38-year-old disability advocate faces disabled future after massive stroke

Chloe Ann-King's world completely changed on 9 July - or so she's told. She's lost all memories of over a week of her life, and has to piece together what happened to her, and when, through accounts from friends and family.

It says something about her situation that Ann-King calls the amnesia, while confusing, "the smallest thing I'm facing".

What happened on 9 July was that the otherwise fit and healthy 38-year-old Aucklander suffered a massive stroke.

Specifically, she had a subarachnoid haemorrhage secondary to a V4 vertebral artery aneurysm. It's rare, even among the much older people in whom it is most common.

That's perhaps why Ann-King was sent home from a doctor's appointment the day before the stroke under advice to take paracetamol, despite presenting with severe headaches and neck pain - both common symptoms of a subarachnoid haemorrhage.

Ann-King doesn't remember the headaches or the doctor's appointment.

Or the following day, when she had a seizure during lunch.

She's lucky, she says, to have been with friends, who immediately called an ambulance. Even with that fast action, she nearly died.

"The ambulance people basically said if I was 80, there would have been no point in resuscitating me," she says. "I have been told some pretty jarring stuff about what happened to me… People can remember how painful the aneurysm was (but for me) it's like, nada. Which is probably a good thing."

Ann-King was put into an induced coma. She had one operation to put coils into the back of her neck to stem the aneurysm, and another to put lines into her skull that would draw blood away from her brain. A tracheotomy tube was inserted to help her failing respiratory system.

Friends and family who rushed to her side, including her mother and twin sister, were told she may not make it through the night. If she woke up at all, doctors warned, Ann-King may be permanently brain damaged, or disabled.

"When I was maybe four weeks in I started coming to and realising I'm really unwell and I can't walk," Ann-King says. "I couldn't even move my arms or my hands. It was pretty shocking. Your whole world changes overnight."

Ann-King knew she had a long, hard road ahead of her if she was going to be able to live independently again.

But she also had a better understanding than most of the challenges that would face her after she left hospital. Ann-King is the founder of the Raise the Bar Hospitality Union and more recently a community advocate for Auckland Disability Law, which provides free legal services to disabled people.

Based on that experience, Ann-King was particularly concerned about where she would live.

"A lot of people on (the stroke) ward are boomers," she says. "They have houses they can modify. If you're young and this happens to you you just take the lottery, really, of housing: are you going to get anything that's accessible?"

Housing New Zealand told Ann-King there would be a two-year wait.

"Compared to most people I'm already well connected to Disability Services," says Ann-King. "I've got amazing skills at WINZ and even with that skill-set, it's impossible."

In the end, Ann-King found an apartment on TradeMe that was accessible enough given she would be living with another person - "somebody already in my life" - who would be able to help her.

"I can't live by myself because it's too dangerous," she says. "I just had to find something… If you don't have really supportive family and friends, what do you do? Even in hospital, if you don't have someone to come and do washing for you, what do you do?"

Ann-King moved into the apartment on November 20, after nearly four-and-a-half months in hospital. That's earlier than she was originally told, but her recovery has been much faster than expected - something Ann-King puts down to her own determination and an "incredible" physical therapy team at Auckland City Hospital.

"When I first came to rehab I literally couldn't drink water, now I'm eating and drinking. I couldn't stand or walk. Now I can walk pretty well (though she mainly uses a wheelchair). I couldn't even go to the toilet and now I can, so that's a win."

Still, she was "very nervous" about leaving hospital. She's having a Hato Hone St John alarm installed, friends are lined up to check on her regularly, and carers come in three times a day to help with "basic stuff".

Mainly, though, Ann-King's excited: to be out of hospital, to have some privacy, and to get back to work - which she's fortunate she's able to do, from home.

"I know I'm meant to say I've had some major epiphany," Ann-King says, "but I'm just going to keep fighting the good fight. Honestly I'm just going to keep doing what I was doing."

*Emily Brookes is a freelance lifestyle and entertainment writer

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