My partner, Katie, was diagnosed with multiple sclerosis in mid-2021. It first manifested as a numbness in her hands and feet, coupled with a relentless fatigue that continues to haunt her as a main symptom.
But back then, we didn’t know. Katie had researched her symptoms, Google throwing up countless different potential illnesses (as Google does). MS was one of them, but we both figured such a diagnosis was highly unlikely, at the extreme end of the scale.
With her symptoms not getting any better, Katie went to our GP and was referred to a specialist. An MRI was booked in, and at this point, the faint possibility of an MS diagnosis seemed like it could become a life-changing reality. The morning of the MRI, I told Katie to be brave. Brave she was – braver than I could ever hope to be.
The MRI was conclusive – Katie just knew even before she got the official results. There was no need to use the dye, the radiographer said. Even without, the scan revealed the telltale lesions of MS – Katie lit up not quite like a Christmas tree, but the glowing stars that did shine were enough for the diagnosis to be professionally confirmed.
Katie met me for coffee in central Auckland to tell me the news. Even if on the inside she didn’t feel brave, on the outside, it wasn’t showing.
Not like me. I had no idea what MS really was – I thought it was a muscle-wasting disease that eventually confined its victim to a wheelchair. Over time, I’d overcome that ignorance by reading articles, researching professional documents and attending meetings organised by Multiple Sclerosis Auckland, but that hammerblow of a diagnosis sent my mind – which is ever-worrying at the best of times – into overdrive.
The plans we had carefully laid – buying a house, having children, furthering our careers – were, to me anyway, up in smoke.
Katie was different. She had done her research and knew the true nature of multiple sclerosis – at least, as much as it’s really possible to know about this frankly mysterious condition. Though I can’t say that she welcomed the news or took it easily in her stride, she greeted it with an acceptance that even now I can’t fully comprehend. Perhaps she took comfort in the fact that now she was formally diagnosed, she could begin a plan of action to fight – and that’s what she did, because that’s what Katie does.
Following diagnosis, Katie was swiftly booked into various appointments, which included further discussions with her specialist, a list of various get-togethers she could attend with other newly diagnosed people, and starting the path to the most suitable form of treatment.
After a few tests, that treatment turned out to be Tysabri (or Tyrannosaurus as I call it, because I can never remember its medical name, and I like dinosaurs!), which she continues with today.
It was at this point that I wondered what I was actually supposed to be doing. I didn’t know. I still don’t really know. It seemed pretty obvious that I should be there to support Katie, try and be her rock, be understanding, accepting, and crack on with life as we always have, but I had no real idea of how to do it.
There was very little official literature available as to what partners or those close to people newly diagnosed with MS should do, or what they should expect, or how they should act. So, I did what any rational person would do – I went on the internet, and I headed to Reddit, because that’s surely where I’d get a measured, compassionate and informed response to my questions
(NOTE: my tongue is firmly-in-cheek here as I write that sentence! For those that don’t know, Reddit is an internet forum where questions can be asked, and answered, by anyone. Some of the information is valuable. A lot of it isn’t. All of it has to be taken with a shovelful of salt. Reddit is moderated, but it’s so vast and has so many members, it can feel like the Wild West if you don’t know who or what to believe).
Reddit was not helpful, save for a few tiny snippets of sage advice. The rest revolved around whether or not it was morally acceptable to leave your partner following a diagnosis (the agreed wisdom was, stunningly, that it is), and how to best go about this. Otherwise, it was a minefield of misinformation, heartless viewpoints, and people like me who didn’t have a clue.
So where did that leave me? Where I began, which was the proverbial Square One.
Katie is smarter than me and didn’t use such unreliable platforms as Reddit to do her research. Rather, she stuck to formal medical literature and professional advice. So, I asked her what I should do. Even so, there was and is still little in the way of support for those close to newly-diagnosed MS patients, so I just listened to Katie and made it up as I go along (which is kind of how I’ve bumbled my way through life – it’s served me alright so far!) We keep fighting and trying to stay positive. It’s all we can do.
In the couple of years since diagnosis, I’ve been following Multiple Sclerosis Auckland on social media, and the work they do for those struggling with MS. I saw that they’d put together a team to tackle Round The Bays – an 8.4 kilometre trek along Auckland’s waterfront – and were looking for folk to run with them, to raise both awareness and a bit of cash for the cause
I thought about it, and I didn’t think I’d ever done fundraising before. I’m no Bono, but after years of running (read: plodding slowly and steadily) long distances, I knew I had the tools to finish the race. All I had to do was use the exposure that a big event like Round The Bays brings to help me raise as much as I could, so I put together a few social media posts in the vague hope my friends, family and work colleagues would chuck a few bucks my way.
(Minor disclaimer – there was a dangling orange carrot of an extra incentive to raise the cash. If I could hit $50, I’d get a free MS Auckland t-shirt. I’m never one to turn down something like that!)
So, $50 was my minimum target, and that’s a figure I’d have been absolutely stoked with. I wrote my first post and left it at that; thinking, maybe, if I was lucky, I might get a couple of hundred bucks roll in. The next day, I checked the number, and refreshed the browser a couple of times as I genuinely thought a mistake had been made.
$600 in 24 hours – donations were flying in from friends, family and colleagues all around the world. Given that money was and is tight for many folk, that figure felt all the more significant.
I put it down to perhaps shock and sympathy – Katie had not made a song-and-dance about her condition or shouted about it from the rooftops. It wasn’t exactly a secret, but there were still a fair few people close to us who had no idea. I expected the cashflow to stop after that mad 24 hours.
But the money kept coming in. A week later, and we had broken the $1,000 barrier (maybe helped along the way by my silly, self-deprecating social posts, eventually settling on a grand total of $1,176. Can’t complain about that.
Now it was time to run the thing itself.
What the hell kind of fun is that?’ He may have had the sensibilities of an Old West cowboy from 1885, but the incredulous old barfly in Back To The Future Part III had the right idea. Even today, every time I lace up my running shoes and head out into the pouring Auckland rain, I ask myself why I put myself through it.
I say ‘run’ – it was more of an ambling jog – but I (just about) managed to make it to the end of my road without heaving my lungs up. I stuck at it, painfully but steadily increasing the distance I could cover before having to stop to catch my breath – and I finally caught the bug. I could finally say that ‘running for fun’ was a hobby – even if it’s rarely ever fun.
But there’s seldom been an actual reason as to why I run, aside from simply keeping fit. Over the years, I’ve collected a bunch of cheap medals that live out their days collecting dust in a box under my bed, but that’s as far as ‘purpose’ went.
Well, Auckland’s Round The Bays finally gave me that bona-fide reason to run. Here’s why.
Afterwards, I met with the MS Auckland team in their post-race stand. I met many wonderful people, each with their own story to tell. It was here that I felt like an imposter, a fake, a fraud – these people that must have gone through unimaginable stresses and strains to haul themselves around the course. What right did I, as an experienced, fit and healthy runner, and not suffering from multiple sclerosis, have to wear that orange t-shirt as one of them?
Again, my judgement was misplaced. There were and are plenty of people just like me, who just don’t really know what they’re doing – but what they do do, is try their best, and that’s all we can hope for.
I’ll be wearing that orange t-shirt again at the Auckland Marathon later this year, this time with a better idea of what I’m running for, why, and for who.
Thank you Shane for sharing your story, MS and me.
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