Q1) Tell us a little about yourself!
My name is Ryann. I’m 28, I’m a registered nurse with a background in ER medicine, a disability advocate, an adaptive athlete, a wheelchair user, and I also happen to be Ms. Wheelchair Virginia 2020. I was born with a genetic collagen disorder called Ehlers-Danlos Syndrome (EDS). EDS causes my collagen to be too lax or stretchy and that leads to all sorts of fun symptoms. The most obviously of these being hypermobile joints that dislocate easily. I was completely ambulatory until about 3 years ago when I started using a cane, then forearm crutches, and now my hips, knees, and ankles are too unstable to support me, requiring me to use my wheelchair to get around.
Q2) Tell us about what you do, and why you do it
As Ms. Wheelchair Virginia, I work to educate about and advocate for disabled persons all over the state of Virginia. Prior to Corona Virus this meant traveling all over the state to speak to different groups about my story and what it is like to live as a disabled woman in today’s world.
Now I am still doing my best to speak and educate, but from a more virtual platform, primarily through platform @chronically_ry on both Instagram and Facebook. I started Chronically_Ry as a kind of outlet to help cope with living with a rare chronic illness. When I was diagnosed at 16, doctors couldn’t really paint a picture of what my life would look like down the road and social media wasn’t what it is now, so I didn’t have anyone living with EDS to look up to. There were so many unknowns to cope with, it was very very scary. I started Chronically_Ry as a way to be that person I needed all those years ago. I want to be able to help newly diagnosed EDS patients realize that a diagnosis of Ehlers-Danlos Syndrome is absolutely NOT the end of their lives. I want to show them that it is more than possible to live a full and happy life with EDS, not to mention answer any questions they may have about living with this disability.
Q3) What makes you feel courageous?
I feel courageous when I prove myself wrong. I am my biggest source of limitation. Whether the act in question is something small like taking a shower on a day where I feel really unstable or something larger like joining a wheelchair basketball team. (Next up: living on my own for the first time in my life! Eek!)
Q4) What is one thing you wish you could tell your 16-year-old self?
That I know everything is upside down right now and no one can really give you any answers, but that’s okay. You’re okay. You won’t end up in a wheelchair by 20; you’ll be 26 and it’ll feel like someone gave you wings after years of walking with stones in your pockets. You won’t marry Cody, but you will get the lead in the Spring musical and people around town will still talk about it when they see you at Walmart 11 years later. Dance as much as you can with no regard for who’s watching you and most importantly, smile, sweet girl. Smile because you’re going to fuck up. A lot. But you’ll find your way. Life is short, but pretty damn awesome.
Q5) What is one piece of advice you can give a fellow lady who might be lacking courage?
Take a breath and look around you. See the good in the little things and feel the sun on your cheek. Remember the days when you thought you couldn’t possibly make it one more second, but you did. Tomorrow this moment will be but a memory. You are strong. You are brave. You can do this.