The dizzy spells began when Mitch Wilson was 17 and fresh out of school.
He put his ill health down to being "a bit of a teenaged peanut" - drinking too much and "living on McDonald's". But things got much worse.
"I couldn't lie down flat on my back. It would feel like my head just carried on going," he recalls. "If I turned my head too fast I'd completely spin out."
Taking high balls as an outside back in
his rugby team became impossible. He vomited frequently. His GP recommended specialist help and he paid to see a private neurologist.
The appointment was in February 2011, shortly after his 18th birthday.
"I told him, 'I think I have a brain tumour, and I want an MRI - I want to make sure.' It's an out-there claim to make. I didn't intend to be a hypochondriac, but I knew something was wrong, and I had all the symptoms. But he dismissed me and said, 'It's fine, save your money.'"
A type of vertigo was the likely problem, Wilson was told, and it should resolve on its own.
Soon, he was vomiting within minutes of getting up each morning.
The neurologist had told him he could come back if symptoms didn't clear, but Wilson says the last experience - and the $500 cost - meant he and his GP looked for answers elsewhere. In mid-2011 he saw a gastrologist through the public system, who put a camera down his throat but found nothing abnormal in his stomach.
Wilson battled on, but by 2012 was struck by frequent and "massive, massive" migraines. He'd wake in tears. Pain radiated through his neck, and around his forehead.
About 14 months after his first symptoms he noticed a black pin dot in the vision of his left eye. His GP called the DHB ophthalmology team, who said it sounded like a "floater", and to get back in touch if it worsened.
Shortly afterwards he saw an optometrist. "They looked behind my eyes and freaked out. The pressure in my head was sky high."
In Tauranga at the time, Wilson was rushed to hospital for a CT scan. Half an hour later a doctor confirmed he was no hypochondriac: a large tumour was growing in the fourth ventricle on the brainstem, which is in one of four fluid-filled cavities in the brain.
That night, April 23, 2012, he went by ambulance to Waikato Hospital and, with the world swirling, sat in the emergency ward until around midnight, when a bed in the neurology ward was found.
A 12-hour surgery the next day removed most of the tumour, which had blocked the usual circulation of fluid in the brain. When Wilson moved the fluid had rushed through the blockage, which was the cause of his severe dizziness and nausea.
His vision loss resulted from pressure building up in his head and, over 14 months, slowly damaging the optic nerve. Even with the tumour removed, it was a "wait-and-see" approach to find out how much worse his sight would get before it stabilised. There was a chance it would fade to nothing.
"It was a slow progression," Wilson says. "It was quite traumatising - I think the vision loss stopped at some point, but I was thinking it was still getting worse. I was constantly looking at things, trying to work out if I could see more yesterday."
A biopsy confirmed the tumour was cancerous. However, his main worry was his sight.
"I couldn't sleep because I thought I'd wake up blind. I was walking around looking at family photos, even looking at myself, thinking, is this the last time I see my face?"
The steady loss stopped after a few months. Wilson had no sight in his left eye, and a dot of vision in his right (to describe it he tells people to hold out their arm with their thumb up; the nail is roughly his field of vision). He retained some peripheral vision as well.
"I thought, 'Now I can focus on the cancer,'" he says.
The tumour started growing again, despite six weeks of radiation. After more surgery in January 2013, Wilson was flown to Dunedin for stereotactic radiation, which very precisely beams radiation, avoiding damage to surrounding areas.
The slightest movement can wreck the treatment, so a metal frame was put around Wilson's head, then bolted to the table.
"Because of all the drugs they put me on to screw the frame into my head, I don't remember much of the day. I was tripping out apparently and yelling at my dog - standing up and going, 'Who the hell let Blaze in here?' Mum said she was so embarrassed."
It hit the target and the tumour stopped growing. More surgeries followed, including to put a shunt into his head to drain excess fluid into his stomach, "like the guttering on the corner of a house".
The ordeal left both physical and mental scars. He'd sit at home most of the day, while friends went to university or started careers. Government organisations that should have helped instead made him feel "re-victimised" and deepened his depression, he says.
Wilson had to reapply for a sickness benefit every three months, for example, despite the permanence of his vision loss. It wasn't until 2017, five years after the tumour was discovered, that a GP asked why he wasn't getting the more comprehensive cover provided by ACC.
He lodged a treatment injury claim but it was declined after about six months of assessment, which included opinions given by a neurosurgeon and neurologist contracted by ACC to review his medical file.
"We are unable to identify an injury caused by the delay in diagnosis," ACC concluded.
ACC decisions can be appealed to a third-party mediation company. Within 30 days of a hearing, it ruled Wilson should be covered, and the corporation backed down.
"I lost my vision because of optic nerve atrophy," Wilson says of the cause-and-effect argument.
"The pressure in my head was strangling the optic nerve. And that pressure wouldn't have accumulated if the tumour had been dealt with at the start - when I was in hospital the doctors said with my symptoms I should have been scanned in February 2011.
"All I've experienced with ACC is everyone just tries to save money, instead of actually helping the person. You are treated as a number."
Even since getting cover, he's had to query and scrap for what he's entitled to, he says, including transportation services that are critical to his quality of life.
He gets 80 per cent of the wage he earned before he lost his sight - a contracting job where he earned $13.50 an hour. With adjustments for inflation, his payment now works out to about $15.50 an hour - well below minimum wage and "definitely not enough to live on".
"If I didn't have my family to help me out I wouldn't be able to live properly at all.
