The journey to Scotland’s Covid Memorial: Alec Finlay on Long Covid, ME, the importance of pacing and recuperation, and the role art can play in collective recovery

Renowned Scottish artist and poet Alec Finlay has had an intimate knowledge of – and relationship with – chronic illness since he became ill with M.E. at 21, with it informing and shaping his work. In an expansive and thoughtful conversation for our podcast Covid Matters he spoke to us about how this shaped his debilitating experience of Long Covid – and how his work on Scotland’s Covid Memorial will provide a space for recuperation and to collectively reflect on how our experiences of the Covid-19 pandemic have shaped us.

In June covid:aid became a partner on the campaign to create Scotland’s Covid Memorial – which has already raised over £60,000 and recently appointed renowned Scottish artist Alec Finlay, with a series of workshops set to take place over the summer. (Read more here.)

We spoke about this work towards the end of our interview with him for Covid Matters, a conversation which I found to be insightful, moving, and an indicator of exactly why Alec is such a great choice to be taking on this work. 

As somebody whose life-changing experiences of chronic illness had already shaped his approach to his work, his thoughts on his own experiences and previous work, the connection between ME [myalgic encephalomyelitis, also known as CFS/chronic fatigue syndrome] and Long Covid, the traumas inflicted by the UK benefits system, the importance of recuperation both in recovery and for informing the Scotland’s Covid Memorial theme of ‘I Remember’, and much more were illuminating and full of insights.

It was a fantastic privilege to speak to him for this episode, and I hope you gain as much from the conversation as I did. We hope to catch up with Alec again at a later date to find out more about how the workshops inform the work taking place on Scotland's Covid Memorial, and will be partnering with him and his team on the project.

Takeaway quotes from the episode

  1. On a fundamental connection between and Long Covid: “One of the interesting things about them is both illnesses create what's known as boom and bust. If you cross the line – certainly for me – the relapse is always the same amount of time. It doesn't really matter whether I go a little bit over my limit, or a lot. At my worst with ME, my relapses were five days, with the worst being day three. I got it down to about two-and-a-half [days]. That was the best I ever got: if I walked too far I would relapse for two-and-a-half days, with the second day being the worst. When I got Long Covid in March 2020, that just pushed it all back up again to a five-day relapse – which I've now got down to four, although I don't tend to go over the line. I've become really interested in models of energy economy: you have to train yourself in pacing, so that instead of these boom and bust cycles it becomes gentler waves. A relapse is a very painful, debilitating, emotionally upsetting thing, so it's better not to go into that state. Just to be practical, I could walk between 500 and 1000 metres with my ME at my best and I wouldn't relapse. Now, with Long Covid my walking went down to 150 metres.”

  2. On art and accessibility: “I made a five-year project about the Cairngorms. I'd never been up a mountain – I couldn't go up one. So it was quite an odd thing to do, but I was using my art to access places I couldn't reach... I got interested in how you could access places imaginatively. I also became very engaged with rewilding, and I began to make a body of work about these two things. Often art is interesting because it works by bringing things that don't seem to connect together. In the Cairngorms project, we had to do some recordings up on top of a mountain. We had to get the equipment up and we got driven up in a Landrover. I came along, though really it was the equipment that was getting taken. I'm getting emotional now: it was incredibly emotional. For 30 years I'd never been on these mountains that I loved. In the Highlands of Scotland there are all these hill tracks that have been made for people to go hunting, or occasionally to access wind farms– I just went ‘this is mad, these tracks are here and disabled people don't get to use them’. And so I made a project, which basically repeated what I had done. It was a one-off pilot where we took four people with various chronic disabilities up a mountain – called Day of Access – it was an incredibly simple idea, and very moving.

  3. On the support that those with experience of M.E./CFS could provide those with Long Covid: “One of the things I've tried to do since I got long COVID was share my experiences, because I had some 30 years of background. One of the things I've noticed is that ME groups and ME people have been able to be really helpful to people with Long Covid.”

  4. On the devastating nature of suffering a chronic illness and being disbelieved: “One of the difficulties of my life was not just having an illness, but having an illness that in my 20s and 30s was controversial. I had ME at a time when it was referred to as 'yuppie flu'. That's an incredible state of mind for a culture to get into, where people's core experience of their body is not just being disbelieved but aggressively disbelieved.”

