Episode 7: Compassion, Community & Digital Change | Ava Battles, CEO MS Ireland

In this episode of the Digital Mythology Podcast, I speak with Ava Battles, CEO of MS Ireland, about leadership, compassion, and how digital transformation can support people living with multiple sclerosis.

Using the Digital Mythology framework, we explore three myths that help explain how organisations create real change.

Xin – Leading with Heart and Mind
We begin with the story of Brigid’s Cloak of Compassion. In Irish legend, Brigid spreads her cloak not to conquer land, but to create sanctuary. It’s a powerful metaphor for leadership rooted in empathy and care.

In the MS community, every statistic represents a person. Behind every number is a real human story.

Metaphor – Making the Invisible Visible
We explore the parable of The Blind Men and the Elephant. Each person experiences only one part of the elephant and mistakes it for the whole.

Multiple sclerosis can be similar. No two people experience MS the same way, which is why empathy, collaboration, and understanding are essential.

Catalyst – Empowering a Community
Finally, we discuss the story of the Bundle of Sticks. A single stick breaks easily, but a bundle is strong.

This myth reflects the strength of communities like MS Ireland, where people come together through advocacy, support, and shared experience.

We also discuss how digital initiatives such as online physiotherapy programmes, The May 50K challenge, and World MS Day are helping connect and empower the MS community across Ireland.

About the Digital Mythology Podcast

The Digital Mythology Podcast explores how ancient myths and storytelling can help leaders make sense of modern challenges like digital transformation, leadership, and organisational change.

Mythology isn’t about fairy tales – it’s about the stories behind human transformation. Digital transformation is no different – it’s about people, not systems.

Connect and follow the host Declan Goodman at the link below:

declangoodman | Instagram, Facebook, TikTok | Linktree

The Digital Mythology Podcast is here to help you bridge the gap between complex tech and human understanding, transforming your digital efforts into a narrative that truly resonates. As you embark on your digital transformation journey, remember that success isn't just about the tools or technology—it's about how well you can tell your story. By leveraging the timeless power of mythology, storytelling, and emotional connection, you can engage stakeholders, win buy-in, and inspire action.  

Join host Declan Goodman as he guides you through this journey, one story at a time.

Transcript

SPEAKER_01 0:00

Hello and welcome to the Digital Mythology Podcast. I'm your host, Declan Goodman, Digital Mythology where Myth Meets Modern Mastery. Today I'm very excited to talk to Ava Battles, CEO of Multiple Sclerosis Ireland, MS Ireland. And today I'm going to be talking about how to use the three pillars of the digital mythology framework to help gain better outcomes of digital if you are a not-for-profit or a charity. Ava's um very um senior executive in MS Ireland, and I've met Ava a number of times, um, and I was always moved and uh struck me was her how much compassion and energy Ava has for the industry and for the overall uh MS Ireland um movement. Ava, welcome. Delighted to have you on. I'm delighted to be here, Declan So we're gonna talk about digital today, and we're gonna talk about how it impacts or enables, I guess, um, outcomes for uh a major not-for-profit uh organization like MS Ireland. Um, before we do, would you mind just maybe giving us uh a wee bit of an introduction, Ava, to your to yourself, to MS Ireland, and um you know, just to give our audience a little bit more context?

SPEAKER_02 1:18

So my name is Ava. I am currently the chief executive of the Multiple Scroosis Society of Ireland. And I suppose something about me is that I've only ever actually worked in the community and voluntary sector. So since I uh left college, so I did a degree in psychology and then I did a master's in health psychology, I've only ever worked in the community and voluntary space. So you mentioned earlier on about passion, and I'm very, very, very passionate about what the community and voluntary sector can do for the people we serve. And I'm currently I am the chief executive of MS Ireland. So MS Ireland is the only national organization that provides information support and advocacy services to the MS community. So we provide we're probably a service delivery organization and we provide services to people with MS. And I suppose I'm I'm excited to talk about service delivery and how we do that, but then talk a little bit about that whole digital space then and around maybe the challenges around that for me personally, for us as an organization, and and how it helps or not to provide services and the challenges that are involved in that. So I'm excited to have this conversation with you.

