Lungevity

Death. Dying. Dead.

I know — they’re not easy words to sit with. You might even wonder why I’m writing about this at all, especially when the purpose of this site is to offer comfort and care.

But those words, heavy as they are, carry a truth that many of us with chronic illness can’t avoid. Living with a life-limiting condition — and, in my case, facing death head-on in 2024 — means I’ve had to confront what most people spend a lifetime trying to outrun.

There were days I was paralysed by fear. The kind of existential dread that keeps you up at night, asking questions you’re not ready to answer.

Pain, exhaustion, and uncertainty took a deep toll on my body and spirit. Death anxiety wasn’t an abstract thought — it was an ever-present shadow.

It took time, space, and a lot of care to unpick the fear and move toward peace.

I was caught between two impossible choices: a life-saving, but high-risk, lung transplant… or the slow progression of my disease. I was exhausted. The idea of more “fighting” felt unbearable.

But over time, I found clarity. I reframed the narrative. I stopped seeing my life through the lens of limitation — and chose a second chance at living.

That choice didn’t mean I no longer feared death. But it meant I was ready to understand it more deeply. And one of the most helpful companions on that journey was a book called Staring at the Sun: Being at Peace with Your Own Mortality by Irvin Yalom.

“Though the physicality of death destroys us, the idea of death saves us.
Death awareness may serve as an awakening experience, a profoundly useful catalyst for major life changes.”

Yalom’s work leans on philosophy — something that resonates deeply with me.

My sister, a natural philosopher and one of my greatest teachers, helped guide me through the darkness with her emotional wisdom, presence, and love. With her, I began to find a way back to myself — and to a life worth living again.

Yalom often quotes Nietzsche:

“Amor fati — love your fate. Create the fate you can love.”

Even in circumstances outside our control, we still have the freedom to choose our response. That’s where power lives.

Another line stayed with me:

“Keep in mind the advantage of remaining aware of death, of hugging its shadow to you. Such awareness can integrate the darkness with your spark of life and enhance your life while you still have it.”

It echoed what I’d learned from Nothing to Fear by Julia McFadden (which I wrote about in Essential Reads for Chronic Illness).

The more prepared we are for death, the more deeply we can live.

Facing these realities doesn’t mean giving up — it means showing up. With clarity, courage, and care.

It’s also what inspired me to deal with the practicalities — writing a Will, setting up Power of Attorney.

You’ll find dedicated guides on those topics here, too. These acts aren’t morbid; they’re empowering. They honour your needs, protect your voice, and ease the burden on those you love.

Yes, it’s daunting. But you’re not alone. And facing it doesn’t have to be grim — it can be tender, liberating, even sacred.