Multi-sport athlete and adventure racer, Katherine Ross, was diagnosed with the autoimmune disease multiple sclerosis a year ago. It could have sidelined her racing plans. It didn’t.
Here the 32-year-old Kiwi shares a candid account of what her diagnosis meant and how she’s planning even more epic racing, regardless. Big thank you, Kat, for your inspiration and positivity!
I am a multisport and adventure racer. Kayaking, swimming, trail running, mountain biking… you name it, I’ll give it a go. ‘Average but enthusiastic’ would be my slogan if I had a clothing line.
I also have multiple sclerosis.
I was an athlete before I was diagnosed, and I immediately decided that it would stay that way – I firmly believe that our limitations are not what defines us. However, the reality of life events such as that means we need to step back, take a look at who we are and how we see ourselves, and decide what is important to us – because there are two ways to respond to a diagnosis of any illness. You can roll over and let it happen to you, or you can pick-up your big girl pants, dust off your knees and get on with it. As that is what this blog is all about – you can guess which kind of girl I am choosing to be!
I haven’t always been so motivated and active, although I have always been a child of nature. I learned to swim before I properly learned to walk, and I ‘fell’ into every body of water I could get access to. I trained as an environmental scientist and marine biologist, with the misguided idea that my life from then on would be a haze of tropical paradise à la Jacques Cousteau. I played water sports through high school, but only expanded into ocean paddling when I lived in the Cook Islands after university. I also met my husband there, and he was a keen cyclist (swam like a rock though) – you can guess what happened next.
Me: “Mountain biking is riding a bike off-road. I can ride a bike. How hard can it be?”
Also me: *Crashes in her first event and puts the chain ring through her calf*
Again, also me: *Resolves to learn to mountain bike properly because it’s clearly a thing and we don’t quit things*.
Luckily for me, I’ve got better at mountain biking (and remote first aid) since then. I’ve also strung together the swimming, ocean paddling, trail running and mountain biking to compete in single discipline and multi-sport events in Australia, New Zealand, Mauritius, and the Cook Islands, with plenty more exciting things on the horizon.
My MS diagnosis
Ironically, it was a missed race that led directly to my diagnosis. In late 2017, I was entered into the Australasian Multisport Champs, and was probably the best prepared for an event that I could have asked for. I had had a great run of training, the course suited my strengths and the conditions were shaping up to be my ideal scenario (rough water is good water for me!).
I woke up the morning of the race and felt queasy, but I always get nervous before racing so I ploughed on and began the hour-long drive to the event. By the time we had got there I’d made my husband pull over four times so I could be ill, and couldn’t even hold down water. I ungracefully admitted I’d be cheer squad for the day, and alternated between hurling into bins and giving hubby pointless and annoying tips in transition for his race. After recovering (read: sulking) for three days, I was over what I had blamed as food poisoning, but I’d lost all my hearing on one side. To cut a long story (of specialists and MRIs and hearing tests and steroids) short, three months later I had my hearing back and a diagnosis of MS.
I didn’t know anything substantial about MS when I first started the diagnostic process, and in the beginning my instant terrifying image was of me in a wheelchair. Was I going to decline and be a burden and miss races forever and rot away as a wasted life? Across that process, a few things became apparent:
- I’d been having possible symptoms of MS for about six months prior (that period of numbness in my wrists and hands wasn’t overtraining in the kayak after all).
- A diagnosis of MS does not equal ‘life over’. There is a full spectrum of severity, and I have a lot of influence over the outcome (which Type A control freak personalities like me find VERY reassuring).
- There are an extraordinary group of people out there doing extraordinary inspiring things despite and because of this mixed blessing.
- Even if decline does occur, it won’t mean I have to give up the things I love. Between medical advances, technology for adaptive sports, and sheer stubbornness, I can reframe and modify just about everything if I need to.
- My husband would like me to add that my clumsiness is inherent, lifelong, and despite my best efforts cannot be blamed on MS.
By the time I actually had a diagnosis, I was extremely well educated and prepared for it, and had already begun making the life changes necessary to allow me to live well with this. For those who are like I was and not really sure what MS is/does/means, here’s a short version:
MS is an autoimmune disease, like Crohn’s disease or Hashimoto’s thyroiditis – meaning that the body mistakenly attacks itself as an immune response to a perceived foreign invader. In MS, the attacks occur in the central nervous system (spinal cord and brain). If you imagine the nerves in your brain and spine to be like a phone cable, with the wires inside a protective sheath of rubber; MS attacks the protective coating (myelin) and exposes/damages the nerves underneath.
Then, just like your phone cable, they don’t quite transmit the signals as well as they should – or at all. What THIS means is that your individual symptoms depend on where and how bad the damage is – every single person with MS will have a different combination of symptoms and severity. They can range from fatigue to pain to cognitive impacts to vision and mobility impacts to sensory issues and more – I am stunningly grateful that my strength and mobility are largely unaffected and I am working very hard to keep it that way.
