Inspiring Lives: Ian Heydon

Nicola: Welcome to the MS Podcast Series. This is our Inspiring Live series. I'm Nicola Graham and today I'm talking with Ian Hayes. Ian's a bit of a legend to me. He's an award winning writer, lots of credits, radio shows, TV, etc. His radio show credits include things like The Samuel Pepys Show, The Year My Country Broke, I love this title, How Green Was My Cactus, and his television credits include Kingswood Country, Home Sweet Home, Graham Kennedy's World of Comedy, lots more.

He's written a beautiful travel book called The Small Guide to a Big Country. I notice, Ian, as well, you've got a project called The Weekend Wine Warrior, that just sounds like an amazing project, and you're definitely mixing up a bit of business and pleasure there.

Ian: I have, yes. Yes, I like a wine and I like to write.

Nicola: And I love the name of your memoir, Ian, as well the Why Don't You Get a Real Job? I'm definitely hearing that's a bit of a misspent youth front in a band and a bit of influence from your mum, I think.

Ian: Yes, I used to tell my parents I wanted to be an artist and they said an artist or a writer has more meal times than meals, which was a bit of a red rag to a bull for me, so I became a painter and a writer.

Nicola: It's great to hear that you took their advice. Ian came to our attention at Multiple Sclerosis Ltd recently when he entered the International Film Festival Focus on Ability. He entered a short film called What's in a Name? And it was just brilliant. It had us all laughing. But it also delivered a really powerful MS message, and it went viral within our company really quickly. So, congratulations on that film, Ian. We love it.

Ian: Oh, thank you very much. It was fun to make.

Nicola: He did a great job. And I advise any of our listeners listening to go have a look at that. So, it's the International Film Festival Focus on Ability.

Ian was diagnosed in 2010. And I'm talking today with Ian about how he manages, what's inspired him and the approach he's taken to living with MS. And this, this podcast is likely to be a bit irreverent at times, definitely a little bit rude, and we may not be completely politically correct. I'm not sure where it's going to go. We'll find out.

Ian: We'll be politically correct, don't worry.

Nicola: We will be politically correct, I'm sure. So, I'm going to start with my first question and it is a bit irreverent. How do you manage now that you can no longer mow lawns and clean out gutters?

Ian: I guess it's a positive because I don't have to get up a ladder anymore, but it's funny you mention gutters because that's how I broke the news to my son that I had MS, I came home, and I said the doctor has some good news and bad news.

The good news is I don't have to clean out gutters, and the bad news is you do. So, he did that, and then he left home, and I had to invent another way of mowing lawns and I write wedding speeches now, and with the money from that I pay for little John and Joe to move around and do my garden.

Nicola: So, I guess you're focusing on what you can do rather than what you can't do, and it sounds like you're offloading all those jobs that you didn't like doing anyway, Ian.

Ian: Ah, yeah. I guess I was in a position where, I know a lot of people would, have to consider downsizing when you've got a fairly large garden, and you can't do those things again. Yeah, so, but that was the thing and because I'm a writer, I invented a little way of two hours a week writing that pays for two hours a week gardening.

Nicola: What could you not live without, and why?

Ian: I can't live without doing something every day, writing, working. I couldn't spend the whole day just sitting and watching television. So, writing and working, and we mentioned wine earlier. I'd like at the end of the day, to have a glass of wine and that mentally tells me I'm unwinding, I don't have to think anymore, I can have a chat, I can watch a movie, do whatever.

And my lovely wife, Annie. I couldn't live without her, she's terrific. Apart from being good fun and good company she looks after me as well.

Nicola: And I think when you touch on that with Annie, Ian that's a key bit about our quality of life, isn't it, is our relationships. And I think that's often a little bit overlooked, but it's such a rich, purposeful, meaningful, important part of our life, isn't it?

So nice to hear you giving a global shout out of your appreciation to Annie.

Ian: Oh, yes. And I think it's important to like your own company as well. And I know there are people who aren't good at that, but I've always been able to amuse myself and I don't feel lonely even when I'm alone.

Nicola: Yeah, I agree with you.

I think that's really powerful, isn't it, to enjoy your own company as well as that of others.

