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.