104 - Alison Larkman - "I would be here if I could"

Episode 104 of the Long Covid Podcast is a chat with artist, Alison Larkman, about her project "I would be here if I could" which is currently in progress. We chat about the inspiration behind the project, and Alison's experiences with ME which really resonate throughout the project.

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(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to welcome my guest this morning, Alison Larkman who is an artist living with ME. And we're going to be talking about all sorts of stuff this morning. But in particular, a new project that's kind of just kicked off and in progress at the moment. So a very warm welcome to the podcast.

Alison Larkman  
Thank you. It's really nice to be here.

Jackie Baxter  
I'm so excited to dive into all of this. But would you maybe just say a little bit more about yourself and what you do, I suppose?

Alison Larkman  
Well, currently, I'm living in Bristol, I've had ME since my 20s. And I'm past my 20s, shall we say? By quite a few years. I used to be an international rower. And I've ran my own T Shirt Company and got absolutely floored by, I guess what was then glandular fever, but it wasn't picked up at the time. And then for about 20 years, I've been fine. And then in the last 11 years, I've literally had completely life changing ME, I've had to stop and completely change my life. 

And I recognize that a lot of the symptoms that ME has are shared with long COVID. Mainly, I think, for me, it's the I mean it's the whole symptoms around - I hate the word fatigue, but you know, being completely withered, having no no energy. But also this idea that we're people who've gone from having normal, everyday, ordinary lives to being absolutely floored by something that has, you know, literally takes you away from the world. 

You know, wheelchair ramps are all very well, if you can get to the ramp, but for so many of us for certain periods of time, you know, we're not out of our houses, we're shut in and shut out. So that's really, as an artist now is what I'm really exploring, is this idea of invisibility and being a bit of sort of the fragile-ness of that

Jackie Baxter  
definitely I mean, I think, you know, depends who you speak to, doesn't it, whether long COVID and ME are the same thing, or similar or related, or whatever you want to call them. But what we obviously do know is that there's an awful lot of crossover between the two conditions. 

And you know, I think certainly one of those things is, as you say, this isolation, this kind of thing where, practically overnight, you can have your identity completely ripped from you, where you are now this person who can't do anything, potentially, certainly can't do the things that you would have considered to be normal, before you got sick. And this yes, isolation, and being cut off from your life, from the people that you spent your time with, from your job, from your income. And it's not a pleasant experience.

Alison Larkman  
And I think that's why - I'm going to leap into my idea just because I'm so enthusiastic about it. But basically, the project I've created was from a very restricted and dark time of literally thinking of all the places I would go if I could. And weirdly, they were things like shopping centers, and I didn't even like shopping that much. But just you know, the idea that you can wander through a shopping center, wander through a train station, and you don't realize how amazing it is to just wander through somewhere that you haven't even thought about, you know, and you don't, until it's taken away, you don't realize that that's actually quite amazing to be there. 

So the project that I'm working on at the minute is inviting people with the question of "where would you be if you could?" and thinking about, you know, all of those places that are so special, and that there's people there that don't realize that you're not there, you know, our absence makes us invisible. So the idea is next year, this humongous, well, it's much bigger than I intended, a big mirror box will appear at places around the UK. And where it stops will be the places chosen by people with long COVID and ME, and any other health condition takes you away from being able to get to a special place. 

And I'm asking people to leave audio messages, or I'm almost seeing them as almost like audio pieces of art in a way that people are recording. So it's almost like it's with their phones, and just talking about where would you be if you could? What would you do there? Who would you leave a message for? And the project opened in June, and people can go on to the project website and record a message, send it in. And then next year, I will, I as in the larger project, will try and visit as many of these places as possible. So we may have permission, we may not have permission, but the idea is your voice is played at the place that's really special to you.

Jackie Baxter  
Yeah, and that's such a beautiful idea, isn't it? Because as you say, you often don't realize how amazing even some of the simple things are, until suddenly, you can't do them. I mean, I think you know, before coming down with an illness like this, you wouldn't ever consider the fact that you couldn't go to the shopping center, for example, or the beach, because you are not in a world where you would ever not be able to do that. And I think, you know, coming back to the sort of, you don't notice something that isn't there. So all of these people who are unwell with ME, with long COVID, they're not there. So they are in that sense invisible, aren't they?