SPEAKER_01 2:35

Great. Yeah, and from my perspective, I've worked in digital for many years, but I've always done uh enjoyed working with not-for-profits. Um, MS Ireland's close enough to my heart as well because my dad passed away a number of years ago. He had MS. Um, it's a very invisible disease, it's very um can be quite isolating, etc. So we're going to talk a bit about that today in terms of how digital can help uh those with the MS, people suffering from it, or the carers and the families around them. So I'm really excited, Ava, to have you on today. So thank you for making the time. Um right, we're going to maybe kick off with uh a little bit of uh myth that can't help myself. But I love two things, digital and mythology. And uh mythology isn't about fairy tales, it's about stories that um bring people together for human transformation, and it's ancient and it's not really changed. So, what motivates people uh to engage in you know community uh movements, the likes of MS Ireland, etc., is really about uh the stories behind them. And what I love about digital is digital is a great way to share stories and to let people's voice be heard. So uh this is quite uh quite an exciting podcast for me today. So we're gonna start with uh Saint Bridget of Caldare of Ireland, um, but she was also a Celtic goddess before that, and Saint Bridget was known for her cloak of compassion, so it's a beautiful symbol of where she was um she wanted to bring compassion to the land, but she didn't want to conquer the land or rule the land. So she started providing these sort of um these um movements, these systems of compassion and support into the community to bring, you know, to lead really with the heart and mind. So that brings me to the first pillar, which is shin, which is heart and mind. So that's about when you want to get um connect with people, there's a there's a Chinese word shin, which is X-I-N, and it means the bit between the intellect and the heart. It's a combined um um narrative that helps people move and get connected into a movement like MS Ireland, for example. So I like that myth because Bridget had to work with uh systems back in the fifth century and County Caldera in Ireland, but also um she had to appeal to people's um empathy and compassion. So, with regards to that, you know, um I wanted to just ask you, Ava, a little bit about, you know, obviously it's it's a pretty big part of MS Ireland, I imagine, um, where when you're trying to help people within your community and you're trying to get better engagement, I guess, you know, appealing to that um, you know, what I shall say, systems are cold, you know, digital's cold, it's not warm, it's not really connective. Uh, and if we talk systems, we tend to lose people. So I'd love to know, you know, learn of your insights into that aspect around MS Ireland and the heart and mind piece and how you found digital was able to help.

SPEAKER_02 5:34

Okay, so I think we need to we need to start with maybe just telling people a little bit about what multiple sclerosis is. Okay.

SPEAKER_03 5:41

Please.

SPEAKER_02 5:42

So for me, I would say multiple sclerosis is one of the most common diseases of the central nervous system. So that's a person's brain or spinal cord. And today there are more than 2.8 million people around the world that have MS. But in Ireland, we actually don't have an MS registry, but we do know that over 10,000 people are taking MS medications. Now, Declan, I'm already listening to this and I'm tuning out because I'm going blah, blah, blah, blah, blah. Because we tend to rhyme off these figures, okay? And they mean they mean nothing. You know, to a lot of people, they've already gone, okay, right, that's whichever, didn't know that, whatever. But to me, it's how we just tend how we need to look at that. And this is where you've talked about the heart and mind piece. So for me, there are over 10,000 people in Ireland who live with MS. They're living every day with a diagnosis of multiple sclerosis. They have their own story, each and every one of them. They have their own challenges, they have strengths. Some are struggling, some are managing, but every statistic is a person, okay? And each person then deserves to be seen, to be heard, and from our perspective, deserves to be supported. So for me, when we start talking about digital and statistics and things like that, every number, everything is an actual person. So it's a sister, you mentioned your dad, it's a dad, it's a brother, it's an individual with a story. And you also mentioned that earlier about how digital can help us create stories and get like make it about people. Because for me, that's what it's about. It's all about people. Like that's why I do what I do personally. I uh it's because of the people that I engage with every single solitary day of the week. So you can have as many systems as you want, and you can introduce as much technology as you like. Um yeah, but to me, and and again, I'm not being negative there, I'm just for me, it is just still, it's about people and how we move people and how we connect people. And obviously, there's no question in my mind, you can use technology to connect with people, but we lead, I believe, in MS Ireland with both our heart and our mind, right? So that for me is really important because we're invested in service like a respite facility, where you know you're providing one-to-one intimate care to a person, our peer support groups, do you know everything that we do, our policy, our uh what we're trying to do, how we're trying to make change, but but also did you come into that because we couldn't engage with people now without the use of digital. Do you know what I mean? But I suppose the main thing for me is everything we do and every initiative we do must begin with the person at the center of that. And that I suppose is the most important thing when even when I'm starting talking to you about a conversation about digital, it's it's not just a condition, it's a lived experience, it's an individual, it affects a person's in at every part of their being, their confidence, their independence, their sense of identity, their sense of self-worth. And for me, if we keep that at the heart of everything we do, then we can start having a conversation about how digital enables that.

SPEAKER_01 8:55

It's very lovely said. Thanks, Ava. It's always a passion of mine as well. Um how um it's something in the industry called digital transformation. And I keep saying digital transformation is not about systems, it's about people. Um and we don't, and often in the industry and IT, and this is just a reflection on the industry I've been in for many years. Uh, we we we've been taught a lot about systems and frameworks and methods, etc. But sometimes we miss out that the very purpose of digital is people and it's to help people enable people really to better do what they do or connect how they connect or enable organizations like MS Ireland to to provide um services into the community in a more efficient and meaningful way. So that's a lovely story. Uh how do you find in terms of you know um your experience with digital? Like you were speaking before, I was chatting to you earlier about um the impact COVID had on the overall landscape for MS Ireland. Could you just I mean, I know I know we kind of want to forget about COVID, but it was really a transformation in itself, COVID. It transformed digital all around the world in many industries. Do you want to just share a little bit a bit about what you know, maybe I know you could talk a lot about it because it was a huge impact, but the I guess you know what it meant for MS Ireland and other not-for-profits, you know, around when when COVID hit and you had um those challenges, just and now obviously now out the far end of it, how digital has changed things, hasn't it? For not-for-profits, yeah.

