When you work with words for a living, what happens when you are diagnosed with MS? A disability which amongst other things affects your memory. Peta sits down with comedy writer Ian Heydon to discuss his MS, understand how he has coped and how he has channelled his creativity into MS education.
Connect with Ian:
Website: https://www.msingabout.com.au
MSing Podcast: https://open.spotify.com/show/5Hg3QBJ8RBy4OGdIIocU9P
Ian's short film that won at the Ability Fest https://youtu.be/1MGq_DGoAi4?feature=shared
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
Peta [00:00:02] Hello and welcome to the I Can't Stand Podcast, the podcast answering your questions about what life is like when you have a disability. My name's Peta. I have cerebral palsy and I'm your host. This week I have Ian Heydon on the podcast. Ian is a comedy writer, a past travel agent, and also someone who lives with M.S.. I really enjoyed this frank and honest conversation that Ian and I had, and I hope you do too. So without any further ado, here's Ian Heydon.
Ian [00:00:47] My name is Ian Heydon. I used to be a comedy writer. I am still comedy writer, but I was diagnosed with multiple sclerosis. Let me think 14 years ago. I'm now 69 and when I was diagnosed, I was the wrong gender, the wrong age. Because most people who get it, the female in their 20s and 30s.
Peta [00:01:09] Well, I'm sure we'll get into the diagnosis process and all that involved. And I've read many things about your story and and it's a really interesting story. But before we get to that, I want to start closer to the beginning of your life, your comedy writing career. From where I'm sitting, it's quite an unusual choice. How does one decide to become a comedy writer?
Ian [00:01:35] Inadvertently, I sort of have rehearsed this answer because I did an interview with a guy called Julian Morrow on ABC, and the segment was what was the Year That Changed Your Life? So I had to think a bit on that. And the year was 1978, and I just got my Bachelor of Arts and was going to do a dip ed to become a teacher. And I took a gap year. And during that gap year, I went to see the recording of a sketch show, channel seven called The Naked Vicar Show. And I just loved the fact that there were Australian writers, Australian performers. I just fell in love with the show. And then I went overseas for six months backpacking around Europe. And while I was there, I went to the London Palladium and saw The Two Ronnies and the head writers like John Cleese and Spike Milligan and all these people. And I was going, yep, I'm in love with that. That's what I want to do. And the third thing that happened that year happened on New Year's Eve. I met my wife Annie and that's 44 years ago, is still together, happy. And she said she would support me to become a writer. But six months, exactly after we were married, I sold a script and it was to the people who were making The Naked Vicar Show two years before. So I got the same actors, the same writer, the same floor manager, except I was in the green room and out in the audience. It was terrific. It just went from there for you know what was over ten years of writing comedy. At that time and then I went into production direction. And and this is another interesting thing. I took another three gap years or three years gap and went to live in Vanuatu for a while because I decided to have my retirement years. I'm in my 40s so I could still muck around with the kids, play footy, play cricket, go scuba diving, do all that. And then I came back and opened a travel agency and I'm so glad I had the retirement then, because I couldn't do all those things now.
Peta [00:03:49] I want to talk more deeply about your writing process, but as a disabled person, it would be remiss of me not to chat to you about disability representation. I know you yourself are a disabled person, and I'd love to hear your insights on what you think disability representation is like. Or let's face it, the lack of disability representation even today in media, in television and entertainment. How do you view now that you're a disabled person and has that changed since your diagnosis?
Ian [00:04:25] Yeah. Can can I go back to 1978 again? Disability didn't exist back then as you. You would not be aware it was not visible any where I didn't have anyone at my primary school. My secondary boarding school in a wheelchair. No, accessiblity. I don't know where they hid people. The first time I saw disability in comedy was a comedian with cerebral palsy called Steady Eddie in the 1990s. I think you saw one of my short films, what's in a name?
Peta [00:05:01] I did.