Alison Larkman  
And there's a huge number. I mean, when I've looked into it for all the huge amounts of grants, I'm writing for fundraising. But when I've looked into it, you know, there's 2 million people self reporting with long COVID. Half a million people with ME, 65,000 People with severe ME in the UK alone, and they're bed bound, and you think, you know, that's it is so invisible. 

And the idea I like of a mirrored box is that it reflects the outside, so in itself, at times will feel almost invisible. And someone can go and stand inside that box, and they'll hear a message, but they can also see out because it's two ways. So for other people looking at them, they will disappear into this, well almost disappear. They'll probably be a shadow or something. But what I like as well is that in someone telling you about a place that is special, you're allowing the person who's hearing your message to wonder why you might not be there, and to gently connect. 

So one of the people very early on that have been helping me with ideas, that's also got ME, she said, Do you think they might send me a postcard, because I'd love to know they'd been there. And I just thought, what an amazing idea that someone could literally write a postcard and say, I was here, I heard your message, hello from me, or, you know, some response to what they said. 

And so  that will be part of the connection, of connecting people who are present in a place of people who are absent will be postcards, obviously going through the project, we're not going to be sharing addresses, but yeah, like that idea that someone also has the opportunity to not just hear and experience, but actually say how much that they might have been affected by it, or thoughts or or whatever.

Jackie Baxter  
Yeah, exactly. And this, you know, again, to somebody who doesn't have Long COVID, or ME, I think, you know, it's this idea of difficult conversations, isn't it? And a lot of people shy away from difficult conversations, because they're difficult, and they don't know how to do it. And you know, as much as that may be an understandable reaction, when you're the person that's like, actually, I would quite like this to be talked about, because this is affecting me. And this is affecting my life and my ability to like, do anything. 

It's almost like it's kind of shoehorning that a little bit, isn't it, and these people are experiencing this and hearing it and they're not able so much to kind of say, I can't see it, therefore I can kind of pretend it doesn't exist. I don't know. And I suppose it's a way of raising awareness, isn't it, but in a much more creative and much more natural, maybe, way than someone standing in front of a parliament, which, you know, maybe valid in other ways.

Alison Larkman  
I think that's what I feel that something like art has got a real role of showing another way of communicating a message. And also, it's not a thing of blame, you know, people simply don't know that people are absent because they can't see them, or unless you know, of someone with ME or long COVID, and I'm sure you've had this experience, there's only so much people can actually understand because they're seeing it through their own lens. 

And maybe in a way also, it's about the idea that there's a lot of people missing from places, be that, you know, through bereavement or other health conditions, that just gives a pause for someone to think you know, it's pretty amazing I'm here and actually, here is great. But not to you know, not to sort of blame them for being there. But just to say you know that there is this wider understanding that there are people who just can't get here. 

So I'm hoping it will raise awareness because it intends to be disruptive. I mean, we will be some of the places we will be going are tops of mountains and city centers and, so we will be stopping people in their daily sort of activities to think - why is there a very large mirrored box in the middle of the path or whatever? And I like that idea, it will be a bit guerrilla, you won't know where it's turning up, we're not telling people where the tour is. 

So that if you've left a message, you will know if we've chosen your place. And we'll hopefully be live streaming if people are able, so that not to connect the person with faces, but just to connect them to the place, so they can see what the weather's like, they can hear what's going on. And they can, you know, tell us Oh no, a little bit more to the left or the right, and they'll be shown, again, moving this box around. But I like that idea that whoever's created the message is completely involved with the experience of it at that place. 

Jackie Baxter  
Yeah, that's brilliant. Because yeah, I guess that was going to be part of my next question was, you know, getting these messages out to the wider world, for want of a better word, or specifically, the place that they wanted it to, and, you know, whoever happens to be at that place, going into the box and hearing this message. But yeah, the other side of that, reflecting it back to the person who sent the message. And you mentioned the postcard earlier, and the the live stream as well, which, I suppose means that even though they aren't there, they can maybe get a taste of it.

