Oct 31, 2013
October was Dysautonomia Awareness Month! How Did You Celebrate?
It's the last day of Dysautonomia Awareness Month! How did you commemorate the occasion? Many people spread awareness online, through successful social media campaigns like "Thumbs Up for Dysautonomia Awareness" where people proudly sported blue nail polish on their thumbs to show solidarity and support for dysautonomia patients. Many others also took the opportunity to raise awareness in their communities by hosting fundraisers, educating physicians, or friends and family. It's important to realize that raising dysautonomia awareness doesn't end in October. It's a 24/7 pursuit. Individuals around the world are working tirelessly to spread awareness 365 days a year. For more ideas and information on how to keep spreading awareness or to host a fundraiser to benefit new and ongoing research, please visit DysautonomiaInternational.org.
On Losing the Ability to do What You Love
"...I was dancing again, every muscle effortlessly engaged, articulating in perfect synchronicity."
About a month ago, one of my best friends sent me an article that brought me to tears. While I'm sure her intention wasn't to make me cry, this article hit way too close to home. She sent it to me because she knew it would resonate within me like it did within her. We had both been dancers in our former pre-POTS lives. More specifically, ballerinas. Living a beautiful life doing what we loved and were perhaps born to do. We were introduced to each other through a mutual friend who also had POTS and recognized that we were destined to be besties. We bonded instantly over our similar past experiences and our current shared love of reality dance TV. While watching Breaking Pointe is no substitute for dancing ourselves, it certainly does help fill the void.
The night before I received the article in my Facebook inbox, I had had a dream that I was dancing again. It was haunting, but not a nightmare. It was a very vivid, beautiful dream that made me feel very much alive and self-actualized in those brief moments I that was dancing again, every muscle effortlessly engaged, articulating in perfect synchronicity. Unlike my current reality, I had complete control over my own body, and it felt good. Exhilarating even. I was in my old ballet class with my former instructor Miss Mary guiding my movements across the floor. Except I was my current self in present day, just in an alternate reality. A reality much more fulfilling than my own.
In my present reality, I am currently in physical therapy for a bum ankle. Or at least what I thought was a bum ankle that to my dismay actually turned out to be two bum ankles and a bum hip. It's no secret that years of ballet takes a toll on one's body. And perhaps even more of a toll when you're hypermobile and repeatedly encouraged by over-zealous instructors to relish in your perfect turn-out. While I haven't danced ballet for several years, apparently I still walk like a duck, my hips stuck in a perpetually turned-out state. My physical therapist also happens to be hypermobile and is good at correcting these issues. She uses pilates as a way to strengthen muscles and thereby control her own hypermobility. I did not realize how bad my ankles had gotten until she said that I need to learn how to walk all over again. Apparently I've been doing it wrong all these years.
As I raised into releve alongside a supportive countertop in physical therapy, I kept having flashbacks to the ballet barre and and all the hours that I had spent there, nearly deforming my own body from three years of age onward, as it was growing and developing into the body I have today. Going to ballet class was as routine as brushing my teeth in the morning. As the years of class went on, all our bodies grew to be the same shape and size, so that we were all nearly identical and could all wear the same size costume if need be. There was certainly not much physical diversity in ballet. Most of us were naturally hypermobile to some degree. If you weren't, you simply couldn't compete in the ballet world. Or, you had to work very, very hard at it. Those are the type of dancers I respect the most. The ones who have to work at it. Now that I'm aware of my hypermobility, I realize I possessed an unfair advantage in the ballet world.
I have been asked the following question several times by friends and family: if you could go back in time knowing what you know now, would you have still danced ballet? The answer is undoubtedly yes. Although it may have caused irreparable damage to my body, I was simply meant to do it. And there has always been a void since I stopped dancing. I consider myself a generally happy person, but there's always been something missing. And I know precisely what that something is.
Ballet was my outlet, my escape, my passion. It helped quell the obsessive compulsive tendencies I had hidden as a child. It also came so naturally, more naturally than sports or other athletic pursuits. I didn't have to work at it. It was effortless. The rest of my life has certainly not been effortless by comparison. Physical therapy is hard work. I am developing a new awareness of my body, and an appreciation for what I put it through. I am trying hard to correct bad habits that ballet helped me acquire over the years and push through the pain. I carry with me everyday now the physical reminders of having once been able to do what I loved. And to me, it's all been worth it. If I could still dance ballet today, I absolutely would.
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