Coming to Terms With Cystic Fibrosis
Last updated: September 2022
Cystic fibrosis (CF) isn’t always an invisible disease. Some of us have our tell-tale signs. Oxygen tanks. Insulin pumps. Chest scars. For me, I wear one of my signs as a scar on my arm from one of the multiple PICC (Peripherally inserted central catheter) lines I’ve had in my life. One scar never healed and expanded dramatically as I gained weight.
For years I hid the scar. It wasn’t particularly pretty and to me, it was a daily reminder of my struggles. I wore sleeves to cover it. Much like my CF itself, I hid it away.
Very few people knew about my cystic fibrosis in the first 35 years of my life. It wasn’t that I was ashamed. Realistically, I knew I did nothing wrong. Still, I didn’t want to be judged for it. When seeing me, I did not want people to see limits. I also was not one to draw attention to myself. Of all my friends- only a handful knew. At the time I didn’t want to be seen as different. I didn’t want to give CF the ability to interfere with my life more than it already did. I let my CF unsettle my confidence.
A change of mind
Within the last two years, my mindset began to change. A lot of things happened to influence that change. My almost twenty-year marriage came to an end, which flipped my world upside down. Around the same time, my youngest son was diagnosed with obsessive compulsive disorder. So, in a combined effort of trying to find out who this new me was and help my son cope with his own diagnosis- I suddenly faced my illness head-on. Eventually, I saw my illness, not as a weakness, but as a strength. I have looked near death in the face and said, “not today”.
In these recent years I suppose I’ve gotten more comfortable in my skin, although it’s still a constant struggle. I have to talk myself out of my insecurities. I'm learning to get out of my own head sometimes and stop building my fears into more than they are.
My scar was still hidden away though until last year when my youngest son told me he loved my scar so much that he wanted to get a replica of it tattooed on his arm when he was old enough. When I tried to talk him out of it and ask why he’d want to do that he told me- “It’s cool looking, Mom. It looks like a pair of lungs, plus it shows what you’ve overcome. How many people can say they’ve fought what you have?”
I may have cried a little. Here I was trying to help him learn to accept his diagnosis and he was schooling me on mine. Suddenly my twelve-year-old had me loving a piece of myself I’d despised. Just like that, I realized he was right. I'm a warrior and I guess it is a pretty cool scar. Now that I think of it- it does resemble the shape of lungs. How utterly fitting!
The months that followed consisted of me becoming more accepting of my CF. It is a part of me and while it does make me different, it also makes me a fighter. A survivor. Maybe I was born to stand out. We all are. I can’t change these parts of me and so I started the long journey of acceptance. I still have to travel outside my level of comfort to discuss my illness, but after I’ve watched other family members have to come to terms with their own demons, I realize how important it is to accept mine.
My scars may not be beautiful but what I have overcome and my ability to survive is. So, I decided to tattoo a dandelion by my scar as a reminder of my body’s fight. To remind myself that scar represents preservation, survival, and overcoming. It is growing a full life from where some may have seen little possibility- just like a dandelion.
A dandelion often grows in depleted soil. Yet, the dandelion grows there and enriches that soil. It makes life from what others viewed as poorly conditioned soil. That dandelion then grows into a flower that people make wishes on. I've come to love dandelions and my scar has come to be a symbol of a time the cards were stacked against me and yet, I still managed to bloom. My scar is a piece of me that was left over after I refused to give in. I am not erasing or covering this reminder, but instead, I am allowing it to be the ground from which my flower blooms. I chose to tattoo a dandelion alongside my scar to be a constant reminder of that.
Finding my calling
I believe in perfect timing and things happening exactly when they’re supposed to. Right around the time I became ready to be vocal about my life with CF I saw an ad posted looking for writers for cystic-fibrosis.com. I’d just finished writing a small memoir about my coming to terms with my CF when I heard back from them and so began my journey here.
Since then, I’ve dived into advocacy for CF. I’ve shared my story now with so many and finally just accepted while my CF will never define me- it is an important part of who I am. I’ve met such wonderful people along this journey- all with their own stories. I have learned to turn my passion for writing into something to share with the world. In accepting who I am I have found exactly who I’m meant to be.
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