19 July 2011

{big jumps} Jessica Jondle

I hope this series is motivating you to push yourself; always forward and always to be better. The sky is truly the limit when you turn obstacles into opportunities.

I am proud to have Jessica guest posting on the blog today; she also has Cystinosis so the two of us make up 2 of about 500 people in the United States. Crazy to think about, right? She is one of the biggest inspirations I have; she lives with this disease and yet she doesn't let it stop her from doing anything. Her book Roller Skating With Rickets is going to be a huge happening in our little community, as no one else with Cystinosis has written a memoir. (I hope to be second! ;)

Enjoy her post! She has such a beautiful way with words!


Hello! I’m so excited to guest post here at A Happy Girl. Tahnie is a huge inspiration to me – for her strength, her insight, and her perspective on living life to the fullest despite some fairly challenging circumstances. 

When she asked for posts on the topic of “taking chances,” I had to think a bit. I don’t consider myself a risk taker – not by a long shot – but I certainly have had moments that others perceive as a little ridiculous. 

When I pulled my own IVs out less than an hour after surgery in order to make it to school in time for a stupid (in hindsight) 11th grade calculus test. 

When I decided, out of the blue and to my parents’ horror, to change my major from Electrical Engineering to Middle Eastern Studies and Arabic. 

When I took a job teaching sixth, seventh, and eighth graders without ever setting foot in a classroom teaching environment. 

When I exposed my heart (something I don’t like to do) and began the process of writing and publishing a book about life with a rare, genetic disease (http://www.rollerskatingwithrickets.com).

But when I really think about the subject of “big jumps” and taking chances, I think of a school field trip I took to the woods.

No, it didn’t happen when I was in school. You may be thinking that we’ve all had them – school field trips. But I didn’t really take one until becoming an adult.   

Oh, I went on short field trips to museums and nearby parks. And not to criticize the educational value of these excursions, but museums seemed very mundane compared to the additional places my friends were able to experience: the week-long trip to the great outdoors in fifth grade. The eighth grade adventure in Washington, D.C. Yes, even junior and senior proms aboard a boat in the San Francisco Bay.

I vicariously lived through my classmates, always making up some excuse (never based on reality) for why I couldn’t go – and then imagining myself in their shoes as they described what tremendous fun was had while I was home lamenting my shortcomings. 

It’s not that I didn’t want to go on these trips. In fifth grade I was on so many medications that had to be taken every six hours around the clock that I feared what my friends might think at the sight of it. By eighth grade, I was adamant: no one must know of the disease that was slowly shutting down my organs. And by senior year, every other day was consumed by a four-hour after-school trip of its own: my regular dialysis treatments at Stanford Hospital. Non-dialysis days were dominated by complete exhaustion after a full day at school.

I just didn’t have the desire to be “that girl” on an excursion, the one who had to have special accommodations or medication or needed to sit down and rest a little more often than everyone else.

Years later, when I became a teacher, myriad opportunities for school trips presented themselves. This time around, people still didn’t know of my chronic illness, but I felt freedom to take such trips, aware that I was willing (although somewhat nervous) to be “that girl.”

The first trip I took was to the great outdoors – an overnighter in the Muir Woods, just north of San Francisco. I bunked with a group of seventh grade girls, officially as their chaperone and unofficially as their confidante during late-night conversations. I experienced all that I had missed out on 15 years earlier – the rustic accommodations, the morning hikes, the afternoon nature lessons, the cafeteria-style food. At some point in the trip, I realized that I wasn’t living vicariously through anyone, although my students were the reason we were on this adventure. I was living this too.

And so, when we reached an obstacle course with an narrow ledge 80-feet high in one of the amazing redwood trees, I knew that my days of vicarious living were about to be truly incinerated forever. Not once did anyone tell me that taking my kids to the woods required my own participation in any of the activities. It was an unspoken rule that I could simply sit on the sidelines and make sure that they behaved. But as we approached the tree, one of my seventh graders said to me, “Miss Britt, you have to do this!”

And she was right. I did. With all my heart, I wanted to do something that I had never done before – and I felt willing to do it in front of an audience. Unsure that I would even be able to climb the tree due to muscle wasting in my arms and legs (another side effect of having cystinosis), I somehow opened myself up to the fact that if I failed, I failed – it was a huge leap to accept that I might have to admit defeat in front of so many kids who looked to me as one of their role models. I surprised even myself when I made it to the ledge in record time. With my kids cheering me on – “Jump, jump, jump; you can do it!” – I walked to the edge with shaky legs and prepared to make my “Lion’s Leap.” I looked down at the smiling faces below me, though I soon heard only the loud clanging of my knees inside my head.

I turned my face upward and looked at the magnificence that was all around me. Redwood trees shot into the air as far as the eye could see. I knew that somewhere up there, just as my kids were doing from beneath me, God was smiling down at me from above. I had made it. It was a huge step in my life journey.

And with that, too frightened to leap and grab hold of the swinging bar that was about six feet out from the edge of the plank, I instead fell backwards and let the harness and ropes catch me. (And falling back into thin air was scary enough.) On this trip, I was content to simply have the new experience of making the climb. I knew that next time I would jump.

So where’s the risk taking in this anticlimactic story? Well, I knew that the potential was there to fail – and in some sense, I really did fail. I may have made it up the tree, but I didn’t make the leap. But I also achieved a huge victory by exposing my weaknesses to others, even if it was only a group of 12-year-olds. Add to this my fear of heights, and you realize that I actually made a huge leap without ever jumping at all.

But the real risk came the following Monday at school. On the first day back from a week-long trip, I did what I always do on Monday mornings with my students – let them talk about their weekends. But this time, I went first.

“I want you all to know that this whole weekend I was glowing,” I told my students. “I had so much fun last week with you. And let me tell you why it was so special.”

And with that, I told my students about cystinosis. I told them of my kidney transplant and my muscle wasting. I told them that I had never had the opportunity to go on such trips when I was their age, because I was so sick. And I told them that they had inspired me to do something I had never done before.

My leap was to admit that I’ve never been perfect. I am actually incredibly, ridiculously, hugely weak. And along those lines – my students told me how cool it was that I had someone else’s kidney inside my body. When I got home that day, I reflected on those words and I cried. I am so glad I took that jump with them, both in the woods and in the classroom.