Carol Cooke AM was made a Member of the Order of Australia in 2014, a gong that recognised the comprehensive list of contributions and achievements that Carol has made to the Australian community over almost 15 years.
Among many achievements, Carol is a Paralympic gold medalist (London), a dual paracycling world champion, the 2013 Victorian Cyclist of the Year and a former member of the Toronto Police Force in her native Canada. Carol Cooke also has multiple sclerosis.
On Sunday, 2 November 2014, Carol and almost 10,000 other avid cyclists rode from Sydney to Wollongong in the annual ‘MS Gong Ride‘, a 90km cycling event that raises funds for people living with MS, like Carol. MS Australia aims to raise $3.8 million for MS support services through this year’s ride.
Before the Gong Ride, RIDE Media spoke to Carol about her experience as a high performance athlete and the importance of the annual Gong Ride to MS Australia.
Here is a transcription of our conversation with Carol.
Note! Donations to MS Australia for the Gong Ride are open until the end of November. You can visit www.gongride.com.au to make a contribution.
RIDE: I’m speaking with Carol Cooke who’s an ambassador for the Sydney to Gong Ride that MS has been running now for thirty odd years. Carol, can you tell me a little bit about your diagnosis, how being a high performance athlete was impacted by your being diagnosed with MS.
Carol Cooke: “Well I couldn’t call myself a high performance athlete really at the time of my diagnosis. I was a swimmer in Canada and on the squad for the 1980 Olympics and when we boycotted and that didn’t happen – we followed the US boycotting Moscow – I basically kept going with sport but not to that elite level and (I) went into the working world and my life.
“I eventually met my husband and moved here in Australia and was still swimming, just for fitness, not any kind of elite stuff, and then was diagnosed in 1998 with MS. And it wasn’t delivered to me very well. I mean the guy knew I was into swimming and I met my husband at a local AFL football club, so I was running around the field as a trainer and taking part in that, and when I was diagnosed, this – I call him a ‘so-called medical professional’ – was very blunt.
“He basically just said, ‘Look, I suggest you go home and put your affairs in order before you become incapacitated.’ So I’m was just sitting there going, ‘What?’ I think that was the only word I said, and he said, ‘Well, you heard me, you’ve got MS.’ He said, ‘You’re never going to do any of this sports stuff again.’
“That, probably – other than being incapacitated and him not giving me any information – that plus the fact that I’d never be involved in sport again – was kind of like, you might as well cut my head off, because sport had always been part of my life in some way and I guess it’s really good that I’m pig-headed and stubborn and I guess at the beginning it was a sense of denial because most of my symptoms had gone away that, ‘No, no-no-no, this isn’t happening, this isn’t me and I’m just going to continue,’ and reality hit when symptoms reappeared and I felt, ‘Well, OK, how can I incorporate MS into my life instead of letting it run my life? How am I going to keep doing what I’m doing and live with MS?’
“And so I basically did that, I mean I just kept swimming and kept involved. It wasn’t until probably 2005 when our swim coach at the masters club has talked me into swimming as a swimmer with a disability and I got classified through the Paralympic program as a swimmer. And in 2005 the World Masters Games were being held in Canada and of course it was a good excuse for a visit home, but for the first time ever in a Masters Games they were having Paralympic events in swimming and athletics and that was my first foray into disabled sport I guess you could say. So I went over to Canada, was quite surprised at how many people – masters – there were that were classified, and came home with a swag of medals.
“And that’s when the Australian Paralympic committee got in touch with me, not knowing how old I was – I was 45 at the time – and they suggested that I come to a talent search day, which is usually for kids, teenagers, you know, looking towards the future and the Paralympics. It was a quite funny exchange of emails between them an myself and I said, ‘Do you have any idea how old I am?’ And they said, ‘No,’ and I said, ‘Well my brain thinks I’m 21; my body knows I’m not,’ but they said, ‘Come anyway.’
