Grace Archer fell critically ill with listeria while working as a teacher in Rarotonga in 2020. Photo: Warwick Smith / Stuff
Grace Archer was living in Rarotonga in 2020 when she contracted listeria and became critically ill with brain abscesses. Back in New Zealand and on life support, her family were told to prepare for the worst. Four years later, Archer reflects on the 'hell' of being locked in, and her miracle survival.
It would be easy to feel sorry for what she has lost, but 32-year-old Grace Archer says her story is not one of sadness. It's a story of resilience, the power of positivity and a miracle survival.
A listeria infection saw Archer fighting for her life in 2020, including a period where she suffered with locked-in syndrome, which left her family wondering if she was still 'there'.
Before her life-changing illness, Archer was living in Rarotonga and working as a primary school teacher, following in the footsteps of her mother and grandmother who were also teachers.
The island lifestyle was paradise, she says.
"I worked hard, but any spare time was spent swimming in the turquoise blue lagoon, having a barbecue on the beach or driving around the island, with the wind in my hair, on a moped scooter."
In April that year, Archer began to feel ill: a dizzy and tingling feeling in her head, severe headaches, a sore ear and neck. She was off her food, had numbness on the left side of her face and couldn't walk in a straight line.
"Grace would start feeling not too bad, but then it would go right back," her mother Kelly O'Connell says. "It was quite a long time, a few weeks."
Things escalated when she woke up with double vision. Soon her speech was uncontrollably loud and slurred, and she became confused.
Archer needed urgent care and medical resources unavailable in Rarotonga.
"The decision was made... Grace needed to be sent by an emergency plane to Auckland City Hospital," O'Connell says.
Archer never expected this would be her permanent departure from her tropical paradise.
"Weirdly enough, I honestly didn't think that it was that serious. I thought that I would need some kind of medical attention but that I would soon be back, teaching in Rarotonga."
It was in hospital that doctor's discovered what was causing Archer's rapid deterioration - listeria meningitis - which led to encephalitis - an acute swelling of the brain.
The listeria infection caused abscesses to grow on Archer’s brain stem, which caused brain damage. Photo: Supplied / Stuff / Grace Archer
Listeria is a dangerous bacteria found in soil, water, manure and some dairy products, symptoms include fever, vomiting, muscle aches, convulsions and in severe cases can cause death for those that are immuno compromised.
Archer's infection was the first case reported in the Cook Islands in over a decade, with no cases since. Despite a thorough investigation involving a review of the foods Archer ate prior to becoming unwell, the source of the listeria was never found, Cook Islands secretary of health Bob Williams told Stuff.
In hospital, Archer began having seizures and was put into an induced coma.
When O'Connell first saw her daughter through a glass window, it was a "total shock".
"Grace was just lying there with things coming out of her.
"It was so good to be able to see her, but we were very sad that it was such a difficult situation. We couldn't touch her, talk to her."
While in a coma, Archer underwent two brain surgeries. Scans revealed she had abscesses on her brain stem.
"When they tried to take me out, I stayed in the coma for over a month.
"At my worst point, I was on life support. My family was told to prepare for the worst. They were told that if I were to survive I would probably get pneumonia and die.
"Otherwise, I would likely have severe brain damage and no quality of life."
O'Connell said she refused to prepare for a funeral. In her heart, she knew her daughter would make it.
"She's remarkable."
After four and a half weeks, Archer woke up. She could blink, but was otherwise completely paralysed, due to severe damage to her brain stem. Doctors were reluctant to officially diagnose locked-in syndrome, as Archer could move her eyes horizontally, but agreed she had elements of it.
It was "hell on earth," she says.
"It's when you are completely paralysed but can move your eyes and the brain is completely intact. It felt like I had been kidnapped and locked in a room, where no one could hear me screaming."
O'Connell decorated Archer's hospital room with photos of her friends an family, sung Amazing Grace and washed her hair.
"She was basically lying there with no reaction whatsoever. But I knew she would enjoy it.
"I tried so hard not to be upset in front of her."
Archer is working towards her goal of walking without assistance. Photo: Supplied / Stuff / Grace Archer
Three weeks after she came out of her coma, a speech therapist presented Archer with an alphabet board, allowing her to communicate with her family for the first time since she got sick.
"I was to blink when the correct letter was said, they wrote it down and eventually a sentence was formed."
Her first words were, "Hi mum."
"That was a special moment because everyone knew I really was there and, for me, I could finally communicate," she says.
Those two words meant everything to O'Connell.
"I was just so excited.
"For her to say that, it was like my little girl coming back."
In November, about six months after she was admitted to hospital, Archer was discharged.
"It's incredibly rare for people with locked-in syndrome to recover, so it was a miracle that I did."
But her journey was far from over. The abscesses on her brain stem left her with severe speech difficulties, vision impairment including double vision, emotional liability (rapid mood changes), facial paralysis and ataxia (affecting balance and coordination).
Archer was denied ACC funding and a spot at the Acquired Brain Injury Rehabilitation Centre as her brain damage did not occur in an accident, but receives government funding for physiotherapy, hand therapy, hydrotherapy and a psychologist.
Archer, pictured here with her siblings during her university graduation, wants to be treated as the intelligent adult she is. Photo: Stuff / Warwick Smith / Manawatū Standard
Adapting to life as a wheelchair user had been a "psychological journey".
"Being low, especially in crowds, can be challenging.
"There have been so many changes to my life but they have just been something I have had to get used to.
After living with family in Hamilton for three years, Archer moved to Palmerston North to live with her mother, where she is continuing her therapy, along with pilates and deep tissue massages to relieve pain.
The hard work is slowly paying off: Archer's speech is improving and she's up on her feet, walking around the house with the help of handrails, and using a walker to get from the car to her appointments.
"I would love my speech to get to a place where I don't stand out in public.
"My long term goal is to walk again."
O'Connell thinks the experience has made her daughter more "bolshy".
"She knows how precious life is. No more pussyfooting around."
Archer would also like to return to the classroom and teach children about inclusion and diversity. She's also working on a book and is sharing her rehabilitation journey on Instagram.
"Over time, I have come to realise that living with a disability is still living. It is my choice whether I choose to make it a great life or not."
While Archer has had to grieve aspects of her past life, she's thankful to have been brought closer to her family, including her little niece and nephews, and a very proud mum.
"This is traumatic. But its becoming beautiful because she's just beautiful," O'Connell says.
"She really is amazing Grace."
- This story was first published by Stuff