"I was a contractor - driving tractors, doing the maize and bales and that sort of stuff. I started at the same time as a mate, and he's now on about $30 an hour and makes $100,000 a year."
Wilson's weekly payments were backdated, and he was also awarded a lump sum of $130,000 to compensate him for his vision loss. That was the maximum amount for such a payment, and much lower than multimillion-dollar legal settlements in similar cases overseas (New Zealand's "no-fault" ACC system has helped avoid industrial levels of medical negligence legal action, but means people like Wilson can't pursue legal action).
"Yes, that's a good sum of money," he says of the lump sum compensation. "But in terms of my reality, it's ridiculous. I can't live an independent life. Losing your eyesight should be worth millions. I'm never getting it back."
He used the money to buy in Cambridge (before property prices boomed in the Waikato town recently dubbed the "Ponsonby of Hamilton" after an influx of Aucklanders), where he lives with Blaze, who puts on an intimidating display when visitors arrive but, in his master's description, is "a complete teddy bear".
Wilson got the german shepherd in 2012 and soon after being told his tumour was growing back. The companionship was crucial at a very low time in his life. Wilson "ate my feelings a bit", and gained more than 30kg.
Through 2013 he dragged himself to the gym, but it wasn't until the following year that the future mattered more, after scans showed his tumour wasn't growing.
"I started thinking, what can I actually do? I had no idea what visually-impaired people did. I ended up calling Sport Waikato."
They suggested paracycling, where people with limited sight compete on tandem bicycles, with a sighted "pilot" at the front. There happens to be a world-class velodrome in Cambridge but sorting the other essentials, including finding coaching and a pilot who can commit to the training and events, was more complicated.
Ongoing fundraising has been essential, because Wilson had to buy a custom-built bicycle that's worth more than $30,000, and fund international travel.
Since throwing himself into the sport in 2015 he has placed eighth in sprint events at two world championships. However, because he's not on the high-performance Paralympics programme, he mostly trains on stationary bikes set up in his lounge, and has had to find his own pilots in the past.
He gets around day-to-day with little indication of his disability, but has worked hard to build up the balance needed to stay stable on a bike that reaches up to about 70km/h. When he first started serious training in the gym he couldn't do a squat or single leg lunge without toppling over. Now, he squats up to about 180kg.
Wilson, who is also studying accounting at university, says having something to work towards is as much the appeal as the cycling itself.
But that uplifting part of his life has come amid an ongoing battle with ACC. His teeth have steadily decayed since the first six-week bout of radiation, he says, and are now "destroyed".
"My dentist would describe my teeth as sort of chalky. The amount of damage I have would in normal cases cause a lot of pain. I don't have any pain. I barely drink, I don't smoke, I eat well. I'm not someone who would have this level of decay in their mouth. It's just crazy."
Head and neck radiation can contribute to side effects including worsening oral health, and a supporting letter from his dentist noted Wilson had "excellent oral hygiene" with only minor fillings, but when he was re-examined soon after the radiation "I noted radiolucent areas in between his teeth".
"It is my opinion that medical procedures he had undergone to treat his tumour had a direct impact on his oral health and hygiene," the dentist wrote. "I observed drastically decreased salivary flow, which greatly contributes to the oral cavity's ability to keep clean and [to stop] decay from forming."
ACC consulted one of its contracted experts, who reviewed his files and concluded there wasn't evidence of dry mouth and, even if there was, that condition doesn't cause dental decay.
"Taking into account the client's high caries rate prior to radiation treatment, his lack of regular check-ups and preventative dental care, his smoking habit, his crowded teeth and inadequate oral hygiene practices, the development of new decay was more likely than not to occur, regardless of whether or not he had radiation treatment," the expert submitted. ACC declined the claim.
That angered Wilson, who eats well for his cycling, and says he hasn't smoked since he was about 18 years old (and then not heavily) and keeps very good care of his teeth.
"This so-called expert had never met me, never observed my teeth, nor had he ever spoken to me," he says. "It was blatant defamation of character."
He appealed to a third-party mediation company, which after a hearing last year instructed ACC to issue a new decision within three months. That deadline was missed. After seven months Wilson complained and the following day his claim was accepted.
ACC's acting chief operating officer Gabrielle O'Connor told the Herald the corporation had apologised to Wilson "for the challenges he has faced while accessing ACC support".
"We are committed to working with him to support his recovery and are taking steps to ensure he is better supported in future, including by having both of his treatment injury claims overseen by the same person."
ACC decisions are made on the medical advice available at the time, O'Connor says, and everyone has the right to review those decisions. They will also be reconsidered if there's new medical evidence available.
In regard to Wilson's comments about the inadequacy of his weekly compensation, O'Connor says its calculation is set out under and in line with current legislation.
Lockdown has delayed Wilson seeing a dental specialist, and has caused other disruption in delays to Auckland-based repairs to his treasured tandem bike. But the 28-year-old is still training every day with the hope of competing at the 2022 Commonwealth Games, and is on the hunt for sponsorship to support that dream.
Without his family, he wouldn't be focusing on that challenge, but on how to survive well below the poverty line. He wants to tell his story - through this article and a public speaking side gig - to highlight the struggle people can face for years after surviving a life-threatening illness or injury.
"I can't imagine how many others are out there. I want to be the head of the axe - to split the wood and open the way to force change."
• We want to hear from people and families affected by issues with ACC. Contact nicholas.jones@nzherald.co.nz
• More information about Mitch Wilson's recovery, public speaking business and updates on his cycling can be found on his Facebook page: https://www.facebook.com/mitchwilsonparacyclist
