I Am NOT My Disease

Pedal Love fell in my lap, conveniently, when I desperately needed a place to share my story with a wide audience that would listen. My bicycle.  My bicycle. My bike has allowed me to maintain some of the independence I always expected I would have, but that I feel is rather quickly being squeezed out of me. I am still struggling with a sudden, scary, painful, health diagnosis barely over a year ago (has it already been that long?).  Let’s play a memory game – do you remember the name of my disease?  You’ll have to keep reading to find out if you got it right – gee, what a tease.  

I may struggle swimming a lap at the pool (oops, I always have!), or playing soccer for more than 5 minutes, or even getting up in the morning, but I can always get on a bike (and you can too, there are bikes made for EVERYONE).  And I know that bike will get me where I need to go.  I think I speak for any woman, any person,  who has ever enjoyed a bike ride (or has yet to do so), when I say that getting on a bike should be as easy as getting on and riding without having to think about the obstacles that could get in the way. Whoa, Charis, don’t jump on the soapbox just yet!

Think you have a good reason NOT to get on a bicycle? There’s no reason the following two people should be as active as they are, right? I mean, they’re living with a lifelong, progressive disease; what makes them want to be active now if they know what their future looks like with a hunched back and continuous loss of function and flexibility? Why should they even try? Meet two of my new favorite people whose stories remind me every day that Movement is Crucial:

And 30 year young professional triathlete Helgi Olafson.

Well then, what excuse do you have not to get on a bike?  And have you remembered the name of my disease yet?

Charis modeling recently at Sacramento Fashion Week.

Charis modeling recently at Sacramento Fashion Week.

Having a chronic disease has made me see life completely backwards compared to most people I know.  Most of us work so that we can retire, so we can travel and enjoy life, etc, after saving up all that hard-earned money for 30+ years.  Well, I see myself having to do the complete opposite.  Enjoy life now while my body can, and prepare for a life later that may just be miserable. Don’t plan around retirement.  Plan for now. Be a model now so I have good pictures to cheer me when I’m hunched over and walk like Quasi Modo.  Travel now because flying in an airplane in 20 years may not be possible.  Ride my bike as hard as I can now because in 10-15 years (or sooner? Eek!) my lungs may not allow me the freedom.  Work less hard at the serious things so I can value the time I have with my precious body (ok, so I’m still learning). 

Ankylosing Spondylitis (did you guess it?) is unforgivable, unpredictable, and downright frightening.

My condition has caused me to think about what impact I really want to have on my own life, other lives, and the whole world – and that is part of the reason I live car-free. I have no desire to contribute to poor health, environmental damage, and the fast-paced life, so I’m doing all I can to step lightly.  If I can cause just a few of you to consider taking one more ride on the bike – just to try it, or just to have fun, or to get somewhere normally accessed by motor vehicle…no matter your reason (but everyone does have a reason), then it’s worth the hours and care I put into blogging.

Charis in one of her brand new modeling images by Ikona photography.

Charis in one of her brand new modeling images by Ikona photography.

I hope Pedal Love becomes a well-known storytelling platform that encourages people to explore their own pedal love through laughter, tears, joy, and de ja vu.  Storytelling is such a powerful engine that should never be lost, so it's highly valuable that we're extending this opportunity across California to help tell and share stories.  I'm excited that we have such a diverse creative team already and I can only see that expanding into something that could reach nationally and internationally.

Say it with me: “I am worth it, I have a story to share, and I haven't lost sight of the person I have always been.”

*Do you have Ankylosing Spondylitis too?  Give me a shout-out on my facebook page or twitter @PedalLove or my personal one is @forestfirebears.

*want to read my AS story (last updated March 2013)? http://thefacesofankylosingspondylitis.com/a-s-face-0914-charis-hill/

*Care to donate in my honor? Arthritis Foundation: http://sacwalktocurearthritis.kintera.org/charis or Spondylitis Association of America: http://www.spondylitis.org/store/memorial_gift.aspx

About Charis Hill

Charis moved to Sacramento in November 2011 from Raleigh, North Carolina, where she graduated from Meredith College in 2009 with a BA in Sociology and minors in Psychology and Women’s Studies. Prior to working at the Support Services Coordinator for the Sacrament Area Bicycle Advocates she worked with Easter Seals United Cerebral Palsy as a job coach for people with disabilities for a couple years after graduating, then as a professional mover for a short while both before and after moving to Sacramento. She does not own a car and either walks or uses her bicycle around the county. In March of 2014 she is attending the national Arthritis Summit in Washington D.C. and speaking on behalf of those suffering with Ankylosing Spondylitis.

 


 

Charis Hill

Charis is a car-free bicycle advocate, healthcare advocate, and fashion model living in Sacramento, CA. A native North Carolinian and graduate of Meredith College in Raleigh, NC with a B.A. in Sociology (minors in Psychology and Women's Studies), she has lived in Sacramento since late 2011. Charis lives with a severe, progressive, autoimmune disease called Ankylosing Spondylitis; her bike keeps her moving which is crucial to maintaining her current quality of life.