158 - Creativity 2024: Transformative Stories of Resilience and Connection Through Art

Discover the power of art through stories of creative expression while navigating Long COVID & ME/CFS. Anna finds clarity through free-flow writing & Emma's journey with poetry & digital painting offers hope amid adversity, highlighting how art can foster resilience & personal growth

Olga's online "hibernation sessions" forge community bonds even in isolation. Sally shares how rediscovering her passion for art became her anchor, turning her creative endeavors into advocacy for others. Sarah finds peace & joy through sharing watercolours, and Jade through her new skills of crochet

The Long Covid Choir proves that harmony can be found in challenging times. We celebrate the resilience of human spirit & healing power of creativity, reminding us that art can be powerful in reclaiming strength & identity

Visual art on creativity page

Anna Bell website
Emma website & book "Dormiveglia"
Sarah's Folksy Shop
Sally Hartshorn (inc art exhibit)
Long Covid Choir website VIDEO
Olga Hibernation Sessions
Jade Insta Youtube FB &

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 0:56 Healing Through Creativity
• 10:18 Finding Hope Through Adversity
• 18:04 Embracing Creativity Through Adversity
• 35:36 Finding Solace in Song

Transcript

Jackie Baxter: 0:57

Hello and welcome to this very special episode of the Long Covid Podcast. Today I am going to be joined not by one guest, but by several, all of whom are here to share their fantastic creativity. So we've got a wide array of people who have done painting and poetry and writing, also some music, and some people who have done more than one of those things. I've done this episode every year. This creativity, because I think it is so wonderful to be inspired by people who are using creativity to help them to process things, as a means to help them to calm themselves, for mental health, a wide, wide variety of things, as well as potentially bringing them together, for example, the choir. Why is this important? Why is this important? So many reasons. With conditions like long COVID and ME-CFS, we can feel so isolated, we can feel so disconnected, and creativity can be a way to calm ourselves, to process things, to connect with ourselves, to connect with others, to take us out of our own heads, to get into that kind of flow. And it doesn't matter how long you do it for, whether it's two minutes or two hours, it doesn't matter if it's good. You know so many people judge themselves on the quality of what they do and think with creativity certainly here, but actually creativity generally it's not so much about what you do, it's doing it in the first place. So I hope you enjoy this episode. It brings tears to my eyes as I put it together. You enjoy this episode. It brings tears to my eyes as I put it together.

Jackie Baxter: 3:05

And all of the people who have contributed will have links to their social media, their website, anything they want to share in the show notes. So please do go check that out. And anyone who has a visual component to what they've shared their work will be on the creativity page on the podcast website, which will also be linked in the show notes. So please do go and check out the art and anything else that these people have shared. If you are interested in joining the long covid and me cfs healing through creativity facebook group, there's also going to be a link to that in the show notes, and this year we've really expanded with all sorts of events and it's been really, really fun. So, without further ado, I am going to get out of the way and let you enjoy everyone's wonderful creativity. And a final word there might be something here that may be triggering to you, so please take care of yourselves, and if you need to listen to this on a different day, then please do that. So here we go.

Anna Bell: 4:14

Hi, I'm Anna Bell and I've loved writing all my life. I have an early memory of a jotter which my gran bought me one Christmas, and the pages were filled from front to back with writing and I had written with a pen and been so enthusiastic through every page that the pages crackled as I turned them over. And now I can't remember much about what I wrote about. I think it was about my experiences and I just loved being in the flow of it, which has led to a way of writing now which I would describe as free flow writing, and that is certainly not about being perfect. It's about writing whatever comes to mind in a way that associates with things that you want to think about, like things that are good in life or nature, through the senses, that type of thing, so that you absorb yourself in it. And I certainly have found that helpful to the point that I've written a book and I write meditations and things like that, and I've written a lot of blogs as well, and that free flow style, and particularly the expression of it, seems to have the effect of getting in touch with myself. What's important in my life, life, what is there that could be attended to right now? And just generally feeling back to being centered and balanced, and whether it's been in in good times or challenging times, I've always found it to be therapeutic and have some kind of shift of energy as well, even just lightly and gently and it's not about forcing an outcome Like I would encourage you to pick up a pen and just write whatever you want to write about today. It might be the view out the window, it might be something that's a nice memory, it may be family time or something to do with your friends or a place you've been, and that's what I did in the piece that I'm going to share today, which was inspired by a trip to the Wild Pacific Coast, the west coast of Vancouver Island, and being really deeply in nature, and it naturally led me to be so present with myself that it really changed something in the way that I noticed things and certainly in how I express them as well. I felt called to bring together my thoughts and feelings and the incredible range of wildlife that we were there to see without disturbing it in any way, and that is also in the book, and so for that today, I hope you enjoy that and the rest of the podcast, and thanks for listening.

