by Gordon Halsey

My name is Gordon Halsey, I’m from Wellington, and I was diagnosed with a meningioma in October 2021 after what was thought to be a transient ischemic attack (TIA). An MRI revealed a small lesion, and I was quickly given a written report — a surprisingly efficient response that I appreciated.

Soon after, I met with neurosurgeon Mr. Alan Parker. He explained that the tumour may have been responsible for what I’d thought were stroke-like or epileptic episodes. He kindly provided me with a copy of the scan, and I was told that I would next hear from him in March — by phone or in person. That felt like an awfully long time to wait, especially when my symptoms and side effects were escalating.

Despite trying to remain patient, I found myself caught in the fog of silence that too many of us in the public health system experience. I wasn’t seeking special treatment — just clarity. When would the next MRI be? What did the future hold? Could I stop taking the medication that was clearly affecting me so badly?

In the meantime, I was placed on Levetiracetam (Keppra) — a drug that has changed my life, and not for the better. Its side effects have been severe and persistent: headaches, short temper, vertigo, extreme fatigue, and the mental fog of not being able to read or write for more than half an hour at a time. As someone who has been an academic most of my life, this loss has been deeply personal and frustrating. My brain still feels active, but it’s like I’m fighting against a wall of fog and exhaustion.

There were moments when I thought I was having another stroke, only to remind myself it was the medication — not the tumour. My GP, Dr Wayne Smallman, has been wonderful throughout this ordeal, even writing letters on my behalf to support expediting my MRI. My wife has been equally steadfast — it was her persistence with the radiology department that helped bring my scan forward by months.

The hardest part has not been the diagnosis, nor even the side effects — but the lack of communication. Not knowing if I would need surgery. Not knowing when I'd be seen. Not knowing if I’d be on this debilitating medication for the rest of my life. I even wrote to the Minister of Health to try and find out when I could expect my scan — and received the sort of vague, impersonal reply one expects from politics, not medicine.

I don’t expect favouritism. I don’t expect miracles. I just wanted to be heard. I’ve paid into the system since the age of 12. And yet, it often feels like the system resents having contact with its patients. I understand the pressure COVID-19 has put on our hospitals — I really do — but it cannot be used to excuse the silencing of those who are already vulnerable.

The first time I visited the emergency department, the staff were caring and attentive. The second time, I was met with indifference — as though I’d interrupted their coffee break. I eventually left without being seen. Maybe that’s what they were hoping I’d do.

Moving Forward, Together

At 73, I still have energy, insight, and the desire to live a full life. But Keppra has taken a toll, turning what was once a vigorous man into someone battling confusion and fatigue daily. My wife’s compassion and care have been a saving grace. I often wonder how others cope without such support.

What I want more than anything is communication, and a health system that listens. I don’t want to be forgotten. I want to understand what lies ahead. And I want to live with dignity, not in the dark.

I share this story because I know I’m not alone. And if you’re going through something similar — please know that neither are you.