On October second, at the Independent Brewing Company in Bel Air, Maryland, I hosted a Dysautonomia awareness event: Getting Down for Dysautonomia (you know your cause needs awareness when you constantly feel like you’ve misspelled it thanks to the dotted red line that appears beneath it everytime you type it). I still can’t believe this all happened and we really pulled it off but I know I couldn’t have done it without the amazing people who supported me. But thank you’s are typically done at the end of the post so I won’t get sappy until the bottom. You’re welcome.
I came up with the idea for this event while at the Dysautonomia International Conference last summer (you can read about my experiences here). I attended a session titled “Floor Yoga for POTS and EDS,” which sounded great to me as I have POTS and am very hypermobile, though I do not have EDS. I have always enjoyed the idea of yoga but only done it a couple of times, and with POTS I simply hadn’t thought of it as an option. By remaining on the floor for the duration of the session, it became one. Following yoga was a session on advocacy, where I heard Dysautonomia International founder Lauren Stiles speak about her experiences in advocacy and give some tips for those looking to help spread awareness for any sort of cause. There were others who had held awareness events and fundraisers with whom I spoke and was able to get a general idea of how these events were put together and how involved the process is. By the end of the session, Getting Down for Dysautonomia was already taking shape – though the name wouldn’t come to me for a couple of months.
We had such a great response that the yoga class filled up to capacity and we had to add a barre class, which was also pretty full. My sister took part in that and it was a much more intensive workout than our floor yoga. While at the end of our session I was calm and at peace, she was red and sweaty looking for water.
Yoga was run by Mylene, who tailored the class to potsie needs. We had participants of all ages and all abilities, and everyone was able to modify as necessary. She put a focus on kindness, compassion, and self-love, which was perfect for our event.
After yoga and barre had ended, and the vendors were set up in what had previously been the yoga room, I was able to say a few words before shopping commenced. I shared with family, friends, my mom’s sorority sisters, and total strangers what Dysautonomia was, a bit of my story, and a few facts about this condition that has so greatly impacted my life. Everyone was so open to learning, and those I spoke to who didn’t have POTS themselves had lots of questions about everything from symptoms to how I got POTS to if there was a way to tell when I was going to be feeling bad (sadly, there isn’t). Our eight vendors were fabulous and perfectly suited to our cause: Arbonne, Bathologie, Isagenix, LulaRoe, Mary’s Faux Gami, RealFlexi, Stella and Dot, and Tastefully Simple. Wellness and health were an overarching theme, and they seemed just as grateful to be there as I was to them for their presence.
That morning I walked into the brewery with my stomach in a ball of knots. It was foggy, with a chill in the air, and I was terrified that no one would come. As the event proceeded I fell in love with what I was doing. Talking to people and socializing and spreading awareness, what could be better? I felt like I was walking through a dream as the morning went on. I always hear about how people don’t believe you when you say you have an invisible illness, and try to set you apart from the average person, treating you differently. I was treated with nothing but respect, and was floored when my uncle announced that he would be donating 10% of Independent’s sales for the day to our cause. Before I took the mic, I ran (which means I walked with haste because running is just something I can’t do), to my friends who were there supporting me and announced to them that I couldn’t do it. I couldn’t stand I front of these people who were so much older and more experienced than I was and try to make them understand or care about Dysautonomia. They looked right back at me and told me no, you’ve got this. My mom took a picture of me as I grabbed the mic and asked everyone to move into the other room, and to say I look terrified is an understatement. But as I started speaking, something changed. That shock of nerves disappeared, and was replaced with eagerness and enthusiasm. Fun fact about me: I love public speaking. And I can’t wait to do more of it in the future.
Thank you to my amazing aunt and uncle for letting us hold this event at Independent and for their donation to the cause, our amazing vendors, Mylene, RealFlexi for help with coordination and ticket sales and everything else Lisa and her team lent a hand with, my friends and everyone who came out to support me and help raise awareness, and my family for not telling me I was crazy when I said I want to have an awareness event for POTS and do yoga at the brewery. Mylene can be contacted at http://facebook.com/bloomingyogis/ where she wrote about her experience at this event. She was a dream to work with and I hope to do so again in the future. Go check her out!