Tuesday, January 31, 2012

It's As Easy As Falling Off Your Bike...Repeatedly: My Lifelong Gross Motor Journey with Cerebral Palsy

My friends would ride around me in circles, encouraging my every step as I huffed and puffed up that asphalt incline. Still, I could see it on their faces. That look of confusion and impatience that only a seven year old could utilize with such poise and expertise. I always struggled to keep pace with my bike-riding buddies while I jogged to their houses up hills that would make the ones in San Francisco look like speed bumps. We're talking the Mt. Kilimanjaro of hills here. At least that's how I remember it.

Why not ride my bike too, you ask? Because I couldn't. It wasn't from lack of effort either. I wasn't physically strong enough because I have spastic diplegia, a form of cerebral palsy. Even though I tried to explain this to my closest friends, I'm sure they still wondered what the hell my problem was. I can't say I blame them. Who understands stuff like that when you're seven years old unless you live with it?

Developing my gross motor skills has been a daily challenge since I was born. I didn't learn to walk until I was almost 2, but that didn't slow me down. I used my forearms and crawled like a little snake, wriggling my body across the floor without a care. I could stand up with the help of our ottoman, pulling myself up with the ease of a seventh grade boy whose forced to do the "girl style" pull ups in gym class. Then my mom would put these huge headphones on my melon and I'd unconsciously start doing physiotherapy while rocking out to vinyl recordings of Willie Nelson, Bullfrogs and Butterflies, Disney songs and, of course, the Muppets.


From there I had heel cord lengthening surgery at 3 1/2 years old and a 6 month post op recovery that included a cast, leg braces and endless hours of PT. At least, that's what I'm told. I don't remember much of it, which is a good thing because my mother told me it involved a lot of excruciatingly painful appointments she struggled to watch me endure.




When the cast came off I started Bear Cubs Club, a summertime activity group where pre-schoolers had relay races on scooters and tumbled in the high school gymnastics area. I was having so much fun that it never occurred to me that this was a form of PT for my legs and body. Ah to have such a narrow and simple focus like that again would be pure bliss...

It wasn't until I was in elementary school that it dawned on me that I might be different than everyone else. Once a week I was pulled out of class to participate in adapted phys. ed for an hour with one or two other students who also had different physical challenges. We'd play skill games like who could dribble a basketball the longest, how far we could push ourselves from the wall on our seated scooters using just our legs and who could walk heel to toe around the perimeter of the gymnasium without falling off of the borderline. I loved it! Any chance to get out of class to play was a plus for me. That was until my friends started asking me why I left all the time. I guess it never occurred to me no one else got to leave class for "extra gym" like I did. Ah well, their loss.

Still...

I DID notice that I was always one of the last ones picked for games during recess and sometimes I wasn't picked at all, but I never really understood why. I had athletic talent...maybe not enough to warrant immediate "dibs", but it was definitely there. Sometimes I'd get bullied for limping or running awkwardly. I was always encouraged to try my best and never let either CP or Cystic Fibrosis define who I was, but I'm not going to lie...it hurt to be segregated and publicly mocked for something I had no control over. Moreover, I didn't understand WHY I was being mocked. What was so terrible about me that people felt the need to hurt me? Why did they care enough to make fun of me, but not enough to get to know me and perhaps even love me?

That feeling of exile has been a driving force in my life ever since. I was determined to help the world learn about acceptance and tolerance while proving that nothing would ever stop me from trying my best. Maybe I wouldn't always succeed, but I'd always give my best effort.

But that @#$%$ bike continued to haunt me as a constant reminder of how different I was.

My dad and I spent YEARS in the backyard trying to train my body to create the balance I needed to ride a bike without training wheels. Why didn't we try it on the street or driveway? We did a for a while, but it was UGLY. I'll put it to you this way: After countless hours or "riding", I'd come in the house with grass stains on every inch of my body, not to mention bruises and minor scraps on my shins and ankles from the steel toothed pedals. I shutter to think what would've happened if we HAD practiced exclusively on the driveway. Me thinks we would've been in the E.R. more than a time or two for something other than cystic fibrosis.

