However, in January 2017 her life would take a dramatic and drastic turn as she embarked on what she now calls the “Highway to Hell”.
“I admire unique individuals who have encountered what I have experienced, and who chose to shine,” she says.
Pere’s battle with meningitis left her with an acute and a traumatic brain injury, profound deafness, trans ischaemic attack (TIA) seizures and debilitating hallucinations that transformed her life into a daily struggle.
Her brain function, memory and hearing were totally unreliable for several years, untrustworthy and often inaccurate.
Pere believes her meningitis likely originated during a scuba diving adventure in Indonesia. After the trip, she planned a holiday in NZ with whanau. She attended a three-day music and dance festival in Raglan, to celebrate her daughter’s birthday. To Pere, music and dance were like a spiritual connection of energy and expression of self.
It was during this period that she began experiencing symptoms such as earache and migraine, but her mental toughness believed this would pass.
She travelled to Gisborne to visit whanau; her migraine didn’t improve.
The next morning was spent in ED at Gisborne Hospital. As the lights of ED were too bright, she was moved to a darker room to rest. The diagnosis: migraine and ear infection.
Pere doesn’t remember much before and beyond this but has since learned she was discharged and sent home that same day. She believes this was when the medical professionals treating her missed the opportunity to identify her illness as meningitis.
That afternooon, now with whanau, Carolyn’s health deteriorated, and she became disoriented and agitated with changes in levels of consciousness. Worried for her health, her family called an ambulance, which returned her to hospital in a critical condition.
Pathology revealed meningitis in her spinal cord, causing severe brain haemorrhages. She was intubated and urgently transferred to Waikato Hospital’s Intensive Care Unit (ICU).
A doctor requested a signed consent from whanau to amputate her fingers. They refused to sign. She was so very blessed this did not happen.
While at Waikato, Pere was left unattended with a tracheostomy in place, which led to a mechanical fall and Pere suffered a traumatic brain injury.
After the fall, the intensivist doctor organised an immediate transfer to acute brain injury (ABI) rehabilitation in Auckland, where Pere remained for six months.
She faced a long road of rehabilitation, struggling with walking, hearing and the effects of her brain injury. She spent a total of eight months in intensive care, high dependency and acute brain injury rehabilitation centres.
“Very tiny stepping stones provided a limited gateway on how to survive with brain injury,” she says. “I knew nothing about anything.”
Her memory from this period was non-existent. “Like chalk on a blackboard: entire past memories wiped clean,” she says.
Challenges included an inability to walk or stand, confusion, chronic severe brain fatigue, loss of independence and frequent suicidal thoughts. She required a caregiver for the first two years, from the ABI centre. She says that without this support, her recovery may not have been as successful.
One of the most daunting challenges Pere faced was regaining her ability to hear. She does not recall how the world suddenly became a silent and disconnected place.
The ENT surgeon, who inserted bilateral cochlear implants (CI) said the damage to both cochlear from meningitis was the worst ever seen in his career.
The journey to rediscovering sound was far from simple. She describes the moment when her first implant was switched on as noisy and disorienting, nothing like the familiar sounds of speech. It was like learning to hear all over again.
“At the beginning I do not recall being deaf. Vague memories and confusion made me believe I could hear,” she shares.
“There were no guarantees on the progress of my recovery,” she continues. “This was unknown and unspoken territory and it seemed like forever. I kept believing ‘one day at a time’ would take me where I needed to be, wherever that was.”
Pere’s family played a vital role in supporting her, particularly her sister, Janine.
“My utmost respect to my sister, who became my ears, my brain, my voice, staunch protector and guide during the torturous challenges,” Pere says.
Fiercely committed with a laser vision to heal herself, using her strengths of character of diligence and resilience, Pere attributes her attitude and mindset, minimal technology use, healthy nutrition, hydration and exercise as part of the process to an absolutely miraculous recovery.
Her determination to regain her life is nothing short of remarkable. She turned to triathlons as a source of healing and strength. She began by relearning the basics of riding a bike. Her brain was unable to stop at a fence, turn left or right, balance or use brakes, a task that once came naturally to her.
With time, effort and support, she not only regained her cycling skills but also participated in four IronMāori events, Ironman 70.3 triathlons, and Maunga to Moana Adventure Ruatoria.
Despite the hardships, Pere found light through an AUT research programme mentoring others with brain injury, where she was introduced to another brain injury survivor.
Their shared experiences created a unique bond, and Pere’s mentorship provided her with a sense of purpose and connection - and acceptance that brain injury is a part of her life and future.
Sharing her story has been an emotional process, but it has also brought a sense of relief and accomplishment. She sees her journey as a masterpiece in progress, a testament to her strength, self-discipline, and the power of the human spirit.
With determination, dedication and the support of loved ones, Pere has emerged from the darkness, ready to inspire others with her remarkable story.