Ian: Yeah, and technology is wonderful. You know, you can Zoom people or chat to people. I speak to the kids even though they're in other states most days. Before this technology, it would have been a fairly lonely little place to be, MS, I think.

Nicola: And I know as we're talking, our listeners can't see, they can only hear, but I can see that you're sitting in a gallery of paintings, which I know is actually your work. So painting is obviously a key part of what you do as well, Ian.

Ian: I dabble. Yeah, I enjoy painting. It's almost now that I'm sort of semi retired I've become a big kid again. I like painting, I like writing and I like playing piano. And those three things you can do sitting. So, the wheelchair is handy for that. I can zip about and change one hobby for another.

Nicola: Sounds good. Where do you draw your inspiration from, Ian.

Ian: Inspiration for writing, or for living, I think.

For writing, I don't know where that comes from. It's from a little part of the brain, I think, called the subconscious. I go to bed without an idea, and I wake up with one. And I thank him every day. Is inspiration the right word for living? I don't think so.

Nicola: What would you use? What's your word?

Ian: Strategy. Creativity. Like, when I found, when I worked out that it was very hard to do up buttons, I stopped wearing clothes that had buttons and zips. There's a saying that, you know, it's like trying to do up buttons with boxing gloves on. Well, I don't I have that problem because I don't have buttons and I wear happy pants and slip on shirts and yeah, so there's that side.

When there's an irritation, I'll get rid of it. Well, I don't think that's inspirational, that's creativity and strategy.

Nicola: Ian what's helped you get through? What's helped you to manage and to survive and thrive?

Ian: That's a difficult question for me because I think it's the way I've always approached life.

I don't think things have changed that much that. As you said you deal with what you can do, not what you can't do. Yes, it was very frustrating when I started to stop walking, but there are ways and means you get a cane, you get a wheelchair, you get a walker, whatever that is, and then suddenly your world's a little different, but you still carry on.

It's far better to wake up than not, I feel, and so I might as well have a good time once I've done it.

Nicola: You seem to have quite a natural Positive attitude.

Ian: Yeah, and I think I probably had that before MS, so it's probably just part of who I am. And don't get me wrong, I don't like the disease. We're not great mates but I probably, you know, I've heard people say, Oh, I wouldn't change a thing.

Well, I probably would. I'd love to go dancing, but it's not on the cards, and I've never had to dance before, so I've got a memory. You know, there are still a lot of things you can do. That probably don't realize before you get into this situation.

Nicola: Well, we were talking earlier and you were covering a few things that you are up to, which as you say you can do sitting down, but I also note you are taking up 10 pin bowling and that's well, so you obviously stretch your boundaries a bit.

Ian: Yeah. And that was just a simple thought about what sports can you do in a wheelchair. I suppose you could play darts, but you've got to throw too high, and I suppose you could do other things. But I thought, well, there's nothing wrong with, if you've got a good right arm, why not bowl a bowling ball down.

So yeah, I bowl once a week now. I admire people who can who have a different disability and can do things like wheelchair basketball or wheelchair rugby, but I'm too old for that, but I also don't have the upper dexterity to swing myself around like that. There are squillions of people worse off than me, you know.

Well, an example, when I was diagnosed, I rang my best mate and said, Oh, I've been diagnosed with MS. And he said, how long have you got? And I went, well, as long as I've always had. It's just, there's a different journey getting there now. And he thought MS was a motor neurone disease, which can be. If you want an example of something far worse than what I've got that's one.

So, I don't think much about how lucky I am. I guess that I do feel lucky sometimes, just that I can get out and do things and life hasn't changed that much. I can still enjoy a meal or a movie or, you know, go out and do things. It's just from a different angle now. The other thing is, I'm really glad that I did lots of things before I got MS.

So, I can, I've got memories of scuba diving or, you know, shooting pool or playing rugby or whatever. I'm at a stage now where I'm not really missing out on a lot.

Nicola: Yeah, and it sounds like you're enjoying and taking the time to enjoy. the meal and smelling the roses and a simpler life in some respects but with a deeper enjoyment at times.

I don't know if I'm putting words into your mouth there Ian, but that's the sense that I get.

