Weekend Herald - Canvas
Doing Whatever It Takes
Eighteen years after a traumatic brain injury left her husband paralysed, entrepreneur and disability advocate Charmeyne Te NanaWilliams talks to Joanna Wane about taking their next big step
Like Maui, Peter Williams once thought he could cheat death. And why not? When he was 27, anything seemed possible.
There’s a video of him that year at the 2002 Va’a World Champs in Bora Bora after his team had won gold, breaking the world record. God, he was beautiful. A shade under 2m tall, biceps like twin oil drums, long dark hair pulled back into a ponytail. In the late 90s, he made a cameo appearance in the TV series Hercules as a centaur — the embodiment of untamed nature in Greek mythology, although he’s actually Samoan.
“Everyone — men and women — were in awe of him,” says his wife, Charmeyne Te Nana-williams. “He was such a beautiful man, quite awesome to watch on the water.
“The things he would do out on his waka. He really thought he could challenge nature. Sometimes I’d almost think he had a death wish, especially when it came to the water and testing himself physically. ‘I’m going to cheat death’ — I remember him saying that. And he did cheat death. Unfortunately, the outcome wasn’t what he expected.”
The last time the couple spoke — at least, in the way most of us understand conversations to be — was in another moment of triumph for Williams, who’d just stepped out of the boxing ring after winning the super-heavyweight title at the 2002 national amateur championships in Timaru.
Te Nana-williams was back home in Auckland with their 8-monthold twin girls, who’d been born dangerously premature and only recently gained enough strength to be discharged from hospital.
Williams told her he’d call her back later that evening. But the call never came.
An hour after the fight, Williams collapsed with a seizure caused by a slow bleed in his brain. In a desperately precarious condition, he was raced to Timaru Hospital and placed in an induced coma. When Te Nana-williams arrived at the intensive care unit straight from the airport, still unaware of how serious the situation was, it looked as if he was sleeping — except for a massive lump on the side of his head. “It wasn’t the bleed [that caused the real damage],” she says. “It was the swelling.”
For a couple of weeks, it was touch and go before there was any real certainty that Williams would live. But the price of survival was enormous. The trauma to his brain had left him a quadriplegic, with almost a complete loss of movement and unable to speak. It was only when doctors woke him from the coma that there was any indication of what might remain of the man trapped inside.
For Te Nana-williams, it was both the worst and one of the best moments in her life.
“When he opened his eyes and looked at me, the look in his eyes just devastated me,” she says. “It was the panic I could see. But I knew it was Peter. I could tell he was still there.”
Te Nana-williams measures her life not just in terms of Peter, before and after he was paralysed, but the Charmeyne she used to be and the person she is now.
She’ll say the worst times, her most grinding moments of anger and despair, weren’t about what she had lost but the struggle to protect what she had left.
Over the years she’s taken on the healthcare system, the legal system, Work and Income, and ACC. It’s a fair indication of who came out on top that the company she founded in 2008 to take over Williams’ care is now a contracted provider with ACC.
A home-based rehabilitation service, What Ever It Takes employs 200 staff and has clients in Northland, Auckland, Waikato, the Bay of Plenty, Hawke’s Bay and Wellington. Next month, the company marks another major milestone with the opening of an impressive new facility in central Auckland — fulfilling Te Nana-williams’ vision of bringing wrap-around support services under one roof.
There are clinician rooms, as well as a rehab and fitness gym. She’s still recruiting but staff will include physiotherapists, occupational therapists, registered nurses, a dietitian, a social worker and a psychologist, with a doctor on-site every couple of weeks. Based on a Maori model of clinical practice, the focus is on not just the wellbeing of the client but of the whole family — whatever their ethnicity.
“A mainstream approach just does not embrace that,” she says. “The whole framework is set up to deal with what’s in front of them, and that doesn’t include a family in trauma. They’re a hindrance, not a help.
“Everything we do, the family is part of and involved in. That’s our point of difference. The
mana they bring to what we do is the expertise they have in themselves.”
When Te Nana-williams was awarded a Queen’s Service Medal in 2014, Minister of Disability Issues Tariana Turia acknowledged her role in helping disabled people and their families “get back in control of their lives”. In the care industry, that articulates quite a radical shift in the balance of power.
A fierce advocate for Williams and actively involved in his care, Te Nana-williams alienated many of the staff at the residential rehabilitation centre where he was transferred from hospital. “They used to call me ‘the bitch’,” she says. By then, her maternity leave was over and she was back at work full-time, as an export consultant for New Zealand Trade & Enterprise.
At first, no one believed Williams had the capacity to make his own decisions. But for Te Nana-williams, something had taken root in that moment when he first opened his eyes, and found himself utterly helpless, trapped in the broken shell of his body. In the months that followed, witnessing his anger and frustration was one of the hardest things for her to bear.
