{guest post: why you should share your story}

Oh, I wish you could all sit and chat with my featured sponsor this month. Even if for a mere 10 minutes. She would change your life. Truly. I am miles beyond lucky (I don't think the word exists to adequately describe how blessed I am) to call her my friend. Her optimism in the face of Cystinosis and her powerful zest for life is extremely contagious. 

Enjoy!!!

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Hi everyone! I am so thrilled to be posting on A Happy Girl as one of her sponsors this month! In reality, Tahnie has sponsored me in more ways than one. According to Thesaurus.com, a sponsor is someone who helps, supports, and promotes. Aside from supporting me during times when cystinosis has pushed its way into my life front and center (and reminding me to more appropriately shove it back to the periphery), this wonderful friend of mine has also helped promote Roller Skating with Rickets, the memoir that I recently published about living with joy in the face of hardship.

Jess, on her third birthday.

I sincerely believe that we all have a worthwhile story to tell. When I shared with a writer friend over a year ago my intent to publish a memoir, she asked me to ponder this question: There are so many out there, so why would I want to read yours? I've come to the conclusion that people should read it, but not due to anything inherent in the story itself. Sure, my tale deals with living with a rare, genetic disease that previously (in the generation just prior to mine) was virtually untreatable and almost always took life before the age of 10; facing troubling unknowns; participating in a research study investigating a very foul medication; falling in love; hiding an eating disorder and subsequent addiction to diuretics; learning of the murder of my parents-in-law by their son, just barely out of his boyhood; feeling judgment placed on me by others (and likewise, unfairly judging those around me); and seeing the sagacity of leaving regret where it belongs: in the past.

Yet I imagine you have a story with at least as many, if not more, startling details. The more people I meet, the more I realize how much pain there is in the individual life, lived imperfectly.

Jess and husband Wayne on their wedding day

Surely we all have battle scars, and we thereby have much in common. So why should you read my story? Well, because perhaps our shared experience will inspire you to share your own.

And maybe, just maybe, I can inspire you to see joy regardless of the circumstances.

It's a lofty goal. We have to accept the reality of sadness in order to embrace happiness; just as light cannot exist without darkness (or at least the distinction would be totally unknown to us), so too does beauty go unrecognized without the ugly, the harsh, the problematic. No amount of rosiness in my glasses or yours can allow us to claim that we live in a world without pain. Even so, there is beauty all around us. Even in the ugly. Perhaps especially in the ugly. We only have to look for it. Dare I say it? There can even be so much beauty in terminal 

illness.

I'm a quote gal. Quotations kind of represent my Achilles' heel; I hide behind them when my own words are so woefully inadequate. So I'm going to leave you with two powerful quotes. The first, written by David Martindale in the August 1982 issue of Health magazine, is this: "Although it lacks the notoriety of cancer or heart disease, cystinosis is a killer, and all its victims are children."

The second was said by Swiss psychiatrist Carl Jung: "Man needs difficulties; they are necessary for health."

My friend Tahnie? She is one of the most beautiful, healthiest, inspirational adults with cystinosis that I know. That sentence is a paradox, and it's beautiful one at that. If you'd like to read more about the paradoxes of life, consider Roller Skating with Rickets and Other Paradoxes of Life with Genetic Disease. And then share your own story with those around you.

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Now through Feb. 23rd, enter code SWEET at checkout for 20% off. If you read it and liked it, can you help me spread the word? All proceeds will be donated to cystinosis research. (The coupon code does not impact the amount donated.)

{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!


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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.