All of us who are affected by cystic fibrosis have our own unique experiences. No two stories are the same, let alone our genetic mutations.
Taking it to the next level and looking deeper into what makes us who we are is risky, but necessary. Sharing the most vulnerable parts of ourselves reveals our authenticity and teaches others how to celebrate us in ways that ensure we’ll receive accolades.
Feb. 28 is Rare Disease Day. Prior to coming on board at BioNews, the parent company of this website, I was completely unaware how deep rare disease communities ran. It’s embarrassing to admit that I hadn’t heard of most of the conditions our columnists write about. The self-centered part of me thought I was the only one fighting a rare disease, and before joining the CF community, I isolated myself. That’s what happens when we get into our own heads!
Prior to my double-lung transplant over three years ago, I was isolated from those within my disease community and most everyone else. Joining the CF and transplant world, and now the rare disease world, has changed the way I see others and myself. It has highlighted how important community is, and how precious a gift it is to connect with others who are fighting similar battles. It also has radically changed how I interact with the world around me.
Immersing myself in community has taught me how differently we are intentionally created. It’s incredible to witness how each person brings a unique gift into the world. In the rare disease world, I have witnessed the powerful ways in which everyone braves their battles, brings light to those around them, and changes the way we all see the world.
I have the unique opportunity to see the world through rare eyes. I revel in the miracle of being alive each day. Planting myself in nature, beauty surrounds me. Simple moments aren’t so simple, like taking a deep breath outdoors, in the cool, crisp winter air.
I appreciate all of the things I get to do this side of transplant. I also know that this gift could be taken from me, which is humbling and makes me revel in magical moments even more.
Moments with loved ones hit me differently. I don’t waste time holding onto grudges, bitterness, or endless castigation. I want love, sincerity, and appreciation to permeate my being. This is a choice I must make every day.
Time is an interesting concept. It flies by or moves slowly depending on the season I’m in. One of my biggest goals is to be intentional with my time and avoid wasting it. Time is the sole asset we can’t retrieve or buy more of. And every moment is precious when they’re numbered (which all of ours are).
Life is fleeting, and having one shot to get it right hits harder because I’ve danced with death so intimately.
Everything appears more vivid when I’m living in the present. I’m not distracted by the past or caught up with fear of the future. I can simply be. Be present. Be in this moment. Soak up every ounce of the experience right in front of me.
I’m grateful for this rare life that I get to live. It has shaken me awake to the beautiful blessings that stare me in the face every day.
Having a rare mindset requires a shift in perspective. Focusing on what I can do rather than what I can’t has afforded me the opportunity to see my life as a gift. It also has taught me how to use what I’ve been given to the fullest extent, which keeps me focused on my own life. When we look outside our lives for validation, we are comparing our stories to others who have different paths. We cancel our blessings when we don’t appreciate how we can use our gifts for the greater good.
Creating a life in which I can be myself has been a true treasure. Once I broke out of the box of societal expectations, I fully embraced who I am. This comes with surrounding myself with those who acknowledge, support, and encourage me on this walk.
There’s no time for toxic relationships, gossip, or drama. My relationships in all capacities are filled with kindness, honor, and encouragement. Recognizing our differences and celebrating them together is vital. This is how we grow alongside one another.
I never asked for a rare disease, but I would choose this walk if given the choice. It has afforded me the joy of seeing the world through rare eyes and enriched my experiences in ways I never knew possible. Opening my heart to embracing this life has opened my eyes to the blessings in front of me.
I’m honing in on what’s truly important: God. People. Myself. And loving all three.
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, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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