Since March 2020, life has been very different for many people.
Katie and Scott from Cheltenham, UK, spoke with us about the challenges they have faced, as well as the things that have been keeping them strong.
To read the transcript of the full podcast please visit http://www.barnwoodtrust.org/my-pandemic-with-katie-and-scott/
‘Alice: You’re listening to My Pandemic, a Barnwood Trust podcast that explores the experiences of disabled people and people with mental health challenges during this time of social distancing and lockdowns. We talk about the challenges and the things that can bring strength during this time.
This episode I spoke with Katie and Scott Peacock – a couple who have each found challenges and strengths in different ways. They began by introducing themselves.
Katie: My name’s Katie, I’m Scott’s wife. I also work for the Barnwood Trust. I love being social, we have a dog and a cat which are our furry babies, and I like to read a lot and watch films.
Scott: I’m Scott Peacock, I am a big geek outside of work stuff. So, I’m into my D&D and storytelling, big-time into my video games, but you haven’t got long enough for me to explain why, I’m sure the podcast is shorter than 3 and a half years! I really love my theatre and acting and scriptwriting, and everything arts. But, outside of professionalism, I'm a big, big geek. Anything geek that I went to the theatre as well.
Katie: So that's what brought us to get us together with that. We did enjoy that. I enjoyed just watching. And obviously, as Scott says, he likes being on the stage.
Alice: I was interested to know how Katie and Scott have found the pandemic so far – a period of time that has presented a great many challenges for most people. How has the pandemic impacted on their mental health as well as the feeling of control they had over their own care?
Scott: For me, I’ve been quite mellow my whole life, but I've always had key structural points to make sure that that's maintained. So, the way I describe my life and how I keep things calm is I’m a Jenga, so as long as all the other pieces keep me together, it doesn't matter how many other pieces I lose to maintain the structure. But if the wrong Jenga piece is removed, then parts of me collapse. I have never come across that to a degree that I have during the current situation in 2020, because I've had such highs and lows in such a short period of time that the pieces aren't just one or two pieces every couple of months and then I can put the pieces back. Instead, it’s been maybe one or two one month and then 12 the next. A rollercoaster is what I would describe it as.
Katie: I think for myself, as Scott identifies, I would add that I identify as somebody with anxiety and that I've managed that for most of my life. But I would say in the beginning I was kind of swept along with the whole ‘we’re all in this together’ kind of thing, and that really gave me a lot of positivity. I was able to focus on all the all the sort of positive things myself and Scott have in terms of our own home and our own care set-up. And it was kind of a really unique feeling in the beginning, in the sense that I really felt part of something, even though it was a negative something; the community and everything, that we were coming together over something. As time's gone on, that sort of not euphoric, but that kind of optimism, shall we say, has sort of dwindled. And it's become a lot more, as Scott described, a roller coaster ride. And because we are in the house a lot more and it's just a lot more time; I've always been quite an introspective person, I always look inwardly anyway, but normally I have enough outside interests to distract me from those things, and where we've lost those, then smaller things that wouldn't normally bother me have started causing me to have anxiety again. And I know that's the case for lots of people, but I just don't think that we're in a position where it's always comfortable to talk about those feelings. And I think it would be nice to get to a place where more people can express those feelings of uncomfortableness and talk. For me, I've always loved a sense of control, and with the disability I've always felt that I haven't had so much of a sense of control. And then when we got our care package and our home, I felt that we had that sense of control. And I suppose that the pandemic has shown me and the rest of the world that actually we’re not in control very much, but that goes for all of us, so it’s had its positives and negatives, if that makes sense?
One of the other things that I really enjoy and get a lot of reassurance from is our time on our own and our time just to be a couple. But because we receive a substantial amount of care because of our physical needs, for our own safety and the team’s safety we’ve really had to reduce the team down, which means we have a lot less intimate interaction with individuals. But the interaction we have, it's a lot more intense for all parties. And as I said before, I'm quite an independent person. One of the main things prior to lockdown that used to help with my anxiety was my ability to wheel down to the shop totally independently of anybody because I just had that space; it could be the equivalent of someone else going for a run, or that sort of thing, your own space and no one else. But now, not having that, that can be really difficult to manage. And we really had to have some open and honest conversations and about when we need that space, because we haven't really come out of lockdown. So I don't feel like we’ve gone into a second one, if that makes sense.
