Air inside your tubes rotates. It breathes. It swims. It gasps woosh woosh woosh woosh
This is going to sound shocking: requiring bicycle riders to wear helmets is like requiring women to get hysterectomies to prevent pregnancy in the event they are raped (I thought of this very silly idea to illustrate how silly I think the idea of helmet legislation is). Requiring women to get hysterectomies to prevent possible pregnancy does nothing to stop rape, does it? Does requiring people to wear helmets stop people in cars from hitting them?
I have been getting sick a lot. I’ve missed a lot of work. But I can still ride my bike, just not too fast and not too far. I am learning, quickly, how to refocus attention on myself. I’m learning how to love myself by action in addition to thought, and that means slowing way down even when I don’t want to because otherwise I’ll find myself in bed for days with full-body spasms. I’m learning to appreciate the view each morning before I carry my bike downstairs to head to work, or when I’m flat on my back. I’m learning how to enjoy any bike ride because it’s the most active I can be much of the time. Every painful time I swing my leg over my bike I know I’m about to feel much more comfortable as soon as I have my first down-stroke and am gliding smoothly on two wheels. My bike gives me freedom even in the midst of my daily, mind-numbing pain.
Sometimes more than others I feel more in control of my body and life. Though the past several months have had me sick more often than not, with cancelled plans and all my energy focused on accomplishing daily activities, I do feel more in control now - simply because I’m allowing myself the space to be aware of my needs. That’s right, my needs – strikingly different from my wants. Comparatively speaking, though, being and feeling in control, in my book, can still look a bit hectic.
I’m realizing I can’t take my body for granted anymore. If I don’t listen to my non-self-imposed limits (my body doesn’t get to make 'energy limit' decisions anymore), my quality of life drastically drops. I get sick. I miss work. All my energy is forcibly focused on the things that need to get done: work, eat, shower, rest, go to the doctor, take care of the bills. What’s missing? A social life, mainly, which, if you don’t have one it becomes quickly depressing. For people battling serious chronic illnesses, so much of our energy is focused on survival we don’t count on having fun or doing activities that bring us joy when we choose. I appreciate my bike because being on it allows me to be in control of something in my life, and since it is my main transportation it allows me to be active and to be around people who also ride bicycles - sometimes the only socializing I have the energy for. I’ve learned recently that the love of my bike is not just about my bike and me. It’s about the people who are riding beside me, too.
“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, 'Who am I to be brilliant, gorgeous, talented, fabulous?' Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” Marianne Williamson, from A Return to Love
In college my friend Jackie shared this quote with me and said it made her think of me. I think of this quote every time I share my story and every time someone shares their story with me as a result of hearing mine. After you finish reading this post today, share a glimpse of your story on instagram @pedallove/@forestfirebears and/or twitter @pedallove/@forestfirebears. I'd love to see what my readers have been up to! I'll start with some stories of my own:
I’m tooting my own horn a bit here, but I want to let you know what I’ve been up to in the advocacy world. This disease has been trying to hold me down – and succeeding sometimes – so I’ve been a lot less active in a lot of ways and I’ve been reassessing what it means to be happy with what I can and cannot do. At the same time, I’ve had a lot of opportunities to share my story with a lot of different audiences and that motivates me to continue fighting for better treatment and a cure for Ankylosing Spondylitis.
1) In April, I testified in front of the California Senate Health Committee about a bill that would make specialty drug costs more transparent on Covered California's website. This is an article on a NPR health blog highlighting my struggle, and this other is a YouTube video of my testimonial.
3) Melissa Balmer did a splendid job of writing a story about my struggle with Ankylosing Spondylitis, my advocacy as a model, and my need to keep moving by bike for the current issue of Momentum Mag. Read it here. I’ve heard “inspiring” more times than I can count after this article was shared, and I’ve been able to connect with more people with AS because of it. I can’t tell you how comforting it is to connect with people who get what I’m going through.
4) In June, I was featured in the Alumnae magazine for my alma mater, Meredith College.
