Gilly Angell: learning from experience

Scroll containing a perpetual calendar with illuminated sections. Ruzname-i dairevi - astronomical tables for both the Arebi (Islamic) and Rumi (Julian) calendars providing chronological accounts of seasonal change, entry of the sun into signs of the zodiac, times of summer and sunset.
MS Ottoman Turkish 3. Credit: Wellcome Collection. Attribution 4.0 International (CC BY 4.0)

…if you’ve self-isolated over years as I’ve done, you do slow down to a very, very different pace.

The following is an interview with Gilly Angell, a founding member of the LENS group, from 31 March 2020

Listen to the interview here

Will you tell us a bit about yourself and the LENS group?

The LENS was set up about two years ago, and came out of the All-Party Parliamentary Group on Arts, Health & Wellbeing. So CHWA (the Culture, Health & Wellbeing Alliance) is our big sister group, and LENS is for people with lived experience. Our vision statement is: ‘every member of society shall understand that access to creative and cultural opportunities is important for individual and collective wellbeing’.


And how are you doing?

I’m doing fine thank you, having got over the fact that the whole world is now in lockdown.

Some of us have already experienced lockdown over the last few decades – in some respects this is a norm for me – but for a lot of other people it’s not. So now we’re all in the same boat, but it’s about how each of us negotiates it in our own spaces or with our families. We will come out of it, and we will be changed; we will be different, but we’ll also be the same. All I can say is enjoy it… I’ve done lots and lots of retreats; when you’re preparing to go on retreat you think ‘this is what I want to do; I want to spend ten days, and I want to look at those particular things, and I want to get out and do yoga or meditation…’. And then after about day two, when you suddenly realise you’re sleeping in a dormitory with people you don’t know or somebody is stepping over you at three in the morning as they go to the loo for the sixteenth time, and you get up at four in the morning, it’s freezing cold… however much you try to say ‘this is really good for me’, you’re just tearing your hair out and you want to go home. But eventually you get to a tipping point, and you just let go; and then usually everything gets much better. Often by the time you leave you’ve learned something about yourself that you had no idea you were going to learn.

The whole country, the whole world has been diagnosed with coronavirus, and overnight, that’s it, your world has turned on a sixpence and you haven’t been able to prepare and you can’t get away from it, and you have to just go deep within yourself and work out how to sort that life out, maybe with no income, or your family there or not there. It does slowly sort itself out, that’s all I can say, and you come out the other side.


You’ve talked about the fact that we have a lot to learn from people who have experience of living with chronic illness at this time – can you tell us more about that?

I spent 11 months in hospital and the only things that I could see were clouds; so I ended up meditating on clouds and the sky and it became absolutely fascinating, from the hawk that would arrive every day with the prey that it had killed and sit on the balcony, to hot air balloons, to people letting off balloons from parties… I think it allows your sense of perception, of looking, to become much more acute and by doing that you begin to slow down, and come into your breath.

What I learnt through all of that is that you have to pace yourself. We have no control over what is happening externally at this point. But what we do in some respects have control over is our lived environment, however large or small. So you can create a routine, which I think is really important. I saw a lovely thing the other day where a guy was running on his balcony – he was doing a marathon, I think his balcony was six feet wide, but he’d run a twenty-six-mile marathon. We’re very ingenious. You adapt. I was in one room for 11 months, and I would still have a sense that I’d been moving around as I went from my bed to the sofa (which became my lounge) and on to my desk (which was my little study). I was very specific about moving around this small area. I think we can do that wherever we live. I play music, I’m doing yoga, I’m looking out onto trees, and I’m watching people go by…

What can you learn from us? I would say pace – don’t rush, take your time, enjoy… You’re going to have bad days – you have bad days even if you’re going out to work and meeting friends. You’ll have days when nothing goes right. Always take some time just to quietly sit with yourself. I think making bucket lists at this point is fairly useless. I would just enjoy and be in the moment. 


You said something very interesting to me the other day about the question of being in control of your life and how that relates to the experience of ill health.

I found I wasn’t in control of what was happening, so I just let go, just surrendered – to the point that I never read anything – I had no idea what my condition was, I just gave it to everybody else. And part of that was my way, I suppose, of controlling myself but it was also partly a letting go – just seeing what the body did, realising that there was another rhythm of everybody around me, my medical team – and that they knew best.

I also think that there are interesting discussions to be had; we’re told that pharmaceuticals are terrible and that they will kill you. For anybody like myself who’s actually been in critical care – I could only breathe for 8 seconds – I can tell you that there is an absolute surrender, that the drugs balanced and saved my life so that I could come out and through it, so I think maybe we have a different perception.

Anybody that’s got covid-19 and ends up in critical care will meet the most brilliant compassionate individuals – and they will do everything in order to stabilise you. And the drugs will stabilise you. But some people will die. And that’s the other interesting thing: if you’ve lived with very complex chronic illness, you will have faced death. You might live with death every day of your life, and you come to a very different understanding, whereby you can live each moment, each day of your life with serenity. If you do come to that point where you are going to flow away to death, you actually are at peace. And I think that’s another thing that the world is fearing at the moment; people are facing their own mortality for the very first time, and they don’t know what to do. It’s very humbling; this is bigger than all of us. We can’t google it and say ‘what do I do?’ What we can do is just be very caring of ourselves.