  5. On the ‘I Remember’ theme of Scotland’s Covid Memorial: "I realised if I collected 'I remembers' that would fulfil a purpose of witness. I don't think we have a settled understanding yet of what Covid is: it's too soon. In the pandemic we have a lot of individual experiences, but we haven't yet a settled understanding. It's too big a thing, in the same way as the Second World War you can see the understanding evolves over time. It begins by a reckoning with conflict, and then later it begins to become more of a trauma. We're going through these processes. I realised that if I just collected individual people's 'I remembers' it would be the best way to make a kind of reckoning – a witness of the pandemic, a book of remembrance. Sometimes that is for people to remember a loved one that died. But with someone who got Long COVID, part of their life died and had to be reborn. Someone that lost their restaurant, something that lost their work, someone that had to change their life, someone whose partner got ill, someone whose son got ill, someone whose parent died in a care home, all of these experiences are included."

  • You can listen to Covid Matters on Spotify, Apple Podcasts, YouTube, Acast, and wherever you listen to your favourite podcasts.

  • Find more information about Scotland’s Covid Memorial – including details of the collaborative workshops taking place – on the I Remember blog.

Episode transcription

This is an automated transcription which will contain imperfections. We’re looking for volunteer transcribers to brush our transcriptions up, so if interested please get in touch.

Michael MacLennan  

It'd be great to know a bit more about what you're up to prior to the pandemic,

Alec Finlay  

Prior to the pandemic. I suppose in my life, the arc of my life, the two defining moments where... I got glandular fever and then ME when I was still at university 21. So I was never able to enter the conventional world of work. I was disabled and very ill in my, from my 20s on, and I gradually became first a publisher than an artist, and poet. And I love those things. And maybe I would have gravitated to them anyway – I do have some skills in them. But also, they were the only things that seem to fit the pattern of my life, my energy, my limitations, I could often work in bed, I could do site visits, workshops, events, and then rest afterwards. And so an almost deeper sense, there's something interesting about our that it, it converts things into more than they are and that includes, it has an odd financial structure, that you're not really being paid by the hour, you're almost being paid. We, you can always find that your downtime is energy money, because you'll have ideas. And sometimes those ideas won't come to life or not a number of years. So then, that life of me was a gradual recovery, but never getting better. And I got worse again in 2010 and 2011, when I got swine flu, and then I reacted to a flu job. So that told me that my immune system wasn't working well. And each time I had four or five months in bed very, very seriously. And that was a precursor to COVID. I think of my energy ability in terms of with ME and long COVID of relapse time. One of the interesting things about them is their illnesses that create what's known as boom and bust. So if you cross the line, certainly for me, the relapse is always the same amount of time. It doesn't really matter whether I go a little bit across my limit or a lot. At my worst with ME, my relapses were five days, with the worst being day three. I got it down to about two and a half. That was the best I ever got: so if I walked too far, I would relapse for two-and-a-half days, with the second day being the worst. When I got Long Covid in March 2020, that just pushed it all back up again, to a five-day relapse – which I've now got down more to four, although I don't tend to go over the line. I've become really interested in models of energy economy: you have to train yourself in pacing, so that instead of doing these boom and bust, it becomes gentler waves. A relapse is a very painful, debilitating, emotionally upsetting thing, so it's better not to go into that state. Just to be practical, I could walk between 500 and 1000 metres with my ME at my best and I wouldn't relapse. Now, with Long Covid my walking went down to 150 metres. But I can be active in the house I can do walk around now. I still have to rest a little bit, I still often work vertically. So that's just a really initial sketch, maybe an odd mix of the practical and honest talking about patterns. 

Alec Finlay  

A lot of people with long COVID are in a state of shock. The first three years of having me was just deeply exiling and shocking because I no longer understood what My own body was what it could do. Whenever you go into a state of relapse, you feel like you're you're dying. Your body is so painful that you don't want to be in it. It's very emotionally upsetting, sometimes can have maybe suicide ideation. And it took a long time to adjust. So when I got long COVID it was deeply upsetting and traumatising. But I recognised what it was. And I didn't have when I look at the message boards for the long COVID sites, and see people like I was at 22 and 23, where you are in an existential state of crisis, we all your habits of your body, have to be relearn or are unlearned, or are kind of catastrophize. And you have to learn things like being vertical, is a very different bodily state to being horizontal. As simple as that some of the reactions of me along COVID seem to be to do with being vertical. And, for me, especially walking is the key trigger. So I, I have an odd situation where it's terrible what's happened, but I've developed a kind of interest in it as an embodied experience, and I try to think of it in turn, it's gonna sound old, but I think of it in terms of models of rewilding, or renewable energy. Or we can talk about that more about our how do we, how does the landscape recover? Very slowly. How do we think about energy, comparing the burden of petrol with renewable energies, kind of sense of being perpetually available, that being waves. And so I try to be creative and use my own body to think about so the situation of limit that we've all been in, people are well have been limited for the last year and a half, almost, near the pandemic has been basically an experience of limit. Limit in space, money, what we can do social life. Long COVID is worse because you either in pain, and so on. But at least there's some commonality. So I'm interested in trying to talk about limit, not simply as a negative, because that limit of the pandemic, I think we all recognise that was also a kind of how life would be if we adjusted to climate change. So you see that actually, parts of the pandemic were a positive model. And there were things about it that you went, Okay, this wouldn't be so bad if I lived in a neighbourhood. Or if I worked at home. The actually there are aspects of this adjustment. adjustment and a crucial word is adaptation. So maybe, if you want to move on from that, but that's sketching a wide range of ways of looking at it. And I've seen a number of people on long COVID sites say 'this is the worst thing that ever happened to me, but it bought me back to the life I should be living'.