Keep pedaling forward, beautiful. Yes, you! Until next time.
I admit it, I Love my Bike.
Don’t think of a noun when you hear me say Bike. Think of a verb. Think of state of mind, a compulsion, a lifestyle, a passion. Think about Love.
It caught me by surprise, as Love has a way of doing. And I was quite resistant to the idea of anyone Loving an inanimate object, much less letting it happen to me. But, there I was, fixing a flat tire on my kitchen floor when I began thinking of it as a labor of Love. And it hit me, I was overcome with emotional feelings towards my Bike. I knew this feeling, having fallen in Love before. But it was no less overwhelming. It would be grease on the chain for me to tell you I began sobbing on the floor cuddling my wheel like I’d found myself at last, but it didn’t happen that dramatically. Sorry to disappoint.
I admit, while some people really do LOVE and objectify their physical Bicycles (my friend Cynthia recently called this Holy Bicyclism – the worship of frames and carbon fiber and sleek design, etc), I am more in Love with the idea of my Bicycle. It’s not the old, heavy, steel Panasonic frame and basic tires and mismatched components and shiny rims (just because I recently got a squeaky-clean tune-up) and old-fashioned shifters that make my palms sweaty and my heart race, but rather any Bike I can call my own, even if it’s a borrowed Bike for a 5-minute ride.
My Bike is waiting for me after work every day to take me home, and though work is usually only 1.5 miles from home I still enjoy that transition ride to or from my awesome apartment in Midtown Sacramento to my job(s) right by the California State Capitol. My Bike takes me on dates for miles and miles along the American River Parkway and picnics two miles away at Camp Pollock and dinner less than a mile from home at Coconut Midtown and even the six [sometimes treacherous] miles to Habesha Ethiopian Restaurant in Arden Arcade to visit my lovely friend who owns the place.
And my Bike doesn’t get jealous or selfish when that date is with a person - the ride is no less enjoyable if I have to pedal at another’s pace. My Bike takes me shopping at Grocery Outlet in midtown and to pick up my CSA box each Friday. My Bike takes me shopping at the local thrift stores (I love the SPCA thrift store on E street in Midtown, Thrift Town on El Camino Avenue, all the Goodwills in Arden Arcade, and even the Boutique-y Goodwill on L Street Downtown), to church at Trinity Episcopal Cathedral (just 1.5 miles from home), to my doctor appointments, to casting calls and fashion shows, and it is always reliably waiting for me when I’m ready to leave. Let’s leave out the part where my Bike could get stolen, ok? We have a healthy relationship, my Bike and I. My Bike takes care of me, and I take care of her. While we depend on each other at a certain level, I’m happy when I’m with my Bike but I don’t make myself sick missing my Bike when I’m not in the same room with it. Yes, there are people out there who sleep next to their Bike. They have their reasons.
My Bike and I fit together. We’re used to the feel of each other – you know, that familiar fit and feel of a person with whom you’ve become close. Your scents mingle, you can pick up where you left off after a hiatus, and every movement feels smooth and natural and free and open. It takes work, yes, but it doesn’t feel like work because you enjoy it.
I’ve built a life with my Bike. Yes, I could live without it, but what would my life be like? Not as full, not as complete, not as whole, mentally. But, physically? Without a Bike? I don’t even want to think about it. I shudder at the thought of my body being stationary, immobile, unable to MOVE.
My Bike IS how I live; my Bike is how I Love. It’s not the kind of Love that goes away. It’s not romantic Love. It’s not like Loving your dog or your cat or even your medication because it prolongs your quality of life, but my Bike does do that for me. I can’t say it’s like Loving a person that reminds you why you are worth it, but my Bike totally makes me feel worth it. It’s a separate, self-aware Love that is actually created by ME. I’m the reason I Love my Bike, because I chose to live my life with my Bike as my companion. Make no mistake, I still desire the Love of a human partner – and I even hope to one day share that Love of my Bike with someone else, from “I Love my Bike” to “We Love my Bike” – because anyone who Loves me will be expected to Love all extensions of me. My Bike is an extension of me.
