How are you feeling today?

The sun is shining, so that helps. I’m able to open the back door so I can hear the birds as well as see the birds, that always makes me quite happy. Energywise, bodywise, I’m quite tired because I had a shower this morning and that wrecks my energy a bit. I was very clear to myself I need to rest for this talk and I just went outside for a little bit in my garden and I saw there were little flies under the leaves of my acer plant and, of course, I stood there and wiped them off and then I came in and I thought, ah damn, I should not have done that! So I’m more tired than I would have liked to be but it was so lovely being out – being in touch with nature for me is hugely important, that I can see the birds and hear the birds and go for my short little stroll makes all the difference. Being housebound, which I am for a very long time, is not so bad because my house is extended into my garden. I’m very, very grateful that I have that.

What have you lost as a result of the pandemic?

Ironically, I fought for two years with the HSE to have enough homecare but really my biggest question was that I would have PA, personal assistance, versus homecare – because homecare is what it says on the tin, it’s homecare, you can only get support in your home. For two years, I was not allowed to leave my home with my carers. I had enough care hours but I was never allowed to leave, even to go for a walk into town with my wheelchair. I was kept prisoner, in a way, by the HSE because I can’t go out on my own. Especially going into town, I find it uncomfortable to go out with a friend because when I come back I’m so exhausted that they literally need to strip the clothes off me and put me on the chair or in bed or whatever and that is something that I prefer to do with my carers, not with my friends. My friends need to be my friends. So after two years of fighting, I am finally victorious in that I now have all my care hours labelled as PA hours so I can go outside the door. That came a week before the covid lockdown started. So, I’m finally allowed to go outside the door and then I’m told to stay indoors again, because I’m one of the at-risk people. So that drives me bonkers. I haven’t even written the update that I am now victorious because everybody’s only thinking about covid, so there’s no point saying ‘Hi guys, I now won this case finally after two years’ because nobody gives a hoot. But all the people who have followed me and supported me, a lot of people are aware of my struggle but there’s no point in even highlighting what my victory is because people only want to read about covid.

What have you gained?

Not a whole lot has changed for me, I can’t say that I’ve gained anything. I relate it a lot to becoming ill, and it was that dramatic as well, a long time ago – on Wednesday I was playing tennis and on Saturday I couldn’t move. I was that ill very, very quickly. So I lost my whole creative life in days, really, and I had to rebuild it. So I suppose what a lot of you guys are learning about this isolation and solitude and the beauty of that, and being able to totally concentrate on the one thing – I’ve been there, done that, in a way. So I’m looking on in amazement at what is happening in the world but at the same time, I’m also thinking, gosh, a lot of people had no interest, no compassion, no understanding of what life for me is like, and for millions like me. I’m still well in comparison to a lot of people who live in darkened rooms with headphones on, with masks and being tube-fed. There’s a lot of people with ME that live like that, we’re the forgotten, the invisible and I don’t know if this period actually helps us or hinders us, I haven’t figured it out yet. In the beginning I thought people will get to understand our lives, but I actually don’t think so because it’s a set period. My life won’t change next month. When life goes back to normal again for the majority of people, my life will still be the same. Will people learn from this? I don’t know. 

All the stuff that’s available online now, I still can’t participate because it’s just too much, I can’t be near a computer for too long. There are so many people housebound, living with disabilities and there were no virtual cinemas, arts spaces, concerts – none of that was possible. I was in college for a short while doing disability studies one night a week and it totally knocked me – it was the worst thing I did for my body, but for me, for my own growth, even creatively, it was very important. After 2 months I was so ill I had to stop – I asked the college could I participate from home, could they set up a camera at the back of the class and I could still be there? Oh no, that wasn’t possible. This was disability studies!

There are kids with ME and their parents are asking can the child please participate in school from a distance? Oh god no, that wouldn’t be possible.. Now every child is taught online. I need to understand where my own emotions lie in this. I don’t know if anyone will truly understand what millions of people live like. People are doing courses and baking and it’s almost romantic, but this is a whole other level. There’s a slight romanticism to what I hear from others, what I see on Facebook. This is not to offend, my situation is no worse than anyone else, if you’re working and you lost your livelihood or you live with an abusive partner or you have kids with disabilities who are now at home… I’m just one of many, many different situations, I can only speak from my personal experience.

Who or what are you most worried about?

