'Lack of oxygen to the brain erased memories of my early life': Cork writer on living with undiagnosed tumour

Cork man and writer Derry O’Leary tells Helen O’Callaghan about the single evening that represented a key turning point in a life lived until then with an undiagnosed brain tumour that caused unrelenting debilitating seizures

Derry O’Leary: 'I veered away from everything, went into my shell. I was living at home with my parents and a sister. I felt less and less part of society. I wasn’t speaking anymore, my speech and confidence very limited, my vocabulary went to zero.'

The seizures started the night before the Leaving Cert, June 1991. I believed they’d go away, never thought they’d take over. They increased, got worse.

The doctors did EEGs. The neurologist found "nothing conclusive": I wasn’t epileptic, this was unusual and didn’t make sense. He called them pseudo seizures — plus a fugue state when my brain was rebooting back to normal. That was difficult.

Another neurologist in 1999 said I was the most unusual case he’d ever had. Hearing that, you feel strange. By then, I was pretty bad — every day a waiting room to fall down.

Side-effects of medication — double vision, migraines, nervous tension, mood swings, bladder problems — ending up with wet pants even if I wasn’t having a seizure. I couldn’t have a working life, go to college, or really be in public.

I veered away from everything, went into my shell. I was living at home with my parents and a sister. I felt less and less part of society. I wasn’t speaking anymore, my speech and confidence very limited, my vocabulary went to zero.

Being told this wasn’t neurological but psychological, believing I was causing it all, thinking I was the demon in myself. And then, some awakening — not God’s hand reaching from the clouds — almost like a sudden moment, a realisation I needed to fight this or I was going to die.

Derry O’Leary: 'I was afraid of being around others, wouldn’t have known how to go on a bus, travel, or do anything independent. I was this very strange person, like a health warning.'

After that, it was gradual, trying slowly to begin connecting, make eye contact, speak, and become more aware of people around. I didn’t have speech or social skills. I had no confidence formulating sentences — learning that again wasn’t like starting from scratch, but like any language you learned a long time ago… you remember it, but you have to practise.

I was afraid of being around others, wouldn’t have known how to go on a bus, travel, or do anything independent. I was this very strange person, like a health warning.

Over time, I slowly improved. I started asking more questions. My main aim to answer the biggest question: Why was I ending up on the floor like a rag doll, having all these attacks every day, multiple times a day?

I tried everything, holistic therapies, a psychologist... I decided I needed a rehab centre to learn how to live with the seizures. I hoped for some simple workshop to train me.

My sister found the David Lewis Centre in Cheshire. I was all excited. They said they’d take me, but they wanted my medical reports from the Cork-based neurologist who’d done the MRI in 1999. First, I was to go to the Hope Hospital in Manchester.

I arrived there, anxious, excited, determined I’d be accepted in the rehab centre. The doctor came that evening — young, smiling, excited. He wanted to share some really good news with me. Out of a folder, he held up my MRI scan to the light, pointed to a shadow, a dot.

He said a benign brain tumour was causing the seizures — and it could easily be removed. How would it be removed? He said through surgery. I said: “Can you do this now?” He said: “No, at home in Ireland.”

Derry O’Leary: 'November 1, alone in the house, I had a killer seizure that wouldn’t stop. Luckily, my sister found me.'

The moment I heard "no", I didn’t feel relief. It felt like another brick wall, another promise leading to a dead end. I just felt devastated that I couldn’t go to the rehab centre.

Back in Cork, everyone was saying it was good news — this was benign, there since birth, it could be taken out, everything would resolve. Gradually, it dawned: this could save my life… Surgery: October 2003. I woke the following afternoon. A nurse said it had gone well.

In the immediate aftermath, I was sure I was cured — I felt like a 15-year-old, back in life, out of the cage, so happy. The seizures started again. The consultant said it was normal, the brain could take time to stop them. But it was too many, two, three a day. November 1, alone in the house, I had a killer seizure that wouldn’t stop. Luckily, my sister found me.

The paramedics couldn’t control it. I couldn’t breathe. My right lung collapsed. I was put in an induced coma. I emerged on November 10 in ICU. The post-operative seizures were caused by the MRSA bug, which also caused pneumonia — why my lung collapsed.

Lack of oxygen to the brain erased memories of my early life. I can only remember from late 1999. I’ll recognise people from back then but won’t recollect the stories. People say, ‘Hey, do you remember?’ I’m blank. I’ve been told it won’t come back — accepting that took a long time. After the coma, it took over a decade to feel fully myself again.

I’m fine now, health-wise. I didn’t tell Joan, my wife, until I knew her well. We got married in 2022 in Spain. We work together, and have an English language school. We live near Granada. My father built a house here in 2002; he passed away in 2005. My only memories with him are from 2002 to 2005.

The day that saved my life — the turning point I look back on with gratitude was the day in 2002 in Hope Hospital. Everything that followed grew out of that evening. I wrote to the doctor afterwards to thank him. He was so happy I was saved, still alive today.

• The World Behind The Door, A Memoir of Memory, Survival and Renewal by Derry O’Leary speaks to anyone who has ever felt broken, lost, or in search of themselves. Access all versions through theworldbehindthedoor.com.