Shielding Limbo
The couple staying home until everyone wears masks in public.
Married couple Kiruna Stamell and Gareth Berliner havenāt been further than the local chemist since early March. That wonāt change, they say, unless masks become mandatory in all public places or Garethās hospital deems it safe for him to attend appointments.
Garethās nutrition has been delivered via a line in his chest for 20 years due to short gut syndrome. It keeps him alive but infections have led to numerous bouts of sepsis. Covid-19 would be more dangerous for him than most, so wife Kiruna also stays home to avoid coronavirus.
Making Pirate and Parrot TV, a YouTube series for kids, has kept the comedian with Crohnās and the actor with dwarfism busy during 18 weeks at home.
Presented by Simon Minty. Produced by Emma Tracey
Subscribe to Ouch on ±«Óćtv Sounds or say "Ask the ±«Óćtv for Ouch" to your smart speaker.
Transcript
This is a full transcript of Shielding Limbo,as first published on 31July 2020 and presented by Simon Minty.<?xml:namespace prefix = "o" ns = "urn:schemas-microsoft-com:office:office" />
Ģż
Ģż
SIMONĢż- Hello, this is Cabin Fever and Iām Simon Minty. We started this strand of the Ouch podcast when the pandemic began because disabled people had so much to bring to the conversation that wasnāt being said anywhere else. As lockdown eases, that unique perspective still feels really valuable. The UK is slowly returning to some version of normality, but many of the 2.2 million people shielding, and other disabled people concerned about what getting COVID-19 would mean for them, are continuing to stay at home. How are they feeling at this stage of the pandemic? What does the future look like? And how on earth have they been filling their time? Kiruna Stamell and Gareth Berliner are shielding and have been up to all sorts of fun during lockdown. They join me from their home in Birmingham. Hello.
Ģż
Ģż
GARETH - Hello.
Ģż
Ģż
KIRUNA - Hello.
Ģż
Ģż
SIMON - So what was life like before for you, before lockdown? And thatās for those who may not know you from your various television credits.
Ģż
Ģż
KIRUNA - Oh well, we used to leave the flat. We used to go out and shop in person and drink at coffee shops and eat at restaurants and see movies. And I used to perform in the theatre when that existed.
Ģż
Ģż
gareth - And I used to perform in comedy clubs when people could be in a room together.
Ģż
Ģż
Kiruna - So it used to be the version of normal I think that many people experience, although as a disabled woman obviously my normal required adaptations and modifications, which actually has had a bit of an impact on lockdown. So for example I would always do my grocery shopping online anyway because I couldnāt reach the majority of stuff off the supermarket shelf or comfortably carry it to the car.Ģż
Ģż
Ģż
SIMON - I donāt know if we mentioned, you are a married couple. I mean, youāre independent performing and all that stuff, but you are a married couple. When did you decide to go into lockdown and why?
Ģż
Ģż
GARETH - Our last trip outside was in early March. We went to a park in Birmingham, socially distanced from people, keen to get some fresh air, but we began to realise when we just saw how busy the park was that this might be a problem. And on the way home, just talking about it and hearing the news I just said to Kiruna, āI think once we get home today we canāt go out again.ā
Ģż
Ģż
kiruna - And Gareth got a really scary phone call from his hospital on top of a couple of letters where it was really presented to him that, āLook, you know, you need to be ambulance level ill in order to come in because we will be as much a risk to your health as we might be a help.ā So that was a bit scary, to kind of realise that comorbidity - and comorbidity is basically when youāve got other things that are impacting your health - so when it might come to a clinical decision about resources for example people go, āOh well, patient A has X, Y and Z conditions on top of this, so letās put resources and energy into patient B who doesnāt have anything else going on other than just COVID-19.ā So that sort of gave us both the heebie-jeebies and because Gareth had to shield I had to shield with him because if I didnāt Iād be bringing things back into the house.
