Carolyn’s Story

Carolyn’s Story

Carolyn Pere's life took a drastic and dramatic turn when she contracted bacterial meningitis, sepsis and thrombocytopenia at 57 years young, resulting in a near death experience and tumultuous recovery journey. She shares her story.

Born in Gisborne, Carolyn describes herself today as ‘Mana Wahine Warrior Toa’ who dedicated & committed the majority of her adult life to the healthcare industry in New Zealand and Australia.

During her tenure at Greenlane Hospital, Carolyn's nursing training laid the groundwork for her outstanding career as a New Zealand Registered Nurse and Midwife. Her education instilled in her a strong/solid foundation of excellence and perfection, professionalism, accountability, and responsibility in the healthcare field.

Carolyn distinguished herself with an abundance of knowledge, skill, and experience, and her commitment to compassionate care was evident throughout her career. Over time, she ascended to the pinnacle of her profession, demonstrating competence and confidence while maintaining a humble demeanour.

Physical fitness and holistic wellbeing has always been a priority for her. She shares “Our Health is Our Wealth” were the words of wisdom from her cherished mother.

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.

Carolyn's battle with meningitis left her with both 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, often inaccurate, with ongoing issues.

Carolyn believes her meningitis likely originated during a scuba diving adventure in Indonesia. Following this trip, she planned a holiday in NZ with whānau. She attended a three-day music and dance festival in Raglan, to celebrate her daughter’s birthday. To Carolyn, music and dance were like a spiritual connection of energy and expression of self.

It was during this period that she began experiencing symptoms like an earache and migraine, but her mental toughness believed this would pass.

She travelled to Gisborne to visit whānau; Carolyn’s 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 darker room to rest. The assessment diagnosis: migraine and ear infection.

Carolyn doesn’t remember much before and beyond this but has since learnt she was discharged and sent home that same day. She explains that in her gut, she believes this was when the medical professionals treating her missed the opportunity to identify her illness as meningitis.

That afternoon, now with whānau, Carolyn’s health had deteriorated, and she became disoriented and agitated with changes in levels of consciousness. Worried for her health, her family called an ambulance that returned her to hospital in a critical condition.

It was here pathology revealed meningitis in her spinal cord, causing severe brain haemorrhages. She was intubated & urgently transferred to Waikato Hospital’s Intensive Care Unit (ICU)

A doctor requested a signed consent from whānau to amputate her fingers, they refused to sign. She was so very blessed this did not happen.

While at Waikato, Carolyn was left unattended with a tracheostomy in situ which led to her sustaining a mechanical fall. This resulted in a further insult to the fragile frontal lobe and Carolyn sustained the traumatic brain injury.

After this fall, the intensivist doctor organised immediate transfer to Acute Brain Injury rehabilitation in Auckland, where Carolyn remained for six months.

Carolyn 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 steppingstones 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 black board, 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 ABI rehabilitation centre. She says that without this support, her recovery may not have been as successful.

In Carolyn’s extraordinary journey, one of the most daunting challenges she faced was regaining her ability to hear. She does not recall how the world suddenly became a silent and disconnected place.

Carolyn’s audiologist shared a comment made by the ENT surgeon, who inserted bilateral cochlear implants (CI), who said the damage to both cochlear from meningitis was the worst ever seen in his career, and the uncertainty towards CI’s unsuccessful outcome was high.

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.”

Carolyn’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,” Carolyn says.

Fiercely committed with a laser vision to heal herself, using her strengths of character of diligence and resilience, Carolyn attributes her attitude and mindset, minimal technology use, healthy nutrition, hydration and exercise as part of the process to an absolutely miraculous recovery.

Carolyn’s 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 reacquired her cycling skills but also participated in four IronMāori events, Ironman 70.3 triathlons, and Maunga to Moana Adventure Ruatoria.

Despite the hardships, Carolyn found light through an AUT research program mentoring others with brain injury, where she was introduced to another brain injury survivor.

Their shared experiences created a unique bond, and Carolyn'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 for Carolyn, but it has also brought her 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, Carolyn has emerged from the darkness onto a path of light, peace & harmony, calm & clarity ready to inspire others with her remarkable story.