Welcome to the Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts. As well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates.
Jeremy Henderson:
Hello and welcome to The Raw Nerve Podcast. My name is Jeremy Henderson. I’m the head of advocacy at MS Australia. Today, I’m filling in for our regular hosts, Rohan Greenland and Phil O’Neal. Today, we’ve got a wonderful guest, Cate Green, from Bendigo in Victoria. Cate was diagnosed with MS in 2018. Today, Cate’s coming to us from London, ahead of her attempt to ride the Camino 773 kilometre trail that she’s attempting by bike in seven days time. Welcome, Cate.
Cate Green:
Hi. How are you?
Jeremy Henderson:
You were first diagnosed in 2018, I wonder if you can tell me a little bit about that.
Cate Green:
Yeah. Well, August 2018, I was at a spa, actually, in Daylesford, in Victoria and had a really weird back spasm, incredibly painful, and I got out of the spa and my left side went numb, and I went to the doctors the next day. It came back fairly quickly, went to the doctors the next day, and to cut a very long story short, by the September, I’d been diagnosed with MS. I was walking with a limp. And now in hindsight, there was probably about nine months of symptoms that were unexplainable. And then by the September, I was diagnosed with MS, and by the December, I’d started treatment.
Jeremy Henderson:
Before that diagnosis, had you known much about MS? Had you known anyone else in your life with MS?
Cate Green:
Well, bizarrely, I worked as a personal carer for Australian Home Care Services, when I put myself through uni as an adult, so I actually nursed a lot of MS clients, which was good and bad in my diagnosis because I went straight to end of the progression of it, because I nursed people at the very severe end of MS, so when I got diagnosed, that was where I went to. And so it was quite shocking for me. I’d read books for MS Readathons, as a kid. But as in actual people, my GP had been diagnosed with it when I was in my 30s. So I had a fair introduction to what it could be like. But learning to live with it was completely different.
Jeremy Henderson:
Tell me a little bit about that, because one of your first relapses was incredibly severe, in fact.
Cate Green:
The first three months, I think, of MS diagnosis really messes with your head because every time you get a twinge or a muscle spasm, you’re like, oh my God, is this going to be it? Whereas, September 2019, I had a very severe relapse, which ended me in hospital for three weeks. So I was paralyzed from my neck down, so I lost both arms, both legs, bowel and bladder, and that put life in perspective for me. So in one sense, now, I tend to be a little bit blase with my symptoms because I’ve had the severe end and I’m like, oh, I just can’t feel my feet. It’s okay. Whereas, actually, not being able to move. So yeah, well, it was a week.
Jeremy Henderson:
Talk to me a little bit about that. I mean, how did that happen? Where were you at the time? How frightening was it? What did you do?
Cate Green:
Again, it was in the September and I woke up on a Monday morning and my left side was numb, which was the original thing that had happened 12 months prior. So I just went to my GP and said, can you give me the drug? Stop this. I need to get on with my life. And he was like, oh, it’s not quite that simple. And over a period of 48 hours, I deteriorated quite rapidly. So by the Tuesday night, he said to me, I want to admit you in hospital tomorrow morning, but keep the phone by your bed just in case anything goes awry overnight. And sure enough, 2:30 in the morning, I woke up and I couldn’t feel my arms or my leg. I had use of my right arm, at that stage. So I was able to ring Triple Zero. I live on my own.
So an ambulance came, neighbor came in, and I got taken off to a hospital in an ambulance. By the time, I got to the hospital, I had lost both arms and both legs, and then by the time I got to a ward, I’d lost bowel and bladder as well. So I spent, basically, two weeks in nappies, in wheelchairs, being fed. And there’s no neurologist in our country hospital where I live. So there was a bit of debate of whether I get sent to Melbourne or not. The hospital rehab team were awesome. I’d already signed up to do a bike ride in Vietnam. So when I went to rehab, they said, what’s your goal? And I was like, right from the north of Vietnam to the south. And as I wasn’t really moving, they thought that was a little bit too big a goal. So they said, could we do something smaller?
So I said, I’ve got an exhibition in 10 days, can I walk to that? And he was like, we’d still like something smaller. So they suggested I learn to stand. So they said that will take four or five days to learn to stand, which it did. But I did get to ride from the north of Vietnam to the south six months later. So I had four months of outpatient rehab and got all of my function basically back. So six months later, I got on a plane and went to Vietnam and met a team of cyclists.
Jeremy Henderson:
But before we talk about that experience in Vietnam, what is it that drives you? We so often talk to ordinary Australians living with MS and doing and achieving extraordinary things, and certainly, put you, Cate, into that category, but what drives you to want to push your body and to achieve such a physical feat that would be challenging for all people when you’re dealing with MS? Is that something that’s characteristic of you, even before the MS, that sort of determination? And I chatted to you earlier last week and I can’t remember, you had a beautiful phrase where you said, I think it was that idea of the difference between being really, really aspirational, ambitious and not bordering on reckless or even crazy. You said it far more eloquently than that.