So I did, and I was over 20 years older than the oldest person there, but I went through all the testing with them and that’s when a couple of weeks later I got a letter saying can you take up the sport of rowing because it’s a new event in 2008 Beijing, and we’re looking for rowers. So I thought, ‘Oh OK,’ so I did. And then that’s where my elite sporting stuff started from.”
And so the first elite sporting event was that 2008 Olympics?
“Well, no, I actually made the crew, we tried to qualify and it was around May of 2008, because for rowing most of the qualification spots are taken up from the world championships the year before an Olympics or a Paralympics. So there were three spots left and they always leave that open – you only get to qualify 12 boats per classification worldwide for Paralympics or Olympics and so there’s three spots left just before – so we headed to Munich and a World Cup, where we had to make it into the top two because the third spot was always a wild card entry and they never guaranteed that.
We missed second spot by point-eight of a second, and we didn’t get the wild card entry, and so we had all these thoughts that ‘We’re going, we’re going, we’re going’, and then all of a sudden we weren’t going.”
How did you cope with that, Carol? Because obviously you had – well I say obviously, but I presume you had trained in spite of – and because of – having MS. How did you cope with that disappointment of not making one of those three spots?
“Oh look, it was – when we got back to the dock, I couldn’t get out of the boat, I was that spent. My legs had just given up. So they lifted me out and they were going to go get a wheelchair and I said, ‘No, just leave me here.’ And to be honest, I cried like a baby.
“You know, all those years before thinking maybe I’ll get to – I mean my goal being the 1980 Olympics – and then because of politics, not being able to go and then all these years later here I am, in 2008 thinking, ‘Wow, this dream’s gonna come true.’ So yeah, I was a bit devastated. Because I hadn’t planned anything past that, you know? It was training, training, training, let’s make this crew, let’s get the crew together – because we came from all over the place, obviously in Australia being so far removed from one another – and we didn’t have a lot of time together but what we did we thought yep, we can do this, we can do this.
“And then it was like, ‘What do I do now?’ And I figured at the age of 47, I thought, ‘I can’t – I honestly can’t do this anymore’, because it was a fine balancing act between doing enough to remain at that level and doing too much and having my MS kick in. So I figured that was going to be it until my sister gave me a swift kick up the … (She said), ‘Just take it a day at a time, you know, a month at a time, a year at a time.’
“And funny enough I worked so hard to get there in that May, to when I got back to Australia in June of 2008, I had a pretty major relapse and ended up in hospital again, so I thought, ‘Well, I pushed and pushed, maybe I’ve got to step back a bit and just take things – learn to say no, for one – and then learn to listen to my body and rest when I needed to.’ So I thought, ‘OK, well I’ll take my sister’s advice and just keep going.’
“And I did, I made the crew in 2009, we went to the world championships and we actually made the final, you know – we didn’t do it the year before to make it to Beijing, but we actually made the final in 2009 and we came sixth. So to go from nothing to all of a sudden being sixth in the world kind of made up for not making it to Beijing, and all of us in the crew, we kind of thought, ‘Well that’s good, now we’re well on track for London, you know, we’ll just keep going.’
“Unfortunately, as politics are in sports, Rowing Australia decided they weren’t interested in our crew. The gentleman who was in charge of high performance back then, he just decided, no, no, not interested, and that carrot was pulled away – you know it had been dangled in front of us trying to get there, and then it was gone.
“One of the other girls that I had been rowing with from NSW, Alexandra Green, she had switched to cycling and she knew that I had a trike that I’d been riding just as cross-training back and forth to rowing, and she called me and she said, ‘Carol, they’ve got a trike category at the Paralympics,’ and I went, ‘What?’, because I didn’t know about that, and she said, ‘Yeah, why don’t you come up to the cycling championships in April?’ – This was January 2011 – ‘Why don’t you come up to Queensland in April and race at nationals!’ And I’m like, ‘You’ve got to be joking, right?’ And she talked me into it and funny enough I went up there, knew nothing about what I was doing, just went all out, had no idea what kind of qualifying speeds or what I would need to do, it was more just ‘Let’s go up and have a good time.’
