By Ross ten Hove
I started to have frequent headaches in June 1988. Having visited my GP seven times, I was told not to worry. One day, the headache got so bad that I blacked out and wound up at the doctor again. Thankfully, this time the locum on duty sent me for an X-ray, and I was admitted to the hospital the next day. I had just turned 20 and was told I had a brain tumour and was unlikely to live until Christmas.
Turns out the tumour was benign, but it was inoperable because it was near the pituitary gland in the middle of my brain. So I had several months of radiation treatment, which, they told me, would dissolve the mass after some years. Unfortunately, that turned out not to be the case.
I was still having headaches six months after my radiation treatments, and I needed to have a ventriculoperitoneal shunt (VP) shunt surgically implanted into my brain to reduce the fluid pressure. I thought that my medical dramas were over.
I had been a rower at school, so I decided to celebrate my survival by rowing from Lyttelton around the outer bays into Akaroa. I provisioned my boat with 20 cans of Coke, 4 big bottles of water, 25 Moro bars and 2 jars of peanut butter. It took me nearly 36 hours to arrive at the wharf in Akaroa.
I bought a house in Hornby in my early thirties and spent many of my weekends panning for gold on the West Coast as a quick way to pay down my mortgage. I also worked as a doorman at several nightclubs in Christchurch, where my martial arts training served me well when dealing with hot-headed drunks.
By my mid-30s, I was living the dream, except I continued to struggle with health issues left over since my radiation treatments. My short-term memory was poor, I had poor temperature control and trouble managing sleep patterns and fatigue. This was the first time I had heard of “late onset post-radiation syndrome” and understood that my brain, while saved from the tumour, had been damaged forever by the radiation.
I was 45 when I had my first stroke. It turned out that the valve in my VP shunt, which had been in place for over 25 years, had packed up, and my brain was swimming in fluid. I had emergency brain surgery to replace the valve and came around well. But over the next few hours, I again became confused, weak and lost consciousness. The new value was set too high for my brain to push fluid through, and I was now a “low-pressure hydrocephalic” due to the damage the radiation had done to my brain.
For the next ten years, I suffered multiple strokes, many TIAs (transient ischemic attacks), had more shunt failures, began having upper-body focal seizures, and was in and out of the hospital more times than I can count.
After my stroke in June of 2022, I was lucky to get a bed at Burwood, not lucky because I’d had another stroke, but lucky to have received such amazing care. Unfortunately, this stroke was very close to my brainstem, affecting the use of my dominant right hand and arm and leaving me in a wheelchair.
After I was released from Burwood, my wife was determined to help me continue my rehabilitation and found Exercise as Medicine. They decided that, due to my wheelchair confinement, I needed individual sessions. For over two and a half years, I have been coming twice weekly to regain my strength and coordination. I can now walk several hundred metres with a quad cane or supported with a belt. I have regained feeling and movement in my right arm enough to grip and help pull myself to a standing position.
The amazing team at Exercise as Medicine are always coming up with new ways to support and encourage my rehabilitation. Last week, we got a new machine that allows movement to interact with a video game-style programme to increase balance and coordination (thank you to Kiwi Gaming). They offer so much encouragement and help to so many people who have to live with difficult medical issues and injuries.
During the last dozen years, I have been on an emotional rollercoaster either fighting for my life, or fighting to recover from yet another seizure, brain surgery or stroke. My favourite quote, the one that gets me through, is “Live each day like it might be your last, because one of these days you’ll be right.” I’ve had many “could have been my last day” moments, but I am not giving up.
That’s not to say I don’t get angry sometimes, because I do. Angry at the accidental over-radiation that damaged my brain, angry at the unfairness of it all, but I let it pass as fast as possible so I can get on with being alive. Sometimes, after another stroke or a bad dream late at night, I have a good cry and admit to my wife my fears about never waking up, but then I hug her or my kids, and in the morning, I get on with it.
My wife tells people I have an irrepressible spirit and a wicked sense of humour. I occasionally write HELP ME on my whiteboard and hold it up to the window of the mobility van when I’m being driven somewhere. I teach all the caregivers, hospital nurses and my kids’ friends to give me fist bumps every time they see me because it helps people get past their discomfort that I’m in a wheelchair. And I never miss a chance to tell an inappropriate joke, or wear a Hawaiian shirt, or talk one of my new caregivers into giving me an extra spoonful of honey.
Ross Dalglish ten Hove May 2025