Inspiring Lives: Jillian Kingsford Smith

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Nicola: Welcome to the MS Education podcast series. Thank you for joining me. I'm Nicola Graham and in each episode, we're going to be joined by an expert to discuss strategies for living well with MS.

Today, I'm talking with Jillian Kingsford Smith as part of our Inspiring Lives series of podcasts. Jillian is an international bestselling, award winning journalist, a Kiss Goodbye to MS ambassador. She's part of the Stop and Reverse MS team, which is a global strategic initiative whose aim is to drastically reduce the time it will take to find a cure for MS via accelerated research. Jillian herself was diagnosed with MS in 2012 at the age of 42. At the time of being diagnosed, Jillian asked herself, “So what now?” and we'll take a look at what happened next in this podcast.

So very warm welcome Jillian and I realise I've given your age away.

Jillian: Never mind. I just had a milestone birthday can you believe it? So, it's all out there now.

Nicola: Well, congratulations and thanks for coming along to do the podcast today. So, when you received your MS diagnosis, Jillian, and you asked those words, “So what now?” Tell us, wat happened next?

Jillian: Yes, it was such a confusing time back then and I must admit because my route to diagnosis was I guess thankfully, very quick, certainly none of this MS stuff was going on in my mind anyway, so there was, I wasn't prepared for someone to walk into my room 48 hours after I'd started dragging my leg to say “you have MS.” So, I think in those early days, there was a lot of my family and I sitting around thinking, a little bit confused and fairly hollow, and I don't think fear even really entered into it in those, in that first week or so. It was just like, “Wow, okay, shell shock and What next?”

So, I spent about a month in hospital because the MS just caught up with me very, very quickly and I couldn't walk, I could barely think, I couldn't use my hands, all sorts of things. So, I had to learn to do all that again and hospital was the safest place for me. During that time, I did what I'm sure anyone newly diagnosed with a chronic illness does, they jumped onto Dr. Google and thought, well, let's find the answers there, and I think we all quickly realised Dr. Google does not hold the answers, but I read a lot of alarming stuff, Nicola, and part of it was stuff I didn't want to read, but part of it was like, oh, I don't think that's the outlook I want to go forward with.

So, I mulled it over and clearly, I didn't find my plan to live online because that's what I wanted. I wanted the plan laid out for me. I wanted the, this has happened, so do that and then do that and you'll get this sort of response.

I'm a journalist by trade and, and writing's one of my biggest passions. So, I thought, well, I think there might be a story here. There might be some sort of way of learning how to get on with life and how to create your plan if you talk to others who are going through this as well.

So about six weeks after I was diagnosed, I decided to start writing a book about MS. The book called Taking Control is actually nothing to do with me. It was me interviewing about 30 other people around Australia who'd been diagnosed with MS anywhere from one year through to 30 years and it was about how they got on with life. And they're all in different stages of life, male, female, new families, older people established in their career, a bit of everything, so it was a real mixed bag of learning for me. So, I guess, maybe I was burying myself a little bit as well, but it was how I got through those first few months and having a project I guess to sink my teeth into.

Nicola: Yes, and it sounds like within six weeks you decided to write a book about what was happening but also the opportunity to pick people's brains who were living well with MS. You would have been on a steep learning curve and I'm really keen to find out what you learned. But I'd like to ask you before we get to that, what's been your lowest point or the hardest point in your life after diagnosis Jillian, and what enabled you to climb out of that?

Jillian: Yes, look it's a really interesting question and for me I think when I was newly diagnosed, there was a lot of physical stuff that I thought would define me and those are the visible symptoms that I was displaying. I thought they were going to be the biggest thing going forward like oh people will see me on a walking stick or people will see me, putting my hand to my temple as if to try and think of the word or whatever it might be when I've got cog fog.

So, I thought that was going to be the hard stuff. But I think what really brought out the demons and the frustration and the angst in me, so those low points was trying to work out that new sense of self that I needed to find. There were a lot of questions with along the lines of, how am I going to continue my career? How am I going to be able to contribute to the things that matter to me? Could I even have a relationship going forward? I reflect back and think, it was just such a steep period of adjustment and I think coming to terms with a chronic illness is tricky and I was really lucky that I had an amazing psychologist who I'd been seeing for quite some time anyway and she described it perfectly. And I think the analogy she uses is that on one end of the spectrum you have your normal, healthy, full energy, go getting self and that's the person that you're really comfortable with because you're used to that person because you've been living as that person for a long time. You know the playbook, you know how to deal with things as they arise, your problem-solving techniques are really synced into that persona.