She knew he could understand what she was saying. So, she worked out a way for him to talk back — painstakingly spelling out words by wriggling one of the few parts of his body he still had some autonomy over: his right toe. Then she took legal action, eventually winning the right for Williams to have control over his own welfare, without a court-appointed guardian.
“I wanted Peter to live his life independently, as close as possible to how he was living before his injury,” she says. “For me, that was really important because he was such an alpha male, such an individual who danced to the sounds of his own beat. I wanted him to still be able to do that, and be clear about his mana as a man, as the man of the house, as a dad, as a partner. It was really important he maintained all those roles. And to do that, he had to be able to make those decisions himself.”
Those first couple of years were the toughest for Williams, who struggled with depression and still suffers from chronic pain. “But he’s such a strong person, mentally and emotionally,” says Te NanaWilliams. “It takes a certain kind of person to deal with that. Ask him now and he always says he’s so glad he didn’t leave this world.”
The night before flying down to the boxing match in Timaru, Williams had proposed. Four years later, the couple were married in the back yard of their Auckland home.
“If he hadn’t had his accident, would we still be together today? I just don’t know. But the thought of ever losing Peter again — and it’s like I’ve lost him once already — just devastates me. The love we have now is so significant — and that will never change.”
The twin girls, Safenunuivao and Leata, are 18 now and about to finish their last year of school. Gifted athletes, just like their father, they’re looking at going to university in the United States next year on basketball scholarships.
It’s something they’ve discussed with their dad, just as they’ve asked for his training advice over the years (stick to it, be consistent, work hard) and shared the news of their day. But instead of using his toe or his thumb to communicate, they read the blinks of his eyes.
That’s always been “our normal”, says Safenunuivao. To them, he’s an empathetic, loving dad. “I didn’t realise our family was set up in a different manner until I was maybe 11,” she says. “A long, long time. Mum always taught us to be grateful, to look at it in optimistic way. I’ve never been upset he’s in the situation he’s in because we’ve learned to cherish what we have.”
In the past two decades, Williams’ body has aged but he’s still a big man, his long, black hair tied up in braids. Unfiltered, his emotions are expressed in abrupt, intense bursts. When he cries, it’s a raw, agonising sound if you’re not used to it. But there’s plenty of laughter in this family, too — and not a shred of self-pity, despite the enormity of what they’ve been through. In what was a true “year from hell”, the couple had buried their son after he was born prematurely at 24 weeks, only a month before Williams suffered his brain injury.
In a way, Te Nana-williams never had time to grieve for either of them. It took three years of battling the system before she could finally bring Williams home (ACC initially declined an application to cover the $300,000 cost of modifying their house). The next challenge was finding carers with the experience or skill to cope with his high level of needs; sometimes, Williams would lash out violently in frustration at not being understood.
Over the next 18 months, they went through two agencies and close to 100 staff. After he was sexually abused by an agency worker, the extended family took over, working in shifts to provide round-the-clock care.
Williams became What Ever It Takes’ first client, and it’s still a whanau affair. Two of Te NanaWilliams’ sisters are part of the team, and her brother, rugby sevens legend Karl Te Nana, was rehabilitation manager for many years.
The holistic practice model the company is founded on (called Ngakau Purotu or “beautiful heart”) has resonated with indigenous communities all over the world, and focuses on both physical and mental health. Part of the job is mentoring partners and families who are struggling to cope with a life that’s been altered beyond recognition. Other clients are utterly alone.
“A lot don’t have families in their lives,” says Te Nana-williams, who is sometimes the only person left to arrange a funeral. “It’s really sad. But your relationship [with the disabled person] doesn’t have to stop; what’s happened just changes it. It’s an interesting pathway to navigate.”
Many of their clients have suffered sports injuries, like Williams. Others have survived a car crash or an ill-judged dive from a wharf, or have brain trauma from being “king hit”. One man damaged his spine moving a fridge. Most heartbreaking of all are the victims of child abuse.
A family that came under their care last year has some striking parallels with Peter and Charmeyne’s story. A former America’s Cup sailor, Simone de Mari was at Omaha Beach with his young sons when a wave drove him head-first into the sand, breaking his neck. After he’d spent a traumatic five months of being shuttling between Middlemore Hospital and the Auckland Spinal Unit, What Ever It Takes took over his rehabilitation and care.
His wife, Sonja de Mari, says the team created a positive, “super-caring” energy, slotting into the family home in a way that allowed everyone to keep functioning, even though their world had been turned upside down.
The family-centred philosophy of care has resonated with her husband, who’s Italian. For Sonja, hearing what Te Nana-williams has gone through gave her the confidence to keep moving forward, “and to keep putting my hand up when something didn’t feel right”.
She says the staff — and it’s the greatest compliment she could give — are a true reflection of Charmeyne. “All of them bring sunshine into our home.”