22 February 2012

{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. 



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 

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.


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.)


  1. two of my favorite women, I am eternally grateful for the example of all that is good, bad, beautiful and ugly that I hope my daughter embraces as whole heartedly as you both do, love light and blessings

  2. EVERYONE has a story worth telling. I spend all day trying to encourage (mothers in particular) to get to it. When you lose a mother, you lose your entire childhood. It's so vital that we capture our own memories and experiences in a form that can be passed down to our children, along with the times we share together whilst they are still young. This is our obligation, surely, to create a legacy for our children?

    I am the Founder of http://www.saveeverystep.com, which may explain why I'm so passionate about this subject!!!!

  3. beautiful and stunning story!