Michael MacLennan  

Yeah, I was reading recently about the idea of, it's not necessarily just about recovery, but it's also about discovering something about yourself, and then being able to prioritise in a way that maybe people weren't doing before. I was interested in terms of when you contracted and when long COVID happened to you was the process in terms of finding the online community and second to become a part of.

Alec Finlay  

The first thing I'll say what's interesting about long COVID, I think there are two separate things. There are people whose bodies were catastrophicly affected by the virus and were in hospital and now are debilitated by damage to organs. And I think there are people that never went to hospital like me, actually, who didn't have the virus especially badly and who have long COVID. And I'll come back to what you're asking. But one of the things that interests me having done a quite a lot of reading came out of long COVID. And even with me is that every major world virus seems to produce about 20% of people that have long term illnesses. There's now a view that Spanish flu, there was a lot of diagnosis of neurasthenia after that. It typically what happened with me to a kind of psychologizing of these people saying that they, they simply had some floor, that meant they couldn't get over. And they were emotionally affected. But now the view is that they hide me. Or what you make better post is a post viral, we have a post viral state that happened after nairs and SARS. There are studies of Hong Kong, where 2020 to 25% of people had long term impact. It's usually with me and long COVID predominantly more women than men. And there are theories about that. That was one of the reasons it was being diagnosed as hysteria. But now people are beginning to think well, what makes women's bodies differently? I don't remember. In I was off social media, when on social media a year before, on COVID. So to me longer to pick up. Then I began to pick up probably about a month then I think it was Ed Richardson's wonderful site was the first one. I actually did more writing myself, when I still had COVID, I made a creative toolkit. I just realised I wanted to do something. And I also got my friend Chris Watson to do a couple of audio walks for people that were alle isolating. So as active straight away with my limited energy, it was also like getting my well read on trying to put my collected points together. It's very odd month. And then it settled down, I recognised that I long COVID. And the term gradually began to emerge. And then I found the Body Politic site, which was interesting, and it was vast, had a worldwide reach. Which was interesting, because you saw the differences in medical treatment. You know, Americans have a terrible medical system, but they get a hell of a lot of tests, if they paid their insurance. And they were being given more drugs. So it's probably about in the two to three month period. Then I began to look and I hadn't been that much using any sites either adapted to Miami, and I found it was easier to detach from the medical establishment because they weren't helping. And I managed, and I became an amateur professional in Miami, when I got the post swine flu condition that was catastrophic again, and I did a lot of reading, but was more around Candida and mould and it things in the body he was lungs come I mean, and that was my lungs. But there weren't really such there were specific sites. I have reengaged with my immune system function in 2010 2011. I also had attended in any clinic, which was interesting, but it taught me how limited what they could offer was the long COVID sites are much richer resources that came up much quicker, while very articulate, engaged people. And they were incredibly helpful. But almost like a kind of sifting process. The two main aspects would be the emotional impact, which I kind of was already semi adjusted to.

Alec Finlay  

It was still terrifying. But I had a memory of being in my 20s and being almost like an era otherwise it was simply medicine. If you could divide into alternative and stuff rate, as it were, um, quite quickly, you were beginning to see a worldwide report of what people were trying. And a lot of it was, I think there's help, then it's not helping. No, there wasn't if there was a miracle than we know about. And it was giving resources and peer, peer to peer testimony and witness. And so it was incredibly useful. I found the bullet body politic site a little bit overwhelming in terms of this year scale. And I wish it had been clearer but where people were because gradually, I connected to the UK thread where you, you saw that basically, the NHS provision was, was very limited, to be honest, and people weren't getting that many tests. And there was very little medical help. A little side road of this would be the whole debate about the relationship between me and long COVID, which was played out on there. 