Ian: Well, you did in a way, but I think you just take things a lot slower because you can. So, if I go to an art gallery and I'm in my wheelchair, I'll park myself in front of a great painting and pull it apart and look at it for ages. Rather than other people who just move on and go, yeah, that was nice, what's next? So, you know, even when I go out to the garden, if there's a flower, I could look at it for ages and appreciate it rather than pass through the garden to get from A to B. I don't know, it's a weird thing. MS.

Nicola: It's sounding very zen, Ian.

Ian: Oh, never thought of that. It's a good word in scrabble.

Nicola: It is. Anything with a Z is good, isn't it?

Ian: Oh, it is, yeah. You mentioned that little video I made for Focus on Ability. It was all about losing words and it was set at a scrabble board. That was the location. And, if you recall, there was a word in there. Atychiphobia, which is a fear of failure. And I had to learn all these words because the whole video was about how we people with MS sometimes lose words and can't think of the right word to use. So, it's a roundabout thing, but I play words with friends in scrabble because it, oh, I think it helps those little neurons pass the messages along to try and remember what the word is.

Nicola: Well, I enjoy a scrabble or a crossword myself, because it just allows your mind to still a little bit, and just to focus on that one thing for a while.

Ian: It's a weird thing. You do, I'm going back to a previous question about, you know, what do I miss? I miss being able to read a book because MS, short term memory, doesn't let me remember what was on the page before once I've turned it.

So, I love words but the weird thing is as Well, I'm not a neurologist, but I find it strange that I can create words, and I can remember things from 50 years ago if I have to, but yesterday, what I had for dinner, who won the footy, nah. So, you know, it's not quite hiding your own easter eggs, but it's close.

Nicola: Well, I was going to ask you what you miss most that MS has taken away, and if MS has given you anything in return, Ian?

Ian: I don't think about what it's taken away. It's taken away mobility, it's taken away cognitive things. Oh, some of the issues, there's a whole lot of things that MS serves up at you. What has it given me? I've met people I wouldn't have met otherwise.

I've met you. I used to be a part of an international MS forum, and when I went to England last, I had dinner in Dubai with a fellow MSer, and lunch in London with a couple, and that was although we only had MS in common, we didn't talk MS, if you know what I mean. It gave us a platform to explore each other's minds and so I've met lots of people through that.

You know, I miss driving, I miss walking, I miss running but not missing it in that it doesn't depress me.

Nicola: Yeah, so you're able to, to miss it, but you've got a level of acceptance about it.

Ian: Yeah, I don't sit there all jealous of people walking past me but if I am out and about, I sometimes look in, in a window and see a reflection of me in a wheelchair, I go, oh my God, I'm in a wheelchair.

You know you're actually in it. It's a part of who you are. It's how you get about. You don't think about it. I would have to say take it in your stride, but that would be a bad pun, wouldn't it?

Nicola: Yeah, it's a little bit off, Ian, but it's a little bit off.

Ian: Oh, that's a positive. I'm allowed to make off jokes.

Nicola: Yeah, you can get away with stuff, perhaps, that you perhaps couldn't get away with before. MS.

Ian: Oh, absolutely. It's a weird thing. I've got a pet hate of the word disability. Like, a disabled parking place means they've got a barrier and I can't get in. Or a disabled toilet means they haven't done the plumbing.

So, I like words like accessible. If it's just me and others, I'll make fun of it and think of another word for it. That's only the inner circle we're allowed to make those sorts of jokes. One of the great things I've found over the last 10 years is the acceptance of disability in the community.

And whether that's through NDIS or just, I don't know, things like Paralympics or whatever. It doesn't seem as though somebody getting around on wheels is unusual anymore. And maybe it's just people getting out and about and accessibility. You know, restaurants, cinemas, whatever. So suddenly, it's not as though you're that different.

In fact, I don't feel different and I don't I think I get treated differently. Occasionally somebody will talk over the top of my head to my wife thinking I can't listen or can't hear or whatever. That's very rare these days.

Nicola: Ian, can you share what lessons you've learnt about living a good life whilst having MS?