Cate Green:
There’s a fine line between courage and insanity, really. I suppose I’ve always been driven, not so much physically, but I think once you have lost everything, your perspective really changes of what is important in life. And so I made the conscious choice to live life to the full. And I think, initially, for Spain, not for Spain, for Vietnam, a lot of it was driven by fear, that you become really… I became very obsessed with exercise, mainly because I didn’t want to lose it again. And I probably pushed myself too much in that… Particularly from a mental health perspective, I fell in a bit of a hole afterwards because it was more from a motivation of fear and terror rather than a joy of living.
And really, I took up ballroom dancing when I got back from Vietnam, and it really helped shift the switch for me from being terrified of becoming paralyzed to loving life and living life to the full. And I think it’s a far healthier way to deal with living with MS, is doing something you love rather than being terrified of what might happen if you don’t do it.
Jeremy Henderson:
I imagine it gives you great agency to focus, as you’ve just said, focus on what you can do rather than a focus on limitations or focus on what you can no longer do or can’t do. It’s about giving yourself that agency.
Cate Green:
Yeah. I mean, I’ve always been a highly creative, I work in a creative industry, and so for me, the challenge of finding creative ways to do things that I shouldn’t be able to do or that I haven’t been able to do, has… I won’t say fun, but it’s been a healthy way for me to deal with the limitations of living with MS. So for example, I went photographing here in London yesterday, and I was really tired. The fatigue started to set in and my eyesight started to go, get blurred vision, but there was too many photos to take. So I relied on the green grid screen on my camera to tell me that the photo was in focus rather than my actual eyesight. So for me, that is the challenge of finding ways to do things that I technically shouldn’t be able to do, but to go, well, there’s another way around it. And I think that problem-solving creativity way of dealing with it is, for me, from a mental health perspective, has been far more helpful.
Jeremy Henderson:
So you mentioned, a second ago, your business, I wonder if you can tell me about what it is you do professionally and how your MS diagnosis impacted that and how you’ve managed to work around that in terms of your professional interests and business interests.
Cate Green:
I have run a sewing school for many years, both in Melbourne and where I live now in Central Victoria. So I run a business called The Institute of Imperfection. So teaching women how to sew and pattern make. It’s probably one of my biggest challenges for living with MS. There’s very little support for business owners with disability, let alone MS. So trying to navigate, I haven’t done it well. I’ve done it full on or not at all. So it’s been tough. I’ve been lucky in the sense that I do run my own business, and so therefore, in terms of days, when I’m not feeling well, I can reschedule classes and that sort of thing. So there’s been a distinct advantage to running my own business. There’s been huge disadvantages, but I love what I do and my clients have been amazingly supportive. They love me for what I do, so they will help make my life as easy as possible.
For instance, when I was in hospital, they would come into me and they brought me clothes and food and they would drive me to work and back when I actually got out of hospital to save my fatigue. I’ve learned to ask for help a lot more as a business owner. I think, as a business owner with MS, you tend to want to hide it a bit, whereas I’ve learned to be very upfront and go, I can’t cognitively do this today. My eyesight’s weird. My legs are weird. You come to me, I’ll come rather than me go to them.
Jeremy Henderson:
What’s the reception been like to that honesty? How have people responded?
Cate Green:
I have never really had a negative response to it. I think if you are honest with people and make the effort, they will respond in kind. There’s a fine line between, I can’t do it to versus I can’t do it today. And I think that attitude has really helped me to say to clients, I can’t do this today because of whatever’s going on in my world, that I’ll try again tomorrow or I’ll make up for it at a later date. Well, I’ve put a pause button, put it that way, on my business at the moment, which is part of what my Spain trip is about, to try and find a way to navigate running your own business with MS.
I haven’t reached a model yet that works for me. I can run my business really well for three days a week, but then that can put me in bed for four days afterwards, which I then went, that’s not how I want to live my life. I need that work-life balance. I want to enjoy travel and all the other things that I enjoy in life. So learning to say no to clients has probably been my hardest thing and getting that looking after me, and again, my clients have been very good with that, when I’ve actually gone, I need to close this for three months while I figure out a model. I’ve got a business advisor, I’ve got a great medical team that are working with me to try and find the best model that will allow me to be a successful business owner, as well as an MS person, although that’s not my entire identity, but living with MS, yeah.
Jeremy Henderson:
So let’s get back to your upcoming bike ride, and it’s so much more than a bike ride. Talk to me about it and the challenge that’s ahead of you and why the El Camino trail. And I wonder if you can just tell our listeners a little bit about that trail and what that adventure’s going to look like.