For me, a lot of it is also even having the confidence to drive in my chair outside and the thought of if people are going to respect when I ask them to move away causes me a lot of anxiety. So I'm not able to go even to the shop without somebody with me, which takes away that little bit of mental freedom I used to give myself.
There's something about other people attitudes in the sense that, in the beginning I felt a great sense of ‘we’re in it together’, and within my community, within my street, I still feel that massively and I’m massively grateful for that, and that's one of the things that keeps me strong. But on a wider scale, it feels like as the lockdown has become more localised and much more divided and people have gone back to work, things have started to return to some sort of normal, but they’re not quite normal. It feels like the division seems greater – whether that’s in my head or whether that exists is another matter. Even interacting with you now, it's harder than it would have been 3 months ago because I just haven't had that level of interaction. So, it's knocked my confidence in a lot of ways.
Scott: I thrive when it's a general issue that needs resolving. So, I love the whole Second World War vibe that we were getting; in particular the Blitz, because it's a general thing. I thrive when I have to go out and do the looking after. So, I found joy in working out what the rules were and making sure I followed them. And I saw people around me with the same. I think the reason I mention the Blitz is that everyone had the same risk-or-reward factor. I don't resent people when met when we’re all on the same path. And I'm very good at finding out how we're all connected, and that's how I stay positive 99 percent of the time is that we're all on an equal par. I love how easily we can find it these days because we're all having to follow the same rules if we go out generally. We all have to stay home and do the same kind of things. So, that's allowed me to see just how well me and Kate work. Disability or not, we all now have the same limitation as yourself or others, and because I was very much brought up with this, the same perspective as my grandfather and grandma, that's where the blitz stuff comes from. It’s about being part of your community and everyone's equal, really, they just don't realise it until the community has to prove it to themselves.
The actual challenge for me was how do I do that on an individual basis? So, I was like “Right let’s go! Let’s all work together!” Once I'm out in the street, if I come across a challenge that I have to overcome for an elderly person that I don't know, that mentality that my grandfather and grandmother passed to me kicks in and I go “Work it out.”
The way I see it, my family a top priority, but then I thought, how far does my family go? And that's when I started to crumble for a bit, because I thought, well, Kate, Monty and Mush – our cat and dog and Kate – they're my family. And then I went “Well, no”, because I've got a PA team that I consider family. So how far does that go? And the pressure of “How are you, how are you, how are you, how are you?” But, also when that person got bad news, that meant that they had to leave for a fortnight, so if they got a family member that had a possible test that needs doing, I would have to revert right back to just protecting Kate and I and our two furry babies, as Kate put it. And that sudden juxtaposition between ‘I'm here for everyone in my little bubble’ – and I mean it, once they're in my little bubble, I'll do everything I can to not have to shrink it.
I will find the pride in being the lion of the house and this is what I have to do, but equally I'll be looking into the eyes of a person I feel I would be putting at risk just by going “You go and sort your own problem out because you're the one with the positive or possible positive test.” That would tear me down the middle because I want to help as many people as I can small in this small circle of people; once they're in it, they’ve got my back for life.
But then when I'm having to say “That's your problem” to protect the smaller circle, that really messed with my head. So, I actually find myself wanting to go out to get that sort of community, the personal part was the bit that was too much for me to digest. But if an old lady said “Can you go all the way to Tesco's because I'm trapped in my house,” even though I'm in a wheelchair I'd be the first one to go “Don't worry, I’ll work hard to get somebody to hook it on the back of my chair and I'll be back with your three years’ worth of shopping and so you don't have to go anywhere.” I love that. But I thought I would thrive off of all areas of it.
