199 - Creativity 2025 - A Tapestry of Expression

Creativity doesn’t just reflect our lives; it reshapes them when everything else feels fixed. I close the year by handing the mic to artists, writers, and makers whose work was forged in the long shadow of Long Covid & ME/CFS —and whose voices light the way forward. 

If you’ve been searching for proof that small creative acts matter, this collection is your sign. If a line, chord, or colour stayed with you, let me know which moment moved you most. 

If you'd like to be part of next year's episode, get in touch!

Links: 

Website Creativity Page 

Join "Long Covid & ME/CFS Healing through Creativity" FB group

Kirsten Mallyon Website Substack Insta & FB 

Fiona Lehn Website

Mateo - "Covid is Stoopid" 

Long Covid Kids Choir Rollercoaster video

Paula Insta

Jasmine Laws Portfolio & Opening Extract

Gerben's documentary about grief & song video  

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

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 0:00 Host’s Year-End Creative Showcase
• 4:45 Guitar, Boundaries, And A Healing Song
• 12:18 Feline Wisdom For Self‑Care
• 21:08 Humour, Grit, And “COVID Is Stupid”
• 27:25 Rhythm And Rhyme Therapy
• 32:05 Long Covid Kids Choir: Roller Coaster
• 36:06 Beads, Patience, And Recovery
• 38:28 Grandhog Day: A Poem Of Extremes
• 43:54 Reclaiming Life And Writing Recovery

Transcript

Jackie Baxter: 1:51

Hello and welcome to this episode of the Long COVID podcast. Today is a very special episode and also the final episode of 2025. And as I have done every year since I started this podcast, I'm going to close out the year, joined by a host of talented people with their amazing creativity which has been inspired by or has helped them through some tough times. So I'm going to say very little in this episode. I know you might not believe that, but it's genuinely true. And I'm going to hand it over to my talented cast. Before I do, I would love to draw your attention to the creativity page on the podcast website. Here you'll see all of the visual aspects of the work that is described. And please do check out the links in the show notes where you can see more of these people's work. Follow them on social media or get in touch with them if you wish. I'd also love to give a mention to the incredible Facebook group that I set up again around about four years ago. And it's changed somewhat over the years and it has massively expanded. But this is the wonderful creativity group. It now has over 20,000 members, and it is the most incredibly inspiring place on the internet. It's a wonderful place for people to share and celebrate creativity. It really is the members that make the group. I'd love to make a public thanks to everyone who has been there and shared and supported each other. Also to the people who have held events throughout the year. And of course, my wonderful admin team. I couldn't run the group without them. So we have a quote on the top of the group that says do it for you, not for anyone else. If you'd like to share, then this is a safe place where you can do so. But the important bit is that you're doing it. And I think that's so true for creativity. It doesn't have to be good, it doesn't have to be perfect, it doesn't have to be finished. The important bit is that you do it. So some of the people that you will hear from in this episode are members of the Facebook group, and some are not. If this interests you, please do come and join us. I'll put a link in the show notes. I think it would be irresponsible of me not to add a little bit of a trigger warning here at the start of the episode. I have tried to remove mentions of symptoms and illness as much as I can, but the nature of this work is that it is a theme. So if you're feeling fragile today or just not in the right place to hear this, then you may wish to come back to it another time. And here we go. Let's hear from these awesome people.