Ian [00:05:02] And it's about a particular type of thing that happens with MS, but the subtext was that people would see me wheeling into shot in a wheelchair at the top and at the end of the five minutes, not notice the wheelchair. That was the the goal that I think that's where it's going to be, that suddenly you've got a person who just happens to be in a wheelchair doing something.
Peta [00:05:29] I was going to talk to you about your film. Of course. What's in the name? Because it one at the ability fest, didn't it?
Ian [00:05:37] Focus on ability. Short film festival. For some reason, I won best actor and had never wheeled in front of a camera before, but I didn't know anyone with MS I could draw on, so I had to do it. So I ended up with, six months mentoring, mentoring with the, winners of the American film, television, whatever in Hollywood just via zoom. And, at the end of that, I learned a little bit, but I worked out that I'm probably not going to get a role in home, in a way, as an ageing cripple.
Peta [00:06:13] I don't know why not.
Ian [00:06:16] I. Well, I just thought, now there's not gonna be too many rules, so I'll set up my own thing and start doing YouTube videos and short films that I can be in. Without getting too deep. Apart from being a hobby and an interest and producing something. I think it's pretty good for my mental health because I've got I've got to wake up in the morning looking forward to something and at the end of the day, pour a glass of wine and say, that was a good day's work. It is not easy to find a lot of jokes about M.S. or disability. Really. However, when I see a person with disability, I don't see the disability. Really. I see what they can do with it. You know, like if someone wheels into the room and whips up the ramp, well I'm going. Okay, we're on for chat.
Peta [00:07:08] And this is an occasion where I really value the idea of having somebody who has a different perspective to me on the podcast in how you view your disabled life. I don't want to put words in your mouth, but when you say you want people to not see the disability, do you mean you don't want people to see the negative aspects of your disability?
Ian [00:07:34] Not necessarily. It's more an acceptance of that's who this person has. Happens to be. I don't particularly like talking about disability, but if somebody asked me a question, I'm more than happy to chat about it. As long as they're happy to listen, I don't want it to be just like people without disabilities don't give disability a thought. I wouldn't think most of them. If you live with someone with a disability, you do. If you have a disability you do, you're probably the same as me. It doesn't define me. And when I first got my wheelchair, I'd be going through the shopping centre and go, oh, that's a surprise, because I forget that I've got it. It's my means of getting about. It's my walking.
Peta [00:08:20] Despite my being born with my disability, and I've been using an electric wheelchair since I was five. I have to say, when I get into bed some nights I look back at my wheelchair and I think, oh yeah, that's right. Of course, of course, that's part of me and the part of my every day. But I do often forget that I use a wheelchair. So that does make sense to me. Absolutely. Going back to our conversations before and and you saying that you had basically no influence or representation of what it would be like to have a disability, particularly in the 60s and 70s, having no representation whatsoever? I would imagine when you did gain your M.S. diagnosis, it would have been quite a process to accept and quite, quite a shock for you. What was that process like, considering you had little to no understanding of what a disabled life could be like?
Ian [00:09:19] Believe it or not, it was an absolute relief because I was having trouble walking. I couldn't lift one foot. There could have been myriad things, you know, spinal cancer or anything like this. When I got out, I went, oh, I know what I've got to deal with now. The wheelchair was actually a choice, because one of the things that can happen with M.S. is you get a bout of fatigue, and if you do, it's like in a marathon, you just drop to the floor. Everything just goes. But this particular time it happened on the way to bed and fell on the tiles. Cracked my skull. Brain bleed. Hospital for a couple of weeks. When I came out, the first thing I did was let's get a wheelchair. NDIS had just started that time and they were looking for a guinea pig and they picked me. how fortunate to get a ramp to the courtyard and the garage. And they alerted me to this thing called a smart drive that clips onto your normal wheelchair. So if I want to go out, I have an electric wheelchair, but it was still narrow enough to get through doors, and I don't use it at home now because wheeling is my only way of getting aerobic exercise. Really. And if you got my little electric one on the back, it's easy just to tap your wheel and zoom around and don't get any exercise, but at least it's there if I want to go to the shop.