“After the time trial, the head coach, Peter Day, came up to me and he goes, ‘My god, where did you come from?’ And of course, not understanding where he was coming from, I said, ‘From Melbourne.’ And he said, no, with your cycling! You’ve just smashed qualifying speed for the national team for the trike category.’ I just kind of looked at him and said, ‘Well, what was that?’ He just shook his said and said, ‘Let me talk to your coach’ and I went, ‘Well, I don’t really have one’, so that was it. And that was the start of my cycling.”
And so Carol, could you say – I know you’re still involved in swimming and so forth – where does cycling sit in your passion for the sports in which you’re involved? Not to make a competition out of it, of course…
“Well it’s funny, I was just talking to a bunch of a hundred 12 year olds the other day, junior footballers, and one of them asked me that question, ‘What’s your favourite sport?’ I said, ‘Look, I can’t say I have a favourite, but I actually really enjoy cycling. You know, I find the social aspect of it really fabulous, I love going out and doing a really hard session, I love challenging myself – like I got a new coach at the start of this year and she has challenged me to do things that I never ever thought that I’d be able to do. It just goes to show that I feel like I really am still young as a cyclist in my abilities and even though my age is creeping up, I think that’s why I know I can get better at doing it.
“I’ve met some amazing people who have become wonderful friends through cycling, just because you’re out riding and you meet somebody and you start having a chat as you’re riding – you really can’t do that while you’re swimming and you can’t do that while you’re rowing. And so I love it. I’ve been back from world championships since September 5 and my trike got damaged on the way home. I haven’t had it since then and I’m actually going through withdrawals as I haven’t been out riding so it just proves to me that yeah, I think I’m hooked.” You love it? “Yeah.”
Carol, you mentioned earlier that it’s really important for you to listen to your body. If I can pose the question about your favourite sport in a different way, which of the sports you’re involved in does your body like the most?
“Look, it probably likes swimming the best only because of the buoyancy and the fact that, you know, there’s no pounding on the body. It really hates rowing. My MS really, really hates rowing. It really affects my body a lot. So I’d have to say, yeah, swimming would be the best for me, but I’m finding that with cycling it’s actually made me a lot stronger and it’s made me able to cope with a lot of the symptoms of MS a lot better.”
Is that right? Can you give me an example of a symptom that may be dealt with by cycling?
“I think my sleep levels. There’s usually not a day that I couldn’t get by without having you know, what we call a ‘nanna nap’ in the afternoon. And I find that over the last three years that I’ve been cycling – you know when I first started cycling I never thought of going out for a two-hour ride, you know it would be 40 minutes, and hour maybe when I first started – that would be a lot for me and then I’d be really fatigued but then the more fit I became and the stronger I became on the bike the easier it was to deal with the fatigue.
“The fatigue with MS can be absolutely just ridiculous, like having chronic fatigue syndrome. You can wake up in the morning and still feel like you needed another eight to 10 hours’ sleep. It’s not a nice symptom, where my husband would look at me and he’d just say, ‘Would you just go lie down?’ – because I tend to just push through things. And this is where, you know when I say I had to start learning to listen to my body, that yeah, you have to think, ‘OK, if I get up and I’m not feeling great, it doesn’t matter if I miss one day of training,’ whereas before I would just push through it. But the cycling has really made me a lot stronger and able to deal with that fatigue a lot easier.”
I read while I was learning some things about you Carol that you favour the time trial. Going back to what you said earlier about having to be lifted out of the boat, how do you find being in a time trial position?
“That’s very interesting because at the end of a time trial – and it’s funny because I met Benny Kersten (when he) came away with us as one of the coaches at the World Cup in Spain in July – and he was quite surprised that once I finish the time trial I can’t get off the bike, I really have two or three people help me get off the bike and into a chair. You know usually I get the shakes or get tremors when I’ve finished something really intense like that and this time for the first time ever while I was in that race I had about 800 metres to go I guess and I started getting tremors in my right leg and it was up and over a hill over a little overpass and I’m thinking, ‘Oh my god, don’t start now – wait ‘til I finish!’