My carers still come in, thank God they’re ok and I’m ok, because if I get sick or they get sick I could end up in care again. Every morning I’m worried. If the phone rings before my carer comes, I think, oh God, they’re sick or the care agency is ringing me. So far, so good so I just have to go day by day. I’m really grateful I have that because I’m not totally isolated, I still hear what goes on. I ended up in care just over a year ago because I didn’t have enough support and every time I think of that my heart just goes. Especially now, because most people that are sick are in care homes. Nothing against the care place itself, but it was such a traumatic experience. Friends could maybe step in, it might not happen at all, but it’s a worry.

And I’m worried about my elderly neighbour, she’s 88. We support each other, I’m worried about her mental health. I have carers coming in, she has nobody coming in. We text a lot, we still bring food to her – when my carers make food here and I know she likes it, we’ll put it up on the wall. We’ve done that for years and we continue to do that. I worry about her and people like that. She’s healthier than I am, more active than I am. She would normally walk into town every day, she hated being stuck at home and now she’s really stuck at home. I worry about people who don’t have that interaction or freedom that they need. I think the biggest virus is in our heads, before this lock-down, it was something I always said.

What are you most hopeful for right now?

What I see is that nature is taking back control, I’m hoping that people will learn from this time and value nature again. In a way, this virus is just mother earth saying ‘come on guys, you majorly fecked up and I showed you many ways you did things wrong and you didn’t listen so here..’, obviously it’s not that simple, but I think that’s what’s happening. And I hope to God that people will learn to value life again, and value company and value the little things in life. I live on the little things of life, that’s what’s sustained me all these years. People have a habit of only looking at the big things, you need to have this new car, you need to have these new clothes, new shoes, whatever, you need to have the best of everything. You don’t. Life is actually very, very simple and I hope to God that people will actually learn from this. And have more compassion towards other people, I think that lacked because people were so driven and crazy, living fast, wanting more, going into debt. People had lost the run of themselves. I really hope that people will actually learn and not go back into the rat race again quickly. Time will tell.


How are you feeling today?

I’m feeling good today actually, and it’s a relief because I had not been feeling good for a couple of days. I wasn’t doing the right things, I wasn’t getting out of the house – really simple things are going to save me at the minute. I meditated this morning, did a tiny bit of yoga, I sat in the garden with my shoes off and sat in the sun and had really good coffee. Then me and my kids planned out what we’re going to cook today and tomorrow and it’s a feast! And it’s also the weekend and I’m not working – I’m still trying to behave as if the world is the same and I still need to work ten hours a day Monday to Friday.

What is something that you’ve lost as a result of the pandemic?

There’s a couple of things I feel I’ve lost – I’ve lost community, in real life community. I’ve lost freedom. I’ve also lost busyness – but I don’t miss it. I’ve lost the long list of things that I have to do that are stacked on my calendar in front of me. I was travelling quite a bit for work, I live in Donegal and I was going to Dublin quite a lot. I was terrified to say no to anyone, I felt that I had to prove that having the kids or being in Donegal was not going to hold me back in any way – and it’s really hard! I was doing mad things like driving to Dublin, then driving to Galway, then driving to Donegal… So I’ve lost that busyness and I don’t miss it. But I do miss community in the sense that I miss touching my friends, hugging them and just the freedom of being able to get in the car and just go somewhere, I really don’t like that.

What have you gained?

I have gained a deeper appreciation of our innate powerlessness, of how we are tiny flecks of dust and we’re not able to control everything and we thought we could and we can’t. For me, I’ve gained a sense that there’s some type of higher power, divine force, universal nature that’s actually in charge – I feel like whatever that is just said ‘right lads, you’ve fkked everything up and I’m going to sort stuff out now, you are all going to your room. You’re on a time out, you have been so bold!’ So I kind of have a sense of that, there’s something bigger than us, the powerlessness – and we can either lean in to the terrifying nature of that or we can surrender into the flow of that, and so that’s what I’m trying to do – on a day by day basis that’s what I’m trying to do, surrender into the flow of that.

Who or what are you most worried about?

If I’m honest, what I’m worried about, if I had to choose anything, I’m worried about my business and my future. I’m worried about money, I’m worried about how things are going to be – and not just for me, for everyone. As soon as people say things like ‘economic collapse’ or ‘the great depression’ or ‘global recession’, I just shut down, I cannot cope with that because my mind immediately goes to things like losing the house, all that kind of stuff. So I choose not to think about that, but if I have to focus on being afraid of one thing, it would be finances and money. If I had to choose about people, I’m a woman in active recovery, I’m a sober woman – I’ve been sober for over six years and it’s really important to me, it’s part of my identity. I would be really worried about people who are in homes where there is active addiction happening. People who are now trapped in those homes, I worry about particularly vulnerable people like women and children in those situations. In our house one of the things that I’m so grateful for is the fact that, even though things aren’t perfect, by any means because it’s life, there’s moments of real happiness in our house, we’re having the craic. I would really worry about homes where that’s not a thing.

