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, 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 I logged out. Where did that leave me? Back 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.
Southern Cross Round The Bays 2023 did not start well for me. Everyone knows that it’s supposed to be, above all, a fun run with a strong emphasis on taking on the challenge in the name of worthy causes, which is what I was doing.
But, it was not fun, at least not at the start. I joined the queues for the pre-race portaloos (which, for an event of this size and magnitude, seemingly snaked for miles), the clock ticking closer to gun time. I shuffled slowly forwards, finally getting into the toilet around five minutes before the race started. All well and good … until I spied a huge, hairy spider waiting for me across the way.
Now, I know spiders can’t hurt me. If I had a dollar for every time someone told me ‘it’s more frightened of you, than you are of it’ I’d probably be able to double the amount I’d already raised. But, the sad truth is, I am afraid of most creepy-crawlies, but especially spiders, which I know may seem strange for a 6’ 2’’, tattooed, bearded Englishman.
I had a choice – either take my chances with Shelob (I do live in Lord Of The Rings country, after all) or, just hotfoot it out of there, forgetting a toilet break and just hope I can hold on for over eight kilometres.
No contest. I ran away, and I ran fast. The rest of the run went to plan!
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.
Shea Tagilala was suddenly paralysed with MS at just 23 but found the lion within to rebuild her life and develop her artistic talents.
The emotional rollercoaster that is navigating a life-changing MS diagnosis has both challenged and strengthened Rochelle