Anna Bell: 7:19

This is called A Wild and Mindful Life by Anna Bell.

Anna Bell: 7:25

A journey of 10,000 miles planes, trains, automobiles, boats and a cable car to arrive in this wild and beautiful place, facing out over the Pacific Ocean, feeling the rhythm of the waves, watching the surf for endless hours, day and night, mesmerized by the beautiful rise and fall of the water. And now and again, a visit from the wildlife whose land we have invaded, sitting still so as not to disturb them. Eagles soaring and swooping with a flash of white feathers on their heads and tails, a majestic wingspan over six feet wide, a bear bumbling its way happily through our back garden, finding its way back to the lush forest. It came from Two hushed cries of delight and paused breath, while we took in the sight A graceful deer exploring on the rocks just a few feet away, disappearing for a short time, then returning with her newborn fawn.

Anna Bell: 8:44

A privilege to share the miracle of new life, urging little legs to find their strength, clattering clumsily on the rocks and being honoured by daily visits right past where we were sitting, both of them becoming more and more steady and trusting as the days passed, being startled by the high-pitched twittering and swift movement of a hummingbird, hovering briefly to drink in the sweet syrupy water in the bird feeder.

Anna Bell: 9:11

And then many more followed with wings, so fast. They were a blur, yet the bright metallic green of their feathers was still and shining. Yet the bright metallic green of their feathers was still and shining, watching a humpbacked whale as her glossy back arced through the water and the gigantic graceful tail following, slowly, an experience of a lifetime to be in her presence. I have never felt such awe and wonder of being alive at peace, in stillness, noticing every drop of rain and whisper of trees, sensing an eternity as well as a single moment, feeling strong emotions and connection with the people who have lived here for thousands of years before us, humble and gracious about preserving their lands and oceans and all the life they hold, and I'm so thankful to bring all these experiences with me entwined in my roots and branches and the air I breathe, to remember forever.

Emma Major: 10:19

Hi, I'm Emma Major. I'm an artist, a poet, a blind wheelchair user and I live with long Covid. I've written poetry ever since I was a child. That form of creativity was basically my form of journaling, and I used it all the way through my teens and into adulthood. I only started painting as a way of coping with my increasing disability about 10 years ago and realised it was fantastic for my mental health. Then, when I was discharged from the hospital having caught Covid in late 2020, I was still bed bound. I didn't really recover much over the next few months and eventually I was told I had long Covid. It was then that I learned how to paint digitally using my iPad. I started painting as a way of illustrating my poetry, and this resulted in a book of poetry about living with long Covid called Dormoviglia. Yeah, I'll make sure there's a link put, because you're never going to spell that. It was my long Covid consultant who read some of my poems and encouraged me to find a publisher.

Emma Major: 11:26

Two years on, my painting has taken on a life of its own and, although I'm able to sit in my wheelchair for a few hours a day, on an average day I paint digitally in bed or on the sofa, allowing poetry to develop. At the same time, I'm lucky enough to be exhibited around the UK and to have books of poetry and art published several times a year. I've got some things from a brand new series I'm creating called In Pain, which tries to express what it's like to live with mental or physical pain or both. I hope you enjoy them. Mental or physical pain or both. I hope you enjoy them. If you'd like to connect on social media, then you can find me at emmuk74. Again, there'll be a link. And I have a website which I try to keep updated, which is llmcallingcom, and again it'll be linked thepaincrawlingcom, and again it'll be linked.