I'm getting better now, but I think it’s guilt. I'm saying ‘me’ a lot, but I'm sure it comes from Kate as well, but for me there is a lot of guilt; who do I protect when I've got such a large team? Because I'm seen as a sort of manager of the team as well in the staff sense. So, when I have to make tough decisions, I'm like, this isn't just a care team, this is a family to me. It’s constant juggling and I’ve never had to juggle that much. I've always had to just juggle maybe the occasional staff issue between Kate and me, and that happens once every six months.
Katie: For me, especially in the beginning – Scott mentions guilt – I had guilt but for different reasons. We have worked very hard to have the level of independence and freedom in our lives that we have – well, we don’t have now because of Covid – but we do have it now generally in terms of making choices about where we go, what we do and who we interact with. But in my mind I was aware of previous situations where we’ve lived in a supported living environment where that hasn't been the case. And that's part of the reason I work for the Trust, and part of my passion in life is that I feel that more disabled people and people with mental health challenges should have more rights and choice over those sorts of crucial decisions in life. I've tried to, as time has gone on, rather than feeling guilty for it, I want to speak out to enable others to realise that that capacity is there.
Scott: We've often found strength together, when we've had our various stresses or panics from different perspectives or where we actually would go, well, imagine what it would be like if this happened seven years ago when we were in the crux of the worst care experience we've ever had. And that conversation would need to be had for my state of mind so I can say, well, obviously I've done a good job as a husband and a good job as a manager of PAs in order to maintain this and get exactly what we want. But then that would then trigger Kate's perspective, which would be well think of the poor people that are still there. That's why I said, we work really well because we’re each other's yin and yang. We're really lucky in that regard. So I can say to Kate that when we get through this, I know you’ll help people. So let me help you to get through this, because that's what I'm good at.
And we and joked at the beginning that we think we would have killed each other, but we know how lucky that is. People have told us that, yes, we are like yin and yang to each other, but until you have to, you don't know until it's too late if it works perfectly. So, we're lucky enough to say 90 percent of the time it works perfectly.
Katie: I think that's been another very important thing for us in that we do both have very different interests, so we've been able to go off and have those separate interests.
Scott: I’m a big theatre and arts and that's who I am, it’s so ingrained in me. And Kate can tell you without getting into a, like I said, three and a half year conversation with you about how much that is a massive part of my life.
Katie: It's definitely his passion, the theatre and the arts.
Scott: It’s all I've studied, it’s who I am. I'm used to people saying ‘no’ when you go for an audition. What I'm not used to, and I'm sure a lot of theatre people will give you the same answer if you speak to them, is ‘maybe’. Because of this Covid it’s making a ‘maybe’, and these ‘maybes’ aren't tiny, like you missed an audition. It's maybe you don't have a job to go back to ever again. And that ‘maybe’ is way more petrifying because this isn't what I've been trained to do.
I'm very proud of that I'm in the theatre, in the arts, I use it as one of those Jenga pieces that keep me sane. So, I would say to Kate “Oh, I missed it this time, but I tell you what, next time there's another audition or there's someone I can talk to that will help me launch this or launch that.” But now, for the first time I have to say to Kate, when she was anxious about her business situation, some of our actual disagreements would be ‘Yeah, but you've got a job to go back to.’ I don't know if the industry as a whole will survive. You’ll get a no or a yes on your current job, worst case scenario when Kate had her fears. But I don't know if what I live for – and I know it sounds like if I lose that I'm going to spiral completely, but it is 50 percent of who I am. If you speak to any artist person, it is a big part of them.
Katie: And I think for you as well, Scott, I know you’ve said to me before that for you as a man, it's been very important for you, you've had to adjust to me being the provider, me being the one that goes out to work. Before, that was a lot easier to digest because you had other projects, other irons in the fire.
Scott: Yeah, if it didn't succeed there'd be a lot of times when I’d have to say ‘no income’, because of the industry I've chosen. And I would understand why Kate would accept that, because you'd go that's the nature of the beast. You either come home with this amount of money one day or you could go months without. But now I have to say to her it's not even based on next month. Like Kate said perfectly, it’s stokes on the fire, the fire has gone out, as I saw it months ago.