SPEAKER_02 10:35

Absolutely, it completely from MS Ireland's perspective and our service delivery, it completely transformed our service delivery. So I suppose at a very basic level, Deccan pre-COVID, like MS Ireland didn't have I it's a shame to say it, but like we didn't really have a digital strategy in any way, shape, or form. You know, we had because I suppose we were we were we were doing what we do best, which is providing services to people, and that was predominantly face-to-face. So that was in our respite facility, somebody comes in for two weeks of respite. Everything about that is face-to-face service. If I had asked a physiotherapist pre-COVID that or said to them or even mentioned to them that you're going to run an online physio class or we're going to transfer our physical class that is being run in, you know, in Kildare, as you mentioned with St. Bridget. So if you in a community center in Kildare, if we're going to transfer that to an online class, I guarantee you they would have looked at me and went, no, no, no, that's that's absolutely not possible. Like you don't understand service delivery, you don't understand what I need. Now, what we have is we are delivering more physiotherapy and exercise-related activity programs than we ever had, because we are now providing a service to people through through, let's say, for example, Zoom. So let me just make kind of visualise that for you. So if you take a person with MS who was a wheelchair user who was living in the north of Donegal, okay, accessibility isn't really great in North Donegal, or in many areas in Ireland you don't have a lot of public transport that will be accessible. And you might have Mary who is living in an area where it's very difficult for her to get into her local community centre to access her physio class. Also, she might also be the only person who is living in that area, for example, who's a wheelchair user. So when she comes into a class, she's in a class with eight to ten other people who have various different levels of ability. Now, because we're putting a class online, we can have Mary, who's living in the north tip of Donegal, in with Joan or John or Cullum, who are in all different parts of Ireland, who are all wheelchair users, who all just have to come downstairs or come into their living room or come into their sitting room, turn on their computer and engage in a physio class with eight to ten other people who are all experiencing the same as they are. What I mean by that is maybe they are all either wheelchair users, they're all either rollator users, they're all actually dealing with spasticity or bladder and bowel issues. So we can now tailor make our classes to the population that we are supposed to be serving. And just to give you some sense of that, Declan, as well, from the feedback from people, because and this is where I like to, I suppose, really talk about that digital space and how it is so enabling. But also what people are saying on that is when Mary used to come in to Kildare or wherever she came in for to have that physio class, she was physically meeting with 10 other people. And you know what she was having? It was a cup of tea and a chat. She was having the cup and the tea in the chat either before the meeting, or ideally, you'd have your physio session and you'd have it after the meeting. Now that that you cannot replace. Now, I know you could sit there and say to me, but sure, you can sit and and and we could finish this conversation and have our cup of tea afterwards partially and whichever, but you know yourself, you know yourself, it's that personal connection. So to me, I can talk to you all day about the positives of how we are now delivering a physioclass to somebody who is living in West Cork or whichever, who really would have given up going to their physioclasses because fatigue is a is a huge symptom for people with MS. And what they were saying to us is, Oh, I have to get up, I have to go downstairs, I have to get ready, I have to get in my car, I have to drive for an hour to get to wherever it is that I'm going for my class. I'm exhausted by the time I get to my class. Whereas now I had somebody say to me the other day, they were saying, you know, Eva, please don't like, don't change the the online classes because I can get up, I can, I can go into my kitchen, I can I can be in my pajamas because there's nobody else in that room, in that virtual room, who's going to judge me, who's going to judge me for the fact that I'm in that room in my pajamas, because you know what? I didn't have the wherewithal. It took me everything it needed to get me to that actual class online, and they're saying, please don't change those. Yet at the same time, I could have somebody saying to me, Oh, but I really miss the physical cup of me. I miss that connection I had with people. So, so Declan, that for me is a perfect example of digital, how it enabled us to deliver services we couldn't even have dreamed of, how it's enabled us to get to people who never would have attended a class before, but also how it has, you know, resulted in some people who are not savvy, like they're not computer savvy. You know, like if you take my mom, for example, my mom does not understand that you and I now could be working here at this minute, we could be engaging. Like, she doesn't get she doesn't grasp, she doesn't she never went to Zoom or Teams or any of those things over COVID because because the computer technology is not her thing. She she can't understand why people sit on a train when she's coming up to Dublin to visit me, and they sit on a train and all they do is look down onto their phones and they have earphones in and they look at she's she's looking up going, is anyone going to talk to me? Like who's gonna talk? So you know so different, isn't it? Yeah, yes, and that's the generation we need to serve, and it's how we manage to do that by embracing technology, which to be honest, and and digital and all that kind of thing, which you know is not my skill, I'll admit that. And even if you talk to people in the community and voluntary sector, we're seen as you know, we're seen as the touchy-feely, oh well, it's all about being touchy-feely in our space and whatever. But yes, we are about service, we are about the person. We should be yes, because that's why we exist. That's why I, you know, that's why MS Ireland exists.

SPEAKER_01 16:53

That's right. And it's really lovely that though, you know, because I'm I'm always trying to come up with good examples where before you know we we entered uh before digital, like what we're doing now, even podcasting or chatting or on Zoom, except beforehand, there was such a disconnect, really, you know, a lost opportunity really to bring people with say who are all wheelchair users, right? Bring them all together. You don't have to travel six, seven hours across the Irish countryside to be together. And it really brings MS into people's homes, doesn't it? That's what digital has a label to do. And even to the physio side of things, it's um to be fair, I think that's actually got to be one of the big advantages because by the time you go to physio, get into the car and move around, and you're half exhausted by the time you arrive, and now you have to do some physio. Whereas at home you get up out of bed in your PJs, boom, it's happening straight away, which really helps.

