I was diagnosed with Primary Progressive Multiple Sclerosis in December 2022 at the age of 48. The year that followed was a blur of anxiety, depression, and panic—an almost constant fear about what MS might do to my mind and body. Like many newly diagnosed people, I went straight to Google and typed in every terrifying question imaginable: life expectancy with PPMS, how people with PPMS die, rates of paralysis.
At the time, Ocrevus hadn’t yet been approved in New Zealand for PPMS. It took ten long months from diagnosis to my first infusion. And of course, that meant more Googling: How many people does Ocrevus actually help? How much disability can I expect even if it works?
I’ve since learned that this descent into the rabbit hole is practically an MS initiation ritual. It’s a very human response to a very frightening disease. And then comes grief—messy, nonlinear, unpredictable grief. The five stages don’t arrive in order, and “acceptance” is more of a unicorn than a destination. I’d get close to it, only to be reminded—by a stumble, a fall, a moment of my new reality—that I wasn’t there yet.
I’m a person of faith, but not in the “everything happens for a reason” sense. I don’t believe MS is a divine lesson or a cosmic plan. Honestly, I think it’s luck of the draw. My genetics coded for this crap, and that’s that. There’s no going back to childhood to soak up more vitamin D, no magical EBV vaccine retroactively protecting me. We all have our theories about what causes MS, but none of them rewind the clock.
I live with disability now. I limp from left‑leg weakness and nerve issues. I can’t walk far or for long. I use a walking stick outside because my balance is unreliable. My hands sometimes refuse to cooperate. Nerve pain, stiffness, and numbness are my constant companions. And yes—many in our MS tribe have more challenges than I do. I know that.
People love to say, “Don’t focus on what you can’t do—focus on what you can do.” Blah blah blah, I say with a cheeky grin. But something did have to shift. I couldn’t stay in denial forever. Life doesn’t pause for MS. Mortgages still need paying. Kids, partners, employers, neighbours, and our MS community still rely on us. As much as I sometimes want to, I can’t just opt out of life. People tell me I’m strong or brave. I don’t know if that’s true. What I do know is that I found a way forward.
After my first year of treatment, my husband and I decided to travel to Colorado to see my family. I dreaded it. I went down the “travel with MS” rabbit hole and prepared for every worst‑case scenario. But what happened surprised me.
We booked wheelchair assistance in Auckland, Los Angeles, and Denver. In Auckland, after a bit of confusion, an attendant whisked me through the airport. At LAX, another attendant met us at the gate and guided us through the back corridors and straight to the front of the customs line—before the crew, even. I felt like a VIP. In Denver, I discovered the joy of electric shopping carts at Walmart. I could browse for hours. I wasn’t hating any of this.
When we returned home, I felt genuine gratitude. My first trip with MS hadn’t been a disaster. In fact, it showed me that accessibility can make life not just manageable, but sometimes easier. Here in New Zealand, I’ve come to treasure mobility parking. I can swing my car door wide open and still have room to clumsily manoeuvre myself out. Small things, but meaningful ones.
MS has also sharpened my empathy. It’s not that I lacked compassion before, but now I understand chronic illness and disability in a deeper, more embodied way. Through my work on the MS Auckland Board, I meet others living with this condition all the time. I feel connected to them. We share a genetic anomaly that only about 0.036% of the global population has. That makes us special—maybe not in the way we’d choose, but special, nonetheless. And since we can’t change it, we support each other and keep pushing toward better treatments and, one day, a cure.
When you’re down the rabbit hole, don’t forget to look for the gems. I stumbled on one that genuinely helped me — something actor Michael J. Fox said about living with Parkinson’s, a condition not so different from MS. When asked how he stays hopeful, he replied: With gratitude, optimism is sustainable. If you find something to be grateful for, then you find something to look forward to.
Maybe focusing on what I can do—and being thankful for it—isn’t such terrible advice after all.
An MS diagnosis can feel like the forest of your life has burned down. But burned forests fertilise the soil. They make way for new growth, new ecosystems, new life. Everything recombines. Something different emerges. I’m not saying it’s good that the forest burned. I’m saying that when it does, it doesn’t have to be the end. It can be the beginning of something unexpected—maybe even something beautiful.
Tobias soon became an invaluable part of MS Auckland's volunteer team. He shares an insight here on why he volunteers and his goals.
Lisa Percy found herself with a rare and sever autoimmune disease of the central nervous system. Known as NMO, this allied neurological condition is one of the several conditions also supported by MS Auckland, aiming to reduce isolation for people with very niche diagnoses.
