Voiceover:

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, welcome back to The Raw Nerve. I’m your host, Jeremy Henderson. It’s my great pleasure to welcome back today, one of the very first guests on The Raw Nerve. We chatted with Jen Willis back in January 2023, ahead of her attempt to become the first Australian living with MS to reach the top of Mount Everest. Jen’s back today to talk about her most recent trip to Nepal, fresh from her latest challenge and one that I imagine has been even more special because Jen took part on that journey in the company of others living with MS. Hi Jen. Welcome. Second time back in the hot seat at The Raw Nerve. I think we can now call you a friend of the show. Thank you so much for joining us today and welcome back to Australia. 

Jen Willis: 

Thank you. 

Jeremy Henderson: 

For some of our listeners, you don’t need any introduction, but I wonder if we can start there perhaps. Who is Jen Willis? 

Jen Willis: 

Who is Jen Willis? I am a mother. I am a woman. I am 52. I live with MS and I have a real passion for mountains and climbing mountains. 

Jeremy Henderson: 

Talk to me about your most recent expedition and tell me a little bit about the genesis for this trip or that trip rather. 

Jen Willis: 

Yeah, so my most recent expedition was a trek this time, so not climbing up anything too steep, but a trek up to Everest Base Camp. Probably one of the most inspiring trips I’ve done because I was joined on this one by six other people that also live with MS. 

Jeremy Henderson: 

How challenging is it to organise a trip of that type when you’re taking people that… I imagine your fellow travellers had some experience, but what were some of those challenges and concerns for you bringing that group up to Base Camp? 

Jen Willis: 

Yeah, a few different things. I think one of them is… So we came together from… None of us knew each other prior to the trip, and so people came from… We had one member from the US, one from the UK, the other four, plus me, from Australia and from different states. So none of us had met in person before and I was the only person that had travelled in Nepal and we had some of our members that hadn’t actually travelled in developing countries in that same way either. So I think one of the challenges with any group is making sure as best as possible, people feel informed and understand the trip that it is they’re signing up for, and so that’s the same for anyone. 

One of the things for those of us that are living with MS as well is there’s quite a few of us on the trip, a few things that we wanted more information about, so our diets that a lot of us monitor very carefully. Navigating bathroom situations when we’re over there, how to dress and manage our different temperature regulation challenges. And so working out how everyone would come together, what all of our different unique challenges were, how we’d navigate them on the trip, but more than anything, how we would communicate those to the guides that we had on the trip and the places we were staying when English isn’t our first language. It’s our first language. It’s not their first language, I guess, not their main language of communication typically so. 

Jeremy Henderson: 

Talk to me about that walk to the Base Camp. How challenging is that? What’s the distance? What are those conditions like? 

Jen Willis: 

Oh, it’s pretty challenging, and so it’s about 130 kilometres a little bit more round trip, so it’s not a huge distance when you consider that. We did that over the course of a couple of weeks, but there are some really, really steep, significant hills. There’s a lot of very uneven ground and there’s the constant increase in altitude. So by the time you reach Base Camp, you’re at nearly 5,400 metres, and so your body is having to constantly acclimatise with each step that you’re making higher. So it is definitely, definitely one of the harder treks that you can do, particularly for those of us that are coming from sea level. 

Jeremy Henderson: 

Were you actually hit with any unexpected challenges on the trip that slowed you down or impacted you? 

Jen Willis: 

Almost every one of us had to navigate some sort of illness and that was very… So the everyday challenges of MS that each of us were navigating, for those of us that had MS… For the people along there didn’t have MS, they’re still every day the different idiosyncrasies of our bodies and our own internal motivators and things like that. But then each of us seem to get either some sort of stomach upset, some sort of upper respiratory chesty something and a couple of people the impacts of the altitude. So that definitely threw in those sort of other health factors that everyone was having to navigate at different points. 

Jeremy Henderson: 

I’m just curious logistically, if you’re on a group and undertaking that walk, what happens if somebody puts up their hand and says, “No, I’ve had enough. I’d like to maybe go back the other direction”? Is that even a possibility? 