SPEAKER_02 17:54

Yeah, even to bring in accessibility there though, definitely. So it's one thing as you as a person, what you have to navigate to get yourself out of bed into whatever mode of transport you're going to get, which again, just to highlight, there isn't a lot of public transport, accessible public transport if you're living in the back of the bonds. Okay, there isn't, right? That's the reality. That's the first thing. When you actually get to the hotel, or for example, if it's not the hotel, let's say it's the local community centre or whatever, the likelihood of that being accessible is not very complex.

SPEAKER_00 18:25

Is that a challenge?

SPEAKER_02 18:26

I'm ashamed to say, but it's not. Like there'll be a step going into the door. There they'll there won't potentially be an accessible toilet. Okay. So again, if you've left your house at whatever time in the morning to get to somewhere and you're doing your physio class, and then you're going to somewhere where, you know, you might say the hotel might say, Oh, of course, yeah, we have an accessible toilet and whatever. And then the next thing you realize, well, actually, they have an accessible toilet, but not for my power wheelchair. You know, so there are so many challenges and barriers for a person to just actually exist in the world that we exist in today. But digital, like digital can be so empowering from that point of view. There's absolutely no way for me there. You've mentioned podcasting, but the one thing actually I meant it, I meant to mention as well, Tekken, which is really interesting. Like pre-COVID, I think one of us owned a laptop in MS Ireland.

SPEAKER_00 19:21

Is that right? One amazing.

SPEAKER_02 19:23

That was me.

SPEAKER_00 19:24

Just one. One.

SPEAKER_02 19:25

Like, yeah. So we went to we went, you know, on a panic going, oh my god, we need to get to the local store to actually buy people. Like we were so fixated on a space, uh, you know, a building, an office, uh whichever. Like we hadn't even contemplated some of what other organizations had had done or where they were at, because again, it's not our priority. I know now you could argue with me around that saying, well, it should be, and it should be as much, but it wasn't then because our we were if we were getting fundraised income, the fundraised income was used to provide a service to Mary. Sorry, I use Mary Maloney for everything that's Mary's character, right? So so you know that's what we were about. We were about providing a service to somebody in the respite facility or providing the physical very physical service, yeah, yeah, service or or that face-to-face connection where my one of my community workers sat down with somebody who'd been recently diagnosed, and you're having the cup of tea and you're having those conversations and whichever. That's what it was all about. It was about that service delivery, and it was about providing money to provide that service. It wasn't around getting us the you know, the best CRM system or the most wonderful laptops or digitally enabling us to, but we were catapulted into that world, even even online services, our fundraising, for example. So if you take, for example, our fundraising, our all our fundraising is was physical. So here in Ireland, if you're doing your your your shopping at the weekend and you go to the again, I don't know, the Walmart or the stores. Super values, whichever it is, and somebody packs your bag at the end of the counter and you throw them a few pounds and whatever, sure. Like all those fundraising initiatives that that when you go to mass on a Sunday and you physically meet somebody at you know the front and there's a collection for MS Ireland or collection for a charity, that world was gone overnight because there was no somebody going to mass. There was nobody, you weren't allowed, you know, pack somebody's bag. So fundraising all went online. We were having a a virtual balloon race with no balloons, you know. So that's that was one of our first fundraising initiatives was the virtual balloon race.

SPEAKER_01 21:38

Hang on, sorry, sorry, yeah, the virtual balloon race. Tell me about tell me about that.

SPEAKER_02 21:42

So no balloons were harmed in in uh in the process. So basically you in the process, you bought a balloon, okay, yeah, a virtual balloon, which um on the morning of the the race, everyone's balloon was set off at the same time. So you could and Then you could actually, based on the weather conditions in Ireland, your balloon headed off and online I could watch my balloon wherever it went to, it might have burst in the first five minutes or it might have continued for the entire time. So I could watch some my father-in-law, who was in Perth in Western Australia, was watching his balloon go all through the counties in Ireland and where his balloon was versus where my balloon was, and my balloon had gone off in a tangent and whatever. And then you watch this balloon. And the idea was that we would have 10,000 balloons for a balloon for each person with multiple poses. That's lovely for each person. So you bought a balloon and you watched these balloons go through Ireland, and then whatever balloon got to from Mallon to Misenhead was the winner. But like can you imagine like that? That's so foreign from taking 20 people to a physical marathon in Dublin where 20 people are running the marathon for MS Ireland because they weren't able to do that. But you know what we had? We had one gentleman within the first two weeks of lockdown who ran um a marathon in his backyard.

SPEAKER_01 23:05

I think I seen that. I seen that on your socials. He ran it in his backyard. Amazing.

SPEAKER_02 23:13

Because he was there going, Well, I need to exercise. I want to, but you know, I he was he was always to be fair to me, he's been incredibly generous to people with MS and MS Ireland. Yeah, um so he did he did a MR thing in his backyard. It was only like we were literally only a hot few few weeks into COVID.

SPEAKER_01 23:29

Like it was incredible what people were doing.

SPEAKER_02 23:32

But do you know?