“So I think I’m of that mindset where I’d rather the time trial because I’d rather not worry about tactics, whereas I can just race the clock and really just do as best as I can and not have to worry about anybody else, just in case my body decides, OK there’s a problem here. And I get into a mindset where I guess I just forget about everything else but just keeping those legs turning and when I finish, it’s like, ‘Oh my god, OK, now I can’t get off.’”
So in that situation Carol, where with just under a k to go your leg starts to shake, I imagine there must be a strong psychological impact on being able to push through and continue. How do you do that? How do you keep going at that point?
“Look I think in July when it happened and as I said it’s the first time it’s ever happened during a race, I just kept thinking, OK, I’ve got one other leg. It was my right leg that was shaking so I kind of just concentrated on keeping the left one going around. I’m lucky in that I’m on a trike, so you can’t fall over. We’ve got some riders – paracyclists like Jayme Richardson from Sydney – she’s on two wheels and when she shakes, she can come off. Whereas at least with three wheels, I don’t have to worry about staying upright, number one, so that’s one thing that’s gone from that problem.
“And I guess, like I said, I was always as a kid pig-headed and stubborn and it’s always that mindset of push through this and finish. And the fact that I knew the finish line was there and it wasn’t that far to go… had it happened on the way out, yeah I’m not quite sure what I would have done. I certainly wouldn’t have stopped, I would have kept going and I probably would have paid for it in the long run at the end of the day and that’s where I say, you know, training-wise I make sure that I listen to my body when I need to. Otherwise I can’t go out and do what I do every day and if I’ve done a set that’s really, really tough, like time trial efforts, if I’m feeling crap, and I’ve say got three ten-minute time trial efforts, then trying to push through those isn’t going to do any good, I’d be better off to give it a day and then, you know, make sure I’m feeling at least 90% before I’m going to go and push and stuff like that.”
You mentioned earlier that back in your early days you had a relapse and wound up in hospital. When you say ‘relapse’, you mention that your symptoms had all but disappeared initially after your diagnosis. Can you talk me through a little how MS does affect you? In terms of a relapse, what sorts of symptoms did you see, and I guess day to day, do you have peaks and valleys in terms of what symptoms are manifesting?
“Look – and everybody is different – for me, a lot of my symptoms are hidden. I live daily with neural pain, which is in my feet. So the feeling in my feet isn’t great and my feet always feel like they’re on fire. It’s like pins and needles but a hot pins and needles and the more fatigued I get the worse it gets so even riding at the end of a really long ride, a two or three-hour ride, sometimes my feet are so sore it’s excruciating. I did Amy’s Ride last year and I actually had to stop and get my shoes off because the pain was so just excruciating and I still had over 20ks to go but once I tried to cool down a bit – because the heat affects me but day to day it can vary, and when you say relapse I’m – touch wood – between 2008 that last relapse (and now), I have not been in hospital and I think it’s because I’ve got myself fitter and fitter.
“But a relapse for me can be anything from bladder and bowel stop working to legs stop working to pins and needles get so bad that they spread – I’ve had times where, I think it was probably around 2006, where I had a hard time using my arms – I couldn’t lift my arms up over my head; my hands, trying to hold on to knives and forks and cut food, but my legs went as well so it’s about resting, getting some drugs into you which they use – it’s a horrible methylprednisolone – which stops the inflammation, and then I end up usually in rehab if I’ve had a bad relapse, learning how to walk again, learning how to get the hands stronger, get the legs stronger, so like I said, most of my symptoms are hidden, in the neural pain, and the pins and needles, the fatigue, and it’s funny because when I was working full time we’d put in really long hours and I’d be like, look I’ve got to go home, because if I don’t go now, I’m not going to be able to get off the tram, because you get so fatigued that you can’t get up and walk so they’d look at me like, ‘Yeah, but we’re all tired’, and because the symptoms are hidden, people don’t understand.”