Katie: Not to sort of overdramatize it, but I think it's fair to say that as a disabled person –and tell me if I’m putting words in your mouth – as a disabled person, you find it hard enough to get to that point anyway, of having the stokes in the fire even for people to take you seriously. So when that started to get out, it's taken you a lot further back.
Scott: Yeah. When I start to realise that hang on, that whole fire might be out. The thing that I’ve spent 20 years studying is gone. And then I thought, well, what do I do?
Katie: I've been so blessed and I can say now – I'm not getting paid to say it – I'm so blessed that I have that reason to get up two days a week and get dressed for the Barnwood Trust. And that literally has been, for the rest of the week I don't do it. That's probably the same for a lot of people, that I don't really get up or get dressed, don't have that motivation. But for those two days a week, I think I have that motivation. And that's been that's been brilliant on the one hand. But also one thing it has taught me, and it's something I'm still grappling with, I suppose, is I'm so blessed to be in the position, again, where I'm a disabled person with employment working from home and able to do that. It's always been part of my personality to be able to be giving something back. But the thing that I'm struggling with is when I am in that workspace, I like to be with people in-person. I've already said previously that working like this knocks my confidence lots, and put on top of that only working through the keyboard and through the computer, which it’s no secret to anyone that’s it’s not one of my top skills to be technically savvy. I sometimes find it very hard because I thrived on that human interaction, and that's where my skills lie. And now I'm having to redefine that, and I suppose it's the same for a lot of people. But having had a disability as well from the beginning, from the outset of trying to get work in the first place, I had to prove that I could do it because there were lots of people that said, well, it won't last or other people will do your job for you. And now I'm having to redefine that in a way I never expected, which is quite daunting. And so Access To Work – I've been given lots of new equipment and new programmes that help me with my dyslexia. I would normally have support to go alongside to teach me how to use it. But because of the current situation, the only way that can operate is online like this. And as I've already said, that's really not my favourite way of learning anyway. So, it's going very slowly and I'm a very stubborn person, so I’ll keep going, I can assure you that. But it's a very frustrating situation. But again, coming back to that sense of guilt, I feel some guilt sometimes that I'm getting frustrated about being in a position where I have a job, when lots and lots and lots and lots of disabled people, including my husband, don't even get to get to that opportunity. And so it's sometimes just very hard to give yourself – and this could be my personality and my anxiety – but sometimes it’s very hard to give yourself a break.
And I think with all this talk of people being on shielding lists and the sense of separation and dividing people, whether it be through not just disability, it has happened over race, religion; there are lots of things that divide us. And I think with that with that division, it doesn't help personally with my anxiety.
Alice: Kate and Scott were also eager to discuss the positives that they had experienced during the pandemic. Both very passionate people, they told me about their various interests that give them strength.
Katie: The things that keep us strong are the fact we have pets; the fact that we have something that relies on us, that's very important to me. As I said, because of our needs we rely on others, but our pets are very, very reliant on us. And we do as much, if not all of that, as independent as we possibly can. So that relationship has been really key. And I'm so glad we managed to get the dog before lockdown because we've been able to spend lots of time training and bonding and that's been really, really positive. I have a cat called Monty, who is literally like a baby. He is a rescue cat and will sit with me for literally hours and let me stroke him, and I find I find that so soothing and calming. That's been amazing. Having been in a relationship – not to sound too cheesy – but having somebody else that understands what you're going through, to support you, and to have a sense of humour and sort of, you know, take the edge off my seriousness, sometimes, it's like Scott said, yin and yang balance out has really, really helped. And the little things like the fact that our neighbours next door have already put their Christmas decorations up and I always forget to get a pumpkin, but my neighbour brought us a pumpkin round this year. And so we are very lucky that our street is very community-led, that's been helping a lot.