SPEAKER_01 23:33

Yeah. And you you know, on that, I mean, look, look, the the thing for me as well is that even that bit about seeing your balloon moving across Ireland and like even the even the digital enablement there to have that visibility and tracking and everything, people all over the world getting coming in on it. I really like that. Um, I was going to talk about uh a different myth as well, and this one's important um to me as well. It's one of my favourite ones, though. It's the it's about the the monk, the blind, the blindfolded monks and the elephant. So the idea is that the there's a a few monks, two, three monks are blindfolded, and they're asked to go into a cave and approach something, and guess what it is? And the monk, it's an elephant, but they don't know that. And the monk at the front feels the trunk and he says it's a snake, and the monk at the back feels the leg and says it's trunk of a tree, and the monk in the middle pushes on the on the main belly and says it seems like some kind of wall or or or sail, and then only when they step back and took off the blindfolds they could see that it's an elephant. But the beautiful thing about that myth and story is that um you can't always see um the big picture, and I think what digital helps do is it helps everybody get a bit more access to services and to understanding you know what the can you know what MS is and to understanding what the overall I mean it kind of makes them less invisible. That's how I see it in terms of digital. Is that something resonates with MS Ireland? Do you think?

SPEAKER_02 25:06

No, it's interesting actually. I I I really like that metaphor because I think it really captures a number of things for me. One, the complexity of MS, two, the invisibility of MS, because it's often called an invisible condition. Because for many people, um, you know, they see somebody, and because, for example, they don't have a rollator or they don't have a limp or whichever, whatever it is, they think, oh sure, that person is is is fine. What's wrong with them? They're they're you know, they they don't have they have MS butcher, you know, they don't understand it. Okay, so I suppose to me it's about the importance of people being seen and understood. And I I and I think the most important thing for me to say to anybody who's just kind of trying to get their head around MS, it's no two people experience MS in the same way. So it's like that blind man and the elephant. People might only experience MS in one way where they see the maybe the fatigue or it might be an immobility issue. So if it's visible, people understand it. You know, if somebody, if somebody approaches them and they have a roll it or they have a stick, okay, they then think, all right, okay, that person has more visible than that. Yes. Now, if then there's somebody in front of them and they're talking about the fact that they did the mini marathon at the weekend, or actually the marathon at the weekend for that matter, and whichever, and now they're talking about, you know, but my cognitive fog or the fact that pins and needles and whichever and that kind of stuff people don't grasp that, they're not, they find that quite difficult to understand. But one of the things I wanted to bring up here, which I think you're you'll like, is this concept of the uh misunderstood coffee shop. So MS understood coffee shop that we did. Okay. And I think you think you'll enjoy this as a as a as a concept. So this was where people with MS that we were hearing an awful lot from people with MS going, okay, nobody on nobody knows what MS is. So even when I got diagnosed myself, I had no idea what MS was, right? So I had to go to Google or whatever, or I thought a lot of people get it mixed up with uh motor neuron and various other different conditions. Okay, so and and a real thing for people with MS is my boss doesn't understand what MS is. You know, my family didn't know what it is. They had this, they had this perception that I was going to be in a wheelchair and whichever. So we we looked at this initiative whereby we took over a coffee shop. So it was actually um we we rented a space in the city centre of Dublin, and we just put under over the door MS understood. So nobody that like coffee shop, that's it. So anyone walking on the street just said, oh, a new coffee shop. Big sign outside coffee today, one euro um all day. Doesn't matter where you are, there's always going to be people that is gonna come in that door um because it's coffee for one euro, okay? But here's what we were trying to do. So the initiative was around trying to make people aware of some of the symptoms that people with MS live with on a daily basis. So when you walked in the door of the coffee shop, remember now this is just you walking in the door of a coffee shop to get your one euro coffee on the way to work, the ground immediately under your feet was uneven. So you walked in and you you you kind of went like this because you're like, oh, right, okay, whatever. Because it was all uneven. You walked up to the counter and you looked at the counter and you were looking at your mochas and your lattice, and next thing it went all blurry. Oh, and and and you can see people because we were videoing it, and you can see people and they're going, What's going on? And then they go, Okay, let's okay, no, no, no, maybe whichever. The actual counter started, so lots of people would have their hand on the counter while they're looking up at the at the place started to move. Right, but then you're there kind of going, right, okay. So you you and you can see people, they're just going, and then you can see some people going, Jesus, this is disorientating. Isn't a great job, is it?

SPEAKER_01 29:12

This this place will never no wonder, no wonder it's one one euro.

SPEAKER_02 29:16

Exactly. Then you give them their cup of coffee, and the coffee mug had the tiniest little area for you to put your you couldn't put your finger in it, so it's really awkward. When you bought your suite, it was wrapped four or five times. So, what we were trying to get across was a person with MS visual disturbances. When they're walking, the ground feels unstable under them. When they're trying to hold a coffee cup, it's not easy. When they're trying to open a wrapper, it's like opening a wrapper if you have a pair of gloves on, it's it's not so all of the experience. Purity vision vision, the optic neuritis that people experience often when when they first have um uh an experience of a symptom of MS. So we we basically filmed this, and it was without a shadow of a doubt. Now, the most important thing for me I should say is that we it wasn't a this wasn't gimmicky, okay. This was we had people with MS involved in the entire process so that they would show no, that's the symptom I want people to see. So when you were pulling the chair out to sit in it, like the chair would normally come out. No, the chair was so heavy, like so, so heavy, because that's how people experience isn't that a lovely idea?

