Why I Shout My Story

A dad at the church I attend came up to me and said his newborn daughter had been diagnosed with cystic fibrosis. He looked tired; his motivation for telling me was mostly to ensure that the situation wouldn’t be a cross-infection problem (it isn’t yet, due to my transplant and her young age). I tried to smile lots and be encouraging. He said he enjoyed my sermon about how God gave me victory over my disease through a lung transplant. He found hope and my soul felt warm. I looked at his family later on and witnessed how our church community supports and loves them. I saw the baby giggle. Then I went to my car and cried.

I talked to a woman on Facebook who had attended school with me. We’d rarely spoken in school and fell out of touch after graduation. She messaged me to say her toddler son has cystic fibrosis. She reads my column, and it gives her comfort and hope for her son’s future. She said my life experiences have helped her to make sense of confusing situations. I read her encouragement and I felt good. I caught up on her son’s life from birth, through diagnosis and scary hospitalizations. I sat in a coffee shop and cried.

A friend introduced me to a neighbor whose baby son has cystic fibrosis. I was one of two CFers she’d met. She looked at my Instagram and saw my overposting, the numerous pictures of travel adventures with captions expressing gratitude for life. She told me that my posts remind her that disease doesn’t get in the way of thriving, that I should keep posting “too much.” I smiled a bit, stared at pictures of her kid, and read about his weight gain. I hoped she would keep posting lots, too. I laid on my bed and cried.

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I went to a science museum with another CFer who’d had a lung transplant. While there, we met a little girl with CF. She wore a pink mask and had wild, red hair. She ran through the room and came to a stop in front of her parents and me. They said my friend and I are adults with CF and had lung transplants. She didn’t seem to care. The reality of our rarity hasn’t hit her yet. That is good. I excused myself to the restroom and cried.

In August 2017, I wrote a letter to parents of CFers across the world. I told them to have hope that their child would have a future. I cried while writing it. I’ve cried 20 times since, each time a parent emailed me to say they hadn’t known they could hope, that they couldn’t see a future that could include smiling and success — until they read my letter. To this day, it’s one of my most viewed columns and the emails continue to trickle in.

It is true that this is no longer strictly a childhood disease, but yes, many of us are still children. Our little brothers and sisters. Yes, I have hope and happiness, and yes, I still grieve when I realize these little kids have long, hard roads ahead of them. But relief settles on me when I admire the love of their parents, and joy floods me when those parents say my story has boosted their spirits.

Sometimes I feel overly millennial or vain by posting too much on Instagram or writing a column about myself or speaking to church congregations about my victories over this disease. But it’s not about me. It’s about helping others. If I’ve been given this disease for a reason, I believe it’s so that I can use it to help others. So far, people have said they are helped.

That is why I shout my story.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.