Falling in Love is scary. You learn a lot about yourself.
Falling in Love is amazing. You learn a lot about yourself.
And when it hits you, it doesn’t wait for you to be ready. When are we ever ready for Love?
I’m in Love with my Bike and you’re the first I’ve told. Happy Bike Month!
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?
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.
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.”
*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.
1) Women are the future of bicycling advocacy and bicycle lifestyle
Women played a critical role in the success of the summit, especially with the official unveiling of Women Bike by the League of American Bicyclists, as well as the unveiling of the new California initiative, Women on Bikes California/Pedal Love (that’s US!!!). Not to mention, in California many, if not a majority, of bicycle advocacy organizations are led by women.
2) Media outreach from all fronts is crucial to the movement
No longer is our movement about hitting the pavement and trails by foot or pedal. Bicycle advocacy’s increase in participation from the young and hip, plus the trend towards not owning a car and living in cities rather than suburbs, allows us an opportunity we cannot pass up to make bicycling something that everyone can do. We’re learning to use social media ourselves but we depend on the voice of pop culture media to advertise bicycling as more than just a trend - think People, Vogue, Oprah. Using media to spread images and lifestyles in biking far and wide inspires collaboration, hype, and a lasting impact on the way the country gets from point A to point B.
3) Biking is young, hip, but also necessary for so many other classes of folks. Bicycling is becoming accepted as a lifestyle, but we’re not there yet.
We’re no longer a state or a country that can look at bicycling only as a form of exercise or a competition – we need to expand our view to include everyone. That means everyone: those who commute (by choice or necessity) to work or school, those who ride just to compete or for exercise; those who are car-free…
4) Those passionate about bicycling want it to be fun
I heard the mention of safety far less at the summit than I expected. People were focused (to me, anyway) more on how to make riding a bike (I hardly heard it called cycling, and for me that was great because ‘cycling’ sounds like a sport, to me) not just appealing to anyone, but an easy choice. We need more bike parties; more social functions by bike; and more festivals, arenas, fairs, concerts, and rallies that welcome those who arrive by bicycle with perks and free valet parking. Yes, having good infrastructure should come along with that.
5) Bicycle Friendly Business Districts are the future of branding bicycling as a neighborhood tool for economic progress
Act Global, Shop local has been around for a while, but what an opportunity the bikeped community has to make this movement our own! What a concept in branding! With better bike parking (think bike corrals), better sidewalks, slower, slimmer roadways, and more gathering places in business districts (like parklets), the idea of Shop Local grows exponentially. Making it easier for those in surrounding neighborhoods to get to a business a mile away by bike means more money is spent in that same neighborhood. People have to try to NOT shop locally. Who knew it was so easy for bike riders to help save the planet?
6) We have to go to where the people are, not wait for them to come to us
7) Corporate involvement will make a big difference in increasing ridership by leading a true movement for all employers to follow
Google and Facebook both make it really easy for their employees to ride bikes. Now, they just need to work with those outside their campus. The companies that have it together in terms of being bike friendly need should branch out and provide support for other businesses that could use a helping hand. Besides, good press follows companies that help save the planet.
8) Bike advocacy is about community development
Grassroots. I heard that a lot during the summit. One person can make a huge change. For example –Jenna of Red Bike and Green http://www.redbikeandgreen.com/ started a fledgling social riding group for African Americans in Oakland. Now, Red Bike and Green has chapters across the nation. Jenna remains humble. I stayed with an AirBnB hostess, an African American woman who rides her bike to run errands and for fun. When I showed her the video from Red Bike and Green she recognized a man in the video as her neighbor. When she ran into him the next day she found out he is Jenna’s boyfriend – and he’s now going to knock on her door before every social ride to get her involved. That’s bike advocacy to me – connecting people and sharing stories.