Emma Major: 12:29

The pain crippled her morning, noon and night, tormenting her every moment, determined to win the fight, the fight she never chose, didn't even know existed. Yet one day she woke to find to this battle she'd enlisted, the battle was with herself. She slowly came to find Payne could not be beaten. What a criminal mastermind. There was no other choice. She had to keep on going. She turned her back on war, the future, without knowing. Could she find a way to negotiate a peace? Would Payne accept a deal to give her some release? She tried to understand the issues that pain brought to offer some solutions, but it all came to naught. Running was her only option, yet no option at all. Her legs wouldn't cooperate. She'd fall and fall, and fall. Yet she kept on trying. Each day a new attempt, mediating agreements, no option exempt. The pain slowly retreated In the background. It remained still a constant presence, but in a box contained. The war with pain was over. They lived an awkward peace. There never was surrender, neither found release. They gained an understanding, a way to co-exist. She listened to pain's needs, wrote up quite a list then focused on the future, a way to thrive again. She found a way of living her best life despite the pain. Her best life despite the pain.

Emma Major: 14:04

Pain is irrevocably in love with the dark, taking advantage of the long silent hours as dawn breaks. Your words are a light in that dark, lightening my heavy heart. Then, when the dam of grief breaks, you pull me from the water to safety again, reminding me that I can still fight, though it's also okay to accept what will be On the days I long to hibernate. You whisper conversations into the void, and when yet another night approaches, you whisper a light of hope in the dark. It may feel as if everything is changing, ending dying.

Emma Major: 15:00

But despite the fear and anxiety, amidst the grief, there is always hope. It may be only a glimmer, a blue sky on an autumn day, a kind word along the way, but when we let these moments simmer, they start to grow from a speck of light into a glow that warms the heart, reminding us that change may be hard. But in that journey there is positivity. Even when it's out of sight, it still shines a light when days feel never-ending, with far too many variables leaving your heart in a shambles. Many variables leaving your heart in a shambles. Stop and remember. The map of life is still being drawn, full of adventures yet to be glimpsed. Valleys and mountains draped with dreams are glistening just out of sight. Now is the time to hold on to future promises, lifting your eyes above the current plight.

Olga Baron: 16:47

Hi, my name's Olga. I've been a musician and music teacher for a long time, so music has always been a big part of my life, but since becoming unwell, it's been hard to play music and go to gigs. Some of my musician friends organised an online concert this autumn and it brought me so much joy. I've been part of a large online community of people recovering from long COVID and I wanted to be able to bring some of this joy to them too. Thus formed the idea of the hibernation sessions. I invite musician friends of mine to play concerts for us on Zoom and invite my online community.

Olga Baron: 17:26

What I didn't expect was that the concerts would appeal not just to people who were unwell, but to people who lived in more isolated communities or found it difficult to leave the house because of their age, or people who just fancied tuning in to a really great free concert. It's been a lovely way for me to connect with family and friends across the globe and other online music communities, but, most importantly, to offer a gift to anyone who is in a similar situation to me A small reminder of the kindness in the world and the good we can do for each other, even in limited circumstances. The hibernation sessions helps me feel proud of who I am as a human, even if I can't do the things I once did. It's really empowering for me to have a project to work on, emails to check and a reason to have positive interactions with people. When you get ill, it can feel like you lose everything, so it feels great to reconnect with old friends, make new ones and do something positive. Being involved in organising concerts makes me feel like myself again, and that in itself is very healing. So far, we've had a klezmer violinist, an Irish folk trio and an English folk singer play at the sessions. The concerts are free, but I ask for donations for the musicians, but only if people can afford it. There's no obligation to pay anything. It feels nice to help people when I'm so reliant on others for many of my needs.

Olga Baron: 18:52

At the moment. Life has its strange paradoxes. I may not be able to leave the house much, but I can still organise an international concert series. Thanks to popular demand. There will be a new season of concerts in early 2025. Check out the links in the bio below to sign up. I miss playing concerts. I'm not well enough to do one yet, but watch out for my first concert, which will be on the hibernation session sometime next year, and know that when it does happen, it will be a big milestone and a great reason for celebration.

Olga Baron: 19:24

You are all invited For now. Here is a taster of what to expect. For now. Here is a taster of what to expect. I thought long and hard about what to play and I thought, god, I've got to play something really meaningful or something related to health, and I decided that was too much pressure. So I'm just going to play a song that has brought me a lot of comfort and joy. It's called the Lounge Bar and it's written by a Norwegian fiddler about a bar in the Shetland Islands called the Lounge Bar, where they have trad sessions.