Both CHWA and LENS are about wellbeing, and our wellbeing starts with ourselves. And if we are caring for ourselves then we can then gently begin to care for those around us. And I know we can’t hug at the moment or shake hands but we can visualise sending virtual hugs and virtual handshakes…

Different things will support different people in different ways throughout this lockdown. It’s definitely not one size fits all. You might find that music is amazing, but for somebody else that’s a total anathema, but it could well be going back to a piece of poetry, or beginning to write…  One thing I’ve found over the years to be an amazing solace is journal-writing. When I was in hospital, I had to learn to read, write and walk – everything, again. I began to write a journal. I’ve continued that over the years and I find that in times like this when everything is upended and you don’t know what’s happening, going to journaling, to writing and automatic writing is quite amazing. For some people it might be that they draw pictures, cook, knit... Something that allows you to externalise what’s inside you – that you don’t really know how to express in words.

Which I suppose leads us on to art and why we all want to be either practitioners or perceivers of art – because it allows us to go into other worlds. It gives us an ability to have a narrative that we can’t express – somebody else has expressed it for us.


As a critical friend to the Culture, Health & Wellbeing Alliance, what’s your sense of what the cultural sector should be thinking about during this time? Where do you think our energies might be usefully placed?

It’s about each individual; even if you’re working for a very large cultural organisation, you’re still not necessarily at your depth. But equally there are huge numbers of artists in this country who are freelancers and they don’t have that large institutional blanket. I would say communicate. It might be that you can’t help people financially, but at times it’s just keeping the line open. I was speaking to a friend the other day who had lost 100% of her earnings overnight. Other friends are having to furlough staff. I’m sure this is replicated throughout the country. Maybe at this point it’s just listening on the phone, so people are aware that they're not alone.


We’ve been talking this morning about the huge rush to get stuff online, which has many virtues, but equally there’s an awful lot of people that either can’t access the internet or don’t want to access the internet, or find it a very overwhelming space. So we’ve been thinking about offline, and analogue, and relationships, because ultimately that’s what this work with the arts and culture in relation to health and wellbeing is about – the relationships, as well as the creativity. I don’t know what you think about that?

One thing about creativity is that it’s very tactile, it’s very haptic. And at this point you can’t shake hands; suddenly our hands are being washed within an inch of their lives, but what we’ve lost is the touch of friends and family. But we can pick up a pencil, or clay or anything that we’re working with: wool, or a collage... I don’t think I’ve ever had so many push-throughs online as I have done in the last ten days and its completely overwhelming as far as I’m concerned. I think if you are going to do that you need to curate it very tightly. So that it becomes something once a week that touches all the senses, something we can get immersed in.

Again I think that there’s a change in pace – this sense of beginning to slow down. And if you’ve self-isolated over years as I’ve done, you do slow down to a very, very different pace.

Also, I don’t think I’ve ever had so many hilarious skype and video calls which have gone totally pear-shaped. The other day I was teaching a yoga class and I couldn’t see anybody! They could see me, but I could only hear them. But again that was very interesting, because they were all describing what they were doing, and I was really having to listen.

But I think it is also a time where we will get to know ourselves. It may be that some of us don’t actually like ourselves. Or we’re not quite sure how to negotiate ourselves. Well, I can tell you that when you’re locked down for a period of time, the person you really have to come to terms with is yourself. And within my tradition that’s the kali – the light and the dark – and becoming compassionate, and slowly slowing down. I’ve learnt over the years is that you become more internalised in some respects, and as you do that, you then slowly flow out into the world. It’s very much like the Jungian concept of the warrior: not quite sure what she needs, but she knows she needs to go on a journey; then something catastrophic happens so everything is taken away. You metaphorically fall down and you don’t know how far down you’re going to go, and all the threads that hold you together have all been severed. So you have nothing of your old life, and then eventually you hit the bottom. Within that, maybe at that darkest moment – some traditions call it the dark night of the soul – you then discover these amazing jewels. Which have always been within you, but they’ve been buried or you’ve forgotten about them… and slowly you begin to see these magnificent colours coming forth, and you gently pick yourself up, and you pick up these jewels, and then you climb, and you walk forth, the same but changed.

That’s why this is so powerful for the whole world. Each person will go on this journey in their own way. And that’s the joy of this, there isn’t a right or a wrong way to do it. We will not be judged. The only person who can judge us is ourselves, but I would say just be very gentle with yourself, you know? Give yourself a hug, which we can still do. And rejoice! I find it a very exciting time, which I’m sure a lot of people don’t – but good things are already coming out of it.

Going back to culture, health and wellbeing, at this point the concern for a lot of people is whether their livelihood will survive. I think it will; I think that nations as a whole will really understand that to have societies which are functioning, which are healthy, we have to look at our own wellbeing, we have to allow the art to flow into everybody’s lives – to take apart the idea that you can only go into somewhere if you’ve got a certain amount of money. One of the objectives of the LENS is to advocate for the value that creativity and cultural engagement bring to health and wellbeing through all of life's stages, for everyone. As we move away from covid-19 the LENS will be ensuring that our voice is at the centre of policy development throughout health and social care, criminal justice and wider community contexts.

I love poetry, so just before this I was rootling around and I found this wonderful quote from Rumi, which I think is very apt at this moment:

somewhere beyond right and wrong, there is a garden. I will meet you there

which I think sums it up, doesn’t it?


[Image: MS Ottoman Turkish 3. Wellcome Collection. Attribution 4.0 International (CC BY 4.0) Scroll containing a perpetual calendar with illuminated sections. Ruzname-i dairevi - astronomical tables for both the Arebi (Islamic) and Rumi (Julian) calendars providing chronological accounts of seasonal change, entry of the sun into signs of the zodiac, times of summer and sunset. The calendar is written in the style of Süleyman Hikmeti who died after 1828. Süleyman Hikmeti was Imam of Istanbul's Cedid Ali Pasha mosque and taught calligraphy at the Lali-zade Abdülkadir Efendi school.]