Alison Larkman  
Yeah. And it's sort of exploring different ways we can be involved and experience, when you know, we're restricted, because I think that's such a thing that needs to be grown. Because it you know, art can't always be about a gallery, and it's not about being exclusive, and we're all creative, and anything someone presents or creates is just, you know, there's a validity to it. So, yeah, it's just exploring that. And in my very enthusiastic mind, it looks fantastic. I just have to physically, well make it happen,  which is tricky, because I struggle with my energy. So you know, it's working out how to make it work is a challenge, but I'm just determined. I just want to take voices to these places, that feels really important. 

And we have had a lot of messages. And I'm, you know, inviting anyone who would like to leave a message to do that. And obviously, there'll be places that we may not be able to get to, it's slightly dependent on funding and that sort of thing. But what we are creating is this online, interactive map. So every message will be on this map. So anyone who uses their precious energy to make something like you know, to make this audio message, it will have a place within the project. It's not going to be, you know, disappear, and it will be part of it. So that feels really important that you'll be able to see it.

Jackie Baxter  
Yes, exactly. That everyone who spends their time and energy, and I guess this is again, where somebody who doesn't have long COVID Or ME, you know, would be like, it's just a message? It's like, you literally just speak your message. And like, that's not that much energy. But to somebody who has experienced something like this, it's not just anything, you know, that could be all of your energy for several days to just do that.

Alison Larkman  
Yeah, that's a very good point. And in the early stages, I worked with a group of people who have long COVID and ME to created guide that very gently took people through how they might want to think about a message, and made it as accessible as possible. And now there are people contacting that are literally just saying, My message would be at this place, and then we're working with them to either a friend or carer's leaving the message if they can't speak, or we're extending deadlines. 

Because the current deadline is November the sixth to leave a message, but that for people who are you know, with severe forms that the most important thing is to, if you want to place a message is we will try and help you get it there. So we're trying to help those people, that they don't feel that it's too much to do it in the deadline. Is there a way we can we can do something other?

Jackie Baxter  
Yeah, definitely. And this Yeah, this idea of allowing people to be heard, I think is so important. Again, you know, I know much less about the history of ME, but certainly through long COVID, there's been, you know, an awful lot of people that have suffered gaslighting by doctors, by employers, by family members, by friends, by whoever. And, you know, from what I understand, it's been very similar, if not worse with ME over the years. 

So that and I think, just really being heard, you know. I can't do anything for you. But I hear you, is so much better than - I think you might be making this up. You know, which I'm sure a lot of people have been told over the years. So I think, you know, allowing them to be heard.

Alison Larkman  
Yeah, that's such a good point. Because, you know, that whole idea that people feel they need to fix something. So they come at you with, oh, you know, I've got a cousin who tried this, and they're better now. Have you seen this app - better now. And you think that's sort of a relentless kind of way of approaching it, but just literally to be heard. 

And I also feel like there is a lot of dark humor in the fact it's pretty shit. You know, the life you've had has been taken away. So how marvelous, if a mirror box just stops people for a minute, you know, they'll be heading up some mountain top, and they have to walk around this thing that's precariously balancing. And it might fall off a mountain and smash into little pieces, which I hope it won't because it's really expensive. 

But I also, I would enjoy that as well. And I'm sure the person who is you know, from their house or bedroom that's watching all of this unfold, or the police asking us to move on, you know, that's all part of the fact that you've, you know, you might not be there, but you're the reason why the box is there when it's, you know, hopefully that sense of humor. I don't want people to feel it's too serious. There's a fun-ness in this crazy idea popping up all over the place. 

Jackie Baxter  
Yeah, and I guess, again, that's something that can be missing from your life, when you have a condition that takes over your entire existence to, you know, degrees that you would never have even imagined before. That actually it does, it sucks any enjoyment out of things. And it's very hard to find that joy in things, you know, and I think it's important that we do try, but it's so so difficult. So actually, yeah, you know, following a mirror box that's getting, you know, shouted at by the police. Actually, that would be pretty funny.