I really liked [the Covid-19 Recovery Collective]. As they were like little essays, very reflective, thoughtful. I really enjoyed writing mine. And it didn't have the kind of slightly chaotic aspect of body politic, LongCovidSOS, which was more like reading social media: eventually people were just posting quite random things about some nice day. People became habitual about using it. [The Covid-19 Recovery Collective] was almost more of a research site. I didn't go back to it much for valued at a lot. And I thought this is going to be really useful. Those are the two main ones. And then I was running my own creative toolkit, and the audio and the audio walks. And we did the idea walks with one band camp, and we made a donation. And that's actually ended up being a really good record that I still get people paying 79 P or a tenner. Um, so I see that it's still circulating somehow, because I'm not on social media to promote it.

Michael MacLennan  

I was interested in terms of from that stage, you were speaking earlier about the idea of renewable energy. And I wonder how that factored into your own kind of recovery and lead into the work with Scotland's COVID Memorial, and how that came about.

Alec Finlay  

Just gonna add afterward towards the saying that when I was reading, when I reengaged, with ME sites, it would actually be doctrine, Dr Myhill's site, which is quite well known amongst ME people, she has a very interesting position as a kind of alternative straight doctor, she's a GP, but she really buys into how do you treat ME. She has a kind of regime, but she posted a hell of a lot of medical research. And that was a very interesting resource. I would use her site as a resource, in terms of is actually less renewable energies, the parallel is more to do with me with landscape and ecology is an easier one to explain. I've made a lot of work about landscape, especially wild landscapes and mountains. And there's something paradoxical, a little bit mad and quite cussed. I made a five-year project about the Cairngorms. I'd never been up a mountain and I couldn't go up one. So it's quite an odd thing to do, but I was using my art, to access places I couldn't reach. I would do things like work with place names and their meanings. So I could sit by the road and look up and say, well, that burn or stream means that, there used to be a wood there, there was crofts up there, they used to hunt there, that used to be a Pine Wood. I got interested in how you could access places imaginatively. I also became very engaged with rewilding, and I began to make a body of work. It was about two things. Often art is interesting because it works by bringing things that don't seem to connect together. In the Cairngorms project, we had to do some recordings up on top of a mountain. We had to get the equipment up and we got driven up in a Landrover. I came along, really it was the equipment that was getting taken. I'm getting emotional now: it was incredibly emotional. For 30 years I'd never been on these mountains that I loved. In Scotland, in the highlands there are all these hill tracks that have been made for people to go hunting, or occasionally to access wind farms. I just went this is mad, these tracks are here and disabled people don't get to use them. And so I made a project, which basically repeated what I had done. I worked with Landrovers with the John Muir Trust. We did a one-off pilot where we took four people with various chronic disabilities up a mountain – called Day of Access – it was an incredibly simple idea, and very moving. And this was before I got long COVID. And the other aspect of that project was to think about rewilding and healing the land. So I have a little motto for the project, vulnerable bodies and vulnerable ecologies. And I thought, in my lifetime, our awareness of mountains has changed. We used to just see them as very solid, massive objects in claim. And now we're aware of the vulnerability of mosses and lichens, and wee creatures, and we think of the landscape as vulnerable. And I thought, This is interesting. I don't have any shame in saying My body is vulnerable. And when you have a chronic illness that affects you physically, especially when it relates to relapses, you become a bit intimidated by wild landscapes on partly subconsciously, you begin to associate them with pain, beauty and pain. So do you have access was about this state of vulnerability, but enabling people to be in the landscape. And when I got long COVID, I began to focus on a particular narrative of recuperation.