Cate Green:
Well, I rode Vietnam in 2020 and that was 400 kilometres and it was with a group of people. And so I came back and had fallen in love with cycling, but I really wanted an incredibly independent human being. And I really wanted to prove to myself that I could live well with MS on my own. And so I probably, due to my personality, took that to the extreme and went, well, I’ll try the El Camino, which is double that kilometre thing, and I want to do it on my own. I chose the Camino because it’s not… Although it’s a solitary ride, I’m doing it. There are lots of people around. So it’s not like I’m going off into the bush and climbing mountains on my own. There’s support available, and it’s a beautiful part of the country. It’s got a deep ancient history that I’m very interested in from a spiritual quest type thing.
So the fact that I could do it on my own but still be supported, which is probably a good metaphor for how to live with MS, is that you can live independently. Well, I prefer to use the word interdependence, is, I need a lot of help around me to live my best life, which I think all humans do. It’s just more accentuated when you live with MS. So I start the ride on the border of France and Spain, and I ride over the Pyrenees. So the first day is the scariest. I had to negotiate with my exercise physiologist to be allowed to do that day. And then once I get over the Pyrenees, I ride up to the Atlantic Ocean on the other side.
So all of my accommodation is pre-booked, so I know exactly how many kilometres I have to ride each day. Most people that ride or walk the Camino do it spontaneously. I would love to do it like that, but it’s a far too risky adventure to do it that way with MS, just because of the unpredictability of the illness. So having planned it, I’ve spent seven months with my exercise physiologist and physio training for this, so it’s not something I just woke up one day and went, oh, I’m going to ride the Camino. So it’s been well-planned, well-supported.
My medical people have written me this really cute book that’s got all my exercises that I have to do in the morning and night and nutrition and fluid and contingency plans. So it’s well-planned. But there’s still that level of spontaneity and independence that I get to do it on my own, which is really the motivation to do it, is, I like my own company and I like to be able to do something like this. It’s almost an invisible team around me to help me look good.
Jeremy Henderson:
Are you expecting the weather to be a challenge? How hot is it going to be?
Cate Green:
Well, initially, I chose September to do it. Well, two reasons I chose September is I like to do something on the anniversary of my relapse. So just to go screw MS, I’m going to do something good and fun every September rather than be terrified that I’m going to end up in hospital. So that was one of the reasons for September. The other was that it’s going into autumn, and so I was like, the temperature will be 20 to 25, which would be ideal riding conditions for me. However, there’s a heat wave at the moment in Spain, and so their temperatures are getting a high thirties. So again, we’ve got contingency things in place. So I ride with a camel pack, I’ve got a cooling vest, I’ve got cooling tubes, I’ve got cooling clothing to try to keep me as cool as possible. But my logic is I rode Vietnam in 39 degree heat in 86% humidity and survived. So this should be doable.
Jeremy Henderson:
Now, you talk about the team that you have around you, and that’s both health professionals and I imagine also family members and friends. And obviously, they’re supportive, but do they worry about you? Do you’ve got family and friends that are concerned about you or they know you’re just this unstoppable force?
Cate Green:
A bit of both. I mean, I’ve had a lot of trouble understanding people’s concern. I think leading up to this trip has been a huge eyeopener to me about how other people perceive living with MS, because I live with it every day, I get a bit blase. I can ride 15Ks without my feet going numb, and then I’ve learned to ride. Whereas if I tell that to my friends and family, they tend to panic about that. So that level of understanding communication between… and that angst between my family, particularly my family and friends, that feel very concerned and worried that I’m on the other side of the world and I’m not going to be able to get up one day, whereas I tend to be a little bit more blase and go, oh, they come back eventually, I just have to wait.
So I think that’s part of the reason of wanting to document through a blog and that sort of thing. My trip in Spain is to let people know what it’s actually like to live on a day-to-day basis so that people around me don’t panic. You don’t want to be treated like an invalid, but you also need some special consideration. That fine line between, I need some help but I don’t want to be made to feel incapable. And it’s a very difficult dance to do, I think. And it requires a lot of trust and communication. I mean, in terms of personal development, MS is the best way to grow, from a personal development point of view. You want to maintain your relationships with living with a… I tend not to want to talk about it too much because I don’t want to be a bother, but then I also need people to understand why I can’t do stuff. So it’s a delicate process to achieve. So my friends and family know that I will do it anyway.
So I’ve got a singlet with a quote on it that I’m wearing when I ride, that says, when people say it can’t be done, do it twice and take photos. And so I think friends and family, no, and my medical team, when I went to my physio and said, this is what I want to do, they knew that it wasn’t an option really to say no. They were just like, how can we help you do this as safely as possible? If I had any advice to medical people, is that attitude of, how can we do this as safely as possible rather than a mere flat? No, that’s not viable. I mean, I’ve had to make compromises. It’s not that I get my own way all the time. It’s more that relational negotiation of, this is the way my MS plays out and how can we achieve your goals with those limitations.