Reframing my priorities
I used the words ‘mixed blessing’ above to describe MS, because I have changed and improved massively since my diagnosis and I count myself lucky to have had the opportunity to reframe my priorities in this manner. I now focus on less races by number and more enjoyment; rather than trying to do everything on the race calendar I am scheduling ‘fun blocks’ as well as ‘race prep blocks’.
My MS symptoms fluctuate over time, which is normal, so right now for example I have consistent numbness in my hands (left side more than right), feet (left side from the calf down) and the left side of my face. This can sometimes affect my grip strength/dexterity on the bike and the paddle, so I am particularly careful to brake early on the bike (rear brake lever is on the left and is VERY important in mountain biking) just in case my hand isn’t as quick to respond as I’d like. It also means I have to be careful not to grip my paddle too tight or I will blow up my forearms and elbows on a longer paddle.
Another thing I work really hard on is my biomechanics. When I get tired, my left leg feels a bit heavier and I need to make a conscious effort to lift that foot more when I run so that I don’t pull the whole chain out of alignment and risk an injury. I definitely notice that my symptoms are more intense when I’m neglecting myself – in periods of more sugar/alcohol, less sleep, over-training, or more stress, they are exacerbated. It is the ultimate motivation and physical reminder to prioritise my health above all else!
My nutrition is a huge focus area, and I am constantly learning and reading and researching to support it. My work-life balance prior to diagnosis was pretty good, but it’s been brought to a whole new level now with a renewed focus on what’s really important. Your health, really, is the most important thing – I’ve learned that work or races or relationships or travel or anything else will not happen in the way you want them to if you don’t prioritise your health. I can confidently say that through the lifestyle changes required to live well with MS, I am physically, mentally and emotionally healthier after my diagnosis than I was before. Sounds counterintuitive, but I am an improved version of me because of it.
You CAN be an athlete with MS
When I was diagnosed with MS, one of the first things I looked for was hope – examples of athletes with MS who were getting on and achieving their goals anyway. I didn’t know enough about MS, and I was terrified that I might lose that. However, it turns out there is a whole community out there of people with MS doing amazing things. I was lucky enough to meet lawyers, and health professionals, and athletes; and to connect online with a group of incredible people who are kicking goals and living full and expansive lives in which MS is just a detail. But that important detail is pushing them to prioritise their health and wellness in ways that really should resonate with all of us. I am resolute in my intent to be one of those people, and maybe inspire someone else along the way *crosses fingers*.
In an attempt to do just that, last year I competed in a stage mountain bike race – the Cape to Cape MTB Race – and raised money for MS Research Australia through the preparation and completion of what was a massive personal challenge for me. It was the first multi-day event I’d ever done, I ended up breaking my ankle in training, and I was genuinely terrified of whether my technical skills were up to the task. But as they say, “You cannot be courageous unless you were at first afraid”, and I worked my ass off so that I knew I would at least be fit, if not gnarly!
I was lucky enough with the generosity of friends, family, colleagues and complete strangers to raise $2900 (my goal was $2000) for an organisation who is at the forefront of research into aspects that could materially change my outcomes, as well as help to prevent the next generation from suffering from MS in the way that so many people have and do today. To contribute to that goal was very humbling and extremely motivating in training and racing – shut-up legs; one more hill; think about what you’re achieving. I ended up sobbing with pride and relief on the finish line on Day 4 – MY LEGS, my imperfect MS legs, had done what I set out to achieve and I was a little overwhelmed (PSA: don’t cry at the finish, that’s where the cameras are).
My biggest, most epic events yet
My 2019 goal events are coming up at an alarming rate. In two days’ time, I’ll be starting the BC Bike Race in North America, a 7 stage mountain bike race across the incredible terrain of British Columbia in Canada; and then when my legs are completely gassed out I’ll be going down to the US to compete in the Gorge Downwind Champs in Oregon – a paddling race with the best female participation rate on the planet.
Women in sport is another key passion for me, and over a quarter of the field will be women (normally for downwind paddling the ratio is about 10%). I am an ambassador for Women Who Paddle in 2019, and I am super-excited to be a part of that event in that capacity. My preparation for these events has been tempered by injury (spinal and sciatic nerve injury from mountain biking, but exacerbated by MS), so my focus has been on quality over quantity. As someone who struggles mentally when restricted, it’s been a real opportunity for me to work on my resilience, reframe my goals (let’s face it, I wasn’t going to win the thing anyway), and dial in the enjoyment and achievement factor.
My goals for the future are simple, and reflect the uncertainty of life that we all go around blithely ignoring most of the time. None of us are guaranteed our time, or our health – there is no ‘life code’ which says any of us will be fit and healthy in our old age to do the things we put off until then because we’re so busy working/paying bills/modern life-ing.
So, I’m not taking anything for granted – I’m taking as much control over my health as I possibly can; and I’m ticking off my list of achievements now. I’m not by any means an elite athlete – but I can try as hard as one. You are capable of far more than you realize, and trying is the first step.