Peta [00:10:50] When you did finally decide to use a wheelchair for mobility, did you ever reflect or worry about how your loved ones around you would respond to you having an obvious disability? Was it something that you thought about or you worried about? What was that process like? Did you did you feel a difference?
Ian [00:11:15] I think people adjusted to my disability as I did. I remember breaking the news to my son by telling him that there was some good news and bad news, and the good news for me was that he got to clean out the gutters from now on. I broke the news to my best mate that I'd been diagnosed with M.S., and his first thing was, how long have you got? And I said, I got as long as I have my use by dates the same as it always has been. Just a different journey now. But he thought I had MND. Probably in the general population, a lot of misunderstanding about what it is, what the symptoms are. And that's a part of my little hobby, maybe to alert some people to things they wouldn't have realised.
Peta [00:12:03] From my experience, I think it's a very common thing for non-disabled people and disabled people to misunderstand what age disability is and what a diagnosis means for each person. Considering you're someone that really loves the use of language and how beautiful words can be, if you're intelligent and talented enough as you are, and to string them together in a in a nice way. What is it like considering MS. can affect memory and your use of language? Has that impacted the way you work? Do you find it frustrating? What's your relationship now in relation to your MS and language?
Ian [00:12:51] Well, it's frustrating occasionally. There are there are four parts of your memory. Apparently. There's your sensory memory. That's all right. But pretty one rings me. I can recognise the voice in that type of thing. Long term memory, I think is still okay. I watch quiz shows on telly to test it out. Well, what they call a working memory. That's my creative memory. It's still fine. I can come out and create something. The problem is my short term memory is shot, which means I have to reread what I wrote yesterday because I have no idea what it was. I've had to give up reading other people's novels and things because I you turn the page and it's gone. So that's frustrating. And occasionally you can find the right word for something. But I've got a couple of good things. I've got a wife called Annie and I say, what's that thing I'm trying to think of? And, Google is one of your best friends.
Peta [00:13:51] Thinking back about your time living in Vanuatu. Did your disability inform when you had to come home? Was it based on medical needs or did your diagnosis happen much later than that in your life?
Ian [00:14:08] I didn't have, diagnosis then. The kids were approaching high school age. My wife was teaching at the Port Vale International School. James was heading towards high school, so he came back to get them in the last couple of years of primary and settle down. And that's when I set up the travel agency to, specialise in organising weddings in the South Pacific. And I and I used to go back every six months or so just to check on properties and things. And I'm guess I'm seven years into the travel agency and it's all going well. And I went back over and got off the plane in Port Vila and dropped onto the tarmac, not knowing what had happened and not knowing that MS, heat and humidity didn't get on. So I hobbled through customs, cut my little hire car, went to my chiropractor. He was a lovely bloke and I walked in the door and he said, 'oh, monsieur you are walking as if your legs are on backwards. And he was the one who picked I had MS because his son's girlfriend walked exactly like me. You know, GP was saying there are a lot of other things that present, like me peripheral neuropathy or whatever. And at that time they didn't do any cognitive tests. But if they do them, they can be mixed up with, dementia, anything, you know, just because you can't remember. So straight to a specialist MRI. Lumbar puncture. Voila. MS. Anyway, I was quite relieved. And then 2012 it was, which is two years after diagnosis, my wife and daughter and I decided have a bucket list trip to Europe. While I could still walk a bit and drive a bit and I took a wheelchair.
Peta [00:16:13] Do you travel now? And if you do? What sort of things do you take into account?
Ian [00:16:19] I've given up travelling. For my situation. There's a lot of hassle in getting to the airport, through the airport, onto the plane. I can't get to the bathroom on a plane. It's a personal thing. I decided at this point, I don't want to do all that catheter and stuff mucking around, because I can still transfer at home. The other night. I had a bit of the burden and guilt, which you get occasionally because I used to do all the cooking. I used to do shopping leads to cleaning, and I can still whip up an omelette or things, but Annie does all the cooking. And I said, gee, sometimes I just feel like I'm a burden. And she said, well, he shouldn't because if the shoe was on the other foot. You'd be looking after me.