Jeremy Henderson:
So Cate, you’ve obviously got your own personal motivations for this trip, but I think you mentioned your blog and documenting your journey and people can potentially follow your progress. It’s also very important for you to make sure to communicate to others living with MS or disability to be able to fulfill their potential and not necessarily focus on what they’re limited in doing, but think about what they can do. It’s a message, I guess, of hope and a very inspirational one, and you’re really wanting to make others see that that’s important to you?
Cate Green:
It is. I think one of the things that being diagnosed and having such a dramatic relapse, as I said earlier, is that you get presented with a choice, really, of taking life by the horns and going, I can live a really good life, versus, this is the end of me and woe is me. And so to motivate other people, that wasn’t my initial reaction to my diagnosis, when they told me, initially, because I had seen what MS could do, I was very much despondent, and it was really only that I saw this ride in Vietnam that I got my shit together, and went, I’ll give that a go, and have found that focusing on something positive has been far better for me managing my symptoms rather than, I can’t do anything. So if I can help others do that rather than be really despondent, that there’s things that we can’t do, or we are limited in, we have to find creative ways of doing it.
So I’m hoping that this trip can help people see that, that is possible. And it’s not all rosy. It’s not that I don’t have symptomology, that positive mental attitude doesn’t take MS away. It would be nice if it did. There’s that sort of narrative, I suppose, with particularly, complimentary medicine around MS management. Again, finding that balance between, I have an infusion every six weeks and I have a traditional medical team that helped me do what I do, but also, I refuse to feel guilty. I do lifestyle management as much as possible, but the randomness of MS is I can wake up with my legs not working any given day, and I refuse to feel guilty for that. I used to go, what have I done wrong? What aren’t I doing? Why is this happening to me? All of those questions. Whereas now I’m like, well, it’s just the randomness of MS, how do I deal with it?
Jeremy Henderson:
I think, Cate, as well, that it’s… I imagine that not everyone is going to be able to ride the Camino trail, or even want to, but I imagine it’s about taking agency and taking control of the things you can have control in, which is why we see so many people with MS really taking an interest in their health and their fitness and in diet and eating better because that’s something they can control, and that’s something that we do know has a positive impact. And so I imagine, again, your message would be to people to, it doesn’t have to be this incredible challenge of going to the other side of the world and taking on this incredible bike ride, but there are things that you can do and take control, and it doesn’t always have to be something this big, does it?
Cate Green:
Well, no. I think the danger of doing something like this big is that people go, I can never do that, and so therefore, not do anything. Whereas I’m like, well, that’s my personality. Let’s do something. And I mean, when I started from my relapse, I didn’t start by riding 100 kilometres a day. I start with three minutes in a exercise bike in a rehab unit. And so it was those incremental steps to go, you can do a little bit more and then you get a bit addicted. Well, I did. I got a bit addicted to it and went, oh, well, maybe I could ride 10K and now I can ride 20. So it doesn’t matter what it is, it’s just, do a bit better than the day before.
I mean, I’m healthier, fitter, stronger mentally, a whole lot nicer person than I was pre MS. So I mean, I can honestly say, MS is the best thing that’s ever happened to me, in the sense that I have become the best version of me that I possibly wouldn’t have become had I not had the diagnosis. And again, that’s a mental choice I’ve made to make of my MS rather than let it destroy me. I can’t necessarily control the physical symptoms but I can do my best.
Jeremy Henderson:
It’s incredibly inspiring. How many days till you do your head off on this grand adventure?
Cate Green:
I actually pick up my bike on the 7th of September, so I’ve got a week, Friday next week, or 10 days, and I ride for 23 days. And then I spend four days in Madrid recovering before I come home.
Jeremy Henderson:
And how can people find out more about how you’re traveling and how it’s all going?
Cate Green:
I have a blog on Facebook. I’m known as the Black Cockatoo, and so you can look up on Facebook, the Black Cockatoo, or under my name, Cate Green, and I’m Cate with a C, and you can follow me online.
Jeremy Henderson:
Best of luck with the ride. I imagine that your family and friends have got you on a strict schedule of sending texts or email updates or regular communication from the front lines.
Cate Green:
Yes, yes. I was only allowed to come if I kept in contact on a regular basis so that they don’t panic.
Jeremy Henderson:
I hope it goes really, really well, that you enjoy it. And we look forward to talking to you again when you’re back in Australia.
Cate Green:
Thank you very much, Jeremy. It’s been lovely. Thanks for having me on.
Jeremy Henderson:
Thank you for joining us on The Raw Nerve. Thank you.
Voiceover:
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