SPEAKER_01 30:28

That's a very clever idea.

SPEAKER_02 30:30

The the I suppose the learnings from it then, though, were the key thing for me was what people with MS said was I brought my partner down, and he or she walked in and experienced something that I couldn't explain to them.

SPEAKER_01 30:44

So you you know what you're you're kind of removing the blindfolds, aren't you? Absolutely, absolutely for someone who may not have actually seen the fact that to lift a cup of coffee or a cup of tea is effort. It's like I have to put energy into that, and then to move me chair, I I I'm so tired or I'm so weak. It's a very nice idea. Is that still going?

SPEAKER_02 31:08

That was it just a once-off campaign thing, was it was a pop-up shop for a day. Okay, so it was a pop-up shop for a day. Um, and then actually, what was the only negative feedback? The only negative feedback we got from people with MSs, that's in Dublin. I can't bring my actually put it onto a bus, a mobile bus, and we took it to different cities in Ireland where we we pulled up in our like a really popular space, say a main street in Limerick City, for example, and we said, you know, we'll be here for a day. Come on in. Um, if you want to, as a person with MS, come in, or you want to bring your partner or your loved one, come in and experience it. And um it's a great idea, even.

SPEAKER_01 31:49

It's also fundraising.

SPEAKER_02 31:51

Yeah.

SPEAKER_01 31:51

Well, fundraising, but it's also a good idea for employers as well. Like, you know, if you have employers to be more aware of what it's like for their staff with MS to work there, I really like that. Um, and that whole idea, yeah. And you know what? The the the there was also um like I did I think it's very clever by the way, MS understood, miss misunderstood.

SPEAKER_02 32:12

Yeah, because again, to somebody not in the MS world, yeah, you don't you don't see the M, you just say misunderstood. That's all you see, yeah. So it's examples like that, and I think something you said earlier as well, like if you if you take the podcast like now or the MSME blogs that we do now, okay, it's about people sharing how it is for them to the world they're in, isn't it?

SPEAKER_01 32:39

But it's actually about if I was to go further and say it's kind of about people helping others understand what the elephant is and and what's involved, you know, and you're you're able to share like digital allows you that platform, that ability to and and I would probably say it it would bring people, you know, like if you have a more awareness, then you can reach common understanding better, right? Because you have uh and and what and for me, one of the things that struck me about MS is uh indeed it is something I didn't know much about either, and you think about physical, but then you don't think about so gridly, you don't think about the non-physical uh symptoms as well and stuff.

SPEAKER_02 33:22

So that was um no, I think that was a lovely and I think if you see there's there's nothing more powerful than than a person with MS writing about their story, like you can say something like fatigue, for example, okay, and everyone doesn't matter who you are, will go, Oh yeah, god, I was very tired getting out of bed this morning, or you know, they'll say, Yeah, I was out this weekend and I'm really tired. But it's when you read a person's blog where they're explaining the sheer challenge they have of getting out of bed in the morning. And I'm gonna use one one descriptor that a person had. She said, My fatigue isn't tiredness, it's like someone pulled the plug out of my soul. Now, if if if that isn't like that's not, oh geez, it was difficult for me to get out of the bed this morning and be on this podcast with you and the other half the other side of the world. It's a different level. But if you just say fatigue as a symptom, yes, okay, people will go, I sure, yeah. I'm tired. Like I'm busy, I've got four kids and a dog and whatever, my life is busy, and you always compare yourself to someone else. But it's those stories that we can share through digital. And the other thing I find with that as well is people can engage with those stories as much or as little as they want because they are online or they're on the website and whatever. So you can you can tap in and read and and then take yourself away from it because it's too much now.

SPEAKER_01 34:54

Yeah, no, I I that's actually quite nice as well, because um, to me, like I didn't know there was many, like there's a lot of different aspects to MS itself as it as a disease and the services MS Ireland offers, but even that um with the digital aspect of it, just having that um you know um access to um you people sharing stories. That's why I love stories because um stories, uh what I often say about stories is you know, they kind of often remind you of things that you never knew. It's that kind of feeling when you hear a story and someone connects in with your the with the shin with that kind of heartfelt, you start to actually awaken within yourself these memories or these um uh perceptions that uh were were really buried away. So I can imagine it's a big aspect. I was going to talk about the last piece um of our of our overall um uh discussion here today, Ava, is around um catalyst. So one of the third pillars that I like to use in the digital mythology storytelling framework is catalyst, which is about how do you move people and how do you inspire people. And I like this concept of um there's a lot there's another lovely story about a father and son, and that they're out in the woods and they're trying to build um um they're trying to build some kind of uh structure, and a few branches, sticks go down, and the father explains to the son that if you stand on that, it's gonna crack under your feet, so put more sticks and more sticks and more branches, and eventually it has a lot of structure and strength, especially given that the sticks and branches are their own unique shape, they have their own unique texture, and by getting that diversity of structure underneath your feet, it actually makes it um far more um strengthened. And that's a lovely metaphor as well. I like to use when it comes to digital and empowering the community to connect. Can you give me, you know, just talk a little bit about um S Ireland and obviously how important community is, I imagine, and how digital helped in terms of you know enhance that reach into the community and help bring community together?