Alison Larkman  
Yes, yeah. I mean, that in one way, I hope the poor people who are carrying it around that it doesn't happen. There will be part of me that thinks Haha! Yeah, but I do. I think what's so wonderful is the messages that are coming in are just slices of people's lives about something that is really meaningful to them. And that it's such a privilege to hear, and I hadn't appreciated when I started the project, I got carried away in how it's going to work. 

And I must admit, now I'm still thinking, how's it going to work? But it is going to work. And for those moments, when I have left my own message, and or listened to people sending messages in, it's really emotional, because it's getting in touch with something that's beautiful, but also the grief around a life that has been changed and lost. So it's a mixture of things, but it's a real honor to be getting and hearing those messages.

Jackie Baxter  
Yeah. And I guess because it is something that is so important to those people. That's kind of you know, if you could pick anywhere, where would it be? And that is the place that they've chosen.

Alison Larkman  
Yeah, yeah. And it tickles me because, you know, some people have chosen the same place. And I think, do you know each other? That's how marvelous. And then I mean that and then there's other places that are just so exact, you know, it's to the right of this statue, not the left one. And you just think, oh, that's just great. Someone's really thought of this place, and they're places we hold in our mind that are so special, and how lovely that you know exactly where you would stand somewhere. Yeah, it's been great.

Jackie Baxter  
Yeah, that's fantastic. So for people participating. I mean, obviously, they go to the website, they choose a place - is it anywhere within the UK?

Alison Larkman  
Um, yes, at the minute. It's the UK - it would be lovely at a later stage to head off to another country, but that's my enthusiasm talking.

Jackie Baxter  
That's the next funding grant, is it? 

Alison Larkman  
Yes, yeah. On the website, there's a guide you can download to give you some ideas and talk you through it. There's three steps to how you record a message. Most messages recorded on iPhones are completely, you know, very good quality. And so we're using things that people have to hand. And there's a frequently asked questions. But again, it's a very - I'm very open to ideas and any questions. So a lot of people are messaging me directly, and then we're sorting out ways to make it possible for them.

Jackie Baxter  
Yeah, perfect. I'm trying to work out what place I might go for. If I were to choose one, it must be a really hard decision.

Alison Larkman  
I think so. So I mean, yeah, the option is open for people who might want to leave more than one message. That's okay, too. And some people have written poems, a lot of people, it's a piece they've written, and then a reading out. Occasionally, it's just a short phone message, which is lovely. And we've had some songs. So I love the idea, all I'm doing is presenting a vehicle with which you will put an audio piece of some sort that will go to your place. I like that idea that it is open for people to be as creative as they want to. 

And I should say, this is a project that's been funded initially by the Arts Council, Arts Council, England, they've been amazing. So it's a valid project. You know, when I'm talking about grants and whatnot, that is the life of artists who have had ambitious projects like myself. So I'm very clear, I'm not fundraising alongside charities. I personally feel that it's so important that charities that are looking to advocate and self-support and, you know, donate to research, that's really important. The funding I'll be looking for is away from those areas. So I'm not in competition with, this is just an adventure for people to do as something, something while we're all here in this similar condition.

Jackie Baxter  
Yeah, definitely. I mean, you just mentioned something like that I've been kind of - is it a soapbox? I'm not sure if it counts as a soapbox, but you know, you're a creative. I'm a creative. And, you know, this experience, you know, it was, like we were saying a moment ago about, you know, finding things that you enjoy, and how it being so difficult when you are so unwell. 

And, you know, I think creativity, certainly for a lot of people, can be a real outlet, because, you know, drawing a picture is not going to make your symptoms go away, it's not going to magically cure you and you're not going to wake up one morning and be like, because I wrote a poem yesterday, everything is fine. But, you know, if it can take you out of that just a little bit, just for a few moments, just while you do that, I think it can be a really powerful thing to do. 

But the audio messages they are art, it's, you know, somebody's talking about something or writing a poem or singing a song or, you know, it's all these forms of expression, isn't it? I mean, that's what creativity is,  it's expressing yourself through some medium, I suppose, isn't it? And it can come in so many different forms.