Ģż
Ģż
GARETH - I have a central line in my chest which Iāve had for about 20 years, it just changes sides, but a couple of times a year Iāll get sepsis and itās normally treated very quickly, I get into hospital quickly before it sort of attacks my body too badly and Iāll get strong antibiotics and we sort me out. But at the moment the way COVID works is not dissimilar to the way sepsis affects the immune system, and my hospital were basically saying, āIf you come in here with an infection thereās a good chance you arenāt coming out again.ā And thatās quite how strict it was. Even they said to me if I get the symptoms that would normally make me go straight to the hospital to check my blood and maybe check in they were saying, āCall 111, get a COVID test first if you can, only come here if youāre really shaking and like sepsis is taking a grip.ā And even if I went into the hospital for an infection in my line, obviously Iād be at risk of someone working on it and giving me COVID. And if I went in for COVID Iād then probably have to deal with people who didnāt know so much about my line and could again give me another infection. So itās really scary.
Ģż
Ģż
SIMON - It is terrifying. Just go back a bit. Sepsis, what does that mean? What is that?
Ģż
GARETH - Sepsis essentially is when the immune system goes into meltdown and attacks itself in a way. Your body starts crumbling because it has an infection and in order to fight the infection it kind of over produces an immune response and that results slowly in organs beginning to fail. And Iāve had that, like I say, a couple of times a year probably for 20 years, but as long as I get into hospital before my body meltsā¦ I mean, Iāve had temperatures of 104, theyāve thought I was going to die before, itās just become part and parcel of my life. So I donāt mean to be nonchalant, itās just something that you live with.
Ģż
Ģż
SIMON - The line bit. I know a little bit about that because I know you and you have your line in. Explain what thatās for?
Ģż
Ģż
gareth - Basically as a result of Crohnās Disease I have something called short gut syndrome now, which means I donāt have very much small bowel, if any at all. Iām an intestinal failure. And that means that I donāt really absorb vitamins and minerals from the food I eat. So I connect to a prescribed bag of nutritional fluid for my calories and for my vitamins and minerals. Strangely enough, before the pandemic emergency I was already involved in a national emergency that was affecting people like myself, so not only am I still dealing with the pandemic Iām dealing with a second emergency on top of that that actually means Iām currently not on appropriate nutritional material for my body. It works but itās not asā¦ Itās like Iām on baloney when I should be on sirloin steak.
Ģż
Ģż
kiruna - Yeah, so Iāll just jump in and explain that, because Iāve got used to summarising this one. The private company that was providing the total parenteral nutrition, the fluid that goes into Garethās chest, normally gets a prescription where the fluid mix is very specific for Garethās metabolism and nutritional needs. They created a very quick way of processing those bags which turned out to be unsafe and as a result they canāt keep up with the manufacturing need. So a whole group of people on total parenteral nutrition have been put on generic off the shelf bags, which historically were only ever used for when you were going away on holiday so couldnāt travel with your specific stuff. That is in theory only safe to be on for six weeks because itās not made for your specific body chemistry. However, a lot of patients have now been on that for over six months. That comes with the added difficulty of you require blood tests to make sure the generic stuff is okay for you. Blood tests mean going out to your GP, it means a risk at the moment of being exposed to COVID. So itās basically a cluster, inappropriate word, of stuff.
Ģż
Ģż
SIMON - I can only sort of get my head round how complex that must be for you and how difficult. Obviously I donāt have both parties so I canāt sort of bounce it off and hear the other side, butā¦ Oh, and also I should say, Kiruna, you have a very rare form of dwarfism, so youāre both allowed to be on ±«Óćtv Ouch. You proper qualify.
Ģż
Ģż
KIRUNA - Yes.
Ģż
Ģż
GARETH - Yeah, we qualify.
Ģż
Ģż
SIMON - Kirunaās rare form means she can tap dance, because I donāt know anyone else who can tap dance like that. Itās immense, itās complex, and both of you are very kind of calm about it, but itās a lot. Dare I ask you both, have you been out yet?
Ģż
Ģż
KIRUNA - No, not really. I think because weāre shielding we actually still arenāt able to technically go out until 1st August. The rules that have changed for us that we are able to meet up to six people outdoors. Oh, thatās it actually, I think thatās really the only thing thatās changed.
Ģż
Ģż
SIMON - Do you have outside space? Would you even go to a park or something like that?
Ģż
Ģż
GARETH - Weāve got a courtyard outside our window because weāre on the ground floor and we use the courtyard for yard time.