As I said, I'd come in from the backyard, my ego and body bruised but not beaten, and my mom would be there smiling silently with a hot meal or an ice cream treat to soothe my ego and distract me from the pain while Dad would pat me on the head and wait until the next day I was ready to try. In the meantime, I kept trudging up those hills to hang out with my buddies. Sometimes on a push scooter which made the trip home much easier (and almost unsafe I was going so fast). Other times, I'd get a "buck" on the rear pegs or the front handle bars of a friend's bike, but that never ended well because I still had to balance myself and ended up falling off the bike onto the street.

This went on for about 3 years until just before my 10th birthday. I don't know what clicked. I don't know if it was the KangaRoo velcro shoes I was rocking that day or the wind that was gusting at me from all angles, but I stayed upright as I pedaled. We all figured it was a fluke, so we stopped and had me start again. This was no fluke. I went from one end of our half acre yard to the other, pedaling like a madman. Granted, it was "bowling shoe ugly" and I was wobbling like a jello mold, but I stayed upright without help! Now to try it on the street...



Scared doesn't accurately describe my feelings when I looked down at that asphalt road. I was holding back so many tears they were leaking out the sides. I remembered how much falling on the street was going to hurt. About how embarrassed I would be if I fell riding around my neighborhood where so many people knew who I was and how long I'd been trying to ride a bike.

My dad was intensely encouraging me to start peddling even though I wanted to wait. He believed in me, but it was more than that. This wasn't just my victory...this was his victory too. I'm sure he was tired of pushing me around on the bike. I'm sure there were days when he just wanted to be done. So on the day when I finally balanced, that feeling of desperation for his son to be like any other 10 year old boy must have been all consuming. That there was something...just one simple thing like riding a bike that we could say we conquered...together.

My mom was as encouraging as she always was, but I think she was more worried about what would happen AFTER I started biking down the street on my own. The ability to balance and steer while watching everything around me was a new challenge and the thought of her son concentrating so hard that he unknowingly veers into the middle of the street and neighborhood traffic. Ugh. It even gives me the willies just thinking about it. I give my mom credit for never saying a single word or ever having a smidgen of doubt in her voice. When I told her I was writing this story, Mom told me that she had to hold back the tears when she used to watch me running up the hill behind my friends and how she couldn't wait until I could finally ride along side my friends. She just wanted me to be happy even if that meant bottling the fear and stifling her protective nature.

After surviving a few weeks of practice on the street just to make sure I was extra awesome when I finally showed my friends (thanks for the suggestion, Mom) it was time to get my first bike. I was told I could pick out any bike I wanted. All of my friends had cool trick bikes, so that's what I wanted too. Despite the fact that my only trick was not falling over....that's exactly what I got: A bright blue Performer GT with hot pink details. Of course, I fell off it instantly because it was completely different from the bike I was used to riding. I guess I had to do it once more for old times sake.

I remember the first day I showed my friends my new bike and that I could ride it. They were more excited than I was! I could finally come with them on rides into town! We could go have pizza together, go bowling, unknowingly rack up enormous late fees on video games rentals at the video store and consequently have that privilege taken away (sorry Mom). You know...just be a kid.

It's been 24 years since I learned to ride a bike and each time I go for a ride, wobbly as it may be, I think of how lucky I am to do so thanks to patient parents, bike helmets and a lot of luck. That's how truly precious the little things in life are. Whether you're the one riding the bike or you're holding on to the back seat, make sure to be present during those moments of successes and setbacks so you can appreciate them for what they are...

Milestones down the road of life.

Peaceful things,

Josh

Help Moganko Meet the Muppets For Cystic Fibrosis Awareness!

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5 comments:

  1. Way to make me cry, Josh. Seriously, that was very powerful and even though my heart ached for Little Joshy, I REALLY enjoyed that story. It was most definitely worth the wait, my friend.

    ReplyDelete
  2. You always found your way around everything you wanted to accomplish, my son. Your determination was fueled by your innate optimism and joy for life which was evident to me from the moment you were born. Many are encouraged by your approach, and some have been humbled. I am certain God will be very pleased, as I am pleased to be your mother. xoxox

    ReplyDelete
  3. Amazing story. It's also amazing to survive what you have and to make with such a great attitude. You should have your own reality show, not Kim K. But the world is unfair, isn't it, Josh. Keep delivering positivity into the world. It can use it.

    ReplyDelete
  4. I gave you a blog award!!!
    http://www.mycfjourney.blogspot.com/2012/02/liebster-award.html

    ReplyDelete

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