Consideration of my spirituality after a stroke

Peter Ellis, July 2025

I am the first to admit that I may not be the most qualified to write about spirituality, but I can only speak from the truth of my experience. My Christian faith has been and continues to be a vital part of who I am. I was raised within a strict, evangelical Christian church and tradition. I know I carry my own bias. Still, I believe that faith and spirituality have much to offer, especially in our diverse society where, at its best, different faiths and even those with no faith, can live and work together for the common good.  This I feel is important if spiritual care is to be taken seriously within any care setting, reognising that many find their support through their own faith community. I found that the offer of spiritual care was very little, if non-existent whilst in hospital after my stroke.

But spirituality, I have come to believe, is not about a tradition or institution. It is  something much deeper. It’s personal and private and it is a a core part of our humanity. It is the quiet voice within that asks, “What is the meaning of this life? Where is God in all of this? What matters now?” 

There is a moment in the spiritual contemplative life — and perhaps in every life — when God appears to vanish.  These are the times when the language of faith no longer fits, and prayer hits a wall.  The soul, once alight, seems dimmed and even beauty seems beyond reach.   

For me, that moment came after my stroke.  Like many people throughout my life I have  experienced loss, grief and disappointment. But this is different. It is humiliation at the visceral level. My body, once so capable, now needs help to dress, to walk and to do many other ordinary, everyday things. Everything has to be relearned. My life has become narrowed. My confidence has withered and at times I feel l am burden. 

It is not only my body that  has faltered, but my image of God.  My prayers have, at times become elusive, and God seems to have disappeared . There was no sense of divine presence, just the rawness of being alive.

I realise we each express spirituality differently. For some, it is grounded in a particular religion. For others, it is a broader search for connection, purpose, or transcendence, sometimes without naming God at all. But at its heart, spirituality is about longing for healing, for understanding, for home.

Julian of Norwich speaks of the “oneing” of the soul with God — not through striving, but through surrender. She writes, our souls can experience both love and suffering.   But suffering can be transformative, bringing us to a place of learning and a deeper faith, despite the pain (Rohr, 2011). Rather than seeing our disability as a tragedy with no meaning or purpose it could be the opposite (Nouwen, 1979). I find this thinking a massive step towards integrating and fully accepting what has happened to me, and yet believe the truth in it.

A Life changed by stroke 

In March 2018, just six months after retiring early, I had a massive stroke at the age of 58. It changed everything and twice I nearly died. I have since developed epilepsy and had a number of falls and various fractures,  one that led to a full hip replacement.   My life, as I know it, collapsed.  I know I hated all those visits to A&E as it highlighted my vulnerability and loss of my independence and represented for me entry into my “new life”. It has been a humbling and frightening experience wondering what the future might hold for me.

The stroke has left me severely disabled, and, having lost the full use of one side of my body, I now, most of the time use a wheelchair. And I’ve lost things that are harder to name such as my independence, my former role in society, and at times, my sense of self-worth. I watch others (friends, colleagues, even strangers) going about their lives with ease, walking free, using both hands, and enjoying things I can no longer access and I feel a deep sadness.  

When my stroke hit me, I remember collapsing and thinking it might pass. But when my arm flopped to the ground and I slipped into unconsciousness, I realized something much more serious was unfolding. I sensed I was crossing a threshold between life and death.   I wondered, with curiosity about what was going to happen next. Strangely, I wasn’t afraid. My husband, Duncan, found me and called for help. When I regained consciousness, the anxiety did come—especially the urgent need for treatment. I had a brain bleed, not a clot, which meant the time window was less critical. Still, it all felt frighteningly fragile.

Before the stroke, I was already on a journey of deconstructing[1] my inherited faith. I had been questioning many of the doctrines and traditions I had grown up with. That journey continues, and though it is sometimes unsettling, it is also exhilarating. The spiritual life can move from “order”, through “disorder”, into a deeper “reorder”. It can be chaos until a new construction is found (Rohr, 2011).  My stroke didn’t derail that journey, rather it deepened it and it continues into a new understanding of faith and indeed spirituality. 

Asking “why?”

Suffering has a way of awakening the big questions: Why me?  What did I do or fail to do to deserve this? What is the purpose of my life now? Where is God in the middle of this mess?

It is not easy. There are days I feel invisible, literally looked over in my wheelchair. I feel like I have lost my place in the world. I read once, while in hospital, that strokes can leave survivors feeling “hopeless and helpless.” And that hit home.  Yet, even in the darkest moments, I sense something deeper calling me, not to answers, but to Presence.

During the Second World War, a Nazi officer taunts a Jewish prisoner, asking mockingly, “Where is your God now?” The prisoner, cleaning out latrines, replies, “Right here with me, deep in the poo.” That line has stayed with me. It was not irreverent, it was holy, that even there, in the most undignified, bodily places God is down here in the mess, not digusted with it, rather to be with us in the loneliness, in the pain. For me, it’s the raw truth. God isn’t perched above suffering, issuing commands from a distance.