Jen Willis: 

Yeah, look, it really is. It’s definitely a possibility, and I think quite a few people had moments on this walk where they’ve voiced that thought, went through their head and they went, “I think I’ve come far enough on this journey now.” But no one really brought that into a full conversation to question turning around, and I think that was partly to do with from the moment we met, there was a sense of support and camaraderie and care for each other that almost short of anything, massive natural disaster or someone getting critically ill was going to see us all get there together. Because it really was a… We’re all in this together and we’re all going to make this journey together. 

Jeremy Henderson: 

Now I’ve seen some incredible photos from your expedition and you see these beautiful vistas and these incredible blue skies that obviously don’t do it justice in terms of the actual temperature, what kind of temperatures are you dealing with on that walk? 

Jen Willis: 

So look, during the day, you’re actually at times down to shorts and a T-shirt and it can feel quite warm. So it might be sort of 16, 17 degrees, but that can feel really quite hot when you’re trekking and an altitude in the sun. Up. Heading into sort of Gorakshep, which is the final town before Base Camp and waking up the next morning up there, you’re into a thick down jacket and you’re down below zero then. I’ll say too now, when you talk about these beautiful blue vistas, we got a glimpse of Everest on the way up to Base Camp and then we didn’t see Everest again until after we’d reached Base Camp. You can’t see Everest from Base Camp, and we didn’t see it till all the clouds opened the following morning, and most of our trek in was actually overcast or really cloudy and drizzly. 

Jeremy Henderson: 

What did you learn about yourself on this trip that was perhaps new and perhaps unexpected? 

Jen Willis: 

I learned that rewards come so much from walking alongside someone. Even though it’s a journey I’d done before, being a part of someone else’s achievement and particularly those number of people and that shared achievement, as we got closer to Base Camp, I got more and more emotional. And by the time we were in Gorakshep, I was a bit of a teary mess because everyone had made it to that final town and the next morning we would wake up and it’s really just a short day walk to Base Camp and back. And I felt just quite overwhelmed with emotion knowing that I was a part of someone else’s journey, achieving their dream. And I hadn’t felt nearly as emotional on my own personal journeys coming in, I guess because it was just me heading to a destination. 

And this sense of walking alongside others to get to their destination, it was really, really powerful for me. I’ve worked in the outdoors a lot, so I’ve walked alongside a lot of other young people. I think it was more than that actually. It was about understanding and having my own lived experiences of the challenges of MS and knowing at different times the looks on people’s faces. We all knew what each other was going through at different moments on different days, and so it was not just seeing the people on this journey, but knowing how much effort and tenacity they put in, how deep they dug to reach that place. 

Jeremy Henderson: 

Now have you created some fellow adrenaline junkies? Do you think they’ll be seeking out another mountaineering adventure anytime soon, or do you think some of them have got it out of their system? 

Jen Willis: 

I think a couple of them might have it out of their system or they thought by the time they were back in Kathmandu and dealing with whatever. You come back down; you don’t feel necessarily energised after you’ve been up an altitude. You feel tired for a little while until you re-acclimatise back into everyday life. A couple might think that they’re done with something like that, but that might shift. I wouldn’t be surprised if they later say, “Oh, maybe I’ll just do something.” One of the women sent me a message the other day saying that it had definitely lit the sort of adventure flame in her and she wasn’t sure what her next one would be. 

But it was, yep, she was ready to start thinking about the next adventure and I think one of the couples that came along, he has MS, Chris. And his wife doesn’t. She came along to support us all on the journey. She is keen to come back on another trip and just support and help anyone else with MS on that journey, even if Chris didn’t come again, but they’re also planning a family trip back to Nepal. So yeah, it certainly has ignited… I guess, whether it’s adventure in the bigger sense of the word, in the outdoors, in what we do in the environment we go into or more of a sense of adventure, I think that ignited in everyone. 

Jeremy Henderson: 

Now, I’m not sure whether this was by design, I imagine it was, but you organised your expedition around World MS Day. Can you tell me where you were on World MS Day and how you spent the day and what that was like and how special that was? 