Alec Finlay  

So wild landscapes take, you know, a decade or two or three to recover, in recovering the pain woods of Scotland takes 15 years really for the pain seedlings to start coming through, when you get rid of the deer, but they did come through. And my recuperation from me happened over decades, there was no magic moment. If you asked me my 20s and say, Well, I'm over five days a time, I'm always there, but the relapses my 30s, that would have been well, three or four days, my 40s by two and a half, three days. So you, you, you, you become an age 55 now where you have a different view of life. And the awful thing for me with lung COVID is it put me back to 21. And I've been gradually evolving out of the me, maybe I'd never get rid of it. And suddenly I was back again, into starting from late, you know, snakes and ladders. You've got halfway up and then the diner snake. And so I began to think about a model of recuperation based on landscape, that it takes time. You can't force it. All you can do is a word I like is ameliorate. So you can do lots of little things. They don't. They don't immediately heal you. They help your body recover. And I was talking yesterday to a group about the two basic models that there's a kind of debate and catastrophe around with ME and long COVID. The old psychological model which basically says you have to push through it, which created this really terrible graded exercise theory of ME: you just have to keep doing more. Basically there's something wrong in your brain is telling you to get out. And the other idea is recuperation that you rest, and with the energy you save, your body gradually recovers. And I'm very much for that second view. And I think it's a philosophy of life, it isn't wrestling. And I really think that we are going to come to a reckoning with the whole CBT School of any long COVID. And this profoundly prejudiced and maligned view of human nature that doesn't believe people's account of their symptoms. It says, No, you're the problem. You need to be doing more counter Presbyterian, Calvin's, you know, and everyone who gets me are long COVID tries anyway, they're constantly overdoing things. And the real battle, the courage to recover, is learning to stop before you cross the line. Just as with an addiction, you know, the battle is finding the gentleness of self care. And I would go a walk for 200 metres. And I can do that I could go walk with you today. 300 metres, I wouldn't collapse. But I'd be in bed for six days. I know they've lost six days when I could have been recuperating. So you can talk about this a physical, emotional, spiritual and philosophical way. We've had that petrol based economy that burns, that you can switch to an economy, you know, I just got a smart metre put and what that allows you to pace your energy. And I think that there's so many positive uses of these models. chivor recuperative model of culture another way of talking about it would be the benefit system. We have a system that either quite often you are ill, or you can work.

Alec Finlay  

Now that grey area is rarely respected. And when I was very young, I went from being on Disability Living Allowance, which is URL you can't work to being on disability disability working lens. And that was a progress for me that I had a recognition of a disability, I had some benefit, but I could still be creative and active without the pressure of having to work all the time, which would make me ill. So it became a productive member of society. And then I got kicked off that benefit by a malignant DWP doctor who just didn't believe in me. And I had to model my life to survive. And I managed that a lot of people don't. If we had a kind of universal basic income. Everyone that gets catastrophic Li l would be in a better situation in terms of recuperation. And we could move to a recuperative model of society. When people go through a divorce, or get ill or their house burns down. They could recover. You know, what, why don't we build our economy around a model of recovery, adaptation, creativity. These are the models that we need to recover from economic collapse, like, you know, the banking collapse and from the pandemic. So disability can give you a model of culture that isn't about disability. I'm fair blethering on.

Michael MacLennan  

No, no, it's fascinating. And I was thinking in terms of the specifically with the benefits, welfare side of things, that friends I've known have spoken about it as being, you know, can be intensely traumatic. Because especially for somebody who's ill to have your symptoms doubt, sometimes in very blunt, dismissive terms can be adding to what you're already experiencing.

Alec Finlay  

I've lived through the de medicalizing of the benefit system. When I first when I at least I saw my GP and he signed me off sick. And then it was a DWP doctor who was clearly just a very Malayan figure, that it wasn't my GP, I still had here, at least at some respect, I could trust him. And then when Ian Duncan Smith came along, they completely de medicalize that process. And we can talk about my experiences of PIP [Personal Independence Payment]. But the culmination of it for me, was when the benefit agency said to me, in a letter, we are discounting some of your information that you gave to sorry, were discounting some of the information your GP gave us, because it came from you. Something I had said to my GP, they were unwilling to believe. And that is a level of again, malign prejudice, but it goes against science. And we've seen this against again and again, during the pandemic, Boris Johnson and people wanting to pretend that the virus stops being a virus. They're constantly this kind of boom and bust of this brilliant, oh, well, it's kind of stopped being a virus now. We've seen it hasn't stopped spreading.

Michael MacLennan  

So where are you right now in terms of the PIP and that side of things?

