Episode 17

Whispers of Resilience. New book gives voice to MS lived experience.

Diagnosed 13 years ago with MS, Justine Martin was told by her neurologist that she wouldn’t work again.

Undeterred Justine has found purpose in helping other people through telling her story and giving them hope. Along the way Justine has earned recognition and many awards, as an accomplished speaker, life coach, artist, author, publisher, teacher, and entrepreneur.

Now she’s combined all of those passions and skills to shed light on the resilience of other Australians, with her latest publishing venture; a new book that brings together the stories of 26 extraordinary authors who’ve bravely shared their unique experiences and journeys living with multiple sclerosis.

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Episode Transcript

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:

Welcome to The Raw Nerve Podcast. I’m Jeremy Henderson, filling in for your co-hosts, Radio Legend, Phil O’Neill, and MS Australia’s CEO, Rohan Greenland. Today I’m delighted to be speaking with Justine Martin. Justine wears many hats. She’s a successful CEO, an accomplished keynote speaker, life coach, artist, author, publisher, teacher, and entrepreneur. Justine joins us today ahead of the launch of her latest publishing venture, a new book that brings together the stories of 26 extraordinary authors who’ve bravely shared their unique experiences and journeys living with multiple sclerosis. Justine, welcome to The Raw Nerve.

Justine Martin:

Thank you, Jeremy.

Jeremy Henderson:

Before we start talking about your exciting book project, I’ve just got to mention this. So just over the weekend, you’ve cleaned up at the 2023 AusMumpreneur Awards, the annual awards program that recognizes Australian mums in business. So I wonder if you could tell me a little bit about that.

Justine Martin:

Yeah, I did. I won four awards. I’m still pinching myself over that, Jeremy, because I think there was around about three, three and a half thousand entries into it from moms all across the country and obviously different categories. And I took home a gold in Disabled Business Excellence, and that means a lot to me as a disabled woman there. So over the last three years, I’ve actually got silver, bronze, and now gold in that one. But I also took home a silver in Podcast and also Overcoming the Odds, a silver in that one, and a bronze in One to Watch. And that’s not just against people with disabilities, but it’s against able-bodied people as well. So I’m out there showing that even if you have disabilities, that you are still valuable members of society and that you can still achieve great things in your own life and in the business world.

Jeremy Henderson:

Congratulations. What does that recognition mean to you?

Justine Martin:

Well, considering that my neurologist told me 12 and a half years ago that I’d never be able to work again because of my disabilities, and I do have cognitive impairment because of the MS, it didn’t mean that I can’t work. I just had to retrain and find a way that I could retrain for me, not for the former me.

So what I used to be able to do, I can’t do anymore, but I can definitely have re-scoped my skills. So my MS journey, Jeremy, started when I was nine years old. My mum was diagnosed in around about 1981. And so I was a child of a parent who had MS. Back then there were no disease modifying therapies and there was very little support. We had a local MS society in the little country town that we grew up in. My brother and I never really worried about getting MS because we were always told that it’s not hereditary, which it’s not. But no one told us about the genetic predisposition. So then I started getting some symptoms, which I didn’t even realize at the time when I was in my 30s. And I lived with those symptoms for about eight, nine years. And then my vision went as it does with a lot of MS patients, and I went to the doctors. And then about six, seven months later, I was diagnosed when I was 40 with MS.

Jeremy Henderson:

How did that impact your life or change your life? Was that a turning point in terms of-

Justine Martin:

I was so angry, so angry that for all those years we were told that we couldn’t get it, and then all of a sudden here I had it. And like I said, my neurologist at the time told me that I had to stop work because of my cognitive impairment. And I went down a really dark deep hole for probably around 12, 18 months. And then the only good thing he told me was to find a hobby. So at that point, I didn’t have a hobby because I was always so career focused and never found time, but I’d always wanted to learn how to paint and I thought, “Well, I’ll do that when I retire sometime when I’m 80 or 90.” But when I was diagnosed and then stopped work, all I had was time and I went and learned how to paint.

And that was a saving grace for me, finding that hobby. That hobby then became my first business back in 2003. Sorry, 2013. See, MS brain farts. They happen any time. Yeah, 2013 I registered that first business, and that was a real turning point because all of a sudden it’s like, “Oh my gosh, I still have a purpose.” My purpose then was just to make people smile by them looking at my artwork. And now my purpose is to help other people through my story and giving them hope. So one business has evolved into the next, and I actually now own and operate seven businesses. People just think that I’m nuts, but they all kind of work in with each other. It’s just brilliant. And the supports that I have put in place to help me, and now like I said, I have to learn things differently, it takes a lot longer to learn them, but it’s not impossible to do it. I just know that I need that extra support and that extra time in learning something new.