What are you most hopeful for?

I’m most hopeful for this to be a great wake up call to people, in every area, particularly environmentally, but in terms of the way we live, work, communicate, do business, all of it. My greatest hope is that this is a wake up call, that it’s not too late, that we can turn things around. This is the moment where say, that thing that happened, that was the pivot, we turned things around then – because we had to, because if we kept going the way we were going, we were fkked, in every way.


How are you feeling today?

I’m feeling good in general, I’m quite open to potential today, to what I’m going to do. It’s probably not going to be a lot but I’m feeling mentally open and receptive.

What’s something that you really miss right now?

What I really miss now is something that I had taken for granted, which is physical contact – to hug somebody, even when you meet a friend and you hug and it’s just a two second embrace, it’s that sense of togetherness that’s been taken for granted my whole life. You see someone and you just hug them, or it could be a handshake or a pat on the back or something, and now it’s just so bizarre. If I do happen to meet somebody on the road, there’s this very, very clear kind of chasm between us, and that has to be maintained. I know it’s necessary, but it’s a dehumanising thing, the proximity change. You don’t even remember the colour of this person’s eyes, the details of the face… I know generally, that’s the person, but you don’t get the smell or … It’s almost as if it’s from a screen, even communicating in real life, there’s such a distance between us it might as well be a screen. Everyday physical contact, that’s the thing I miss the most.

What is something that you’ve gained?

I won’t say I’ve gained new insights but I’ve gained a sort of clarity on my own ideas. It’s sort of brought them into a better focus in terms of my own plans and the direction my life was taking. I was planning to open a studio practice and part of my hesitancy was the inevitable solitude of doing this kind of work, but to go a step further and maybe set up a studio in a village where there won’t be as many social outlets. My hesitancy came from that idea that there could be a bit of isolation and I don’t want to plunge myself into that, but after this experience, or right now, I have no hesitation to do this. There’s a human need for intimacy, for closeness with other humans, and that’s something I’ll have to work to bring into my life. The daily experience I’ve had here has given me the strength and the faith to do this and to go ahead without fear, because it’s been a very positive experience. It’s just a question of managing how to make sure that there’s lots of social contact – it could be online, but ideally face to face – to make people a fundamental aspect in that equation. Just the solitude thing can be very daunting but basically I’ve gained the confidence to take it on and make it work, in light of these events, I’m sure I can do it.

Who are you most worried about right now?

Immediately, it would be my parents, because they are cocooned. And then the circle broadens and then I have very close friends who would have compromised immune systems. Immediate family comes to mind first, but I also think about my former students in Dublin – they were already in vulnerable situations with the money-grabbing landlords and sub-standard accommodation and many of them with lower levels of English. My family are obviously connected here with community and there’s lots of people I can turn to, but the students are, in some cases, thousands of miles from home… I always felt a strong affinity for their well being when they were in my care, and even now, the ones I’ve maintained contact with – I really wonder how they’re managing and try to make sure I can reach out and if it’s just a chat that i can offer them, at least it’s something.

What are you most hopeful for?

I’m most hopeful for what I believe is a continuation of this expansion of goodwill, maybe it’s reigniting this sense of the human spirit, this sense of community – that that would be as apparent as it is now in the future, or that it would even continue to develop. This reevaluation – what do I actually need in my life? What do I actually need to be happy? How many holidays do I need? And how much is that coffee? It’s a very grounding thing and I would certainly hope that this direction would continue. There’s a lot of people at home with their families – my cousin is at home with his partner and baby all day every day and he says it’s just like falling in love all over again – it’s incredible. I feel so much gratitude for people in those situations, it’s exactly what a child needs, for their parents to be around all day. For many of those parents, I can’t imagine them readily jumping in to some kind of crazy dynamic where they have to commute for three or four hours and barely see their child. I’m hopeful for a restructuring, a reevaluation for many people, many companies, I’d look at this work from home thing – it’s proved to be very successful for many businesses and I really hope it continues in that direction, that this humanity that we’ve renewed can continue to develop and continue to thrive. This feels like a strong line in the sand for the Celtic tiger era, the excesses, the materiality of it, the bullshit of it – none of that can bring you the sense of wholeness that a person needs.