Jen Willis: 

So we woke up, and I’m not going to remember the names of the towns. Maybe it’s because I have MS. my memory’s terrible. But we woke up and we did wish everyone, once we all realised that, “Hey, it’s World MS Day today.” We wished everyone a happy World MS Day. And then we had brought some T-shirts with us that I had had made up and it was about living our lives, best lives with MS. And so it wasn’t overt. I think because not everyone in the group had MS, our guides and people like that too, we were mindful that it was a special day for us to acknowledge where we were at, and so there was more sort of quiet hugs and words of encouragement and a group photo on that day with us all as we were trekking up. So we hadn’t reached Base Camp yet. We were a couple of days out from Base Camp then. 

Jeremy Henderson: 

Now you had a videographer along for the ride as well. I imagine you’ve captured some incredible footage. What plans have you got for actually documenting the trip? 

Jen Willis: 

Yeah, so Steve is his name and he was absolutely fantastic to have along the trip. And so the absolute least I thought having Steve along and capturing this journey created a beautiful photo journal for everyone to have moments of their story captured. We’ve taken interviews throughout the trip with people. And I’ll be taking some more interviews with some people after the trip as they’ve come back into home to see where that’s landed. We’ll weave into this documentary that we’re making more of my story of my journey to diagnosis and to then from that point bring to life a dream that I’d had since I was a child, to learn how to mountaineer and how that journey has taken me almost all the way to the summit of Everest and to inspire me to take others back up to Base Camp and allow them to experience some of the magic that I had. 

And probably if I do get the chance to go back to Everest will probably keep the documentary going through that next trip as well, the filming. And then our hope really with that is to, there’s a focus on Ability Film Festival and so we’d like to finish it and submit it to that. We’d also love to go to some of the other adventure film festivals and really I guess share a bit more of… I mean, when you’re capturing video on a trip like this, you get the images, you can go anywhere on Google and you can see the images of a trip like this. So ours isn’t bringing something unique in that way. What it’s bringing is it’s the interviews and the inner story and we look the same as everyone else when we were walking up there. One of our group members used the cane normally, but by the time we all had our trekking poles, no one would’ve been able to tell that we were a group of people with MS. 

And so those interviews and those inner stories and capturing the thoughts that go on in your mind through each step of the journey, the ones that want to stop you from moving forward and the ones that motivate you from moving forward, I think that will be a really special part of this journey because those thoughts relate to what we do in everyday life as well. I talk a lot, as you know, about metaphorical mountains, and they’re the ones that are, while the body is going, the mind is going through and climbing so many different mountains and sometimes it’s not at the same pace. Sometimes the body is moving faster and the mind is struggling to keep up and wanting to stop the body. Sometimes it’s the other way. The mind’s going, “I can do this, I can do this.” And the body is just going, “I don’t know if I’m going to let you right now.” So it’ll be a pretty special documentary once it’s brought together. So if Netflix is watching… Yeah. 

Jeremy Henderson: 

That’s a great segue. So you spoke then of metaphorical mountains, and I know I think you spoke about that when we last spoke to you on The Raw Nerve, but for you, you have a passion for mountaineering, but it’s also about overcoming those sort of metaphorical mountains if you like, overcoming obstacles and adversity and I guess just reaching your full potential and not being limited by MS. I wonder if you could just speak to that a little bit. 

Jen Willis: 

Yeah, I think it’s definitely… This notion of self-limiting beliefs is… And those beliefs that we start to form in that habituated way of thinking about ourselves and the narrative that we attach to ourselves as to who we are, can be incredibly powerful and can completely override our potential. And in my own case, I’ve now climbed to 8,000 metres and I was not an athletic child. I was intellectually more gifted and physically not at all. And I went through a lot of challenges in my growing up and in my teenage years and even when I started venturing into the outdoors, it was incredibly challenging for me and I cried on so many of my first experiences. And I guess one thing was that I realised though was that each time I overcame something by taking some little step up rather than simply sideways or even a step back, something within me grew in this sense of capacity. 

And so whether it’s who I was as a mother, who I was as a woman with MS doing physical activities, who I was professionally, every little moment that I extended myself a little bit further out of that comfort zone, my comfort zone increased and increased and I’ve got a pretty big comfort zone now. And that’s such a gift to live with because what I do come across more and more of these challenges in life… And we all do. My biggest one right now is simply I became an empty nester and I’m living in this house by myself. And that happened two days ago, three days ago. I’ve cried every day since. And nothing makes us immune to the human experience and the depth of emotion. 