Ģż
Ģż
SIMON - But I mean, does it feel like prison? Is that what youāre saying? That is your little bit of fresh air?
Ģż
Ģż
gareth - Yes, I think so. I think to a degree. I mean, weāve gone as far as the post box a minute away and the chemist five minutes away, but thatās about the extent of our travel. And the chemist will actually serve us on the footpath so thereās no going indoors at all, itās all done sort of in an outdoor environment because thatās less risky for us.
Ģż
Ģż
SIMON - So, seeing as you can meet people outdoors are you actually doing that?
Ģż
Ģż
KIRUNA - Yeah, weāve had one or two friends come and meet us in our courtyard but we keep a social distance from them. And actually I would say weāve become a little bit more wary of that because the rules have relaxed. The friends weād love to meet are actually coming into contact with more and more people in circumstances that are a little bit more risky. So Gareth and I are thinking of actually winding that back, weirdly, because for them the rules are much more relaxed, but that actually kind of means that for us we could be exposed to a greater risk. I mean, what do you think, G?
Ģż
Ģż
GARETH - Iāve got a friend whoās visited me, heās not wearing a mask when he visits me, and to be honest Iāve gone into the courtyard and met him without a mask on. But I also think, even though weāre keeping a social distance, that the people that arenāt at risk, whilst there are people that are wearing a mask, there are still people that feel invulnerable. You canāt see this thing, theyāre not aware that they might be carrying it, and Iām starting to get worried that as we, the shielders, are meant to go back outside our behaviour, which is protectionist to avoid people and to be concerned about someone behind you without a mask etc, will make us look like, well those guys are being a bit extreme. You know, I feel like a lot of people are paying lip service to doing certain things weāre meant to do.
Ģż
Ģż
SIMON - Youāll be allowed to go out a bit more. Are you going to shield to that same extent then or more relaxed?
Ģż
Ģż
GARETH - I think at the moment our shielding is not going to change massively, certainly the rules donāt change massively, and I refuse to believe that from July 31st to 1st August something amazing happens in the world that Iām suddenly safer. Iām certainly not allowed indoors still in a shop, although the government says as a shielder I can now go to work if itās a COVID safe environment, but if it isnāt I shouldnāt go to work. And since I work in comedy or acting, all of which are in a multitude of places and venues, I cannot guarantee my safety.
Ģż
Ģż
KIRUNA - So Gareth got a letter that was explaining the changes that will come in force on 1st August, and actually it really is lip service, because when you look at the details of the letter theyāre saying, āOh, you no longer need to shield,ā but the description of what Gareth is still technically not encouraged to do is really close to shielding but without calling it shielding. So itās kind of like we actually get dropped in it without any support from 1st August, rather than there being any radical change. So, for example, you know, the letter says avoid indoor based activities, even though shielding is, quote, unquote, āoverā on 1st August. So weāre really still in limbo.
Ģż
Ģż
SIMON - In your ideal world what would you want to happen? What should be the plan?
Ģż
Ģż
GARETH - In an ideal world at the moment, for me, masks would have to be mandatory in public, full stop. None of this wishy-washy in a shop put your mask on, outside a shopā¦ You know, itās so insanely ridiculous that someone walking into a shop is wearing their mask and then as they walk past me and Iām on my way in they take their mask off and breathe out while theyāre walking past me. Like it makes no sense.
Ģż
Ģż
SIMON - Is there a date? When are you going to stop shielding?
Ģż
Ģż
GARETH - When you tell me Iām safe.
Ģż
Ģż
KIRUNA - I think itāll be when the hospital that manages Garethās condition tells Gareth heās safe, because see, thereās also a big disconnect between what the governmentās telling us and what our NHS advisors are actually saying.Ģż
Ģż
Ģż
GARETH - So even where at the moment I possibly need a test on a part of my health thatās quite important they would rather I still donāt go in. So Iām currently trying antibiotics at home in the hope that I donāt have the issue I may have because it would require me to go to hospital for a check. And if theyāre still that determined that theyād rather I stay at home for another week and try something out that may or may not help thatās an indication that itās still not a safe enough environment for me to go there.
