Published: 30/07/2018


by Desiree S.

Life has this funny way of telling you things you can and can’t do, over and over again. As a child, we knew something was “off” with the way I acted, walked, and did other activities but we weren’t quite yet at a stage where we could pinpoint what it was. As I began hitting my five and six-year-old benchmarks, we knew I was gifted, just in different ways than others. I mean how many five-year-olds did you know that could pull their foot behind their head with no stretching before and no pain after? So as any normal parent, my parents put me into gymnastics knowing I loved the flexibility and feeling as if I knew something when everything else seemed so foreign to me. Gymnastics turned into competitive cheerleading which continued on into competitive figure skating. 13 years old and my hobby was now my passion, my joy, and my pride. I guess where I’m getting with all this though is now, at 25 years old and having competed for 10 years, it’s clearly taken more of a toll on my body, a little more so than a normal person.

Life with EDS is so incredibly hard. We are given these amazing talents and basically told we can’t use them. Although I’ve been blessed to have used my gifts of flexibility for many years to my advantage, was it truly in my best advantage? I never fully understood when doctors would tell me I may regret that later on. I knew I would age quicker, be in more pain at a younger age but at 25? It was extremely unexpected. I’m not here to tell you my warnings though, I’m here to explain to you how EDS has helped me.

Ehlers Danlos has changed my life, not all good ways but certainly not all bad either. I’ve gained so much strength in accepting things can’t always be the way we would like. I’ve been able to understand my body’s limits and when it needs a break. I’ve gained love and support through others just like me and that alone is amazing! Since August 2017, I was told I’d never be able to compete again due to needing a complex brain surgery for Chiari Malformation.

As I now sit here, in the ICU, I am writing to my fellow warriors, those out there struggling, or simply those feeling alone. Please know you aren’t, you’re stronger than you’ll ever know, and that these things that happen to us prove how incredibly inspiring we all are for still helping others.

Going into this surgery last week, my life was changed and turned upside down, in fact, my whole world was. I just had received my bachelors in early education, I was in kappa delta, I was an athlete, I was a coach, I worked with children. My life wasn’t perfect but it was good enough to keep me happy. I learned that all of those things I dreamed of as a child would never come true. You know? Those dreams you think about when your four? Five? Six? Where you have a family, a job, and are a “normal” member of society? Yeah, that’s not always the way it seems to go. So with nothing left, or so I felt, I gathered up all my strength and started a vlog. At first, it was challenging putting out there all my medical, my raw feelings, and my life story but then I began to think, “What it this helps someone else to feel less alone?” So I continued. As I did, I began to aspire more and more of what it could become. On my vlog, “Fighting for Freedom”, I started a new hashtag with “Making the UNknown, known” as there are so many things I’m sure we wish people knew. There’s so many stigmas, so much misunderstanding, so much confusion around chronic, medical, and mental illness and it needs to be addressed.

I went into this surgery not knowing if I would come out in a coma, or awake, or at all because of the drastic measures being taken. I was determined to leave at least some sort of mark on at least one person. So I packed up my art supplies, went to the local bookstore and sat there drawing up card after card of inspiring quotes with a new hashtag, “More than assumptions”. I placed 15 of these cards into books that had been a struggle for me to read (even though relatable) and felt like those reading them were maybe reaching for a sign or some love. I can tell you now, this is only the beginning and I’d love for more people to continue to help me with creating these hashtags, making them more known, making others more aware to EDS and what we deal with. Lastly, please please please never give up, there is always someone rooting for you, even if you don’t believe it at the time, and that’s something I’ve recently learned. If you ever need someone to talk to, I’m always here through my Instagram, “chronically.desiree” and be sure to check out the Vlog as there may be some help needed in bringing more awareness!

Always step out of your comfort zone, because it is then that we see how amazing the world around us can truly be. Stay blessed, Zebras!



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