If God is truly with us then there is no place he does not go. Including the shame and frustration of my broken messy body

That is where I find God now.  This can be in many ways. I find God in the kindness of my husband who cares for me, but also in the frustration and fatigue I feel. Having to accept being the recipient of care and support when I was always the one in charge! I find God when I express my vulernability in the many tears.

Three perspectives of Spirituality

In my experience and following my stroke, reflecting on my spirituality and faith, I see it unfolding in three key ways:

1. Internal Spirituality

This is the deeply personal journey with the soul’s quiet wrestling with love, loss, and longing. It involves a yearning for meaning, a hunger to connect with something greater than ourselves. For me, this has included facing my pain, asking hard questions, and listening, really listening, to what my heart and God is trying to say.

2. Contemplation, Suffering, and Stillness

Suffering, strangely, can become sacred ground. It strips away illusions and demands honesty. In silence and contemplation, in simply being, we can meet God. Not the God of easy answers, but the God of presence. Sometimes, I just sit and breathe and cry. That too is prayer.  I find at times I actually get tired of all the crying and want to say “enough”!  If we do not deal with our pain, it is highly likely to come out in other ways[2] (Rohr, 2004 p.25).  Contemplation gives us space to begin that transformation.

3. Compassion and External Action

Spirituality isn’t just inward-looking. It spills out. It leads to action—often quiet, often unnoticed, but rooted in love. Compassion flows from the depths of suffering. I have seen it in the hospice world where I used to work. I have seen it in interfaith initiatives, local community projects, and ordinary people doing extraordinary acts of kindness.

Before retirement, I served as chief executive of a children’s hospice. Our core purpose was to “accompany families from life through death, creating positive experiences along the way to become good memories for the future.” That work felt holy. Although I no longer lead such efforts, I still believe my life can still be of service, perhaps now in quieter, less visible ways.  I am finding setting up and running a local stroke support group has been so rewarding. A group of people meet once a month, and we. open up about our experiences. Friendships have been formed and mutual support offered outside of the meeting space. When one member said to me: “this gives me hope”, I was deeply moved. 

Faith After Deconstruction

My Christian faith remains, but it has changed.  It is less certain, and yet more spacious.  My faith is not so much about rules, but about relationship, and I do not seek definitive answers, but a quality of presence. I am still following God, but with new eyes and, often, with limping feet. It is indeed aiming for a more mature, adult based relationship rather than one that is fear based, concerned with reward and punishment.

Is my suffering a gift? I don’t know. That may be a stretch. But it has carved open a space within me where God and I can meet again—not as before, but honestly, vulnerably, even bitterly at times. And maybe that’s real faith—not having it all figured out, but staying in the conversation and uncertainty. 

Final Thoughts

Spirituality, for me, is no longer about rigid belief or exclusive traditions. It is about the human search for meaning, love and connection. It includes people of faith and people of none. It welcomes doubts, embraces mystery, and honours the sacred in suffering.

If you find yourself in pain, in grief, in transition—know this: you are not alone. And you are not irrelevant. There is something deep and real still unfolding in you. Maybe, just maybe, that is where God is—down in the dirt with us, whispering, “You’re still here. Let’s keep going.”

Maybe the spiritual life is not about rising above, but sinking deeper into what is. Maybe healing is not escape, but presence. Maybe the deepest faith is not clarity, but accepting  our new way of life

Into that space of raw vulnerability, I offer this prayer — for myself, and maybe for you too:

God of the broken
I don’t know how to live this life now.
Everything feels smaller, harder, lonelier.
I miss who I was. I miss what I could do.
Some days, I miss wanting to go on

If you are near, then be near to me here—not in the place I used to be,
but here, in this painful, narrow place.
Let me know that I still matter. That I am still yours.
Help me carry this sorrow with honesty.
Help me see, one day, some light ahead.

Even if I can’t walk far, or even hold things well
Let my soul still walk with you and be held by you
Even if I can’t speak clearly,
Hear the truth I cannot say. Hold me now. That’s all I ask.

Amen.

I am still here. I am still learning. And maybe — slowly, quietly — I am being remade.

Peter Ellis

July 2025

References

Julian of Norwich, 1998. Revelations of Divine Love. Translated by E. Spearing. London: Penguin Classics.

Nouwen, H.J.M., 1979. The Wounded Healer: Ministry in Contemporary Society. New York: Image Books.

Rohr, R., 2011. Falling Upward: A Spirituality for the Two Halves of Life. San Francisco: Jossey-Bass.

Rohr, R., 2004. Adam’s Return: The Five Promises of Male Initiation. New York: Crossroad Publishing.

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[1] Deconstruction is about critically examining and reevaluating religious beliefs once held, typically beliefs inherited from family, community, or religious institutions.

[2] Rohr, R. (2004) Adam’s Return: The Five Promises of Male Initiation. New York: Crossroad Publishing, p. 25.