Ģż
Ģż
SIMON - That kind of makes sense. In your individual circumstances youāre going to wait till those professionals, the health professionals, say yes.
Ģż
Ģż
GARETH - At least until I can come and go to have a normal appointment for my health, yeah.
Ģż
Ģż
SIMON - Iām going to bring it back a little bit to love, and maybe, Gareth, you might need to just stop listening. Kirunaā¦
Ģż
Ģż
KIRUNA - Yeah?
Ģż
Ģż
SIMON - You have done a big thing because youāve said right, Iām staying in with my husband but thatās part of marriage, in sickness and in health and so on. How has that been for you? Do you ever get a little moment going, oh, I really want to go out?
Ģż
Ģż
KIRUNA - Well, firstly let me say, Simon, thank you for recognising my awesomeness, I donāt think it gets recognised a lot in society. In fact, youāre the first person to congratulate me on this huge sacrifice that I have made for love and my husband. I have maybe one or two brief moments where thereās a bit of it that I just wanted to go oh, look letās just, you know, oh forget it, why canāt I just go out into the world? And actually those were fleeting thoughts, and they were only in response really I think to the lockdown being lifted and feeling a little bit resentful of everybody that is out there squandering their good health and freedom to do so with no care for all the shielders who are invisible and have been locked in their homes and canāt be seen and have very little financial support and have been forgotten. So yeah, to be honest it hasnāt felt like a big sacrifice at all, you know, Iām doing it for somebody that I love and heās good company for me.
Ģż
Ģż
SIMON - The flip side of that same question, Gareth. I know some times where people have stopped doing things because of me and my disability, and thatās a tough place to be because you want them to go and do it but then it means youāre going to be left behind. How have you negotiated that in your head, knowing that sheās staying in?
Ģż
Ģż
GARETH - Youāll make me blub if I talk too much, because I absolutely love my wife and what sheās doing for me and supporting me is amazing. I have to stop myself getting upset by it all. Weāre keeping each other mentally strong, weāre supporting one another. I feel like Iām part of a really unique team.
Ģż
Ģż
SIMON - Jumping across to your creative lives and what you do. So, Gareth, just jump in, that comedy bit, and it may be the same for you, Kiruna, that loss of the audience, the loss of the energy that you get. I know, Kiruna, you just finished a very long run in the West End as well. So whatās that been like, Gareth, not having the audience to respond to your jokes?
Ģż
Ģż
GARETH - Really tough, to be honest. The first few weeks in lockdown I was broadcasting live on Facebook every day, just chatting to people, not trying to be funny but just trying to find a way to deal with what had happened mentally. And I had quite a few people tuning in after a while. And then I began to feel like I couldnāt talk about my fears and my worries because these people wanted to be entertained and wanted to laugh. And after a while I realised, actually this is pretty unhealthy because Iām now only going online live for the people and to not upset them so that they have company. And I had to think about myself. So I actually stopped doing that. Iāve been doing lots of different projects online with various comedians and the odd online show, but I mean my earnings from online comedy literally probably total about 20 quid across four or five gigs. Itās pretty tough.
Ģż
Ģż
simon - And Kiruna, the loss of the audience and the energy that you get from that?
Ģż
Ģż
KIRUNA - Well, I mean the timing for me was interesting because I had just finished the run on the West End. Weirdly though, the production had 18 actors in it and people had started getting ill in sort of the last month of the production and we lost three parents of cast members based in London in February. So I thought it was a bit dodgy what was kind of happening at the time, but you just kind of put it down to oh, itās winter, itās flu. So who knows what was beneath that? But statistically that was a bit weird. So the loss of the audience, itās been a real pity, Iāve lost some work that was up and coming that I was really looking forward to, but actually as a silver lining from lockdown, being able to be in the house and bored and have to kind of be with myself has actually also been a little bit of a growth period. So itās a funny mix.
Ģż
Ģż
SIMON - What have you been doing in terms of creative output in lockdown?
Ģż
Ģż
gareth - We worked on a production in 2014 that was called āPirate and Parrotā. It was a really lovely theatre show about the worldās largest parrot and the worldās smallest pirate. You can probably work out who played what role. I obviously was the parrot. And we really enjoyed it. So we have been doing some creative things in lockdown. I think what happened was we hit week nine of lockdown and mentally the stress hit home, so I think we were being unnecessarily moody with each other. Nothing to do with us, just to do with the situation.