But then on the other end of the spectrum you've got the MS self and that's the person who's confronted with the new challenges that a chronic illness brings. And these are not challenges that you're used to having to deal with. Processing how a chronic illness fits into the scheme of things is, it's not something that we really sit around contemplating at all. We think about, how do I deal with an unhappy client or a business problem? Or how do I pay this month's mortgage? Or how do I patch up a fight with a loved one? That's what we know how to deal with. But then suddenly you're confronted by this other persona that MS self, and they've got to deal with all these new experiences and certainly a massive amount of information. And you do work out how to deal with all that and it is a unique set of challenges.

But what Anne my psychologist, explained to me was that there's this unnavigated and bumpy road in between where you travel between those two people and that bumpy ride can get a bit frustrating as you try to go between the old self and the new self and work it out.

So yes, it's certainly over time the bumps weren't as bad and the adjustment wasn't as bad and I think one thing I learned through that time is give yourself a break, give yourself the time to work out how to navigate all of that. You ask yourself what enabled me to endure? And I mean, that's a massive question. There's so much but I think the things that come to mind first and foremost are that support network, those amazing family and friends who stuck by me when I was having bad moments and also let me continue to be part of their lives, so you have that normalcy. As I mentioned the advice of a great psychologist was really good for me to navigate stuff and keeping active, realising that your life is not just MS there's all these other things to keep doing as well.

Nicola: Thanks Jillian. There's a lot in there isn't there about transformation and there's just a lot to think about in there about acceptance and that guidance of a good mentor, a good psychologist and I think we've all really started to appreciate the importance of connection and your work talks about decluttering your life. Can you tell our listeners a little bit more about what you mean by this?

Jillian: Yes, okay. It's been a really useful tool for me and it probably was very much kicked off within that first month of being diagnosed but I recognized a dire need to simplify life to survive. My energy became very important to me what energy I had and who I wanted to be able to give that energy to or what I wanted to be able to give that energy to. So, bit by bit I took life apart. I started putting it back together again. It was really valuable and cathartic and I was in a position where I had to because quite simply I had just gone through a big divorce and I had sold the home I was in, I was in hospital, I was having to try and find a new place to live, I was running a business at the time and I realised I couldn't keep on at this pace and doing this and all that sort of stuff. So, I was given the opportunity to pull life apart and it's something I still do from time to time and just taking a bit of a broad look at well what works and what doesn't and what do I need in my life and what don't I need? And I'm certainly not by any means saying that I live life now as a monk or anything like that, but I've been able to engineer life to deal with some of the inconsistencies that MS throws to me. There's more room for flexibility in my life now because I don't have that mental or emotional or physical clutter.

I hope that makes sense because again, there's lots of big sorts of notions in there but it was really freeing to be able to do it.

Nicola: It sounds like you had time to stop, or you were forced really to stop and reflect and reprioritise and simplify.

Jillian: Absolutely.

Nicola: So, Jillian you've answered this in part but just to drill down a little bit deeper here, how did you actually go about identifying your own priorities in life?

Jillian: Yes, look the very first priority became really obvious and very strong right from the beginning and that was that health without a doubt needed to be the number one priority. And I was pretty banged up from the MS as I've described before and I started making some changes and going “hey, this is a bit more serious than I thought”. And in getting there but it was about 10 weeks after I was told you have MS, but I also discovered I had breast cancer and I don't talk about that a lot Nicola because it's a bit confusing for people and it's just a lot of information to take on as well. But the breast cancer for me was that tap on the shoulder that I needed to go, “Okay, pull life apart. Commit to some priorities here. Health has to be number one. We've got to rebuild life so that you can get on with stuff.”

I guess that aspect of health and living as a healthy human was pushed to the forefront necessarily and you and I talked a little bit about how did you get through that time. And I think it was just such a lot of chaos trying to deal with two different diseases I mean MS by itself throws you just into a tsunami of chaos but with both of them at the same time it was a lot to take on.

My parents were amazing, my sister was amazing, so my family are there propping me up and being so supportive and so strong and yet I realise in the years afterwards that they were crumbling inside. But at the same time, I had to stay strong for them, so it was just that process of putting one foot in front of the other that forward motion just like get on with this. And you work out that I was about to say that new sense of it's not that it's just you've got to get on with life, and maybe looking at a little bit of this as a bit of a gift as well. Like I've got the opportunity to make some changes here to make life a little bit better for me and those around me how am I going to do this?

Nicola: Okay, so that leads me on then to our final question, which is about throughout your personal journey and the research you've done for your books, can you share with us the lessons you learnt about living a good life with a diagnosis of MS and I also want to add on to that Jillian, how did you make health number one? What actual changes did you make?

Jillian: Yes, I'll answer that part first. Well, it's top of mind with my cog fog today, I guess the prioritisation, it seems really big and overwhelming and I probably like a lot of people jumped onto a few books to start with particularly around diet and initially it was like, oh yes that sounds great but gee that's a lot and it wasn't until I prioritised health that I went back on some of the diet stuff and went, yes that makes sense now and because it's important I'm going to do it.