Mystie Brackett: 22:53

I have been painting probably for about 16 or 17 years and for almost all that time I've been lucky enough to have a group of people that I paint with once a week. So I'm used to painting in a group and I'm what's called a process painter, in that I am just with what's happening in the moment. I don't know what I'm going to paint, I don't pre-think about it or have an image or something in mind. I use painting and art making to process my emotions, so sometimes I'll come in with a certain emotion. Sometimes I'll just pick certain colors or something that I've seen in the last couple weeks inspires me. I sometimes include quotes, I do multimedia things, so I use paper, I use plastic, I do photo transfer, so sometimes there's a photographic image in my artwork.

Mystie Brackett: 23:53

And what art does for me is it helps me get in touch with something organic and primal in myself, like time disappears or I experience time in a different way when I'm creating art and something just flows between me and the canvas. So it it doesn't feel like ego I is making the art. It feels like something greater than myself sort of comes in, because sometimes I'll get the message to use a color that ego eye doesn't particularly like, but that's the download and I respect the downloads. So I would encourage any of you that have the capacity just to get some art supplies. It doesn't have to be expensive, it doesn't have to be. I don't buy really expensive paint or canvases and just start creating, start putting your hand to it, in it, on it, you know, knitting clay, arranging flowers there's all sorts of things you can do. But just some experience or expression with color, I think is really, really helpful. I love making art, and love to all of you.

Sally Hartshorn: 25:24

Hi, my name is Sally. I'm a retired nurse and an artist. Prior to COVID, I was very active. In fact I was so strong. My husband referred to me as his industrial grade woman. We hiked at least two to three times a week. I was making art, writing poetry, taking music lessons. And then COVID hit. I had given up my art. I didn't hike anymore. No more music lessons, no more Spanish lessons.

Sally Hartshorn: 26:00

As soon as I started feeling better, I decided to make art. I put my headphones on, I played some music my nephew had composed he plays guitar and writes very good music and I started making an art piece. All I could think of was how I had been gaslighted by so many people and I became very angry because when I was a nurse, I worked on a clinical research floor in the Harvard Medical System and took care of many patients who had complex health problems with no known cause and no known treatment, and they were getting a lot of health care. I sort of went into a trance and poured my feelings into my artwork. I completed a piece called Warriors. It's one of my best pieces. It has been featured in art showcases and gotten a lot of really nice feedback. I was amazed at how therapeutic it was to pour all my feelings into creating art.

Sally Hartshorn: 27:42

I decided right then and there I was going to become an advocate for Long COVID. I contacted a local art center and we have decided to put together an exhibit that features artists who have long COVID and they will tell their stories through the art pieces. Instead of an artist's statement. They will have a story of their long COVID and there will be a speaker who wrote a book about creating art when she had long COVID and a doctor who has long COVID will be speaking. When I was sick with COVID, I felt very, very fragile and very vulnerable. Transitioning into being an artist who is also an advocate has made me feel very empowered and it is so much fun.

Sarah Johnson: 28:52

Hi, I'm Sarah and I think I've been living with ME for most of my adult life. Stubborn as I am, I was still determined to work, as I loved my job as a head teacher of a vibrant but challenging school, and I was good at it too. However, by 2014, my body could cope no longer and I was bedbound for six long months. My husband was amazing, nurturing me back to life. The last 10 years have been slow and painful, and I've had to grieve the me that I once had, the life that's been lost and the dreams that I held on to. The life that's been lost and the dreams that I held on to, I think for me, in the stillness of bed, I was able to honour what the reality was and to begin to explore creativity through writing and crochet. Then, during lockdown, when I was getting very bored, my hubby came back with a set of watercolour, paints, paper and brushes from a local discount shop, and from that moment I've never looked back. The key for me was to embrace the cost. So at first, before I started, I would say the equipment would cost me a pound, for example, less than a coffee. So if I want to throw it in the bin, I can, and that gave me an enormous amount of freedom to experiment and really enjoy the process.