Ģż
Ģż
KIRUNA - Yes, just feeling generally crabby and taking it out on somebody. But when you go, āWell, letās analyse this,ā youāre like, oh my gosh, there is nothing to analyse, there actually is no point of contention, weāve all just got the pups.
Ģż
Ģż
GARETH - So we decided, thinking back to āPirate and Parrotā that maybe it was something we could make again in lockdown and we contacted the original theatre makers, Red Earth Theatre, and just asked them if they might be interested and āPirate and Parrotā has now gone live on YouTube and we will continue to make episodes, hopefully till at least September, and we hope that something might happen with it.
Ģż
Ģż
KIRUNA - Yeah, reinvigorate the project, go for a bigger theatre production, which we would love to employ disabled and non-disabled actors, so create a really nice, large cast and make a family friendly show.
Ģż
Ģż
gareth - Have a bigger cast.
Ģż
Ģż
KIRUNA - And I think that actually having been stuck indoors, one, it meant Red Earth Theatre Company werenāt able to be making theatre at the moment so they were available to work with us on a weekly basis. Garethās cousin, Johnny, was available to do the music for us, and so was Garethās brother to do the theme tune. So in a strange way everybody being sitting ducks at the moment meant that we were actually able to get the project off the ground and happening. And actually, when we went back to 2014, yes we loved the show, but we were small scale touring, and being two disabled performers, small scale touring where youāre setting up, packing down, driving, walking, washing, on top of acting and creating was actually incredibly exhausting. And as much as I enjoyed the show the logistics of small scale touring was just physically doing us both in. And actually Gareth got a line infection in one of the weeks that we were touring, so that then becomes really dangerous because heās actually managing his health and weāre going right, got to do a show and then got to get you back to hospital. So creating something in our kitchen that we could get out over the internet to an audience who were also stuck at homeā¦
Ģż
Ģż
GARETH - And actually itās been fun. You know, I mean, our home at the moment technically looks like a studio, thereās a lighting rig over my shoulder here and itās lovely that we have the space, itās lovely that weāre able to put it together at home and it looks good.
Ģż
Ģż
KIRUNA - Weāve created some additional materials to help parents talk to their kids and answer any questions that come up. Gareth and I are shielding because of his condition and we talk about it, and so weāre working in our kitchen, weāre shooting it on our mobile phone, this is what weāre working with, and thatās actually part of the charm I think because Iām hoping that children watching go, āWow, what a great couple of characters, letās make up our own stories with them,ā and use their own creativity. So thatās actually kind of part of the show. A story based episode every fortnight will come out because thatās more feasible with the writing and the music and the additional production element, and then on the alternate weeks Gareth and I are going to do a making episode or an educational episode where for example, if you actually see episode one thereās a lovely shot of an origami pirate ship filmed through a toilet roll, which is us seeing a pirate ship in the distance through the telescope. So our first make will be origami pirate ships and telescopes, so the kids will actuallyā¦ each element will relate to an episode and weāll make that with them.
Ģż
Ģż
SIMON - Will you be tackling big issues? Will you be seeing whatās going on in the news and putting them in?
Ģż
Ģż
GARETH - Itās interesting that you should say that, because we have alreadyā¦ episode five has been shot and without revealing too much we are talking about Pirate wanting to lay claim to an island and me pointing out to Pirate, āYou canāt own this island, this island owns this island and we have to look after it together.ā So thereās kind of a little eco and immigration message etc, and indigenous culture being taken over and slaughtered by various people who discovered countries.
Ģż
Ģż
KIRUNA - Manners, friendships, relationships, what are healthy relationships, all of these are actually explored in the stories, I mean, even the fact in episode one, Pirate was horrible to poor Polly, the parakeet. You know, weāve got ideas that thereāll be episodes that tackle that relationship. So it will explore actually I think sometimes things grownups need to revisit, like what is a good friendship, that sort of thing. And youāve got the beautiful innocence and smarts of Parrot combined with the naughty fallibility of Pirate who just wants gold.