SPEAKER_02 37:13

Yeah, I I I mean there's no doubt about it. Community is the key, even when we we talked about it earlier and we talked about how empowering digital was in relation to the provision of physio. People have still want the community though, you know, and they want that to they want to know people in the community, they want to engage with people in the community. But there's some really, I suppose for me, what came to mind around that would be some really powerful global initiatives. So, for example, if you take the May 50K, so every May uh there's a fundraising initiative who was actually born in Australia, um, but around the world now are using it. And it's uh how I would look at that is I would say, and and a lot of the the funds that are raised by the way for the May 50K is predominantly for research, so it's for the provision of research. Okay, so it's that hope piece. So if you think of that then and link it back to your story, so basically for me, every step in that May 50K is the twig, you know, it's that shared effort to build whether it's strength, the visibility, the hope for the MS community, that's what it's about. So together, we're either going to walk, we're going to go in our wheelchair, um, we're going to swim, we're going to do whatever it is to work together as a community and a global community to raise money to try and see if ultimately a cure can be found for MS. So that now to me is the best example, for example, of community. I mean, and that's talking about that's a worldwide community, born, as I said, in Australia, a fundraising initiative that was born in Australia, that now Australia is saying, okay, to the MS organizations because MS Ireland is part of what's called the Multiple Sclerosis International Federation. So we're one organization, and then all our sister organizations around the world are part of that because we are sharing. So yesterday, for example, we had a board meeting and Multiple Scroosis International Federation, where there are chief executives and people from all over the world in a room sharing experiences, learning from each other, you know, people who have people who in countries which are, you know, raising multi, multi-millions for research, versus countries who barely have an MS organization, who who are only starting, who are only starting to build a community, who, for example, you know, and you have to be mindful of all this because they haven't necessarily embraced technology as of yet, and they're just even starting. So that's one initiative that came to mind, and the other one was World MS Day. So on the 30th of May every year, um, I suppose is when the voices of people with MS from all over the world come together um and connect basically to not have this isolation piece. So we all come together. So it's kind of um uh a modern version of your of your um your story, I think. So we're we're I suppose we're rising with the shared stories, that solidarity, that action for the millions of people that have MS, but we're coming together globally on a day to actually express that and to say we're stronger together and we are building, you know. So they're they're too exposed that they're two uh examples that really came to mind of a community, but a global and international community coming together.

SPEAKER_01 40:39

Um very empowering. Yeah, it also opens my mind to the fact that it's not just the people suffering from MS been coming together, it's the people, the scientists, you know, the the fundraisers, the corporations, the social responsibility, these people leading out this change can collaborate internationally. And that's one fantastic thing, obviously, about digital. So, you know what I mean? Like there's part of digital that the MS people with MS experience, but then there's the the part they may be not fully aware of is the research and bringing together collaborative uh fundraising ideas, etc. And the world's gone so global now, you know, there's almost everybody within every country would know somebody who's connected to MS. Absolutely.

SPEAKER_02 41:26

And if they don't, somebody will know somebody that we can get the connection for them because it's it's so small now. You know, it's it's literally a it's a click away going, okay. I know this person here who might be able to make the connection for them. And it's and it is, I suppose the whole thing for me is it's it's it's a movement. What what we're involved with is it's a movement, you know, but it's not my movement. Do you know it's it's people with MS. It's it's all of their collectively, it's their movement, and that for me is what makes the difference. And you know, there's things you have to do and and and do as MS Ireland in Ireland, and then there's the bigger picture for people with MS. There's the bigger people for people with MS all over the world. So it's you know, it's making representation in Ireland for the person with MS who lives in in Cork or Kerry, but then it's making making representation for the person who lives in a country where they have no access to MS medication. You know, and so so we need to be we need to be empowering that entire movement. We need to be sharing stories, we need to be engaging with each other, we need to be learning from each other, we need to be giving, you know, resources to each other to ensure that I suppose to ensure that we can make a difference.

SPEAKER_01 42:38

You know, I'm sure when people connecting with people in Canada or Australia or you know, parts of South Africa or whatever it is in the world, they realize actually I'm not so alone here, right? Even it transcends cultures, it transcends languages, it's just it's a very human um enterprise itself, MS, which which I love how digital can do that because sometimes you know um we get tucked away in our own little world, our own little bubble, and we think it's this it's an MS Ireland challenge, and it's but then if you go to MS UK or MS Australia, it's like oh yes, similar type, similar type challenges there. So that's a that's a wonderful, you know, broad uh review as in of how digital impacts and enables MS. I guess uh a few takeaways, Ava. Um I'd like to just you know, for our audience listening, you know, digital. We had Saint Bridget of County Kildare and the previous Celtic goddess about making compassion accessible and handing it out, making it within reach for everybody. I see digital is a amazing for doing that. We have the blind monks and the elephant in terms of how digital can help people see different parts of MS that they may not have been aware of, it just kind of removes the blindfolds and um. Helps people share, you know, you don't have to have the same symptoms as me, as but I can connect in and understand what you're going through. And then the third is you know the bundle of sticks, which I like is that individualism, people's own individual journeys all meshing on top of each other to make us stronger and uh bring us together. So, yeah, what would be the they're meat there for me? That's a wonderful way of using myth to express the digital side. How about yourself in terms of takeaways for people listening?