Peta [00:17:09] Given that on average, MS is more likely to affect females in their 20s and 30s. I want to ask you how you found and if you do connect with the MS community, are you a person that really values that sort of community, and you feel buoyant after seeing people with your own disability? Or do you find it quite worrisome, taking on other people's problems that you know, who might open up and share with you?
Ian [00:17:41] I've got a couple of friends who have MS, and I was a part of an MS forum, an international forum, where we chatted for a bit. Suddenly, the forum started to take over my life, and on the way to that trip in London, I met one of them in Dubai, and I met two of them in London, and we didn't get on because having MS in common is not enough to base a relationship on. I went to a local community group twice, and that's why I haven't been back, because it was all about MS, not about, well living.
Peta [00:18:21] Through my research of you, Ian I listened to another interview that you undertook, and you mentioned something called an MS meltdown. Now, those of us in the disability community know that meltdowns are very common. They're part of life when you have a disability for some people. But I hadn't realised that. That can also be the case for people with M.S.. Can you educate me and possibly the audience on how an Ms. meltdown affects you?
Ian [00:18:54] I don't know if everyone with MS gets it, but it's sort of like sensory overload. The biggest one I ever had was my niece's 21st birthday. We had a table of 12 people in a busy restaurant with a bar, and suddenly I started to hear the other tables, conversations and the ones coming across our table, not the ones talking to me. And then the live band came in, and then, the bar noises came in and I just had to say to my son, take me to the car I can't cope, because I couldn't focus on one thing. It's a bit like, don't have a conversation with the television on. You foucs on one thing. And I've been open. We had 12 people round the table for Christmas, and I was just open and say, if I leave is because it's all a bit busy. I was tempted. There's an old rocker. Well, not a rocker, but a singer. James Tyler's about to tour. And Annie and daughter going to that. But I went no I don't think so it's not worth making up their day just in case it happened.
Peta [00:20:07] Ian you're also a fellow podcaster. Your podcast is called MS'ing About. I'd love to hear more about it. How did you get started? And what's the podcast about? Each week.
Ian [00:20:20] The Queensland Government put out a $5,000 grant for someone who to build a business around a website. And have been built websites before and having started it to write again. I went back to them. So I tried to build a thing called MS'ing About to put the word MS out there, but to have fun, make podcasts, make TikTok, make in a YouTube videos or whatever. And I put a proposal to them and they came back and said, there you go. Yeah, I've had six months at it. I've learned a lot of little skills along the way. It's a podcast about nothing. So this week we did well on Phobias. Last week we did on words. We then went on oh, on failures, on the military. Just whatever comes up and somehow I just bounce off Katrina, my little partner in crime. And there goes 20 minutes and then she's fun. She's a singer and a pianist and a train driver. Yeah, I look forward to when she comes and we get a cuppa and wack the microphone into the computer and have a chat.
Peta [00:21:36] My last question for you Ian, what do you wish people better understood about what life can be like when you have a disability?
Ian [00:21:46] I just want people to accept people for who they are. It's the same for skin colour, sexual preference, whatever. We'd be a lot better world if people did that.
Peta [00:22:02] Thank you for listening to this week's episode. I hope you enjoyed it. If you did, can I encourage you to leave a writing in review on Spotify or Apple? Share the show with a friend, or go and follow me over on social media to see what I get up to when I'm not podcasting. My handle is at Peta Hooke. Thanks again for listening. And until next week. Have a good one, guys. Bye. I would like to respectfully acknowledge the Bunurong and Wurundjeri people of the island nation, of which I recalled the podcast today. And I pay my respects to both elders, past and present, along with and especially to those in the First Nations communities who are disabled themselves.