How are you feeling today?

I’ve been for a walk, so I’m feeling better than I was when I woke up. I think I’m feeling really overwhelmed. My uncle died of covid-19 last weekend and his wife, my auntie – who called me every other week last year as I was going through my cancer treatment – is all alone. They don’t have children, their daughter died many years ago, and she’s all alone, nobody can go and see her. She’s trying to deal with the logistics, she’s been told the funeral will happen without her, the ashes will be returned to her at some point but she’s not able to be there. I lived with them in London when I first moved there when I was 23, my uncle Bill was a kind of cantankerous old git but he adored me and he always loved chatting on the phone. He’d been ill for a while but he took a turn and he was taken in on Saturday morning and was dead that afternoon. So it’s hit home.

Also, my children had been living with my father in law for two weeks before this, I’d been recovering from an 11 hour surgery after a year of cancer treatment. I’d go over and see them, I was so grateful to my father in law and then all of a sudden, in 24 hours they’re here, all of them, off school… I’m feeling it all, put it that way. We sort of had our own pandemic last year, January last year I was diagnosed with breast cancer. It’s been a whole year of treatment. I feel like I’ve been thrown from one weird trauma to another.

What do you miss most right now?

I miss my sea swims. I have a group of girls that I’m friends with here in Bangor and we call ourselves the water babes. They got me through cancer last year – even though I wasn’t able to swim for most of last year, we have a whatsapp group and they just kept me going because they’re filthy, filthy hilarious. They kept my lights on, kept me giggling. I was just so excited to get back swimming after my surgery. The first day I came back swimming with the group, we were 2 metres away from each other because social distancing had kicked in and then we were told we could only be twos and now we can’t swim at all. So I’m really missing my girls, my swims, that giggling in the water. The sea just takes all your troubles away.

I miss my sister and I miss my dad. Weirdly, just before this hit, I took a notion and went to Dublin for the day. I honestly think it was God or whatever telling me, just go and see your sister and your dad because we had no idea this was going to go on as long as it has. So I’m so glad I did do that but I miss them.

What’s somethign that you’ve gained?

Wisdom, maybe? I don’t know what you’d call it but I’m being very reflective, I’m trying to see my responses to things, I’m watching myself and watching how I deal with things. I really believe, after all of last year and the impact it had on our family, having us all together again in such close proximity is quite healing and it’s probably what we need most, even though it’s hard at time. I’m gaining a new perspective. I’m going to have them all  here until September so I really want to make the most of that, even though I also need to balance it with some serious alone time! They range in age from 6 up to 12. My tip for families, invest in the board game ‘Throw Throw Burrito’, it’s the most fun. It’s a card game with dodge ball built in. I haven’t laughed so hard. My 12 year old uses it to get rid of all of her aggression!

Who are you most worried about?

I’m worried about my father in law and my dad. My father in law is coming up 83 and he’s our rock. He’s had our kids, essentially for the last year, for the most part. Even when they weren’t staying with him, he’d be down at the school to say good morning, he’s really involved. And he’s now spent 4 weeks not seeing his grandchildren. A couple of times he walked down and stood at the garden wall but I think he just found it too hard because he couldn’t hug them. I’m a bit worried about the long term impact. I’m kicking myself that we didn’t just all move in together at the time. I’m also concerned about my dad, he’s self isolating with his partner. They don’t live together, they’ve got a lot of freedom usually so I’m more concerned they’re going to die from killing each other! Or that he might die from boredom, all his activities – he’s in the national philharmonic choir, he plays the saxophone, he’s in two different bands, he’s an amateur dramatics director and singer – and all of that’s just been cancelled so he’s bored and I’m concerned that that will have an impact. Those two men are so, so significant and so important in our lives.

What are you most hopeful for right now?

I’m hopeful for a new wave of confidence in female leadership and female visibility. Like Jacinda Ardern, Angela Merkel – there’s some phenomenal female leaders who are just really owning this moment and dealing with it in a new way. I’m hopeful that that will trickle down to the rest of us feeling confident to stand up and speak. I’m really keen for women over 40 to be seen. I work as a camera confidence coach and the one thing women say to me again and again is ‘I hate my face’, we’ve got to get over that because if we can’t see each other, we don’t think we exist, so I’m hopeful that elder-women and women in their middle age will really step forward into that space of leadership, with their wisdom and their experience and lead the way for young men and women. There’s a lot about how to raise girls at the moment, I’ve got one girl and two boys but there’s actually tonnes to be thought about in how to raise men who are comfortable in their own skins and are compassionate and nurturing. I’m lucky, my parents in law raised four incredible men, who are nurturing, gentle, kind – so I’ve gotten a head start because how Simon fathers and parents is beautiful and the boys are so great, but there’s a lot more. So I’m hopeful for that.