Kirsten Mallyon: 5:13

My name's Kirsten Mallyon. For me, what has really been my uh saviour or my security blanket, if you will, is my guitar. And it became a really important way for me to cope. So I've written many, many songs and I sing and play every day, and I find that if I'm really struggling, it helps me so much. So I actually read an article about opera singers that have worked with long COVID patients. I thought, yeah, I I understand that because it's helped me so much. Even just the act of having an instrument. I've got this beautiful old nylon string guitar and having that old wood next to me vibrating when I play, even that really helps. And I've written lots and lots of songs, and I have just this year managed to record one. Writing and playing, it doesn't really give me consequence, but recording is another story. So that's taken me a lot longer and is harder. Still quite joyful, but it's taxing. So the song that I am really excited to share with you is the song that I've recorded this year. It's called I Don't Mind. And it's a song that I wrote about boundaries, which is something that's been coming up for me a lot while I've been unwell, but also as we know, boundaries are so difficult when you've got long COVID because there's so many things that you need to say no to, often things that actually you would love to do, but you have to say no, and you have to really prioritize. I play it to myself when I need to remember that it's it's okay to say no, and in fact, it's really important to say no. So I hope you enjoy it, and I send you lots of love. She was a shapeshifter, watching keenly for her feelings, morphing into every different disguise, face miling, concealing, she'll be kind, she'll give you everything you need, she'll be kind whatever's going on, she'll see, she says, I don't mind, I'll call over me, I'll clean up all your footprints. I don't mind, I don't mind at all Yeah, I don't mind wend over banquets until it makes me whisper. I don't mind, I don't wanna speak, can you please read what's on my mind? Cause it's hard for me to say. My feelings on a sleep and say how we kind of is everything you see.

Fiona Lehn: 11:23

I'm Fiona Lehn. I enjoy writing, singing, writing songs and playing music, and doing visual arts too. To me, creativity is essential in healing and recovery. Being creative gives me a sense of energy and flow and helps me to feel vital and alive. It helps me to enjoy my life despite limited function. Creativity also enables me to process my emotions and thoughts, which is essential for healing. The piece of creativity I'm sharing today is a book I wrote called Like the Cat: Feline Wisdom for Healing and Transformation. It started when I noticed my cat was a master of self-care, and so I started following her around as an experiment to see if it would help me take better care of myself and perhaps even increase my function. The book turned out really amazing. I had so much fun writing it, and I even did the illustrations for it. It's a lighthearted manual for anyone who wants to learn self-care and inspire health and healing. I'm going to read you the introduction to the book. I hope you enjoy. Chapter one, the experiment. 717 AM. The cat is eating at the all-day buffet, mid-level of her kitty tower, a six foot tall and three wide shelving unit with a cat-sized hole cut into each shelf. She takes one piece of kiddle kibble at a time, paw to mouth, crunch and gulp before reaching for another. I sit at the kitchen table and unwrap a protein bar. Five bites, no more. The cat is on the move. 719 AM Cathump, Cathump. She dives down two levels and creeps into the litter box on the floor. I notice that I too need to visit the facilities. I've been holding it without realizing. While the cat takes care of her business, I lumber off to do mine. 725 AM The cat is lying on the kitchen mat with her front paws tucked under her chest, hen pose in kitty yoga lexicon, eyes gleaming with expectation. My arms feel heavy and shoulders burn, but a deal's a deal. I flick the stick string thing in the cat's direction and drag the knotted twine across the rug. Her eyes follow. Her tail twitches like a rattlesnake. She watches, twitches, watches, pounce. The cat scrubles about the rug in a vital ancient dance. Pickled with envy, I flick the stick again. The cat attacks, rolls, thrashes, and in a wide-eyed frenzy, she breaks away and scampers up to the top of her tower. She crouches before the high window, only she can reach. Her lungs heave, tail spasms, and nose presses to the window, leaving moist prints on the glass, graffiti artist pose. I've seen this before. She rushes away from the game or any encounter when things get intense. She'll stop to eat or reconnect with the outer world until she calms. Another lesson to master. Play is important, but it alone should not rule me. All my needs should rule me, my needs and nothing else. 737 AM The cat gazes out her window. I stand, open the kitchen blinds, and peer out into the sky. I often leave these Venetian slats down, forgetting or lacking the energy to raise them each morning. I suppose my subconscious mind sees no point since I can't go out into the world much anymore. But this time when I raise the blinds and make a concerted effort, pale blue sky winks at me beneath brows of cotton fluffed clouds, velvety pink and red blooms glisten with dew, and birds sing into the sunrise stillness. The cat sits, transfixed by the scene, and at this moment I don't have to force myself to copy her. I want to, feel compelled to even. I drag the kitchen chair over to the window, collapse into it, and regard the world some more. Still focused beyond her pain, the cat lies down, sphinx pose. She has not a hair out of place, her every muscle seems to be at ease, her eyes alert, following movements and sounds. She exhibits dignity, curiosity, strength, and grace, the epitome of feline. I, on the other hand, am more exemplary of canine. I look dogged, I speak doggerelle, and I am perhaps trapped in dog days forevermore. My clothing, though fairly clean, is rumpled and ill fitting. My hair hasn't been washed for a week and flops about massive and muppety, though in my forties I slouch like a teenager, my torso and head propped up by the back of the chair, barely vertical. I have the agility of a zucchini, no dignity, no nothing, feline. This is the best I can do, so I do it.

