“Hey John, you need one of those!”

If you know me or have followed my social media for more than this month, my love and joy in riding my bike is evident. I always relish the freedom my bike gives me, the effort of pushing my overly active muscles and the wonder of feeling my body accomplish this thing I ask it to, just in different ways than someone without CP.

There are (nearly) always comments when I ride, however and it is a complicated thing to grapple with…

My journey with biking has been a long one, one of watching, trying, longing, trying again and finally, arriving…Let me start somewhere near my beginning. I was born with cerebral palsy when my parents and sister lived in New Jersey. By God’s providence, I was born in 1 of the 2 parts of the US that had a neo-natal intensive care unit (NICU) at that time. Had it not been so, I truly believe I would not have survived my early birth, breathing challenges and all the growth that had to occur outside of the womb instead of those 7 more weeks within. I know I keep writing, “that is another story for another post”, but in many ways, this is. In time, I hope to write more of my story. This format feels right to me for snippets, essays and in my mind, a focused reason behind each post. That story? Well, that one could be novel of its’ very own….

Suffice it to say for this moment, that I was extremely blessed to be born where I was in the world, if not when (7 weeks premature). With all the both and in the world, I KNOW God is in it, through it and in him, all the reasons hold together. (And, I can’t wait to curl up in a big cozy chair with the BEST cup of tea and hear the reasons when I get to heaven. I don’t really know if it will matter at that point, but I DO envision his hug to end end all hugs and my big sigh of relief at his telling and understanding of ALL that it has been.) See, that by itself could be a novel!

Even though I know God holds it all together does NOT mean that growing up with CP, making sense and facing my own challenges WITH IT are easy. In fact, CP has been and will continue to be, my greatest teacher of Both/And. It is the greatest “normalizer,” (if that is even a word?) I will ever know, of having so many feelings at the EXACT same time….

You see, I don’t think I knew or felt different than anyone in my youth. I think it just WAS for me. I pranced on my toes for years, because my hamstrings and heel chords were so tight that was all I could do. But very young, my dad worked with me a lot to find my own walk and I think once I did meet those “normal milestones” (a bit later than the average person,) I think I took off. And my particular diagnosis was “moderate.”

I don’t know the day that it changed for me, the reality of different, (and the shame that came with that particular realization), but I can tell you I remember moments and feelings in my body.

We lived out in the country when I was little, on a dirt road, right next door to a pig and blueberry farm. Our ranch home sat back far from the road, up a long driveway and just past the pond my parents had put in. It was “better than a swimming pool,” our place for splashing, catching tadpoles, playing on innertubes and for my brother, catching fish. One day we even looked out the front window and saw one of the massive pigs from next door, relaxing and resting in the shallow water! Her owner had to dangle one of her bleating babies while as he sat, legs swinging from the back of his pickup truck to get her get out of the soothing water and hot sun. Slowly the driver drove while the owner called to the pig, baby crying, until they disappeared in a cloud of dust up the drive to the house next door. It was a sight to behold…

I swam, ran, played in the woods with the neighborhood friends. Still, as I grew, I had difficulty keeping up with my younger brother and his friends playing capture the flag, and envious of my sister and the other neighbor kids who could take off down our winding driveway in the woods on their bikes. I saw speed, freedom and fun as they hopped on effortlessly, yelled to one another and gathered speed. I think my mind compared it to flying!

I begged my dad to teach me. Begged! And bless him. We tried, and tried and tried. I would fall, cry, become afraid and then eventually try again. But I think after awhile, we both knew that this was one of those things impacted by CP that I or he could not will away. I was crushed and I think for the first time in my life, realized I was disabled and had some limitations.

That sting did not disappear. In fact, I think it festered. I had many surgeries, changing my bone structure so that I had the best possible outcome for mobility with my particular range of CP. It is SO different for each one of us, with similarities perhaps, but each case, (1 in 350 people) looks different than another.

I dreamed of MOVING this body – whether is was ice skating on our pond, swimming, running, later roller blading and yes, still biking. I felt both trapped within a body that felt chained and was so hard to explain and I felt “bad for not having CP worse,” as though I should only be thankful that I could walk, talk and function as well as I could, almost like survivor’s guilt only “moderate CP guilt.”

A few days before Christmas, mid-seventh grade, my parents rented one of my favorite movies from Blockbuster (Savanah Smiles.) I loved movies and this particular one was one I had loved going to see with my Gram in the theaters. I disappeared to our basement to watch it and was in my own little heaven. Suddenly, I heard my parents calling me upstairs. I was ornery to tell the truth. I climbed the stairs and then realized they were calling from outside in December. I am certain I became a bit more than ornery, but went anyway. As I opened the front door, I could not believe my eyes. Sitting on our porch was an bright blue, oversized tricycle with a big white basket in the back!

You might be thinking, really, in 7th grade? And I hear you… I don’t think it occurred to me to be embarrassed about a trike. I think the freedom (and flying) was first and foremost in my mind. I will never forget that beautiful thoughtful gift from my mom and dad, or the forethought they had about adaptation. My parents even got permission for me to ride that bike in the school hallways of my Jr. High that winter. Only once was I going so fast that I hit a corner and got my beautiful bike on two wheels and almost tipped. I learned that lesson, quick!