What it does is allow us to see that emotion and the temporary nature of that and to sit with it and allow space for that and then to pick ourselves up and keep going and take that next step forward and that next step forward. And I think probably that’s been one of the biggest secrets to me in how to live really well is to never see any mountain, the physical, the metaphorical. I talk about the peaks and valleys of life. There’s something that is in my way, it’s something that I need to learn how to navigate and learn how to do it well. 

Jeremy Henderson: 

Jen, it’s important… I think one of the challenges with MS is so many of the symptoms and the impacts are invisible to many people and many people may not understand the difficulty somebody is dealing with. I wonder, again, if you’re comfortable to how is your MS sort of manifesting at this present time and what were some of those challenges for you on your latest trip to Nepal? 

Jen Willis: 

Yeah, and look, so fatigue lately has been… Fatigue and I have probably been hanging out together more than I’d like for about a year now. And in this latest trip… So on my Everest trip, I noticed a lot of my own personal symptoms more because I was pushing myself harder. On this trip, I didn’t notice them as much. One thing I noticed is when I get up into the mountains and I get away from everyday responsibilities and all I’m having to think about each day is getting up and moving through a much simpler day, having breakfast, walking from this place to this place, settling back in, just engaging in the environment and the culture and the people, it’s much easier days for me. One of the things on this trip I think was I kind of wanted to not have my MS come up at all because I wanted to be able to support these other people and MS doesn’t quite work like that. 

And so I did have days where I was feeling the impacts of it myself. And in its own way, that was kind of helpful because it reminded me a little bit of what other people were experiencing, which I wouldn’t have had, but it was really around just my bladder bothers me quite a bit. And just as the group’s ready to go and I’m trying to be there at the front and suddenly I have to stop and go to the bathroom. And I had a couple of days where I was feeling quite unwell with a stomach bug, but I just walked at the back of the group those days and so I didn’t try and show up as the fearless, stoic, lead from the front, this is how you do it. I showed up as a friend and a support and a guide to be there alongside everyone. 

Jeremy Henderson: 

Now just a quick diversion, I think I read online you were going to sign up for a half-marathon on your return back to Australia. I’m just curious to know whether you’ve ticked that off your bucket list. 

Jen Willis: 

Do you know what? No, I haven’t ticked it off and I’ve paid for it. I’ve signed up and I can’t do it because… And my motivator for that… So one of the things is if I’m motivated to do something, but I’m not quite sure if I can achieve it, I like to announce it quite publicly because it holds me to account to try my best to get there. And one of the motivators for me to do this marathon is that my cardiovascular fitness sits below what I think would be the norm for someone that wants to do and likes to do the sort of things I like to do. And I do want to go back and have another go at Everest. It’s a bit sponsor-dependent, so I have to work through that. I’ve got to climb that little mountain to the sponsorship somewhere first. 

But my cardiovascular fitness, I did well getting to the South Pole last year, it wasn’t a problem, but I know it could have been easier if I was fitter. So coming back from this last trip up to Base Camp, I thought I’ll either come back going, “I really want to climb again.” Or, “That’s okay. I realised I don’t need to.” And I came back really desperately going, “I want to climb again. I want to get all the way to that summit.” And how will I improve my cardiovascular fitness? I will just sign up for a marathon straight away and I’ll start running. 

So I did. I just signed up and I started running. And about three days in, or my third run, I realised why you actually start with strength training and building up. And so my knees aren’t quite as strong as they were after a couple of big peaks in the last couple of years. And so I injured my knees. So now I’m redirecting, I’m going to go back to the gym and start with some strength work and then work on the cardio. So yeah, I won’t do that marathon, but I might try and book one a little bit further down the track towards the end of the year, a half. 

Jeremy Henderson: 

I was going to say I feel bad for asking that question, but I think that’s a really a good message for the people listening because they see somebody who’s so successful and you’ve achieved these amazing things, but there are obstacles and it’s about a journey and it’s about just getting there step-by-step and overcoming those obstacles. It’s not always a straight line, is it? 