Jeremy Henderson:

When I introduced you, Justine, and I mentioned the many different hats you wear, I was quite exhausted by the end of the list and just thinking about the amount of work you’re undertaking. Successful CEO, you’re this accomplished keynote speaker, life coach, artist, author, publisher, teacher, entrepreneur, you’re wearing so many different hats. But I guess the question is how do you find the time and the energy and the enthusiasm to juggle so many different things?

Justine Martin:

Well, I’m very fortunate, Jeremy. I don’t do my own housework.

Jeremy Henderson:

Wow.

Justine Martin:

And it’s a matter of working out and prioritizing, “Okay, the spoon theory, how many spoons have I got? What can I do?” And because I don’t do my own house cleaning, I’m just using that as one of the examples, the energy that it would take me to clean my house, I wouldn’t be able to do anything else.

A lot of the businesses are run online, and that means me sitting on the lounge, I have a beautiful comfortable reclining lounge with my feet up because a lot of my symptoms are in my feet and my legs with spasms and nerve pain, I’m on that lounge and I’m just on the laptop. It becomes a bit of an issue when my vision goes, and then it’s like, “Okay, well I need a support worker in to help me do these things.” But I have a very good schedule planner that I work from and everything keeps timed.

I can be working on a project, but it’s incorporating two or maybe three of the businesses in there as well. So yeah, it comes under the umbrella of Justine Martin Corporation. But then there’s JUZT art, Resilience Mindset, Van-Go Decals, Morpheus Publishing, Justine Martin Speaker, and they all kind of work in with each other except for Geelong Residential cleaning and gardening. That was a separate one over there as well. But I started that one to give my daughter and her husband a job, and that’s working really well.

I’m passionate about the disability sector. So the majority of my clients at the moment are all in… They’re all disabled. So we clean, NDIS cleaning. We do the gardening for NDIS. The Morpheus Publishing, the writing groups that we’re doing at the moment are primarily NDIS clients to help them give them a voice. So it all fits in.

I do get tired, don’t you worry about that. But I do schedule in breaks for me as well. And self-care is the number one thing that I take care of in my life, and that’s good nutrition, making sure that I get enough sleep, making sure that my medications are on point, I’m on CBD oil by prescription. And that was a game changer to me because my fatigue levels then changed because I actually sleep through the night and I’m not waking up as tired or as fatigued if I’m not on it either. I’m still tired, I’m still fatigued. I do tend to push myself probably too much and I get sick by doing that. So there is a really fine line that I balance on, “All right, well that wasn’t such a smart thing Justine to do. You probably need to slow down in that area or think smarter or outsource it as well.” But it all seems to be working.

Jeremy Henderson:

That’s probably a really wonderful segue into your exciting new book project because this book project really brings a lot of those different pieces, a lot of those different passions together, doesn’t it? I wonder if you can tell me a little bit about the genesis. I should say, Justine, before we go any further, I’m talking to you today, we’re about seven to 10 days out ahead of you or launch of this book. By the time our listeners hear this podcast, the book will already successfully be out in the world. It’ll be in the hands of readers. But at this point, it’s still a few days away. But I wonder if you can tell me a little bit about the genesis of the book and talk to me about how this project got underway.

Justine Martin:

So it would’ve been about December 2021, I wrote an article for Mama Mia on Christina Applegate, Selma Blair, and myself all having MS and what the dangers are of celebrities just talking about their stories and especially for someone that’s newly diagnosed because they have a lot more resources than what the average person actually does because of their financial situations. And then it got me thinking, “So we all have MS. We’re all linked by that common thread, but our journeys are so, so different.” And the problem with celebrities out there talking as well is that family and friends can see how well these people in the media are actually doing, but then they look at the person that has MS in their life and they may be struggling. How can we show that MS affects us all differently?

I actually had a meeting with your CEO because he got wind of the article and I sat down and thought, “Well, how can this be bigger? How can we reach more people?” And I co-authored four anthology books before and I had a publishing company, so why not do our own anthology? And I put it out to the MS community wanting people to author their own stories, to tell their own stories of being diagnosed and what it’s like to live in their lives, their bodies on a daily basis and if they’d done anything good since they were diagnosed with MS. And I got 25 replies. I’ve got a few more, but we selected 25 of them.

I’ve got a list waiting for the next book to come out. So we’re going to do this annually. It has just been the most amazing project to work on and be a part of. We did nearly two months of writing classes, so I didn’t just give them what they needed to do and go, “Here you go. Go off, come back in two months with your written chapter.” What we did was we had about 30, 35 classes, I think, in that period of time, and we formed a community in that. It’s just been amazing.