Alison Larkman  
And I must say that something that I, I think has really saved me through my time of having ME. I went from helping to run companies and charging about to kind of coming into contact with a much more quieter, sensitive side of myself. And it is a bit staggering, thinking initially, that people would just leave a message a bit like audio, you know, like a phone message. And the fact that actually, people have given these really beautiful pieces. And it doesn't matter whether they're writers or singers, or they've just expressed themselves in however, whatever way they want to, and that that's been pretty amazing. It's a really lovely, lovely thing, and so important to have outlets to be able to do that.

Jackie Baxter  
Yeah, definitely. And, you know, again, there's something that I've noticed about myself over the last few years is that I'm a ridiculous perfectionist, which, you know, I think can be helpful in some areas of life. But when you're very unwell and you know, everything has to be perfect. Well, it's less helpful. 

So, no, I think the first thing I would think I'd be like, Oh, well, you know, this is going to be difficult because it's got to be perfect. And it's almost like no, that's not relevant here. Actually, what is important here is that your voice is heard. And, you know, if you record a message and you say the same thing three times because your brain's not working, well is that important? I think you know, that they're having to be perfect thing. I mean, what is perfection anyway? It's a ridiculous construct, isn't it?

Alison Larkman  
That's such a good point, because I assumed at the beginning, oh, well, I'll need to get some sound engineers to edit every single message to make it easier to hear. And actually, one of the sound engineers that I know listened to one of the messages, and his first response was, Isn't that great, you can hear them, it sounds like it should, because there are slight background noises. And like you say, someone might cough or repeat themselves. And there's just a real human-ness to that. 

And so actually, the approach we're going to take is not to edit, to simply take the name of someone at - we ask people to put their name at the beginning, just because I have this horrible fear of getting messages and locations mixed up, but we'll literally remove the name, people choose what name they would prefer to be known with a piece. So it's not like it will be an anonymous piece, but it might just have your first name or whatever name you want. And that's literally all they'll do, is take that off, and then let someone's voice speak for themselves, or their friends voice. So you know, however, they've managed to get the message. 

Jackie Baxter  
It's like a little window into their life, isn't it? 

Alison Larkman  
Yeah. 

Jackie Baxter  
And you know, the window is going to have background noises. And it's going to have, you know, spots of rain on the window, or, you know, whatever it is, I like that - it makes it more real.

Alison Larkman  
And I think as well, when people stand inside the mirror box, they'll be listening through a headset, so the outside noise will disappear. And for a moment, it would just be that person's voice as if they're talking to you on the phone or whatever. And I like that idea that it's about really connecting with someone and that moment of their message. In my head, this whole project looks great. That's what I suffer from is ideas that seem like oh, that'll work. That'll be easy! But it will be, it's gonna happen.

Jackie Baxter  
Yeah, absolutely. So at the moment, you're collecting the audio recordings?

Alison Larkman  
I'm calling them - I was calling them messages, but audio pieces, because I'm seeing this as a real collaboration of people that are contributing. So that will be November, then after Christmas, the small team is being recruited. And the mirror box, which is being designed at the minute will be made. And then from May next year, to hopefully to September, that's the window we're looking at - the mirror box will be going around the UK. 

And there is an idea, which I think will work when the new website is launched in February, people can leave their postcode. And what that means is that when the mirror box is going to be, say 25 miles away from you, you'll get an email saying in the next 48 hours, the mirror box will be at these locations. So it's this idea that people can either go online or if they're well enough, they could go and visit it or, but it's this idea that it isn't necessarily known to a wider group. But it's for the people at these places to find it as well. So it is about just appearing at a special place for that. 

But my idea is that it's really important to amplify our absence. So this stage of the project will be loud, you know, it's been quite gentle so far, but the loudness will come from the fact it will also be appearing at arts venues, it will be probably picked up by the press wondering what this thing is charging around. And there's a few radio programs that are interested in covering it. 

And to me, it feels really important that it as the project has it has a loud voice. It's not about me, it's about this crazy adventure and allowing this to happen and everyone's voices. So that will be the plan from May to September, and then then dot dot dot, that stage will end and I don't know - if I'm still around, it will have another life I'm sure.

Jackie Baxter  
Yeah, fantastic. And the website, you say where every message, so the ones that the box may not be able to get to - that website will stay. So even after the box tour, that's the right word. Even once that's over, the website, you know will still be there with all those messages that people can go and listen to any of them, I suppose.

