I gaze through a frosted window on a mountaintop near Lake Tahoe. It’s a church youth group retreat. The students play in the snow, sledding and laughing. I’m sipping Earl Grey while scrawling notes into a journal — combined with snowfall, it’s a recipe for sentimentality.
I glimpse snowflakes and see each as representative of the unique story of a person with CF who passed away, diagnosed or not, so I pause to remember those I never met. I see the laughing students and remind myself that fun is allowed even when the CF community is steeped in death’s pool again and again — we seem to die in waves.
My lung transplant sparked an addiction to both life and death. The two forces complement each other perfectly, working in balance rather than antagonistically as most people think. It is when you taste death that you appreciate life; it’s when you live fully that you become comfortable with death as something natural.
I never felt more alive than when I was dying during my wait for transplant. My world was a tundra: cold, desolate, deprived of oxygen, surrounded by dead things. Yet, wildflowers sprouted here and there, defying the intimidating abyss, hope for future life in a hopeless place. In a place so dark, any stirring of life created a spark of joy. I was thrilled by my girlfriend’s laughter (despite being deaf), by the cat lounging in my driveway, by the father and his toddler son having brunch at a cafe, by how tall the tree next to my local library was. Close to death, I grew passionate for life, despite accepting that I would likely soon leave it.
As I sit here now, transplanted and in front of this frosted window, I realize I wasted much of my life by not spending more time sitting and doing nothing. Oh, how I tragically neglected the power of nature for most of my life. My eyes flitted between shiny, neon screen things and skimmed over the earthy, watery, heavenly things. I sat at the Grand Canyon as a kid with my head buried in a literary fantasy land, “Harry Potter,” when before me laid a land as wondrous yet much more real.
I live my life in repentance for these sins against myself, lusting after adventurous thriving while clinging to life by a split nail, which makes it all the more exciting. All adventures, regardless of risk and responsibility, call to me like sirens I can’t resist. My remote job privileges me with frequent travel opportunities — I can’t bear the thought of living mundanely in a cubicle for eight hours a day. Transplant rejection could kill me quite rapidly, and that’s OK, but I want to pass with my eye fixed on the Pacific Ocean or a Redwood tree or Yosemite’s majestic cliffs. And close my eyes knowing I’m about to see something unimaginably more beautiful.
The students continue to laugh in the snow and probably think I’m not having fun up here. I might look like the cranky old man who doesn’t leave his house window. I would have thought the same at their age, but I didn’t know death, and death is the greatest teacher of all. Coming close to death taught me that sitting here and gazing is as meaningful as playing in the snow.
But yes, there is a time for fun, too, amid the death that permeates my life. After all, I work with youth because they remind me of the importance of vitality and laughter. I tug on my coat and step outside. It’s freezing, but in a less harsh way than the hospital clinics froze me. I wave at a group of high schoolers and pick up a sled.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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