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!

http://www.mogankoforcf.org

Click here and Join the Moganko For Cystic Fibrosis Awareness Facebook Fanpage!

Tuesday, January 3, 2012

Random Thoughts On My Return To Joshland


I've missed putting words-to-blogger in the past few months. The writing process helps me relieve any stress I'm carrying, though I don't think you would've enjoyed reading anything I wrote during my sabbatical. Every word I ever tried to type was lathered in so much angst and bitterness, stress and fatigue, self-doubt and frustration that even I hated reading it. That's why I decided to spare you from that pain. Consider it a late holiday gift. Now let's get to the random thoughts and mini-stories, shall we? Be warned...I'm all over the place in this post:

• For those of you that don't know, my Dad passed away from cancer this past summer. He's the second of the 12 brothers to pass away, but the first one to do so as an adult. Their brother,Gregory, passed away when he was just a baby. Dad has been gone for 4.5 months and his absence was never more obvious than on Christmas Day when the brothers were putting their presents in the middle for our "white elephant gift exchange" and there was one present less to count. It made me miss him a lot. I guess what I'm trying to say is even though I had a nice time at all of our holiday gatherings, this Christmas kinda sucked. I'm sorry if that disappoints any of my loved ones reading this, but it's the truth.

• On New Year's Eve I watched children of various shapes and sizes run rampant through a friend's rec room like a giggle-filled tsunami that was ready to envelop any adult that crossed its path. Moganko got lots of hugs and kisses, but he also acquired some drool and cracker crumbs for his trouble. I saw the contentment and chaos in all of their parent's eyes, followed by shrieks of "Aaaaah nooo, nooo, nooo, that's Ava's sippy cup! OOOOOOOH!!! Watch out for that puzzle piece! HEY! Share or you get a time out!"

During one of my many timeouts, I looked around the room and realized that I will never have that chaos in my life on a daily basis. Part of me felt relieved and part of me felt very downhearted. I don't believe in absolutes, but New Year's was pretty heavy realization that there will be no kids of my own in Joshland. While it's of my own choosing and I'm tearing up just writing that sentence, I still feel a sense of peace with what we've decided.

Joshland Note - No, I don't bring the puppet everywhere. Carly would kill me. I do bring him where the kids are though. To do anything otherwise would be sacrilege.

• Someone recently asked me what it's like to be a celebrity and I said "When I meet one, I'll ask them." Me, a celebrity? You've gotta be kidding! I'm just Josh. Always will be. I'm not gonna go off on another tangent about this topic, so you can click here read my previous thoughts on my "celebrity status" (and I use that term VERY LOOSELY). I prefer the term my friends Jeni and Emma came up with for me during a delightful late morning coffee/hot chocolate discussion. Jeni said "Josh...you are superbly human." That is everything I ever hope to be. Put it on my tombstone next to "It's a shame you aren't bigger..." Thank you, ladies.

• My pooches are SO GLAD that the Moganko CF Project has launched. I haven't had the extra time for them that they are accustom to, so they were pretty ticked off. How do I know they were mad? Have you ever been in a staring contest with a dog that believes every second you aren't doting on him is a cardinal sin? I have been for months on end and it's frightening! Adorable, yes, but frightening all the same. The night after the project launched, I spent the entire evening on the couch with Henry, our mini schnauzer, catching up on the months of backlogged doggy snuggles.

Oscar, our skiddish cairn terrier, was more subtle in his disapproval. A chewed up pen here or a munched on kleenex there with shreds of evidence strewn across the floor. I didn't have to worry about the lack of snow in December because it's been "snowing" for months in my living room. Oh, and let me tell you...there have never been two happier dogs on the planet than mine were on the day the green screen was torn down for a filming hiatus. The basement was wide open for play time again and I believe the term "run yourself stupid" applied very well to my little simpleton puppies. It's nice to be back with my own kind. They're like their owner...very sweet, but not so bright.

• In Joshland "Skinny Jeans" are just called "Jeans". That is all.

• Last, but certainly not least, Carly and I just celebrated our sixth anniversary! I won't gush over my wife the way I normally do because she gets embarrassed. Instead, I'll make a short list of some stuff I've learned about our marriage in the past six years:

— Our personal definitions of "a clean house" are very different.

— I'm still struggling with the whole "rinse out your milk glass" thing, while she will never understand why we need 18 remotes for the electronics in our house.

— I publicly vow that if Carly is working on any kind of art project and she asks me my opinion, I'll never again say: "What IS THAT?" Sometimes I'm an idiot. I'm sorry, honey. I swear, I didn't mean it the way it sounded.

— Did you know that if your wife buys enough purses and stores them in your bedroom closet that they'll actually start breeding? Well, they do. (She could say the same thing for my baseball caps).

— When it comes to helping Carly choose outfits, I'm not a very good assistant. I do get "pity kisses" though...which is nice.

— Carly wins A LOT of our tiffs and "discussions". This used to piss me off until I realized that she tolerates so much of my stuff—the good and the bad—that I just need to let things go. Now I pick my battles and I have a much higher winning percentage. It only took me six years to learn that. Awww yeah!

— Carly is a very private person and prefers to stay behind the scenes of my "CF Josh" life, but trust me when I say she lives through all the highs and lows of the CF Community right along with me. She asks how people are doing and she is there to listen when I need to vent about my day. There would be no blog, no Moganko and no "Moganko CF Project" without her support. She supports the CF Community best by being my anchor back to my life "Before Joshland". She reminds me that balancing those two worlds is the most important thing I can do to be present for everyone in my life. Carly is the kind of person I hope everyone in the CF Community finds if they are looking for a partner to share their life with. I've said this before and I'll say it again: She makes me a better man. I love you, sweetheart. Sorry...I got mushy after all.

I've got a stories on tap for the next few months so, stay tuned. I'm glad to be back...spelling, grammatical and punctuation errors in tow. :-D

Peaceful things,

Josh

Help Moganko Meet the Muppets For Cystic Fibrosis Awareness!

http://www.mogankoforcf.org

Click here and Join the Moganko For Cystic Fibrosis Awareness Facebook Fanpage!

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Peaceful Things ~ Josh
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