9) Style – everyone has a style
There were vans, clip shoes, Van Heusens, heels, boots, Tom’s, slacks, skirts, dresses, ties, jeans, leggings, and some Lycra. More than what we wear, though, style when it relates to bicycle advocacy is how we carry our stories, our fights, and our reasons. Style is where we go, what we do, and how we react in the world around us.
10) It’s important for people like me to be at summits like this because of the way we see a bike functioning in our life
To me, a bike is a tool. I feel somewhat an outsider when it comes to bike advocacy – I guess I prefer not to label myself. This summit made me think that maybe – maybe I should call myself an advocate until I don’t have to anymore. Until we can all just be people, riding bikes.
And an extra thing I learned at the bike summit – you can take your advocacy resources everywhere you go. Just tow them behind you.
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.
My bicycle has always been a tool. It’s a means to an end; it’s my transportation, my trunk, my freedom, my way to move every day. It’s my outlet before and after work, my transition vehicle, my motion, my patience tester, my get-on-and-go ride to get away from anything to anywhere.
I began riding as a child - around age five - and by age six or seven I was commuting on my own around town, riding to Vacation Bible School and to handywoman jobs in my small 800-person town of Oriental, NC. I didn’t get my license until I turned 18. Even then I drove minimally. In college I had and drove a car but when it checked into the junkyard my junior year I didn’t bother with getting another until I had to, which was at the very end of my senior year at the cusp of entering t.h.e.r.e.a.l.w.o.r.l.d. I did it because I had to. My first jobs out of college required me to either use my own vehicle or a company truck – 75% or so of my duties revolved around driving. I only lasted a little over two years driving 50+ miles per day before it got the best of me.
I met a guy, then six months later sold or gave away most of my belongings, hopped on a plane, and moved across the country with him – my most valuable possession now being my class ring from my alma mater, Meredith College. Nearly two years later we are still car free. That was North Carolina, this is Sacramento. That was then, this is now. I made the conscious decision to live car free when I moved here. It’s not because I can’t afford a car (I can’t, but that’s not pertinent to this conversation), it’s because I got tired of driving and I got tired of depending on something I don’t need – I wanted to challenge my perception of need.
It’s also because driving physically hurts my body. Being in a car is isolating, environmentally murderous, and nowadays (to me) driving is increasingly more about socioeconomic placement, prestige, appearance, and speed – all opposites of my desired identity (I’m a sociologist, in case you’re wondering). Our society is becoming faster and faster by the week; the newest iPhones, Androids, e-readers, tablets and Macs are coming out faster than we can emoticon an overwhelmed expression. We haven’t even downloaded all the apps before we’re tossing yet another $700+ gadget in favor of the next one (we’ll have to talk later about where these newly unwanted gadgets end up). Why? Because the powerful media + technology relationship seemsto be spinning us round and round faster like a spool of thread unwinding, and we, for fear of really becoming unwound, somehow remain teetering upright with our newest purchases. We are a trash society – wasteful, impatient, and we judge today based on tomorrow’s news. Big Brother IS watching, and we’re either willingly or unwillingly performing for him.
S L O W S
so we can see the world around us. We can think on a bike (a necessity). A bike frame will last as long as we make it last – and if we get tired of it, we can alter it or trade it or sell it or give it away. That’s one of the ways we can combat the McDonaldization of Society (look up the title, it’s a book). Get on the saddle and get the lactic acid flowing, ladies – let’s partake in our own form of ‘out with the old, in with the new (the processed, the chemical-infused, the expedited life)’ with our ever-muscular legs; our grease and sunscreen laced sweat; our fashion; and our contemporary desire for choosing our pedal speed.
Bike riders, as a group, make up one of the most diverse of the athletic crowds. We’re a bit like feminists, who are often assumed to collectively have the same views and beliefs – there’s almost too much diversity. Vehicle drivers often expect we bike-riding women are all the same, so they often treat us all the same, much the same way that many in society expect all feminists to have the same view on housewifery and voting. Pair women and bikes and you have a society of vehicle drivers expecting a bunch of feminist cyclists with dirty tricks up their spandex.