Jen Willis: 

It’s not. It’s not. And one of the things that I’ve realised too is that there’s different trains of thought around reaching goals or bringing big dreams to life. And one of them is don’t tell anyone. Just quietly fly beneath the radar. And then if you get there, talk about it and people will be in awe. They’ll be so wowed. But if you don’t get there, you don’t have to live with that sort of discussion around why didn’t you get there? This talk of failure, for want of a better word. And I don’t think in that way, I think put yourself out there, have a go, learn from that journey. If you don’t get there, be open to sharing that and reflect it online. It may mean that you get there next time and it may mean you never get there, but what you’ve learned and what you’ve been brave enough to share, to set a goal publicly, to go for it, maybe not achieve it. But if that motivates somebody else and they set their goal, they might achieve their goal. 

And so I guess, yeah, the inspiration doesn’t always come in success. One thing I’ve learned is I might go back and I might summit Everest. Not many people, no one else in Australia with MS has reached 8,000 metres and only two other people in the world. So that’s really significant. But that was me training for one thing. There are so many other things that I couldn’t go out and achieve right now if I didn’t train. And so, none of us really succeed from having some special unique superpower. We succeed because we are brave enough to try and try again and try again until we get to where we’re going and we’re strong enough to accept the wins even when they don’t look like the final destination. 

Jeremy Henderson: 

I wanted to ask you about your passion to raise awareness about MS, and obviously that’s important because it helps to raise funds for research. It ensures that it’s on the radar of our politicians that make sure that people with MS are being supported in terms of provision of services and again, in terms of investing money into much needed research. But there’s also another really important reason for increasing the awareness of MS in the Australian community. So MS Australia released a study on World MS Day, findings that showed that the time to diagnosis for people in Australia living with MS on average is still just under four years, which is such a long period of time when you’re looking at a condition like MS. And so, there’s obviously a really important education and awareness raising piece that people understand what MS is, that they understand what the symptoms are and know what to look for, so that when people do have those signs that possibly they should be discussing with the doctor that they do take that action. Why is that awareness raising piece so important to you, Jen? 

Jen Willis: 

Look, a few reasons. I think. One is that, so from the first mention that from a neurologist, it looked like I may have MS to my actual definitive… An actual diagnosis, that was 10 years. And when I was told in 2008 and I just had my third child and I had some extreme dizziness and some double vision, at that point when I was told I might have MS, I made this decision that if one day I get diagnosed, then I’m going to learn how to mountaineer and I’m going to fundraise for MS research. And I waited 10 years and then I went and did those things once I’d been diagnosed. There was a point early on in the journey where they did offer based on what they talked about as clinically isolated symptom or syndrome that I could start medication. And I said, “No, I don’t want to. I don’t want to do anything about this unless I’m diagnosed.” 

And in hindsight, that decision potentially led to me having 30 more lesions through my brain than what I had at that time. And it led to significant cognitive challenges. It led to I have gone out and done something amazing since diagnosis, and I’m one of the few people I know that’s done all these climbs in diapers the whole way with temperature regulation that is a challenge all the time. That post-exertion fatigue, it hits me like a baseball bat. And maybe I could have started mountaineering straight away without that diagnosis and taken a medication and never had to live with it. And so while I’m doing these amazing things, I live every day with challenges that may have been avoidable. And I guess one of the things is when you’re on that journey, once it’s been mentioned, and I’m a very self-confessed Google doctor. 

And I go into the doctors and let them know what I’ve learned through Google. A lot of them don’t… They don’t have the time to spend as much time on Google. So not all of them… Some of them appreciate self-educating. One of the things was I learned about all of these symptoms of MS, so by the time I was diagnosed, it was sort of like, “Right, yep, finally.” And what I didn’t want to do though was present as a hypochondriac or present as someone that was just always struggling with something. So I masked a lot of it for a very long time, and that was really hard on me. And then when I did finally reach that point of diagnosis, it’s more of a shock sometimes to other people and they don’t know how to help you, and I don’t know how to ask them to help me because I’m so used to sort of living in this… 

I know I’ve got something wrong with me and I don’t want to open up to it because of the what if. And so yeah, if I had my time over, look, I wouldn’t change anything. Because right now in my life, it is just where I’m at. But I certainly would recommend to people to take those symptoms really seriously and not be afraid to ask and not be afraid to advocate for yourself and push for testing and ask the questions because we’re the ones at the end of the day that have to live with it and we have to live with the progression. And had I been diagnosed five years earlier or been a bit more pushy, maybe I would’ve started medications a lot earlier as well. 