Scott: If you spoke to the Scott three months ago and said, peddle what do you think you're capable of doing, there wouldn’t be any peddling because I'm sure it's come across that I'm quite confident, and to not be just really was really odd and quite scary. When did I have this kind of like Eureka? It was out of nowhere. I think I hit my bottom so fast. What worries me, and why I agreed to doing this talk as well as bringing out my personality, is I only bounce because I have a bounce, I have a hefty bounce about me in more ways than one [laughter]. But that only happened because of how confident I am as a person. I don’t want people to hit their rock bottom and not be able to bounce back like I did. I had that realisation, so I'm a fourth-wall-breaking 4D director. I want to implement fourth-wall-breaking techniques. And I actually got that from video games. I want to do that in theatre because I can see how it works and actually I’ve got to give credit to who I've got to give credit to; the play that made me go ‘I can bring that’, it’s really out farther than I expected, that is the War of the Worlds. It blew my mind that they literally brought this further than I have ever seen on stage, to the point where it looks as if they were about to singe the audience’s hair with fire, and I thought, yes. But even then, I was like, no, they’re not quite there, they're not quite doing it! Obviously they’re not setting people’s har on fire, but you know, I thought of other things that when they’re bringing it back to the to the stage, bring it further. So, I was like “Eureka Kate! I need to write this down!” because I was like, “this is it! This is it!” So as you can see, I'm a lot more animated now we are talking about that.
Katie: I, on the other hand, haven’t really had a Eureka moment as such. I have had a “Oh my goodness, I am so grateful to have what we've got” moment and I really appreciate where we've been. And even the fact that I can be open about my mental health. Yes, it's still there, the anxiety still happens, but I can be open about it, and I know now much clearer about how to deal with it, because I can be open and honest about it. So, that's been a big positive. And I think that's helped a lot of other people say when they’re having problems too.
One of the biggest problems for me is about staying connected with my family, even though they live in Lincolnshire. And I think quite often we take things for granted. My grandad’s actually had Covid and very, very luckily survived. So, that's made me closer to my family even though I’m further away, because we see each other nearly every day on Skype like this. And we've got things planned over Christmas for that type of thing as well. And I think it makes those things feel all the more important when we're in this situation.
Scott: I hope I’m included in that?
Katie: Of course, that goes without saying! I thought I’d talked about you quite enough already [laughter].
Alice: Finally, I asked what their plans were for the future, and if they had any hopes for things they'd like to do in the coming months.
Katie: I've got a list of things I want to do. Some of them are more extravagant and will take more doing than others, but making that list has giving me something to focus on. We've talked about travel being very important to us. And again, the knowledge that having these options is something that we are very lucky and blessed to have; to have the options and choices of things that we're going to do in the future, that freedom. So, I look forward to spreading that message and hoping that I can help others, make them feel that they can speak out. And yeah, even more so.
Scott: I kind of second what Kate says for some things. But it's also shown me that, come 2021, because of how lucky we are and how I need to do what I can to support Kate to speak out, when you realise that actually the only real barrier we've got at the moment is Covid, I realised how many excuses I made just through life: Like “Oh, that would be a bit nerve-wracking to do that,” or “I’ll do it next year.” We're in an incredibly lucky situation. This is a true barrier because they’re shut down or closed, they're not happening. But if I was going to just say one word for what I’m looking forward to in 2021, you're probably going to guess what that is, and that's going to be ‘stage’; I need some sort of stage because honestly my wings need spreading. I need to do everything I can – not just for myself – but everything I can to make the theatre industry flourish once again. Not just on a personal basis, but it is something that is probably the last of a few things that keeps us all together in a live, shared, all sat in the same room on the seats next to each other, all experiencing either the same thing or – what's most important of all about theatre to me – is that some of them aren’t experiencing the same thing as the person sat to their left, and you can't really express that when you look to the screen. Theatre brings people together on a live basis. And this is how this happened [gestures to Katie and himself]. I want more people to fall madly in love and get locked in a house, and realise that actually we’re all right.
Katie: Yeah, you’re not bad yourself. I’ll keep you.
Scott: Yeah you’re alright. I’ll give you a seven. Nine for effort.
Katie: Oh ok, I’ll take that [laughter].
Alice: Thank you for listening to Katie and Scott's story for My Pandemic, a podcast by Barnwood Trust. If you would like to tell your story then get in touch, email info@barnwoodTrust.org. For more information on Barnwood Trust and the work we do, visit www.barnwoodtrust.org.