dance just for the joy of life. I learned Gangnam style for the simple joy that I could make my roommate hiccup laughing so hard. I never had rhythm and I was terrible, but it was so fun and brought me so much joy.
I tried, in private, to pull off anything recently. And failed every challenge.
I used to Riverdance. I could do the mashed potato and the macarena. I could swing dance and line dance and do the electric slide.
My legs won't cooperate with me anymore. These days, I'm lucky to walk a straight line. I miss dancing. I miss giving my soul to the universe and just giving it my all.
What do you miss? What was taken from you?
I love and respect you, and I want to hear from you. The struggle is real, from undiagnosed to many years years fighting. 💜💜💜💜
I am so glad you started this conversation,
!
I think it's okay and even healthy to reflect on what MS can take from a person. And I hope you get lots of answers from community members here. I think sometimes, well meaning outsiders say things like, "Well, sure you can't dance, but focus on all the things you can still do!" And that's not bad advice, per se, but it's not healthy to pretend everything is hunky dory and we're all just cruising along, living our best lives and not letting chronic conditions like MS get us down.
I, too, love to dance, but I am truly terrible at it. To say I have "two left feet" would be . . . generous. Still, I have been known to cut a rug at a wedding reception (and people assume I have been drinking; I'm just that bad at dancing).
I am sorry you aren't able to dance like you used to, with that freedom and abandon of someone who just wants to move and doesn't give a fig what anyone thinks!
Again, I look forward to reading what others MiSs.
Best, Erin, Team Member.thank you Erin for your kind words. It really is the small things that matter so much.
I have no issue with being the person that others laugh at, I've always been a bit of a clown with things like dancing because I have always done what I loved, regardless of how well I could do it. Just throw a smile on my face and get everyone else engaged!
And now, it's an issue of safety. I have to brace against sturdy surfaces to stand and not fall over. I haven't figured out how to spin with a cane. I can dance my arms sitting in place or pressing my knees into something I have absolute faith won't move.
So I refocus, start cracking jokes instead of dancing. And it's fun and funny, but it's not the same.
I feel that the best way to heal is to accept the loss, acknowledge it, and find something else that creates the same emotional response.
Turns out that we may have to adapt even more than anticipated. I really hope to hear others' stories, and any coping methods learned on the way. 💜💜💜
I just keep thinking back to the summer of 2013. I was working at a company that hosted group homes for adults with intellectual and developmental disabilities. I had lost my older brother earlier that year, suddenly, from complications stemming from his diabetes. He was only 30. We took our residents for their summer vacation, and this year went to a state park in southwest Virginia. It was beautiful there. We had such a great time. It was two weeks of long days, hard work, and very physical. We had a summer storm late at night while we were there, and several of our employees were feeling the strain. I rounded them all up and dragged them out into the rain for a dance party. We danced, we sang, we were soaked to the bone. And that moment is the epitome of me and what I miss most. There was a fallen tree that I used as a stage to rally my troops. We let every bit of stress and hardship go and had an amazing night.
I don't care what it takes, I will figure out how to make this a part of my life again.
I am no longer with this company, but they're doing well. And I left Virginia in 2014 for more adventures.
I think I've reached the stage of grief that is allowing me to adjust and plan for a future, no matter the obstacles.
Much love to the community, and thank you so much for being here! 💜💜so funny that you mention me shining my light... the company I was with was named something very similar (not stating it for their anonymity) and that was a core part of the company philosophy. To shine the light. 😁
It is really comforting to have this community of warriors to turn to. Especially right now, when I'm still fighting so hard to get tests and find a diagnosis and start planning treatment options. I'm heading back next week to the GP and am focusing all of my positive energies into a productive visit.
Thank you so much for all that you do and for always being so supportive. You are an amazing person 💜
thank you for taking the time to share that. It means a lot to me. This community truly is special, isn't it? That's interesting to the reference of shining your light really resonated with you so much and was reflective of such specific memories in life.
We're wishing you all the best of luck with your upcoming appointment. Keep us posted, if you feel comfortable doing so. Either way, know that we're always here cheering and encouraging on as we all walk this road together.
Best
Alene, Moderator
I am writing an article about this very thing! I feel you and hear you about being a terrible dancer. But, I dance MORE now that I am disabled. First, I had to stop judging myself as being a terrible dancer. The rest fell into place. I hope you can revisit dance and get from it what you need once again. Hugs, Kim, moderator
I can't wait to read your article!
Alene, ModeratorI'm slowly working on learning my new balance and coordination rules, figuring out how I can safely move and pinpointing my problem muscles. Battling severe spasticity in both legs and feet, it makes even walking a big challenge for me right now. But it's one of the things I will be discussing at my appointment next week, and hopefully can make some progress on this journey. I look forward to seeing your article. 😁
Much love 💜
Hello there!, I sympathize with your struggle, not the best dancer but we got it done. I met my husband after going through a long divorce, and while trying to cope with the "off weekends/without children" we would go dancing. Which is something we both enjoyed, My MS by then started progressing, now I'm lucky to make it a full day from 8-5pm without needing my walking cane. I still carry one in my car and have them I still have them through out my home. The feeling of hopelessness not able to control my lower extremities like moving my legs normally is heart breaking to say the least.
I just got my first cane after a very long hard trek through a very small parking lot. It's nice to have the security, but it is so very heart breaking. To lose the trust in our own bodies and feel that loss of control.
I hope that you find something that lets you let loose (safely!) and be the you that you know. 💜
Thank you so much for sharing!!
