I can’t help but reflect upon past years and be filled with an untouchable gratitude for this moment. But, my soul also aches with an unspoken reality. A reality that every year seems to demand a bit more of me. That with every year comes a cost, both literally and figuratively - a cost for not only myself but those I love as well. It comes in the form of exhaustion, tired resiliency, instability, indecipherable complexities, and my body’s own will of inner-betrayal. It’s a cost reflected in two words that have the capability of silently existing below the surface of my outward appearance - making it difficult for myself to even fully fathom and accept its presence in my life. Those two words? Cystic Fibrosis.
As the sun kisses my cheeks and I feel the warmth of the spring embrace me, I have to keep the tears from overwhelming my eyes and emotion from overtaking my heart. Because for a brief moment, I let myself live in the moment while looking ahead to the future. To be truly real, living with CF is hard - mentally, physically, and emotionally. The hardest realization is that I know it doesn’t get easier, nor does CF “get better.” It’s progressive in nature no matter how hard you’re fighting every day. And sometimes, that continuous fight for mere stability can feel overwhelming and exhausting. Especially, when you feel CF silently tearing away at you, breath by breath.
My Sun-drenched Soul
Sometimes, all I want is to feel the unbiased embrace of the sun - merely existing in this beautiful moment for which my heart truly lives. A moment void of pain, lung function numbers, hemoptysis, and unanswerable questions. I take a deep breath and catch those tears from falling as I do my best to root myself in this very moment. But again, my mind can’t help but wander from the past, to the present, to the future - reflecting on how differently I feel in my own body from past years. I can feel the pace of my heart quicken as I think about how this body might feel next year, and so on. I think about how that affects the people I love. I stop myself from spiraling down that unknown and unforeseeable road.