Ian: Oh, I think it's very similar to living a good life without MS. It's a cliché, carpe diem, seize the day. And make the most of whatever, you know, your day is. I think I mentioned an author Mitch Albom, and the book was Tuesdays with Morrie. It's about Morrie Schwartz, who had motor neurone disease, and it was only after diagnosis that he learned how to live, how to really grasp the most out of every day, and I think a lot of people miss out on doing that.

Sometimes you need a little shake up to go, oh, oh, I am mortal and how do I make the most of the moment? Nothing wrong with doing nothing either, but not all day. One of the things that Morrie taught me was after the death of my best mate a couple of years ago, and Morrie said that death ends of life but not a relationship.

And that was, you know, I think of him every day, so I've still got a relationship with him. And I think that's the way you should look at life, that, yep, I'm afraid we're all going to die someday, but until we get there, make the most of it.

Nicola: That mortality perspective can be really powerful, can't it?

Ian: I think so. You don't think about it all the time, but once you realize that, oh, I'm not here forever, well in that case, I'm here for a good time. I don't want to go into religion. I might come back as an ant. I don't know. But all we know is that we're here, so do something with it. And that's something like me just playing with the grandkids or, you know, just enjoying the sunset or enjoying music, whatever.

Doesn't mean you have to actually produce anything or do anything and or be the best company you can be.

Nicola: That's a lovely idea to be the best company that you can be. And it sounds a lot like you're talking about being really present in the moment and really enjoying what you're doing right now.

Ian: Yeah, well, we're having a chat right now. I'm enjoying that.

Nicola: I'm enjoying it too. I hope our listeners are enjoying it.

Ian: Oh yes, forgot about that. We were just having a chat with our listeners.

Nicola: I think there is a lot more enjoyment to be had when you're really focusing and enjoying where you are right now in the moment.

Ian: Absolutely. And there is another saying that you don't get MS until you get MS. And there's a lot of truth in that, sir. I don't bore people with it. My wife knows a fair bit about it because she sees things that other people don't. We all have our privacy issues and most people don't sort of turn up at a dinner party and go, Oh, you should have seen the terrible thing, you know, or whinge away and you'll be able to enjoy.

It doesn't matter who you are. So, that's just me. You know, I mentioned going to an art gallery is a lot more fun in a wheelchair for me, because you've got all the time. You get a seat, and you get to take your time, and you get good parking. And when I was diagnosed, we did a bucket list trip to England and Europe.

And took our then 15 year old daughter, and we went to the Louvre, and the room with the Mona Lisa was absolutely chock full of people. But they have a little special entrance for people in wheelchairs that take you right in front of the Mona Lisa, in front of all the other people. And our daughter pushed mother out of the way and went, I'll take you!

So, that's the only time she's used disability to her advantage. That was a little perk.

Nicola: Well, that's a very privileged position to be sitting at the front, at the Louvre, looking at the Mona Lisa, because people really do sit there for a while, don't they?

Ian: Yeah, and you know, it's only about the size of a tea towel.

We try and do things, we look for things that we can do.

Nicola: Yeah, and I think that's a great attitude, isn't it? Is keeping that focus on what you can do, and then thoroughly enjoying what you are doing.

Ian: I think it's becoming aware of what you can't do. Like, I can't go to a wedding now because there's cross conversations, new people to meet, music in the background, and suddenly I have an MS meltdown because I'm not focusing on one particular thing.

I'm not going to my school reunion this year for the same reason. They're rigging up a Zoom so I can say, hello. So, there are lots of ways of getting around it.

Nicola: I think school reunions are very tricky things to navigate at the best of times though, aren't they?

Ian: I think so, yeah. I missed the last one as well because of MS and I had a phone call from a mate of mine who rang me from the reunion, he said. It's a good thing you're not here, it's full of old people. So, I can still remain young in my head, I think that's also important. You don't have to grow up. You can still stay young in your head. You still got to pay the bills and do responsible things, but there's nothing wrong with digging down and finding that little child that used to be there.

Nicola: Staying young at heart.

Ian: Yes, I try to be, yeah.

Nicola: Thank you so much for chatting with us today, Ian, I really appreciate that. It's been really lovely to meet you and share some thoughts on how to live with MS.

Ian: Well, and nice chatting with you too. Thank you very much.

Nicola: Thanks, Ian. and thanks to our listeners today we'd, we'd love to hear from you.

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