Mateo Salazar: 17:16

I've been part of this ridiculous club since November of 2020. Since that time, I've lost and regained my ability to write, lost and regained my ability to speak, lost and still looking for my ability to walk unassisted. My wheelchair is covered in fun stickers, and I've come to discover that sitting in the shower is amazing. I'm incredibly grateful for the opportunity to be part of the 2025 creativity episode. Fun fact: Miss Jackie Baxter and the long COVID podcast were part of the inspiration to put my newly regained abilities to write and speak to good use. And so, with great love, I present the COVID is stupid podcast. And that's stupid with two O's, not a U. On the program, I do what I can to inject humor and optimism into otherwise humorous topics, such as meeting new doctors, navigating a public restroom from a wheelchair, our new relationships with food, or using performance-enhancing drugs to attend a weird alien concert. That actually happened. Now, more than ever, our stories are so important. The challenges we face, the new definitions of ability, the struggles with self-identity. These are stories worth sharing. These are stories that shine a light on the COVID long hauler and the Herculean tasks we somehow overcome day in and day out. My intention is to meet you where you are, remind you that you're not alone in this journey, give us all the strength to stay in the fight another day, and make sure the entire world knows that we are still here. Still here and busting our buttons every day and every day. Along the way, I can also provide some jokes or one-liners that help grant permission to laugh at the absurdity of long COVID. Then all the better. And remember that stupid with two O's, not a U. I look forward to seeing you there. I love you all. I see you all. I would hug you all if I could. Strength and health. COVID is stupid.

Baden Stanley: 20:43

Hello everybody. My name is Baden Stanley. I'm living on the east coast of Ireland. It's been an interesting journey and a tough one at times, but what I've learned along the way is the people that you meet can actually change the experiences that you have, and that's been certainly true of this group. And I want to share with you some verses from poems that I've written. I'm not a poet, I never got poetry, I still don't. So I call this very much my rhythm and rhyme therapy. Uh but it has become a lifeline which has helped me and released me to be creative and to find a sense of purpose in the midst of really all the madness. So the first uh poem I want to share with you is called The Votistic Chicken. It used to be that I could sleep the whole night through without a peep. But now I turn and dark and turn to keep the trigger points from putting deep. It used to be that I could last the whole night through without the past of thousands of thinking like that. It used to be that I would be quite consistently. I'm not connected to a team, but I can have to put it back. I used to be that I could do it, I've got to find the team. I'm stuck on this for me. I've got the things that be. I've got to learn to fucking like be. I've got a word consistently. I've also had the space and time for contemplation undefined. To open up abandoned minds, that's stories. I want beautiful by dark and things never far away. Within the world of dark and gold. Well deep inside the motion phone. Let's go for the bones. The button to the clock. Upon the top. That's what the book on the umpaco of the door over the back of the board. The lights are both the door. Don't put the colours with a dance of horse. The dunk of voice with the door to the colour. The lights are long, the toes are longer. The drop is home without the car. The water hardcore the car. As you walk us through the dark and board. The smiling face master taken off. The story is pierced by a dark and sword. Laugh out loud as a father curls. Long practice steps which have danced before. A husband died, husband dies on his darling girl, as it lights across the bottom door. As a voice fly, I need a nose. The future life comes at such a cost. Twitching off the phone, the moment. A phone switched off, a torch like towers. Dancing off the walls across the mile. And phone finally a phone for relinquish is part of the portrait corner that one uh I've been completing that for last year or so. And this is one that uh I think covers a lot of what this group means to me. Even if each day contains one thing, it lifts its own limitations to our lives of more than mere meaning. We find purpose and hope and joy thought. Hope is not just aspirational. In community, it's aspirational. The group is being inspirational. Personal is inspirational. Joy is deeper than more happiness. We can't be a victim of circumstance. We live with crap for us. As we grow, we feel about a bunch of things in the African world. We speaks of humanity absorbed. We minds of a truth almost absurd. We're not alone toward those who are. I am what I am, better by far, because of whom we together are. No one needs to be far distant stars. We're all not coping with this bizarre. Relinquishing control is very tough, constantly feeling we're not enough. Carrying scars from being rebuffed. Here we learn it's okay to feel tough. Thanks a million and enjoy your day.