Alec Finlay  

Well, one of the things I've tried to do since I got long COVID, was share my experiences because I felt like at least I had some 30 years of background and one of the things I've noticed is that ME groups and ME people have been able to be really helpful to people with Long Covid. Even though some of the long COVID proponents kind of wanted to keep me separate, because they didn't want to be lumped in with an illness, they knew we're being treated very badly. I'm going to come on to the benefit. But one of the really interesting and difficult and important things about long COVID is so many medical professionals have it. That's created a situation where suddenly the rest of the medical profession has to decide are we going to believe these people, we pushed away people with me. It took us 30 years to even begin to believe them. We let them be subject to  graded exercise. And a lot of doctors were basically saying, I don't want to go through the process that people with me go through, I'm not having that. So created a kind of witness, peer to peer. And so I'm trying to be peer to peer for the benefit system. The benefit system is incredibly maligned and set up to be it cannot cope with illnesses that don't have a medical understanding, and tests and took me a year to go through the process of pet I applied in June because I'd been out for three months and I recognised it wasn't going to change, or not rapidly. I didn't get my interview. And the interview is with a sporty 20 year old in Colchester, not with a doctor. And there's a long form that you will seem unrecognisable to people because it's so little concerned with medicine. It will be Can you reach a cupboard above you? Can you reach a cover below you? Can you plan a journey? And you will find often that most of it will be irrelevant to you. Can you get in the bath? Can you show her and you have to keep a diary of your illness. And you have to even though doctors are often if I'm honest, unhelpful or in a neutral place where they can't help, you need to assemble medical evidence. So you need to do telephone conversation with your doctor where they register your symptoms. You need that as evidence. You need to know that you will be really aggressive not necessarily the people you speak to on when you ring them up yourself. When you get your risk judgments. I was rejected the first time just in an automatic way. Zero disability even No, I couldn't walk further than 150 metres. Zero disability and my life had been completely changed. That's not even to mention all the gut issues, you know, the breath issues, simply the fact that I can't reach the bus stop. And yeah, I was being told, I wasn't disabled. So then I appealed. And the second letter was interesting because it was much more aggressive. And it was written by what I might call one of their Dracula doctors. There was some attempt at medical knowledge in it, but very hostile. So I had mentioned my enemy, and it's attacked me for not attending treatment for Miami. There is no treatment for me. It said I wasn't seeking treatment for a long COVID there's no need no long COVID Centre in Scotland. And there is my doctors offered me one thing amitriptyline but there's nothing else. So they will aggressively pursue you. I had foolishly explained on in the telephone interview that I had walked 250 metres and it made me relax for six days. They wrote down I could walk 250 metres. That's the level of it. So you have to do the worst case scenario, including lying a little bit to try and adjust for they're lying about you.

Alec Finlay  

And then I went through that you go finally to a tribunal. I took an incredibly long time because they kept asking for medical evidence. And it's very difficult to give them any. And I got a wheelchair from my doctor really easily actually can't use it very well, because I can't push it because of my muscles. But I could use it if I wanted to go a trip. It could be pushed in. And so I gave us power, my medical evidence and I have a wheelchair. They discounted that said this is not evidence. So it's you leveraging that convince a casket esque entity, wheelchair forgetter. And finally, I got my doctor to write and actually say to them, there are no tests, there is no treatment. And they even discounted that. But when you speak to the tribunal is not the DWP. And I think around 40% of cases you can do better, you know, information as a lot of cases are overturned. There's a gap there. Mine was sympathetic. There's someone from the DWP, who's kind of officious. And I was happy, it was very exhausting. It lasted an hour and a half. I get very detailed, the county went into stuff about my diet and my food sensitivities I didn't expect them to listen to. And I heard Sorry, I didn't mention one thing. As soon as you enter the benefit system, you must get help from the seat Citizens Advice Bureau, you get an officer and you do nothing without them. They help you. You can't do it without them. They're incredibly good, unnecessary. And I had my permission from the CB was on the line as well. And I was honest in most of my answers, and so in the end, you know, they felt that I could look after myself which I can in the house, I accepted that. So the only benefit I was really looking at would be in terms of my mobility, my independence to enter the world. And they awarded me standard mobility be possibly argued that I should have had a higher grade on that. But I accepted. I accept that as a fair decision. So that's only 23 pounds 70 a week, but that will help pay for some of my vitamins and minerals and it will pay for an Uber or a taxi when I need to go somewhere. And also ethically and morally and emotionally. I feel like I've been heard and I'm being recognised as disabled, which is important in certain situations to do with like bus passes. And it means that long COVID is beginning to count for them. They don't actually interested what illness you have their own They interested in what you can and can't do. But it's still true that if you can't get clear medical tests, they find it harder or more they can be more aggressive to you. I only share my story so that people first of all know to get CRB. Secondly, get detailed down on medical records. Thirdly, expect that it could take a year, or certainly six months, fourthly, know not to be put off until they get to tribunal. And the tribunal will be different. Those are the key things I learned. Never vote Tory: if you're gonna vote Tory know that if another virus comes in, you get ill, you will be in a system that will be aggressive towards you. So if you want to do that, be clear about that. And I've seen people on long COVID sites say, I wish you hadn't made jokes about people. I wish I believed in me. I wish that I had thought about what it's like, you know, a lot of people going through that grief, shock. And, you know, it's it's important that we're talking about the politics of this that we have to make a culture in which disabled people can be productive and don't starve. And that just as much goes for people on the breadline, who are no suffering incredibly.

