Written by Michael Elwan – Lived Experience Solutions (LEXs)

This new series is written from lived experience. It includes personal reflections on illness, loss, and caregiving. Please read Michael Elwan’s writer-in-residence series with awareness and care.

Alexandria, 2000.

The afternoon light fell in slanted lines across the tiled floor. My father, a retired Air Force General, said softly, “Something doesn’t feel right”. Two days earlier, he’d brushed off a headache. Now his words had a tremor I’d never heard before. I ran for help.

At the military hospital, the corridor smelled of disinfectant. I was fourteen, standing outside the closed door where doctors were examining him. No one explained much. Hours later, a man in a white coat opened the door and said, almost casually, “He’s had a stroke”. I didn’t know what that meant.

When they finally let me in, my father sat on the bed, his back to the door. He turned his head at the sound of my steps, his eyes unfocused. “Who is it?” he asked. “It’s me, Dad”.
“I cannot see” he said.

That sentence rearranged the world.

The house without a backbone

Everything changed quickly. In Egypt, a father is the spine of a family; when he collapses, everyone leans on air. I stepped into his place without thinking. The pension kept us afloat, but money was not the missing piece. Authority was. Safety was. His presence had been the map of our home.

There were neighbours and relatives at first; kind, busy people who visited, promised help, and faded as months passed. My mother was fighting her own unseen battles, and I learned not to add to her worries. I studied when I could, but my attention stayed at home.

Each morning, I prepared his medication, helped him pray, guided him to the bathroom. I became his reader, his hand, his sight.

There was no talk of services or respite. I didn’t even know what those words meant. We had a phrase instead: Ibnu dayman ma’ah – his son is always with him. It sounded noble, and it trapped me.

Invisible work

My father rarely spoke of his blindness. The man who once commanded squadrons now moved quietly, avoiding mirrors and visitors. I learned early that silence was his armour. To talk about loss felt like betrayal.

No one from the hospital ever asked how we were managing. Their focus stayed on blood tests and medication refills. No social worker, no community nurse, no pamphlet about support for young carers. Isolation settled in. I stopped noticing my own tiredness. My teenage wants shrank to a single goal: keep him safe, keep him proud. The system saw a patient with a disability. I saw the man who raised me reduced to a diagnosis, and myself shrinking around him.

Learning what care costs

Two years later, when he died, he was still quiet. I was sixteen and thought I had already used up all my grief, but his death proved me wrong. The house felt airless. For weeks, I replayed that first day in the hospital; the closed door, the six hours outside, the wandering eyes. It wasn’t just his sight that had gone; it was the horizon line of my own life.

I didn’t have the language for trauma or anticipatory grief. In Egypt, losing a father made you the man of the house overnight. Everyone congratulated me on being strong. No one asked what it meant to a boy.

What the system didn’t see

Looking back now, as a social worker in Australia, I can see what was missing then – and what, too often, is still missing here. Systems everywhere struggle to recognise carers until they collapse. They see illness as an individual event, not a family ecosystem.

In Egypt, my father’s care revolved around hospital corridors and medication charts. In Australia, I’ve seen another kind of blindness: forms, eligibility tests, and waitlists that make help as distant as ever. Both versions share one flaw; they notice bodies but not relationships.

Prevention could have looked simple: a teacher asking about my absences, a nurse who saw me not as an escort but as a child carrying an adult, a community space where caregiving wasn’t mistaken for coping.

Lessons carried across continents

Migration to Australia gave me distance to translate that experience into language, and then into work. Founding Lived Experience Solutions (LEXs) years later, I wanted to build what didn’t exist when I was that boy; a system that values care as knowledge, not burden.

At LEXs, I offer counselling, peer and social work supervision, and consultancy that bridge lived experience and professional practice. Every session begins with listening for what systems overlook: culture, family roles, faith, and the quiet exhaustion that hides behind responsibility. I train organisations to see carers not as dependents or volunteers, but as partners with wisdom forged through care.

It’s the kind of space that would have helped me at fourteen; a place where someone might have asked what I needed, not just what my father required.

People often ask where my commitment to prevention comes from. It began in those quiet years beside my father’s bed. The same hands that measured his medication now write policies and training programs. The same silence that once isolated me now reminds me what happens when systems rely on stoicism instead of support.

Whether in Cairo or Canberra, prevention of despair starts long before diagnosis. It starts when we recognise that behind every patient is a web of people improvising care. My father taught me that dignity can survive catastrophe, but not invisibility.

Closing reflection

If someone had noticed the fourteen-year-old boy guiding a blind man through the market, not as a symbol of strength but as a child carrying too much, maybe both would have healed differently.

I became a carer before I understood what the word meant. Two decades later, I use it with care; it carries the weight of love, loss, and every system that mistook silence for resilience.

What I wanted then is what I still work toward now: a world where care begins with attention, and no child has to become a backbone before growing up.

Click here to see our Writer-In-Residence guidelines and all of our previous Writer-In-Residence posts.

About the writer

Michael Elwan is an award-winning social worker, lived experience advocate, and founder of Lived Experience Solutions (LEXs) – a values-led social enterprise advancing lived experience leadership and culturally responsive practice across Australia’s mental health and social sectors. Through LEXs, he offers counselling, coaching, supervision, and consultancy that bridge the personal and the systemic, translating human stories into policy transformation.

Born and raised in Egypt, Michael became a young carer at fourteen when his father’s sudden stroke left him blind, and later faced the profound grief of suicide bereavement after his mother’s death. Those experiences shaped his lifelong commitment to building systems that hold people, not harm them. After migrating to Australia in his late twenties, alone, he rebuilt his life from the ground up-rising from frontline roles in youth and peer work to senior leadership and national advisory positions shaping mental health policy and reform.

Now a PhD candidate researching lived experience leadership in mental health, Michael brings an intersectional lens as a CaLD man, suicide-bereaved son, carer, clinician, and enterprise founder. His writing explores the emotional and structural layers of care, culture, masculinity, and justice.

In 2025, he was honoured with the WA Mental Health Award – Lived Experience Impact & Inspiration, recognising his contribution to expanding culturally responsive, lived-experience-led practice and policy. Through this 16-week residency, Michael invites readers to journey with him through what the mental health system didn’t see-and what it could become when rebuilt with lived experience at its heart.