Sarah Johnson: 30:27

Watercolour is a fantastic medium for me, as I have moderate to severe ME, which means I'm housebound for around 90% of the time. I need to rest a great deal and therefore in between washes I lie on my daybed and wait for my body to be ready to do the next bit. Painting to me is like a ballet of paper, paint and brush dancing over and around different rhythms and tunes to produce unique pieces. Timing and patience in watercolour is everything, and I love watching the paint mix and dance on the paper. I love to capture some of the spaces I loved the beach, the hills and painting can take me there. It's freeing and life-giving.

Sarah Johnson: 31:21

Recently, I've opened my online shop. As, with limited energy, markets and craft fairs are extremely difficult to attend. Sending off my brown, paper-wrapped parcels of joy across the globe brings me such joy and fulfillment. I'm continuing to journey in my creativity, trying out a YouTube reference space where people can watch longer process videos and that's a place in development and I'm also hosting some online Zoom paint with me type sessions, which are lots of fun. Painting and creating gives me hope and a purpose in life. It brings connectivity to what was and hope for what might just be. Working with my body rather than against it has allowed me to rekindle that sense of joy and hope for the future. It might not look like I hoped it would, but actually it's so exciting and interesting to put paint to paper and see where that creativity might lead. So I would encourage you to give it a try. It doesn't have to cost a fortune. You can even do it in a sketchbook from your bed, because I do Just do it and watch the colours dance together on the page, creating enchanted moments.

Jade Alexander: 32:54

Hi, I'm Jade and I've had long covid since december 2023 and in june this year I had to stop working and things were getting really bad. It was a very difficult decision to close down my business, but it's helped me focus on recovery. I've had a lot of trouble concentrating and due to all these horrible migraines and pressure in my head. A friend suggested learning to crochet, as it's a new skill which helps get new pathways made in the brain, but it's not too taxing. So I learned to crochet and, after some struggle, tangles and cute mistakes, I'm now able to make bags and animals, ghosts and bats for Halloween. Friends are requesting them and now I'm just finishing a pair of gloves for winter. There are so many free patterns out there and things to make. You just need cheap yarn and a set of needles.

Jade Alexander: 33:41

I've always been creative, as it's part of being human. Humans have told stories around the campfire since the dawn of time, painted on rocks, etc. Etc. I think expressing yourself and your life is so individual. There is only one of you, so only one of your type of creativity. I've used this time to slowly explore more of my creative side with, like painting and crafting and crochet hopefully not putting too much pressure on myself and it's given me something to look forward to each day. My previous work was in the film industry, so I also started my own YouTube channel to give me a creative outlet to help others with long COVID to learn more about my situation and stay within my industry despite my current sabbatical. My channel is called Living with Long COVID Jade and I'd love you to check it out. Expressing my creativity helps me keep a positive outlook, helps me keep learning and contributing to my growth and journey in life.

Jackie Baxter: 34:39

So thank you and stay creative we're almost at the end of our 2024 creativity episode. Before our final item, I just wanted to take this opportunity to thank you for listening, to thank you for your support of the podcast this year and for the last three and a bit years. It has been my genuine honour to put out these episodes and to speak with so many wonderful and amazing guests and amazing guests. Whatever you do over the holidays, whether you're celebrating or not, I hope that you're able to find some peace and some connection and a little bit of joy, whatever you're doing. So the Long Covid Podcast will be back in 2025. And here is Merel to close us out with the Long Covid Choir.

Merel van der Knoop: 35:43

The Long Covid Choir was formed in March 2021 by peeps in the darkness, to others living with the debilitating effects of the condition, to others living with the debilitating effects of the condition, accessible even to those who may be housebound or bedridden. Our friendly and informal weekly online sessions have been good for our hearts, lungs and souls. We meet every Wednesday at 7pm, uk time, and we sing a variety of musical styles. There are no auditions, no singing experience is required and there is no need to be able to read music. Singing together has brought us joy and friendship as we navigate the life-changing experience of long COVID, and we are so delighted to share with you our latest recording of a song that we have been practicing during our sessions.

Merel van der Knoop: 36:48

The song is in German and the German text is as follows Alles schweiget, alles schweiget. Nachtigallen locken mit süßen Melodien, tränen ins Auge, schwermut ins Herz. The English translation is as follows All is silent, all is silent. Nightingales draw with sweet melodies. Tears in the eye, heaviness in the heart.

Merel van der Knoop: 37:32

Thank you for listening to our song.