RIDE TO FIGHT NEURO | SUNDAY 14 JUNE | 130KM | 100KM | 60KM | CIRCUIT CHALLENGE
Meet Erica & Karl
For most of her life, Erica Meakin was the kind of person who ran headfirst into adventure. She and her husband Karl had a reputation for being the couple who lit up every room. They were the first on the dance floor, the earliest out the door for a weekend hike, the pair who always said yes. Their love of energy, fun and change even led them to emigrate twice. First from England to New Zealand, then from New Zealand to Australia.
But behind the laughter, Erica’s body had been quietly warning her for years. She remembers a photo vividly. In it she is fast asleep in bed while Karl paints the walls around her in full renovation mode. At the time she dismissed it. “I put it all down to the stress of renovating our house to sell followed by the stress involved in organising ourselves to emigrate from England, and I didn’t think too much further about it,” she says.
Years later, those early symptoms would make far more sense.
Erica was in her mid-30s when her GP first suspected multiple sclerosis. She had developed optic neuritis, and the GP explained that this was usually the first symptom of MS. “That along with me being white, female and in my mid-30s led the GP to think I had MS,” she says. But when scans showed no lesions on her brain, the concern faded. Life carried on.
Then in 2019 everything changed.
After moving to Brisbane, Erica’s vision suddenly went jet black in her right eye. Within hours she was paralysed from the breastbone down.
Specialists discovered a large lesion on her spine, and she finally had an answer. She was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD), a rare autoimmune condition that attacks the optic nerves and spinal cord.
The diagnosis devastated Karl. “Researching NMOSD online back then was very dark, making Karl think the worst,” Erica recalls. She had been working in a good but stressful job that she quickly realised she would need to leave.
“He was selling the car, selling the Thermomix, selling everything to try and stabilise our finances. He was concerned his wife was dying and he was away from family who were all back in England.”
At her lowest point, Erica reached out to MS Queensland. She remembers feeling hesitant. “My first reaction was, ‘But I don’t have MS’, not knowing that MS Queensland advocates for people living with all neurological conditions,” she says. But that call changed everything.
“MS Queensland helped me get NDIS access, find community support in my area, and lent me a kind ear when I had nowhere else to go. I used to ring the Neuro Assist line and cry down the phone and the MS Queensland staff at the other end just got it.”
Stress would later trigger another diagnosis for Erica; Functional Neurological Disorder. She now experiences dissociative seizures that shut her body down for 30 minutes to three hours. Some come with warning signs. Others do not.
“I can’t be woken during that time and when I do wake up I’m exhausted,” she explains. Heat is a major trigger, forcing her to adapt her lifestyle dramatically. “In summer I tend to live like a vampire,” she says, spending days indoors and venturing out only in the cool of the morning or evening.
These seizures have taken away much of her independence. “I can’t just drive to a café for a coffee by myself. I can’t be left alone to look after my grandchildren.” Then she adds softly, “I’m not the Nanna that I always thought I’d be.”
Their once adventurous social life changed too. “We were no longer the ever fun, always out and doing things couple. We had to say no to things and after a while people stopped asking.” But Erica explains that fun looks different now, not absent. “Life is fulfilling but sometimes hard too. We try to still be spontaneous. It is who we are. However, we do it with a modicum of organisation and plenty of recovery time.”
Despite everything she has endured, Erica has become someone others lean on. “I have become the person at the other end of the line when someone is newly diagnosed with NMOSD,” she says. She shares the mantra that helped her survive the shock of her own diagnosis. “Just breathe. Sit with your diagnosis. You do not have to know how you should feel or how you should react. You can just be.”
Erica’s story — and her courage — are the reason people like you make such an extraordinary difference. Every cyclist who takes part in MS Brissie to the Bay helps ensure that someone like Erica has a team behind them when their life suddenly turns upside down.
When you ride and fundraise, you help provide the support that carried Erica through her darkest moments. You help create the community that wrapped its arms around Karl when he desperately needed someone who understood. You help ensure that no Queenslander facing a neurological condition must do it alone.
Erica often says that MS Queensland “just got it” when she reached out. To everyone taking part in the MS Brissie to the Bay, she wants you to know something just as powerful. Because of you, countless families will feel seen, supported and held. Because of you, hope reaches people at the exact moment they need it most.