SPEAKER_02 44:30

Okay, and it's it's interesting, Deccan, because even when you first approached me about this, I was a little bit challenged by how we were going to use myth and the whole digital space. And I and I said to you very openly, I'm there going, Oh god, like the digital isn't even my my space. Do you know what I mean? For me to talk about, but yeah, but you can see, like, and the I if we look at the first one, like digital can expand your services, okay. Like we we can see that I've talked about it now, even quite passionately, about how I feel digital can expand your services, but it cannot replace presence for me and that presence between people and that connection with people. So we have to be mindful of that, okay. I suppose that's what I'm saying. And it reminds me that that that systems without, and we go back to this heart and mind piece, systems without the heart lose their purpose, okay? So we have to we have to be mindful of empathy and dignity at the center of every service still. So no matter what we bring or what we put in place from the point of view of the technology to enable the service to happen, it's still about the person. We're not simply here to provide a service and tick a box, we're here to walk with the person with MS. We're here to recognize each person's humanity, not just their diagnosis. If there's two things I hear from people with MS, the most often it is one, I have MS, but it doesn't have me. I hear that all the time from people. And the other thing I hear, which I think is very powerful, is I am more than my diagnosis of MS. Because what people feel is that once you get a diagnosis, that's how people see you. They see you as, oh, that's the girl, that's the whoever who has MS. And it's like, hold on a minute, I'm 50 million things, as well as the fact that I have an MS diagnosis. So they're the two things I suppose that's very, very clear for me in relation to what we'll say, we'll say the first piece. And then if we talk about, I suppose, the elephant um and and what we're talking about in relation to this that stories, how important stories are. So one piece of a jigsaw, again, I go back to the learning of no two MS journeys are the same. Okay, no two are. That's why it's important that we amplify individual stories through the MSME blog, our podcasts, again, all digital, peer support groups, awareness campaigns. Okay. We complement the statistic that won 10,000 with the lived experience, right? So that's what we should be doing. So that's uh, I suppose something that we have to learn how to do that. Ensuring that everything around any policies, any planning, any understanding of people's MS reflects the absolute complexity. And we talked about that about the complexity of MS and how important it is to ensure that we're we we are showing that. And then I suppose the last one for me then is real change takes a lot of people, like a lot of people. Okay. So it's not about what I can do, it's not about what one of my staff team can do, it's about a shared commitment. It's our branches, our volunteers, our board, our fundraisers, our service users. Every one of those, they're not they're not bystanders, you know, bystanders. They are they are the people who make the difference. Are they the co-creators, whatever word you want to? We can't do it. So make 50k.

SPEAKER_00 48:03

Yeah, yeah.

SPEAKER_02 48:04

All of us sticks. The sticks, exactly. So make 50k, the sticks, renew MS Ireland, our campaigns for developing the care center and developing a new facility in Limerick, our advocacy work, develop the new centres. Progress only happens when all the sticks come together, when all of them are, you know, working towards uh like one one one goal, which is everything to do with and ensuring that we are providing the right services for people with MS.

SPEAKER_01 48:35

Because you know, my my memories of MS and all that was when my dad was suffering from MS that was before COVID hit, and there wasn't much digital or anything really going on compared to what there is now. But also, I think there was a shift in the overall industry after COVID as well, where people realized fundraising uh is actually um uh something that uh you know there like there's those parts of it that was immensely um suffered for a while. There was this really significant drop, and then after a while, it hopefully it'll continue that way, but it got a bit better. But yeah, I do like that idea about um systems can't replace people either, and replaced uh what did you say was the word you used, um present. So I really like that. So systems cannot replace present. Dave, I've really enjoyed chatting to you about it. Um, and thank you for sharing your you know your insights on obviously your your real world experience. I think that concept you used earlier, you mentioned lived experience, you know. So like um digital, digital, yes, it helps uh reach others, it helps bring people together, it helps keep everybody um uh you know, breaks down the stigma and all these other things, and it gives people awareness, but um it also can be um you know it's it it's only successful when there's people like yourself and working for your organization and volunteers and community members putting in their time and energy into it, right? It just systems can't do that, systems are there to enable effort and to enable outcomes. It still comes down to the people.

SPEAKER_02 50:08

Yeah, that's that's clear, yeah.

SPEAKER_01 50:12

And any any more, uh any final message then before we finish up, Ava?

SPEAKER_02 50:17

Um oh well, I was actually, if you don't mind, I was going to finish with uh a quote, and the reason why I was is because uh I actually just really I really like this John Wesley quote, and I think it's it's partly why we do what we do, but it's it's around do all the good you can by all the means you can, in all the ways you can, in all the places you can, at all the times you can, to all the people you can, as long as ever you can.

SPEAKER_01 50:46

Wow.

SPEAKER_02 50:46

That's me, John.

SPEAKER_01 50:48

Isn't that lovely? What a lovely way to end it. Yeah, it's uh it's a lovely quote, isn't it? It's very reflective of what you do and uh what MS Ireland does, and what people who have you know that empathy and that compassion. Lovely quote. Well, thanks for ending on that note, Avon. Lovely having you as a guest.

SPEAKER_02 51:10

Pleasure.

SPEAKER_01 51:11

Thank you so much, and thanks to the audience for listening.