Michael MacLennan  

I was interested. I think what you say there is really powerful. And you know, one point you said about yourself being heard and recognised. And I wondered about how that factors into what you're now doing with Scotland's COVID Memorial because the idea of I remember is obviously very tied in with that.

Alec Finlay  

Yeah. One of the difficulties of my life was not just having an illness, but having an illness that in my 20s and 30s was controversial. I had ME at a time when it was referred to as 'yuppie flu'. That's an incredible state of mind for a culture to get into, where people's core experience of their body is not just being disbelieved but aggressively, disbelieved. And I never had a good experience with a doctor. I had some neutral ones. I had to pay Dr. Myhill for my first experience of being treated as if my symptoms were real. And I'm going to come to your question, but a lot of people end up with alternative therapy partly because they're listened to. And it's one of the good and difficult things about it that quite often when seasonal type of therapist, they'll have a particular view of life, like you need to do Tai Chi, or take these vitamins or do colonic irrigation. And they tend to have one thing. It's like a scene of minerals. And they go, but what the first part that helps people you sit in a room and you're listened to was either about it your sentence or then always interpreted in terms of what they do. And they feel that they have the answer, but at least it gives you a model of respect and trust. Because with long COVID in me people suffer as you When would use a feminist analysis of medicine, for instance, we just say that, me repeating my lead because more women had. So you need to find situations where you believe and that's where the websites come in. I had in my life, that experience of me and when long COVID happened. I felt like it was going to finally end that. Because I felt long COVID was so big. And I still tend to culturally it will really be believed. Or in an odd way me will be believed because me was the canary in the coal mine. If we treated me properly 30 years ago, we would have 30 years of medical research that would have helped long COVID so how stupid have we been by dismissing an illness? So I say all that because medicine has to start from the person with the illness being believed and we have a really Interesting state, in a culture, just know, where we have a lot of social debate around being believed. And it's being thrown up by very quite quite specific experiences. So women's experiences VME experiences are being incredibly validated very fast and very deeply in a kind of reification of social media. What we're doing here at Harvard is a situation where the idea of being believed is general. It's almost like you can overcorrection What I mean by that is, we attend to particular issues. I want to talk about it today. But I had an experience of living with a violent partner. As a man, you really can't generally talk about that. And I'm not interested in kind of identifying with that or being a victim. But it's interesting whenever you can't talk about a thing. And I think the division is about 30% men, 70% women, we have a kind of culture that goes, it's just women. And I don't think that helps solve the problem. The problem to me is solved when we listen to everyone. When we go, yes, this is a problem of power and violence. And it's the same with medicine. So the simple fact of listening to people and believing them is important. And the way I'm working on the Covid memorial is a I already knew about this form called I remember, which an American artist invented way back in the 70s. And he was writing about really a bit as memories of childhood, kind of like Proust, like Proust on one sentence at a time, when he would write about candies, remember the wrappers, and collecting what we would think of is like football cards.

Alec Finlay  

I realised if I collected 'I remembers' that would fulfil a purpose of witness. I don't think we have a settled understanding yet of what Covid is: it's too soon. In the pandemic we have a lot of individual experiences, but we haven't yet a settled understanding. It's too big a thing, in the same way as the Second World War you can see the understanding evolves over time. It begins by a reckoning with conflict, and then later it begins to become more of a trauma. We're going through these processes. I realised that if I just collected individual people's 'I remembers' it would be the best way to make a kind of reckoning – a witness of the pandemic, a book of remembrance. Sometimes that is for people to remember a loved one that died. But with someone who got Long COVID, part of their life died and had to be reborn. Someone that lost their restaurant, something that lost their work, someone that had to change their life, someone whose partner got ill, someone whose son got ill, someone whose parent died in a care home, all of these experiences are included. 

Alec Finlay  

It's been really interesting, we've been handling that I've been sending out these invitations to different groups. And we sent them we made a little flyer, which you can share with your members. And it went to the bereaved families, lost loved ones, and other little wave little tide coming in from them, incredibly touching and moving. And then we did a big call out with the NHS and add 60 emails in three days, which was a lot of I remember. And so we begin to see these different communities within the book. Everyone's I remember is anonymous. And they all have the same space. And they make an archive, a little bit like a kind of mass observation. And I hope that that will be useful for all of us to come to terms. And so really, it's about validating every experience. We don't need people to say, well, it didn't affect me that affected everyone. And I believe that we need a culture that can reckon on the diversity of experience and stop. As we've moved through this social media, incredibly intense sense of identity. It's also one that meant a kind of conflict between identities sometimes, where you will get these very troubling debates on wars between people who are possibly having kind of victim identity. We see it around the issues around trans people, and so on. And what we need is a culture of reconciliation and understanding where we understand any experience of exclusion, violence and prejudice and see the commonality. 