Ģż
Ģż
simon - As well as āPirate and Parrotā your social media output, whether thatās TikTok, whether thatās Instagram, or maybe doubling up, itās been phenomenal. I mean, maybe thatās why you got ratty with each other because youāre doing so much, but how did you keep that energy up? How did you keep releasing stuff out? How do you do that?
Ģż
Ģż
GARETH - Itās actually getting bigger because we have just started a āPirate and Parrotā TikTok as well as our own TikToks which weāve been doing. I think itās just all of these things have been great distractions because as disabled people weāve been very caught up and very worried by governmental strategy and lines and how the public are dealing with the pandemic or choosing to deal with it. And I think being able to sink ourselves creatively into TikTok or Instagram or pushing āPirate and Parrotā is just a lovely escape, a creative escape. And I think thatās really helped us mentally to just focus on those things and not spend the whole day watching the news.
Ģż
Ģż
KIRUNA - And TikTok I find weirdly kind of liberating, because everyoneās recycling everybody elseās material and reinterpreting it for themselves and then putting it out. I find it quite an equalising platform, so for me as a woman with dwarfism youāre seeing me doing the dance routine that somebody else has just done. And so thereās a sameness as well as an individuality that the platform explores. Weāve had a little bit of bullying, as you know, Simon, the kind of rubbish that might get thrown at us, where Iāve actuallyā¦ Like, we had one that was horrible that we found the other day that refers to me with the M word and heās also actually a bit racist towards the co-star in the footage that they were laughing at. And Gareth and I were like, well how do we respond to that, and I went, letās duet with it. So weāve done a duet with this man being cruel and ridiculing meā¦
Ģż
Ģż
GARETH - Which means heāll see it.
Ģż
Ģż
KIRUNA - Silently next to the footage of him being nasty putting up banners that are written about #no to fascism call it out when you see it. And that feels like such a good response, to be able to actually go look guys, ableismās out there, letās get rid of it.
Ģż
Ģż
GARETH - Also, I have to say, TikTok as a platform, having worked across all the various social medias, what I have seen is far more representation from disabled people putting themselves on TikTok, I think because thereās a very easy ability to report someone whoās trolling and delete their posts. And thereās a lot of love out there. I do feel like TikTok at the moment is a much more open and loving platform. Youāre always going to get haters, haters are going to hate, but itās really supportive of having a go at the bullies back, not allowing that kind of practice to happen and ultimately you just block the person, you never see them again.
Ģż
Ģż
SIMON - I have one final question for you. What will you take from this period that youāve learnt or discovered that youāre going to carry on doing post lockdown?
Ģż
Ģż
GARETH - Do you know what? I would say for me itās when Kiruna asks me to do something Iāve learnt just to do it. But thatās been my big take home.
Ģż
Ģż
SIMON - Thatās good.
Ģż
Ģż
GARETH - Itās like if you want a healthy relationship and a healthy marriage, if your wife asks you to do something just get it done, then you donāt get asked again and life is much simpler.
Ģż
Ģż
kiruna - Heās meaning like tidying up and those sorts of requests.
Ģż
Ģż
SIMON - And what have you learnt, Kiruna, that youāre going to stick with?
Ģż
Ģż
KIRUNA - Iāve learnt how important being still is and allowing yourself to feel a little bit bored, because actually really great stuff can come from that because being stuck in the house there have been moments that Iāve felt bored in a way that I havenāt felt since I was a little child. And thatās kind of where the play and the creative ideas come from, I think.
Ģż
Ģż
GARETH - Yours was much deeper than mine.
Ģż
Ģż
SIMON - That was a joy. Itās great to speak to Gareth and Kiruna and see how theyāre getting on, and even under shielding theyāre still doing some amazing work. If you want to get in contact with us you can email us, itās ouch@bbc.co.uk. And you can find us on Facebook and Twitter and thatās @bbcouch. You can also find us on the ±«Óćtv Sounds app.
Ģż
Ģż
Podcast
Get the latest episodes of the Access All podcast the moment a new episode goes live!
Podcast
-
Access All: Disability News and Mental Health
Weekly podcast about mental health, wellbeing and disabled people.