He Helped THOUSANDS Face Death! Now It’s HIS Turn? | Stephen Jenkinson
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INTRODUCTION
What happens when someone who has spent decades teaching about death and dying is confronted with a life-changing diagnosis of his own?
For years, author and former palliative care professional Stephen Jenkinson has helped people examine mortality, grief, and what it means to live well knowing that life will eventually end. After being diagnosed with Parkinson's disease, those questions became deeply personal.
In this conversation on the Inspired Evolution Podcast, Stephen reflects on living with a degenerative condition, the uncertainty it has brought into his life, and how his understanding of grief, hope, joy, and time continues to evolve. Rather than offering a formula for overcoming difficult experiences, he invites us to develop a more honest relationship with them.
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Learning to Live With What You Cannot Control
Stephen is careful about how he describes his diagnosis. Parkinson's is a degenerative condition, but he doesn't consider himself to be actively dying from it.
Instead, he is learning to live with ongoing change.
One of the simplest pieces of advice he received after his diagnosis was to expect "good days, bad days."
It sounds almost too obvious, but Stephen found freedom in accepting that his experience wouldn't follow a predictable emotional or physical trajectory. Some days would feel manageable. Others wouldn't.
He compares it to being on a boat in rough water. Fighting every wave doesn't stop the waves from arriving—it simply adds another layer of exhaustion.
That understanding became particularly important during the first months following his diagnosis, which he describes as one of the most sustained periods of sadness in his life.
Yet Stephen doesn't describe the experience only as terrible. He returns to the older meaning he hears inside the word "awful": something capable of filling us with awe.
Awe doesn't require pretending suffering is beautiful.
Instead, it acknowledges that certain experiences are so profound that ordinary categories such as good and bad may not adequately describe them.
His diagnosis has also raised an even deeper question: Where does the self actually reside?
When another part of the body changes, we can often maintain some distance from it. But when a neurological condition affects the brain and mind, the boundary between "my illness" and "me" can become harder to define.
Stephen doesn't pretend to have resolved that question.
Instead, he continues to live inside it.
Grief, Love, and the Limits of Hope
Stephen's experience eventually became the foundation of his book Trembling Still, although he didn't initially intend to write a book.
He began simply by writing.
The journal entries weren't created for an audience or designed to produce an inspirational narrative. They were a way of living through what was happening.
When those writings eventually became a manuscript, Stephen resisted transforming them into a conventional story of adversity followed by triumph. Doing so would have imposed a resolution that he hadn't actually experienced.
That same resistance to easy reassurance appears in his complicated relationship with hope.
Stephen questions whether hope can sometimes pull our attention away from the reality immediately in front of us. When we require the future to become better before we can fully participate in the present, hope can potentially become another way of avoiding uncertainty.
His perspective isn't that everyone should abandon hope.
Instead, he asks whether we can remain present even when reassurance isn't available.
This becomes particularly meaningful when discussing grief.
Stephen uses the phrase "grief love" to describe the inseparable relationship between loving something and knowing that it can eventually be lost.
Grief isn't necessarily evidence that love has failed.
In many ways, grief exists precisely because love mattered.
This doesn't make loss easier. But it changes the relationship between the two. Rather than treating grief as something that interrupts love, we can recognize that the possibility of grief has always existed within loving deeply.
Stephen is equally cautious about another comforting cultural story: that suffering automatically makes us wiser.
Hardship doesn't guarantee transformation.
A difficult experience can invite deeper reflection, but wisdom still requires attention, honesty, and willingness. Pain itself doesn't do that work for us.
Keeping Grief Moving and Making Room for Joy
One of Stephen's most memorable metaphors comes from the word "harrowing."
A harrow is traditionally a farming tool used to break hardened soil apart so that it can receive water and support growth again.
Through that image, a harrowing experience becomes something more complicated than simply something frightening.
It breaks up what has become hardened.
Stephen connects this with advice he once received about living near moving water. The image suggests allowing sorrow to remain fluid rather than letting it harden into something immovable.
Grief needs movement.
So does life.
And surprisingly, this brings Stephen toward joy.
He doesn't describe joy simply as an emotional reward we receive when circumstances finally improve. Instead, joy can become something we actively participate in.
He points toward traditions in which laughter itself becomes a contemplative practice—not because everything happening is funny, but because joy can still be expressed even when life remains difficult.
This creates room for a different understanding of resilience.
We don't have to wait until grief disappears before experiencing joy.
We don't have to resolve every uncertainty before participating in life.
And we don't necessarily need to turn difficult experiences into inspirational lessons before they become meaningful.
Grief, awe, sadness, love, and joy can occupy the same life.
Sometimes even the same day.
Key Takeaways
Stephen describes Parkinson's as a degenerative condition that has changed his relationship with his body, mind, and sense of self.
Accepting that there will be "good days, bad days" can make prolonged uncertainty more livable.
Awe and difficulty can coexist without minimizing the reality of suffering.
His diagnosis has deepened his questions about where our sense of self actually resides.
Trembling Still began as private writing rather than an attempt to create an inspirational story.
Stephen's idea of "grief love" recognizes that grief and love are deeply connected.
He questions whether hope can sometimes distract us from fully engaging with the present.
Suffering doesn't automatically create wisdom; reflection and attention still matter.
Keeping grief moving can prevent sorrow from becoming emotionally hardened or stuck.
Joy doesn't have to wait until life becomes easier—it can remain a practice even in the midst of uncertainty.
Conclusion
After decades spent thinking, teaching, and writing about mortality, Stephen Jenkinson's diagnosis hasn't given him a final answer to life's biggest questions.
If anything, it has made those questions more immediate.
What does it mean to be alive when the future can't be guaranteed?
How do we love knowing that everything we love will eventually change?
And can we meet difficult circumstances without immediately demanding reassurance that everything will work out?
Stephen's response isn't a philosophy of despair.
It's an invitation into presence.
Life may contain good days and bad days. Love may carry grief within it. Difficult experiences may break open parts of us without automatically making us wiser.
And joy doesn't necessarily have to wait for any of those things to be resolved.
Perhaps living well isn't about finding a way around uncertainty. It is about learning how to remain fully alive within it.
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Stay Inspired, Keep Evolving,
Amrit
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