Alec Finlay  

The model for this that I respect, above all else is a book by Elaine Scarry about pain, where she wrote about pain by writing about people with chronic pain, and victims of torture. Seeing earlier, but the thing art does, where you bring two things together. So she brought those two together, which wouldn't normally, where we go, let's talk about chronic pain of isn't that terrible thing, let's talk about torture, that's a wicked thing. When you bring them together, you begin to have resonances, for instance, the sense of exile, the sense of shame. And I really believe in, she talks about, if I had pain in my body, that will be the deepest experience I can have. But you can't access it. Except by believing me. And by you having pain. And you have to know that I believe in you. So we use our own experience of pain, to trust another person's mind when people with me were dismissed as having a psychological flow, that that doubled their pain. Because they were already confused about their own body. They were already going through a lot of myths of why is this happened to me. And sometimes they were engaging. And if I just do this, I'll get better. You know, it's some kind of trauma. trauma is part of illness. But that doesn't mean we should psychologize illness. So I believe very much in processes of parley and truth and reconciliation, Northern Ireland, South Africa, at a cultural level. And I'm trying to make work that does that. So the I remember isn't about me, all I do is I accept every submission, and I make an archive. And we'll make an online record of most of them. And I pin every single one on a bit of a4 paper, everyone that comes in. So they're all given this kind of unity, this uniform feeling. Some people do six or a dozen, some people do none. But they may read one by someone else and go Yeah, that happened to me. Some of them are funny. Some of them are angry. Some of them are tragic. They're all valuable. Little experiences often speak to big events.

Michael MacLennan  

There's so much more we can speak about.  I was thinking just as a kind of final question – maybe we can do another conversation after you've done the workshops that are coming up – but I was wondering what you expect or hope to get from the workshops and the work that you're planning to do over the next few months.

Alec Finlay  

So we're doing some workshops for this I Remember project and really, it's just a chance to engage with people one knock out one to one in a small group 12 or 15 people. And there's something different about writing in a shared environment and hearing each other's and we'll also talk about the memorial itself is just that importance of, you know, when we think something we don't know, it really into we hear associate someone else, just sharing. I really love our as a kind of way of sharing. In the same way when we did they have access that small group going up the mountain, we're witnessing each other. And it's just something very moving about that. I'm really interested in peer to peer medicine support, and conflict resolution. As individuals, we can all do that. So the workshop is just a chance for us to to meet. It's nothing more than that. And if people want to, you can sign up but they can just as much require The project by sending in and I remember.

Michael MacLennan  

And at this stage, do you have an idea of how there's going to be in Pollok Country Park? Do you have an idea of how Oh, look at this time? Or is it still very much to be determined,

Alec Finlay  

I'd love to come back to you and talk about what the memorial will be next year. I know that it will be the whole of the park. And I know it will be a mixture of very modest and very ambitious, I can't. The idea is about to pun on the word support, how we support one another, and the physical support, walking stick, crutch pillar of a building, where a tree holds up another tree when it's fallen. So that's my clue for you, oh, come I have a dialogue about support. But I don't want to say too much. There's some images on the blog that say more or better suggest either the workshops or to talk about that. But I wanted not to make a single War Memorial type thing that people would stand in public around. It has to be both very public and very private. So there will be pieces that you can find just by a path. And there were people that pieces that are hidden in a Glade and so I hope that what will happen is that people can go there and go, I'm going to use this one as where I remember my loved one. When I worked on a memorial for organ and tissue donation, I realised that although in a kind of post Dianna culture we've created, we've become very comfortable about almost extrovert, demonstrations of grief. We love leaving flowers with messages and being seen to social media just makes people constantly wish to be seen to be. And I realised with a may organ donor project taught me when someone's in grief, they need privacy, safety, security protection, no one to be seen. They're going through very deep emotion. So I created a memorial there, which was in a wild, overgrown hidden space. Oh, girl, nope, I mean, secluded is private, they can take their grief there. And with this, it has to be even bigger. It has to be both visible because of the intensity of our experience, only the war that's an equivalent for this. And it also has to have pry a private aspect. And there is an idea that there will also be satellites around Scotland. So it's almost like kind of thinking over a little constellation in the park and then a wider constellation around Scotland, constellation would be quite a good way of thinking of the feeling of it. So it will be as much about walking between these simple objects.

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