Jeremy Henderson: 

Jan, I read a great post of yours on LinkedIn. I’ll just read it out. You remarked, “This body of mine is not the most uncomfortable of vehicles to journey through life. It overheats, freezes up, the electrical wiring is shonky, and it’s pretty unpredictable.” I think you compared it to your first car. I wonder if you just elaborate on that and talk to me about that. 

Jen Willis: 

Yeah, and look, that was my reflection on climbing Everest, and I likened it to trekking up there and arriving up to Base Camp alongside all of these other people. Very few who had… No one that season had MS. And so other people had their own challenges, but I lived with all of these different things that were going on, and you get to Base Camp and then you start your rotations to climb the mountain. And looking at everyone in our group and these strong people and knowing their health and knowing what was going on, “I’m like, oh my God, you guys are the four-wheel drives of the mountain. You are made for this and you are pumped and you are primed, and you are firing on all cylinders. And I’m here alongside you, and I don’t actually look that different, but I’m in a two-wheel drive here. Once we start going up the mountain, I have got to be able to change those gears, and I have got to be able to drive the absolute hell out of this car to get it to the same place.” 

And I think one of the things that was a little bit challenging for me in that was one, there was the physical effort but not looking any different. And I don’t want people to feel sorry for me, and I don’t want people to make life easier for me because I’ve got MS. But there are a few moments when you just sometimes want people to remember how hard you’re working and not wonder why you seem to be working so hard is to go, “Because I’m driving a two-wheel drive up here, buddy.” And it’s coming up with metaphors and trying to have some way where someone can understand what’s it like to be in this body. And most of us with MS know what it’s like not to have MS as well, because it’s not a condition that we’re born with. It’s not something we live with for our whole life. And so we have the opportunity to compare ourselves pre-MS to ourselves with MS. And that’s quite a powerful comparison to be able to make, to understand how much harder we have to push and drive ourselves to get to where we are going. 

Jeremy Henderson: 

So Jen, just one final question for you, and thank you so much for your time today. I wonder what’s next for Jen Willis? 

Jen Willis: 

So, I mean, look, there’s a couple of things. There’s the practical need to do, want to do professional aspirations and necessities. And so I am in the process of putting together my own enterprise that I have named Climb Your Mountain, and it’s about the art of fearless living, and that’s about physical mountains and metaphorical mountains. And I’m really keen with that to do some coaching, to do some speaking, to put together some programs that can help others with MS, without MS. It’s not necessarily for people with MS, but do that. I’m actually really keen to look at what it would take to set up a charitable of that so I can take more people back up to Base Camp. This last trip, I just volunteered my time and funded my own way. And I don’t have an income at the moment to be able to do that multiple times. And so if I can set up a charitable arm for that where we can get donations in to help people climb their mountains, real mountains, I think that would be pretty special. 

I’m keen to do some speaking and I’m avoiding putting off the one thing that I really, really want to do. And that is I really want to go back to Everest in May and climb all the way to the summit. I’ve got 848 meters of unknown terrain. It’s less than a trip down to the corner store, but it’s a pretty powerful part of a life journey for me. And I think I just want to be able to get back and yeah, re-pick up from where I left off at the South Pole and just take those final steps and essentially see where my body gets me. Last time, it was circumstances beyond my control really that turned us… Me around at that point. And this time, I may not make it to the summit, but I’d like to take every step I can to reach my highest sort of place on this earth and see if I can get to that summit. 

Jeremy Henderson: 

Well, Jen, you’re an inspiration to all of us. Thank you so much for your time today. It was lovely to talk to you again. Thank you very much. 

Jen Willis: 

You’re welcome. 

Voiceover:

Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.