And from that as well with Morpheus, and this goes under the brand of Resilience Mindset as well, there have been friendships that have been formed with all the authors, is that there was around about six of them that went, “We think we want to write our own stories.” And I’m like, “Fine, let’s keep going. Let’s keep doing it.” I’m so proud to help people tell their own stories, write their own books. Morpheus Publishing is now giving away some scholarships for those that come through Morpheus in a circle writing group and help them publish their stories, giving them a voice on what they’re going through.

So we ended up with 26 authors, including myself. The book’s about 350 pages, so it’s thicker than what we anticipated, but I allowed people to actually put some photos in of themselves because I love reading a book and seeing what the authors actually look like. I also interviewed every single one of them. We have a podcast that’s dropping at the moment. So from the 1st of September for 26 days, there’s a new podcast that’s coming out. And we’ve also put it onto a vlogcast because we wanted to incorporate all abilities in there as well, so everyone’s disability. So they could either read the book, they can listen to the podcast, or they can watch the podcast. We are also launching on Kindle as well. And I am in the process of having the book converted over to Audible, but the Audible or be a little bit longer yet in the production because it is a lot thicker than what we thought it was going to be.

Jeremy Henderson:

So tell me, Justine, was it a more challenging exercise than you thought? What struck you about the whole process? Presuming you haven’t done something exactly like this before and certainly not with this MS sort of community, what were some of the challenges and what were some of the surprises?

Justine Martin:

Hoo-ha. Oh, where do I start? Yes, it’s been challenging, but it’s also been amazing to be a part of. And then with every challenge that’s come up, it’s like, “Okay, how can we fix this? And we’ll learn from this so next time we can streamline the process a lot faster.” Some of the challenges were… I don’t even want to say challenges, but people’s disabilities. So we’ve got a couple of authors that can’t use keyboards due to their cognitive issues. They still have stories to tell, so I actually interviewed them. I sat down with them over a series of a couple of weeks and interviewed them. Then I took those transcripts and edited them and then gave it back to them to proofread. And they’re like, “It’s just like we spoke it.” And I’m like, “Well, it is. That’s exactly what we wanted.”

Each chapter, it’s not like a normal book where it’s all consistent in the way that it’s written. This is different. because we didn’t want to lose people’s voice in each chapter. We wanted it to come across in the way that they’d written it. I mean, it was edited and it was professionally edited, but we didn’t over edit it. And that was a learning thing as well. We sent off the first couple of chapters to be edited and we went, “No, this is not going to work the way that we want it to.” So we had to kind of cut the editing process back a little bit.

The type setting, that was a big learning curve for us, and we lost quite a few weeks. The way that we were going to do it just wouldn’t work with the amount of photographs that we had in it. So we had to hire a professional typesetter to get in and then work with them, which has been brilliant. She’s done an amazing job on the book and I couldn’t be happier with it.

Getting people to use technology as well, because the writing groups were all done online. So it was a matter of then me talking to their support coordinators because NDIS funded the writing group. The book was a bonus for all of these authors. They didn’t pay for the book. They just paid to learn how to write and to write their stories and to work with me. So that was good. It was a matter of contacting support coordinators and saying, “Hey, I need a support worker in place that when such and such is on this Zoom call that they know how to get into it. Can you get someone there to show them?” And that happened. And that happened up in Townsville because we’ve got authors all around the country that contributed into this.

And launches happening. The book launches are still going ahead. By the time this goes to air, we will have had the first one, but we’ve got an online launch that’s coming on the 21st of September. We’ve got one in Townsville on the 5th of October. And due to popular demand, we’re putting one on in Sydney as well, but that date’s to be confirmed, but it’ll be sometime in October, November.

Jeremy Henderson:

You spoke earlier, Justine, and you made the point that no two people’s MS journeys are exactly the same. But I wonder whether there was a commonality, something in terms of these stories that maybe links all of these stories together. I wonder what that might be.

Justine Martin:

Yeah, there is. The MS Readathon, because so many of the authors, and they mentioned it in their chapters, “You guys have done an amazing job in MS into the community and making people aware of MS.” Just not many people know what MS does on a daily basis. The common thread was so many people and so many of the authors as children read books to the Ms. Readathon, myself included. So that was a common thread. Another common thread was the cognitive issues that we’re all facing and that as well.

So I think if this project had been led by an abled-body person that didn’t understand what MS does and the difficulties that there is, I think it would probably have had a different outcome. The patients in dealing with people’s disabilities with this and the cognitive disabilities and getting someone to write as well, that was a challenge. But we all had that common thread of, “Yes, we’ve got MS.” A lot of us have done that MS Readathon. And a lot of us, some of the meetings, we were good, some of the meetings were all on a little bit of a low because we’re either fatigued or there was something happening in our bodies that we couldn’t explain.