Alison Larkman  
Yeah, a bit like a memorial and I'm hoping that when new website launches in February that we'll have this interactive map. I'm hoping that people can still leave messages. So although you might not be part of the tour, you can still leave a message and at a place. So it just becomes a map of, you know, huge number of voices just saying this is special, that was special. And I think that will be amazing.

Jackie Baxter  
Yeah, and it would really allow it to live on as well, even though the, you know, maybe physical part of the thing is over, certainly for now, you know - who knows where you might be touring the following year? But, yeah, it just, I suppose. And that makes it accessible to anybody, no matter where they are, as well. I mean, yeah, I think one of the things that partly through chatting with you partly through my own experiences, and from speaking to other people, is this idea of trying to make things accessible to people in a way that works for them. 

And, you know, I think the lockdowns, you know, has taught us a lot about that, that there are a lot of people that can work from home, for example, concerts can go online, you know, I loved that, that I could sit and watch concerts from my sofa. But all of these things, we've proven that they can be done. And I think that's very much something that should continue to be done. That things are accessible for everybody or as accessible as possible for everybody, no matter who they are, and where they are and their situation. 

And I guess that's what's so lovely about a project like this, is that it's putting it out there. So other people can get a window into the lives of these people, but also that these people, as we said, can look out and see these people experiencing it and see other people's places. It's like, Oh, where did this other person pick? They've picked the right hand side of that statue rather than the left!

Alison Larkman  
*laughs* And that's so interesting, because I think, you know, when you don't know what you don't know, because you don't know it, you know, there's so much of that within this project, that just asking that question of how can someone experience something that they can't get to, you know. How can someone who experienced something who's there, experienced something around the person who can't be there? 

And I think that exploring about how people experience things in a weird way, the initial idea was about a mirror box moving around the UK, to these special places. But when you look at well, where does the piece of art end? Is it the online map, is it - it sort of becomes a little bit fuzzy around the edges, and isn't that great in a way, that is more than just the thing that people are privileged enough to be in a place to touch. It is also about the experience that other people are having to make it move around or to see it falling off a mountain? You know, I like the idea that there is multiple audiences enjoying the same thing, but in quite different ways. Maybe?

Jackie Baxter  
Yeah, definitely. Because, as we know, from our condition, and from anything in life, I suppose, you know, everyone's experience of things is different. Two people could experience exactly the same event. But it could be completely different for them, because everybody is so different. And I guess that's what's so beautiful about things like art is that it's not This is the thing, and this is how you must experience. Actually, this is the thing, and you take from it what you like. And you know, your experience of that is so individual. And that is a very lovely thing about it.

Alison Larkman  
And then I think that's such a good point, it's sort of honoring the fact that you don't have to tell someone how to experience something, you can show them something, and it's up to them what they make of it. I think that's so important. 

Jackie Baxter  
Yeah, yeah, definitely. 

Alison Larkman  
I really hope people feel either curious about the project, or, you know, it is an extended invitation to take part should they want to, and you know, I take it not everyone is will be well enough to but if you can, that's wonderful. If you just want to follow it, that's great, too. 

And yeah, it will be what it will be, but it's just lovely having communities that are coming together. And it is that shared experience of you know, we have been taken out of our every day. And I think that's the thing that really unites especially long COVID and ME because of that experience. So it's really nice to find commonalities, and just join together in having this adventure, so to speak.

Jackie Baxter  
Yeah, absolutely. Yeah. Well, thank you so much for giving up your precious time and energy to speak to me this morning. It's been amazing to dive into this project and I'm so excited to see where it goes and you know, all the places that get picked and the box tour. 

So I will make sure that I drop all of the links into the show notes. So if any already wants to participate or even just to look a bit more into it. Do look at that. And then when your website goes live in February, I will update that in the show notes as well. So if it is The Future, and it's past February, then that might be there. So thank you so much and good luck with it all.

Alison Larkman  
Thank you. It'd be lovely to come back mid-tour and just let you know what adventures are going on and how it's gone. That would be great.

Jackie Baxter  
I would love that so much.

Transcribed by https://otter.ai