Carol, can I ask, if we move on to this ride that you’re going to be doing for MS to Wollongong on the second of November, clearly being a high performance athlete you’re very aware of your body and very aware of how to prepare for such an event, and clearly because of the symptoms that we’ve just been discussing and having MS you need to be very careful about those preparations, what can you tell me about how somebody who might be riding 90km for the first time should prepare and find that balance between pushing themselves and knowing when to have a day off?
“I think it’s important to build up into it and saying that, I’m pretty bad because I haven’t had a trike since September 5th so I haven’t actually been out on the road, but I’ve been sitting on a wind trainer and a watt bike and building up my distances because I’ve had a little bit of time off. But yeah, it’s really important to build up your distances. I don’t think you should really just jump on a bike and go, ‘I’m going to ride 90 kilometres today’.
“You know, make sure that you’ve done at least 75% of that in one ride, that’s what I would hope that I’d be looking at. In saying that, you know when I get my trike back I’m going to have to start getting out there myself and start slowly building that up, so that on the day, OK, it may be a bit of a challenge, but you have to really take it in strides. Don’t start out really fast and think I’m going to get this done in three hours – it should be an enjoyable ride. Stop at the rest breaks, stop and have some food and some fruit – and I think they’ve got a muffin stop at one point on the 90k. So stop, enjoy it, enjoy the day, enjoy that fact that you’re out doing something for a good cause. It’s not a race. It’s about getting out there and just taking part.”
When it comes to taking part, and this obviously being a major fundraising event for MS NSW and ACT, what do you think are some key messages that you would use to encourage people to fundraise and to make a contribution to not only themselves in terms of challenging themselves to a 90km ride, but how can they support MS and I guess why should they support the MS Society through this event?
“I think it’s important to realise that MS – well they say’s there’s 23,000 people in Australia with MS. I disagree with that. Those are the people registered with MS Australia. It’s a non-reportable disease and there’s a thousand cases a year diagnosed so I think that number is way up there. It’s the fastest-growing neurological disease, so it’s really important that we raise much-needed funds to help people with MS. MS is so unpredictable and it attacks – the average age of onset is only 30 years of age, so it’s young adults – and I say ‘young adult’ between 20 and 50 – that are diagnosed, and three times the number of women than men, so it’s a disease that attacks right at those family-building years, those career-building years. And a lot of those people can stay in the workforce, so MS Australia do great things support-wise for people living with MS and helps them learn about how to live with MS, how to deal with the symptoms. It helps the kids of families deal with – a lot children end up being carers so it helps them deal with that fact – so it’s really important that we all get out there and try to raise some funds.
“I think they ask everybody to raise about $250. It’ not a huge ask, I mean if you ask 25 friends to give $10 each, I mean everybody has 25 friends and that’s it, there’s your $250. So if everybody did that, we’re aiming to raise $3.8 million, so that will help go a long way to education programs, to helping with services provided to people with MS by MS Australia, the fact that we’ve got occupational therapists and physios and there’s a library that people can learn from, and the peer support groups and there are so many services that MS Australia provides for people with MS that it all costs and other than a bit of money that MS Australia gets from the government, which isn’t a heck of a lot, the rest of it all comes from fundraising.”
Well look, I for one am looking forward to hitting 25 of my friends up for $10. Carol, I hear that people who are participating in the ride can join your team. Is that true?
“They can but I’m the only one on it so far!”
Oh well, we’d better razz some people up. Now do they need to be riding a trike to join your team?
“Oh no, no-no-no, two wheels is good. I think there’s only two of us in Australia riding trikes and the other girl is in Adelaide so two wheels is fine, recumbents are fine, hand cycles are fine.”
OK, so if you can get there on a wheel, you can get there?
So I guess my last question is Carol, because you know I’m starting to prepare but at least I have a bike, when are you getting your trike back?
“Hopefully this Friday. I actually have to call them today and say please tell me it’ll be ready Friday.”
Look, all the very best in preparing for the ride and thank you for having a chat to RIDE.
– Interview by Claudia Carr