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CF Has Changed Me For The Good, Permanently

There’s a well known Maori proverb, made popular by Walt Whitman, that says, “Turn your face towards the sun and the shadows fall behind you.”1 I have always loved this quote in the context of my experiences living with cystic fibrosis. Maybe because the quote is simple and clear, yet provides a course of action in hard times?

I’m not sure why it’s left its mark on me, but it just makes sense in my mind. Over the years, I guess it’s become my guiding mantra in helping me cope with difficulty since grief, exhaustion, worry, and guilt try endlessly to drain the life from anyone living with CF.

Appreciating the little things in life

Ultimately, cystic fibrosis changes your life even when you try to deny it. It changes your personality, mental health, and hopes and dreams--not always for the worst, and surprisingly, sometimes for the better. I think having CF has changed me for the good because it has humbled away the toughness the world sometimes cast upon our personalities.

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This is the most cliche point I’ll make, but I think it’s cliche because there’s some truth to it: Facing your own mortality at a young age, makes you appreciate the tiny and insignificant joys in this world. Little things are made big when you aren’t sure how long or how far you’ll go before CF catches up to you.

CF has taught me how to hold onto little joys—a cup of coffee, a blooming garden, exhausting days of motherhood— and to go searching for them when I’m running low. I’m proud of my sense of appreciation and gratitude in everyday life. I believe those traits make me a happier and more optimistic thinker in the long run. That in turn has helped me continue fighting the good fight against the disease that raids my body.

Deeper sense of empathy

Having a terminal and chronic illness has opened my eyes to numerous types of pain people endure in this world. Granted, I don’t wear the world’s shoes so I can’t know exactly what others are going through, but I find it easier to feel others’ pain and grief because I have sat in those types of emotions because of CF. Connecting to other people’s hurt is a gift. I think it makes us better, more authentic, and kinder people. I always felt if nothing else positive came from living with CF, at least I was able to develop a significant source of empathy for the people around me.

Confidence in my uniqueness

Moreover, I’ll go months without explicitly mulling over the uniqueness of my situation and disease. CF is my normal, therefore I forget I am 1 of only 30,000 people with CF in the US2. In a country with 328 million people, I am rare and unique.

I think that fact has always helped me be who I wanted to be. Obviously, there’s been moments where I have succumbed to the pressure of the crowd, but my uniqueness in living with CF has fueled confidence in my decisions and desires. I have always known in the setting of a rare disease, I had the ability and the will to truly live.

Who am I without CF?

CF has undoubtedly left its mark on my personality. It’s hard for me to picture who I would be without CF. I don’t know any other life than the one I am living. And although it hasn’t always been easy or comfortable, cystic fibrosis has changed my life for the good, forever. Just as every cell in my body has been altered by its presence, I think some of the best qualities I have are a direct result of learning to find peace and growth with my disease.

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