The sun’s been out for a while now, bringing everything and everyone to life, like a shower of energy. It makes me leap out of bed in the mornings, warms my skin, and soothes my soul. It fills me with hope! Yet, I’m in an odd place emotionally right now – probably because I’m a bit unwell.
I’m surrounded by people who care about me deeply, but still, I feel quite lonely. I find myself struggling to integrate the implications of this high-maintenance disease into the rest of my life. life has become very fragmented, even though my failing health is no secret – what I show outwardly and what I’m stuck with when I’m alone are two completely different realities. Who do I call when I’m on the sofa, and even just having a snack seems like too much work for my breathing? When I think about the things I want in life and fear my wishes aren’t realistic? When I feel the progression of cystic fibrosis or ponder mortality?
I have a profound awareness of how quickly life can change and how fragile and brief it is. I want to make the most of it, make a difference, and effect change in the world. I want to experience life and give back all I can, feel amazement and create moments of wonder – more moments. I want to sing, dance, love, and laugh – every day. I want to feel empowered and never lose sight of what’s important in life. I want to understand how I can truly fit in as my lungs fill with anti-life while the rest of the world gallops down the road at a pace I can’t possibly keep up with.
I want to live boldly.
There are days we live
– From Blossoms by Li-Young Lee
as if death were nowhere
in the background; from joy
to joy to joy, from wing to wing,
from blossom to blossom to
impossible blossom, to sweet impossible blossom.