But I probably would say that throughout all this time, time sped up and so time became a form of currency to me. And because we really do have a finite amount of time, I learnt to value how I spent it and what I gave it to and when you start doing that, at least for me, it became really easy to work out what the priorities were and they both reinforce each other really. The priorities reinforce your sense of time and your finite amount of time reinforces the priorities.

So that was how I got into that, and again it's going to be different for everyone. When I talk about living as a healthy human that's going to look and be different for everyone. Like, never will you find me advocating for a particular diet because that will be different for everyone. There's a couple of types of exercise that I love doing, but I hate others and that's going to be different for everyone as well. So, find your own path to being a healthy human, but do know that it works.

I think that that would be one of my messages and that may I think, lead on to your next question. Some of those lessons about living a good life. You know what? I really hate platitudes but I'm going to say something that's going to sound a little bit like a platitude. But I do believe there's a gift in every challenge and I was given an amazing chance to build the life that I needed to live happily and healthily. I think I started becoming really clear on purpose and looking at some of my values in life, and also my sense of self and identity, I guess that's the biggest way that MS has been a bit of a gift to me, and people, when I say that, look at me strangely like, “What? You're calling it a gift?” But I'm happier now and I'm healthier now. MS has opened up some great adventures to me, some which I didn't realise how comical or how fabulous they were until you can sit back and reflect on them, but certainly some great adventures and amazing opportunities and that's why now that I'm out of that really messy period going back eight years ago, I can see it as a gift. So, I hope that helps a little bit.

Nicola: Thanks, Jillian, it does, it helps a lot. I love the fact that you said that you can see it with some sense of gratitude, and you got clear about your purpose and your values, and your new self-identity and it gave you an opportunity to redefine and redesign.

I'm just curious, from a really practical sense, how does your life and you’re thinking and your attitudes look different now to how they might have looked if we'd have met you 10 years ago?

Jillian: Yes, another big question. I think you said a really interesting word there before and its gratitude. And I have learnt a different sense of gratitude and I'm not always good at this, but I am good at recognising the things that I'm grateful for in life and I try to do it on a really regular basis because it will sort of even out the crappy days. Even on the crappy days I recognise that my life is better now than it was before. But in the middle of all of that and this is part of your question, is how did it get better? I think it got better because that's one of my coping techniques is that the decluttering allowed me to simplify life and I probably do more with my energy in less time if that makes sense. Because I find the stuff that's meaningful to me now. Very rarely do I do stuff that I'm not totally committed to or that doesn't have some greater meaning to me and that sounds I know really philosophical and even a bit lofty and all that sort of stuff, and I don't mean it to be but it's like I got good at saying no because I had to preserve energy.

Nicola: I run wellness lunches, and we do a wellness wall and one of the things that comes up in every lunch is learning to say no.

Jillian: And also, realising why you're saying yes. I think that's probably another part that I've only started learning very recently and I lost a little bit of my gut instinct there for a while and now that I feel a bit more in tune with that it's gotten easier to say yes to things for the right reason and understanding why and that leads on to better decisions in general.

So, there's some of the philosophical stuff and from a really practical point of view and again this is where I'm very grateful for the sort of life I lead in that I do work for myself now with different philanthropic ventures that I do in the writing and I'm able to manage my time and be flexible and allow for flexibility or for things to come up and, that might be bad days and go, right, I'm just going to rest today. Right through to, I feel great this week, I'm going to really embrace these opportunities. So, you're having a look at your schedule and what you do, and all that sort of thing can be massively helpful.

Of course, that will lead into your mental health and hopefully eliminating stress and anxiety and stuff which we know is not great for living with MS. And for fear of reinforcing that healthy human part I just think when we function with a really healthy system of course that's going to give you great energy and you're going to have less other illnesses to deal with.

Nicola: What I'm picking up from what you're saying Jillian, is that you're very purposeful and connected in with your intuition and your gut around what you do and what you don't do, and I think that is a really beautiful and inspiring way to live.

Jillian: Yes, it allows more time for the stuff that's important to you and it's not paring back life it's getting bigger in the areas that matter, I guess.

Nicola: Beautiful. Well, I think that's a great point for us to close our podcast.

I'm sure I'll come back and revisit a conversation with you at another time Jillian but thank you so much for sharing how you're living your life now in an inspiring fashion post diagnosis.

Thanks a lot Jillian.

For more information on anything we've covered today please get in touch with MS Connect on free call 1800 042 138, or email [email protected] and don't forget to find the MS Podcast on your favourite podcast player such as Apple, Google Play, Spotify, Overcast, or you can access the podcast directly from our website, ms.org.au.