Cystic fibrosis has slowly, but surely, been creeping and nosing into parts of my life previously untouched. Just the other day I was watching a morning routine video on YouTube. All I could think was, “Wow. That looks like such a nice and productive morning. I should make my bed like that every morning because I love when it looks so neat.” Then, I immediately remember that I would do that, except I instead spend the entire morning coughing and out of breath. It takes all my energy just to wake up and get ready in the morning.
Each step that my body takes in its cystic fibrosis progression gets more and more frustrating. It feels like each time cystic fibrosis tries to chip away at my personality, I have to fight back so hard to keep alive who I am. I remember feeling so defeated during my first hospitalization. I lost a little of my inner spark, but quickly regained it. Then, the first hospitalization that made me miss school. Then, the hospitalization when I realized my cough was never going to go away, not even for a short time right after an admission like it usually did. Now, people can identify me from afar just by my cough alone. Then, the three consecutive hospitalizations when I didn’t get better.
I feel fortunate that my progression has been relatively slow. I have historically been able to experience a decline and get used to that new baseline before another decline sets in. Though I feel like I’ve now hit the marker where I’m not ever going to get fully used to my baselines anymore, I’m still pushing and fighting to preserve what makes me, me. It’s funny, I would say that a lot of people see me as overly ambitious. It’s a part of my personality that I was talking about preserving earlier. I am always determined to live out my life in the best way that I can. I admit that this has been getting difficult. I’m finding it harder to find a balance between my disease and living my life, and instead, I have to make more choices — about how much to work, when to get treatment, how many activities I can handle in a day, using a wheelchair on hard days, and so much more.
Where is this line between living our lives and caring for our bodies? Do we cross that line to preserve our personality and happiness? Sometimes there is a balance, but sometimes we have to make a choice.
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This was originally posted on my column, Path Unknown, on Cystic Fibrosis News Today. My column pieces are posted every Monday. Pieces cover a wide scope of topics revolving around my life and experiences with cystic fibrosis.
