Thinking about death is normal for me as a CF and transplant patient
What almost dying taught me about living
Born with cystic fibrosis (CF), I’ve been told my whole life that there’s a number on my head. I’ve written about my beef with life expectancy before, but to sum it up quickly, thinking about death and dying is normal for me. Mortality is a common topic of conversation in the CF and transplant worlds, so I’m used to talking about it. And contrary to the majority of the population, I’m not afraid of death.
That wasn’t always the case, though.
As a child, I was always hyperaware of my mortality. At the first hint of sickness, my young brain automatically alerted me that death was a possibility. The unknown nature of CF was terrifying, especially at an age when everything felt overwhelming.
Fast forward to six years ago, when I was 30 years old. I hadn’t planned on coming to terms with death, but as I went through the double-lung transplant process, it became real to me. The call for new lungs was beyond my control, and so was my erratic health at that point. I didn’t know what the future held.
What I learned from almost dying
I learned a lot during this season. I had to ask myself some hard questions, and all the “what ifs” floated through my brain. For me, a key element of the transplant process was surrendering fully to God and releasing the outcome. I was genuinely at peace with whatever might happen, which helped my mental state immensely.
At the same time, I had to believe that I would make it, no matter how hard the road was. In my experience, the power of belief has been radical.
During the transplant process, I found it hard to relate to peers who never thought about dying and lived carefree lives. Listening to complaints about trivial matters when my life was at stake was frustrating. I’d often felt isolated in my CF world, and that feeling increased as I transitioned out of work and awaited my transplant.
I developed various coping strategies during that season of life. I clung tightest to my faith when I was dying and felt God’s tangible presence in those moments of breathlessness. Journaling helped me process the heavy emotional matters surrounding dying. I clarified my beliefs, formed convictions, and set intentions for how I wanted to live.
Finding a therapist who could provide an unbiased, third-party perspective was also helpful. I read a lot of books that kept my personal growth sharpened. I participated in activities with loved ones as best I could. I laughed and cried — sometimes on the same day. My occasional dark sense of humor was definitely born from dancing with death several times. And above all else, it’s been essential for me to keep hope alive.
Even now, it’s hard for me to understand what it’s like to never have death cross your mind. Like, what do normal people think about?
If anything, nearly dying taught me how to truly live. My relationships have become more authentic and vulnerable. I take more risks, do things now rather than waiting, and appreciate the life I have.
Rumbling with dying is an essential aspect of living. We’ll all die someday, but none of us knows when that day will come. It happens to perfectly healthy people just as often as it does to those with serious health conditions. All we know is that death is certain — no exceptions.
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, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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