We had authors going to hospital having relapses and working around that and trying to help people with it. But every Zoom that we did, every authors, the community inner circles that we did were recorded so people could catch up on it as well. So yeah, there was that common bond through there, but definitely the MS Readathon.

Jeremy Henderson:

So you’ve built this well-earned reputation around somebody with great resilience, somebody promoting the value and the importance of resilience. And now this book project was an opportunity, I imagine, for some of these authors to shine and to demonstrate and speak to the resilience that they’ve developed and shown in their lives. Does that come out in this book

Justine Martin:

Oh yeah, most definitely. That’s come out with people wanting to tell their stories as well and going forward that they want to write their own books. I mean, my chapter goes through my story of being diagnosed with MS, but then I’ve undergone the three heart surgeries and then having the three primary cancers and two other blood conditions and broken bones and the death of my partner and everything in the meantime. We’ve all faced those adversities especially, and things seem to multiply when you do have chronic illnesses as well.

But yeah, look, it’s just been an amazing project to facilitate and to compile it all and to help cite any extra people. The amount of people that this book is going to help worldwide. And not just people that have MS. This is directed for family and friends and the medical practitioners to read what it’s really like on a day-to-day basis because every single chapter is different, every single chapter is different. There’s no two stories that are the same. There’s similar things through each chapter, but they are all entirely different and they’re all still living an amazing life.

Jeremy Henderson:

Some people, their MS journey could be brutal, can be paranoid, tough. How important was it that these authors were really allowed to tell their truth and tell their stories, the good and the bad?

Justine Martin:

It was 100%. 100%, they had to tell their own story, and that’s why we didn’t want to over edit it. It was important for them as authors, as people with MS to actually share their stories. I mean, some of the stuff that they’ve shared in their chapters is gut-wrenching and very personal, very, very personal. But they wanted to share, and we had discussions about this in the authors groups. They wanted to share it so it could help someone else. So it could help someone that maybe there’s someone sitting out there that’s got MS and they’ve had it for years and they’re alone with it all because they’re too embarrassed to go to their doctor and say “This, this, or this is happening too.” And they can read in it, “Oh my gosh, someone else is going through what I’m going through and they’re doing okay. They’re still out there living their best life despite the disabilities that they’ve got.” It could be someone has a different disease or different disability and they read on what’s still being able to achieve with every single one of these authors.

When we picked everyone to go in, we didn’t screen on that. It wasn’t like, “Oh, well you have to have done this, this, and this that was positive.” That wasn’t the case at all in there. And when you read it, because I know you haven’t read it yet, Jeremy, you’ve read a couple of the chapters, but you’ll see just how inspiring every single chapter is and how brave these people have been to put their story out to the world. I’m very passionate about it if you can’t off tell, so-

Jeremy Henderson:

No, absolutely. Congratulations again, Justine. Now we’re talking about this book as if it doesn’t have a title, but it does have a title. We just can’t reveal it ahead of launch. But by the time this podcast goes to where, as I said before, it will be out in the wild. I think you’ve got a copy of the book there. Maybe if you can let us…

Justine Martin:

I do. I do. Not that anyone can see it, but you can see it, Jeremy. So it’s Whispers of Resilience: Our MS Stories. This is the first one. And like I said, we are going to do one every year. And we’ve also, and I can do a sneaky peeky on here because I don’t know if you are aware of this, is that we’re going to do an international one as well. So I have a lot of connections overseas that have MS, and I’ve already got a wait list going on that, but we wanted to get this one off the ground launched. It’s available on all major book selling platforms, so like Amazon, Barnes & Noble, Target, all of those.

We are giving 25% of the profit of the book back to MS Research. So that was a thing that we all decided on of where the money was going. And we want a cure, and what better way than telling our stories and raising funds for that. And the remaining profit goes back into Profit with Purpose and giving out those scholarships and helping other people, particularly with disabilities, publish their own stories.

Jeremy Henderson:

Excellent. Look, thank you very, very much for your time today. Congratulations on the book. Best wishes for the launch, and we will provide links to our listeners so they can find out where to purchase the book and access the book going forward. But yeah, big congratulations. Thank you.

Justine Martin:

Thank you, Jeremy, for having me on today.

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. 

Views expressed on the Raw Nerve Podcast, including any discussions or reference to medications or treatments by podcast guests, do not necessarily represent the views of MS Australia and should not be seen as either an endorsement or rejection of a treatment.

 MS Australia does not recommend any specific treatment for people living with MS. Decisions about any treatments, taking into consideration the potential benefits and side effects for each individual’s circumstances, should be made in careful consultation with the person’s neurologist.

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Whispers of Resilience. New book gives voice to MS lived experience.