I don’t vocally label myself an advocate or activist, but I am one by default. I’m a do-er; I don’t spend time ironing the “watch for bikes” decal to my kit or jersey (I don’t own any bike jerseys). I’d rather spend the time playing Tetris with my groceries so they all fit in the shopping basket bungeed to my bike rack, or chatting with other cyclists as we share the road or take the lane, or deciding whether I can wear the pencil skirt to work today without splitting the seams. I’d rather be talking to people about why I am car-free than yelling at them about the rules of the road.
Yes, I’m an advocate, but in more subtle ways. I always will be an advocate, whether it’s for bikes, sports, gardens, cats, crafts…just because they are all things I DO or that are part of me.
In a way, I don’t have a choice but to be an advocate – others perceive my expertise just because my rump is on the saddle, because my hands are digging in the dirt, or because I’m putting the recycling in the correct containers. I must be an expert if I’m putting an effort into something, right? Assumptions, you know how they operate. First impressions, labels, stereotypes: others label us even if we are not willing to label ourselves, and others will label us according to their perception of our actions or inactions. The question is, what am I willing to adopt as my dominant identity? What do I want people to see first?
All of the above is a preface to the biggest surprise of this post – my reason for writing, and my reason for riding (not that I started out that way). I’m sorry in advance for this, but without sharing this you would be missing a big part of my story. This labeling stuff, these perceptions from the outside world - it’s what makes me an expert in chronic disease, because I happen to have one. Surprise! I have a chronic disease!
Because I have a chronic disease, I am automatically the #1 informant and expert about it to those I meet, and their thoughts are formed based on how I handle being that informant. It doesn’t matter how much or how little I know; in their eyes, I know what I’m talking about. As I continue, think about how you tell and show others that you are a bike rider (or a mother, or a daughter, or a student, or a pilot, or a doctor, or a teacher), knowing that each person’s reaction will be dependent on how you present your story. Now, shifting gears:
I am in constant pain. Movement is crucial to my quality of life. If I don’t ride a bike, or run, or play soccer, or walk, I don’t MOVE. My body will become immobile. I have a rare, severe form of arthritis called Ankylosing Spondylitis. I’m coming out to you as a victim, a sufferer, a survivor of this disease that is characterized mostly by extreme, constant, achy or needle-sharp pain in many joints in the body but mainly the sacroiliac joints and the lower back. It’s an autoimmune disorder that is progressive; there’s no way to diagnose the disease before it begins to attack the body – no one yet knows exactly what causes the disease (though 90% of cases are considered genetic), so no one yet knows where to look for a cure.
I’ve lived with this for exactly half my life, yet I wasn’t aware that my symptoms since age 13 (double it and you’ll know how old I am) were obvious giveaways that I inherited my father’s disease until 6 months ago. Since he was physically abusive to my family when I was very young we don’t have a relationship, so I learned about this via email after contacting him with questions about health issues on his side of the family (I don’t recommend finding out health issues via email, FYI). I then had to find a private insurance plan I could afford, then a doctor who would refer me to a specialist who would prescribe me the drugs I need with minimal testing. We’re still working out the meds and meanwhile doing tests to see how far this disease has already progressed.
The worst part of AS is the fusion. Somehow, AS causes the body to grow bone spurs through a process called enthesitis (inflammation where ligaments and tendons connect to bone) and the spine slowly fuses together in a fixed, immobile position. Many times it forces the victim to live with a hunched back. Some refer to it as bamboo spine, others – for those Dorothy fans out there – call it the Tin Man disease. Exercise and movement (in addition to strong medications) are crucial to maintaining good posture and improving inflammation to slow the progression. Since I ride a bike every day (other than an occasional car or bus or light rail ride), it’s crucial to my well-being and quality of life. I rely on my bicycle to live because it forces me to move. What
does a bike mean for me?
What does a bike mean for you?