I rode that bike until I began to drive, literally FLYING. When we moved to Holland and our house was a stone’s throw from Lake Michigan, I was there nearly every day in the summer. It was joyous. But as I hit about 11th grade, someone yelled, “why you riding your grandma’s bike?” and it was like hitting a brick wall. Shame and pain took the joy right out of the bike and I retreated. I gave the excuses of driving, but I knew it was the mean comment in the middle of heavy beach traffic.

Years later, in my 20’s, my roommate’s parents came for a visit from across the state. They’d discovered “banana bikes” for rent by the beach. Jo (roommate) and Don(her dad) got talking about my challenges with bike riding, Holland’s beautiful bike paths and “how to get Stacy on a bike!” Don ended up finding one for sale and driving to get it for me. Again, the most meaningful gift! I am forever grateful. It sat low and had 3 wheels (almost resembling a Hot Wheels, remember those?) with a banana yellow mesh seat. I rode it for the next few years until it’s wheels almost fell off.

Then a few years into marriage, my husband and I wandered into a nearby bike store. There, gleaming in the window, was a long Sunseeker recumbent bike, fancy and new. I had never heard of such a thing! We talked for a long time about it and again, the truth? It was WAY out of our price range…and my husband got it for our anniversary anyway. It was a gift of being seen and heard, after hearing my longing about bikes for YEARS. He even outfitted it to pull a Burley when we had our daughter, then our son.

And, if I am honest AGAIN, I became complacent. It was a lot to get the kids tucked in the Burley, wiggle their helmets on, get the bike hooked up and THEN go for a ride… I was a young working mom and it was a lot to get up and go. It is amazing to me as I look back, how the desire for something was so big to me and then, once I had the means to go, it was easy to push it away “til tomorrow, then tomorrow and many after that,” because I was tired or it was too much effort.

Fast forward a few more years. My son began working at a local bike shop, learning from the best how bikes function, what is most helpful for each of us, in a unique situation. We strolled in and found a shorter, zippier recumbent and I was instantly smitten. That bike took us all on a journey of discovery, growth, health and connection in so many ways. I had a goal of riding 365 days the next year – the rides we all took! It was, FREEDOM personified. There is so much more to say, feel free to ask or comment! I love to talk bikes and adaptation…

As great of a start it provided, I quickly craved more power than my zippy blue bike was able to provide.

I’ve now upgraded twice, first to a Fat Tad (a present for my birthday, a shiny red recumbent with fat tires and more attitude!)

This past spring, after some wise conversations about the mechanics of my rides, I upgraded again, to a Fat Tad with pedal assistance. This provides a more consistent pace, the ability to cross streets, ride rough terrain and increase the effectiveness of my workouts. Each upgrade has provided a new truth in my heart: I AM able, capable and AN ATHLETE.

And…I at times have experienced some downright mean or nasty statements while biking.

It is not uncommon on the ride to hear, “Hey, honey, that’s the bike we need to get for your mom!” or “You better get some lights on there if you want to stay alive!” There are other variations of the same theme.

Last week, as I excited Windmill Island, a man was walking in, saw me and yelled a few cars down, ” Hey John, you need one of those!” He had slowed down, staring a bit at both me and my bike.

I slowed, knowing I was now the object of “show and tell.” This happens often and typically, I try SO hard to see these interactions as a chance to educate about CP, how someone could feel in this situation. Truly, I do…and sometimes I am just too tired to educate and listen.

I rolled near John, who walked slowly over to me, as quick as his body would let him and began looking my bike over. I’ve heard it said that for those who use wheelchairs, the chair actually feels like an extension of their personhood and it is very invasive when someone is the bubble of the chair AND the person. I can relate! My bike represents my personhood and freedom.

Person A proceeded to discuss how this would be a perfect bike for John and the assumptions ensued. I need to pause and explain my emotional response…typically, my husband will say, that I become defensive related to people responding with, “that looks like fun,” or the ever-present insinuation that an elderly person would have a much easier time on a recumbent like mine than on a standard two wheel bike. Occasionally, my husband will whisper something irreverent under his breath at the third (or seventeenth) comment, just to shock and humor me.

The truth is, my bike is magic, incredibly life-giving AND is damn hard work. All your momentum must come from your legs and core, without the leverage to stand up on the hills. It is not, a quick and easy ride. It would be very, difficult for anyone to just “hop on and have fun!”

I think my “frustration” in those moments, is that I want to be truthful and advocating and I never l want to assume about anyone’s experience. My experience with my bike has been interesting in terms of commentary and assumption. From, “you look very awkward riding that bike,” to “that looks like so much fun,” to “that is so badass,” to “oh, look at you, laying down on the job!” there are so many reactions. The generous assumption is that most people don’t intend to be insulting – most! Some do… and…the comments can be. I absolutely experience both.

How often do we experience that in other parts of life, that someone comments and our filter responds before our head and heart remind us to “assume the best about people around us?” It is SO hard to do….so hard. One of my favorite anonymous quotes says, “be kind for everyone is fighting some kind of battle.” I pray that today, you encounter kindness from yourself and from others. I pray that we can approach one another with the generous assumption that we are ALL trying our very best. And I pray that you experience freedom, awe and wonder in a way that only can be described as the presence of the Holy Spirt: sailing on a boat, swaying in a hammock hammock, sitting near the water, a hard run, riding horseback or like me, in a way that is different than others, but is your own passion and joy. I will be on my bike, because God is good to me….

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