How are you feeling today?

Amazing! I feel really good. I suppose, as an introvert, my life hasn’t really changed much, I have plenty to do in my house. And since the whole world has stopped, having anxiety, it’s just made it that much easier for me to be creative. Rather than having to worry what everyone else is doing and trying to keep up with the Jones’, I can just focus on myself – which is really strange for me because I’ve never had that, never had that relaxed feeling. Being a perfectionist as well, it allows you the time to perfect things – now I’m making my own deadlines. Well, there are no deadlines really I suppose, it’s just doing stuff for the sake of wanting to do it rather than feeling I have to do things. I feel awful saying that I feel amazing but it’s just a really good creative period for me at the moment, so I’m enjoying it.

What’s something that you really miss right now?

I definitely miss hugs, and I know everyone’s saying that, but I really do! I’m a really tactile person, I love to be present with the people I love and I really miss that. Something I didn’t realise I’d miss so much is dogs, I am just craving random dogs so much. I know I have my own two but for me, it’s a way to connect to people without there being any awkwardness. They kind of break that social barrier because you have something in common, you both like dogs. I suppose I didn’t realise how much part of my normal everyday routine meeting random dogs and talking to people was until this happened. And in a way, I’m missing work then too – I’m not a photographer who brings their camera everywhere but I’ve now been a month without taking a photograph and in that respect I don’t feel myself. All that excitement in my life of giving a pet owner a portrait of their dog, a print or a frame or a photo-book, that’s all gone and I miss that connection with people.

What’s something that you’ve gained?

This is the first period in my life where I’m not anxious about things I’ve done in the past or anxious about things that might happen. Especially with anxiety, you’re always at the extreme of a situation and I don’t have that anymore because I’m not being social, so this is the first period in my life that is really, genuinely, a period of calm. And that’s very interesting, because I’ve never been one to be creative in calm, I’m usually creative in mania – if there’s a deadline or I have to do something for someone else, but I don’t have that and yet, ideas are just flowing. I’m actually just waking up in the middle of the night with stuff to do and just writing it in a book, I’ve never had that. So that’s a really lovely thing to have gained. It’s really time with myself, more than anything, time to actually listen to myself and think, is this right for me? Am I comfortable with this? And with that, time to assess things before you actually do them, so I suppose it just dissipates anxiety. I have breathing space, not just on a treadmill.

Who are you most worried about?

I think the older generation in Ireland in general. We have a couple of elderly people in our family of course, but I think it’s just that in our population as a whole, they’re being hit the most and they’re the ones who know the stories, they’re the ones who teach us things. My grandmother taught me how to bake, my grandfather taught me how to play piano – they’re the things being taken away from us. I don’t have my grandparents anymore but I have a lot of older people who have been so inspiring to me and so encouraging. Just to see our older generation under such threat, it’s just really really sad. They are the backbone of Ireland, they did make us. It’s just something that’s really played on my mind a lot. I’m not worried about my business or anything like that, we’ll all get through it – and I suppose in a sense, that has quelled the anxiety as well, because I know I’m not alone. But I know that those older people are feeling alone and that makes me feel sad.

What are you most hopeful for?

I think I’m most hopeful that younger generation that are so focused online, the social media influencers and all that, I’m hopeful that out of this, they’ll take a second and realise it’s not the be all and end all. You know, likes, clout, whatever, it doesn’t really matter at the end of the day – it’s who you surround yourself with in real life that’s important. And I think it’s really fascinating to see how quick mother earth recovers when we’re taken out of the equation, I hope we can learn from that and I hope for people who have said that climate change isn’t real, that they can see when we actually remove cars and factories, what we can do to the earth, that we can help it and we can make a change. I hope it brings us closer together, as a nation – as people, we’ve all gotten disconnected, everything became so instantaneous and now it’s not and I think people have kind of cracked a little under that pressure of having to be still. People aren’t used to it. I hope we can take a second to breath and appreciate it. Appreciate life, because it is so fleeting, when something like this comes along, something that none of us are protected against, it’s just made me very grateful for what I have and who I have in my life.