Why I Shout My Story

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.

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.

3 comments

  1. Gisele F Lapointe says:

    Keep shouting your story as it gives the young CFers the hope that they too will be lucky enough to have a transplant and live a long and happy life.
    My own daughter who was diagnosed at age 19 had that hope, in the meantime living a pretty normal life, studying, marrying, having children, but it finally caught up with her, her condition rapidly deteriorated and there was no time to have a full lung transplant, so she had a lobe transplant (one lobe from each her husband and brother). She survived 2-1/2 years and died at age 43.
    Twenty years ago it was pretty revolutionary to survive a lung transplant, let alone a lobe transplant.
    Now, I believe that a child born with CF has every chance to live many years because a cure will have been found.

  2. Mark Tremblay says:

    Gisele (my mom’s name too), I commend your “shout it from the rooftops” philosophy! As a 49 year old CFer in recovery from alcohol and drug addiction (32 years June 20th…woohoo!!) I too share your philosophy because I believe we as CF survivors we are uniquely suited to help bring hope to younger folks on the journey we share and normies facing long odds and tall giants such as the addicts I work with in my church ministry. In fact, I remember one time in particular when 1 was 45 and I had just crossed the finish line of the local CF Cycle for Life 64 mile course (in the middle of the pack…woohoo!!) when a man about my age and his young daughter came running up to me. I knew right away she had CF by the look of desperation in the man’s eyes and her cough. As I was taking my helmet and gloves off I so wanted to drop my bike and hug both of them. However, because of the 6 foot rule (what a cruel twist of fate that we can’t hug our fellow CFers who we’d so desperately want to embrace) I kept my distance and with her dad at my side I told her she too could live a long full life despite her CF which brought a huge smile to her face. But inside I was divided because I would never wish the hell I’ve faced to get here on anyone let alone that sweet little angelic girl. Nevertheless, because of the new modulators and the drugs that would surely be developed in her life time there is in fact new hope. And as I was encouraging her I prayed that her fight would not be as riddled with the bouts of pain and hopelessness that mine had been. Like you Gisele I quickly snuck away from the crowd to a place out of the way and cried because by age 6 if her life was anything like mine I had already been to three funerals of kids in clinic so I had become intimately familiar with death and hopelessness was my daily companion. However, now 32 years into my recovery I have newfound hope in my life and a far greater sense of purpose to be the CFer God meant be to be broken enough to empathize with other’s pain and hopeful enough to encourage anyone facing long odds and tall giants. – Mark Tremblay

  3. Carol says:

    I share my CF story when ever I can. I have two 508 delta genes. I am 61 years old but still enjoy life. CF is not fun and can be a lot of work but doing everything doctors say really helps!

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