Merel van der Knoop: 26:48

Hi everyone, my name is Merrel Van der knoop, and I'm the choir leader of the Long Covid Kids Choir, an online health and well-being choir for children and young people living with Long Covid, which I run in collaboration with Long Covid Kids Charity. Our lovely choir started back in November 2022 and has been providing weekly Sunday sessions ever since. In November 2024, we released our own song called Roller Coaster, which we composed in collaboration with the young talented singer-songwriter Frankie Morland. In this song, we sing about what it is like to live with Long Covid and how the choir supports us. We hope our song not only raises awareness about long Covid, but that it also reaches other young people living with Long Covid so that they know they are not alone. Thank you so much for listening to our song.

Jackie Baxter: 30:07

We've had a whole variety so far, and there's more to come. And from all around the world as well, which is so cool. My next participant is Paula from Germany. Paula says, Hi, I am Paula from Germany. For me, making my bracelets, earrings, and necklaces is occupational therapy and cognitive training on the one hand. On the other hand, I really enjoy putting together the colours and shapes, choosing them and sprinkling a little bit of glimmer on my path to recovery. I started with just a few minutes, often didn't hit the beads with the thread, had a hard time grabbing small things and couldn't concentrate. But she says, never give up hope. Recovery and improvement is possible. And Paula has sent me some beautiful pictures of some of her creations, which are on the podcast website creativity page, and that is linked in the show notes. So thank you so much, Paula. I'm so glad that you are able to be a part of this episode.

Jackie Baxter: 31:12

The next participant is Stella Taylor, who has sent in this piece called Groundhog Day.

Stella Taylor: 31:21

Days are like years with the ups and downs happening in minutes rather than months. Eyes open, Akimbo, and whoa. The feelings are there because they dare to respond to a symptom on waking. Head hurts, too bright though curtains closed, too loud, even with headphones. Everything is vibrant this morning, but my senses only accept grayscale. A respite despite the noise, and you bring me a cup of tea. A piece of gossip to remind me how normal life can be. We laugh, we kiss, we squeeze, and then you're gone again. Hitting work and doing what normal folks can do, which is everything and under. Thunder at noon, and I make it into the garden and feel the rain on my skin. To feel something on rather than in. Reminding me of when we danced naked on the scaffolding and howled into the clouds because we had our whole lives ahead of us with all the energy taken for granted. It's an I'll walk the dog kinda afternoon, stopping at every bench. It's lucky he does so many poos because it's more reasons to stop, to rest. Because when you rest with reason, it means you're not lazy. Hazy, once home. Maybe I should draw, crochet, knit, write, game, renault, garden, read, meditate, learn, clean, anything but scroll, scroll, scroll, scroll. The next few hours take their toll. In a flutter, a coulda, woulda, shoulda, and why did that fucker have it so easy? They're not a good person, but I'm a good person. Why me and why not them? And the day is done again. Earlier I laughed and cried separately and at the same time had hope and despair, memories and dreams having a sordid affair, and I have to hold all this at once at the end of the day, knowing tomorrow it will go a similar way. But I guess I am lucky to feel the extremes of life in such a short space of time, rather than drudge along, feeling nothing, fussing about the things that I used to care about, because to me now, the simplest thing can bring me so much joy. A moment pain free, a flower, an interaction, a longer walk, a kind word, a touch. I don't need much. I don't need much. Even though I still want it all and hope for the miracle, until then I will take comfort in the small things, the day to day, knowing it won't always be this way. It won't always be this way. A promise to me and to you. And once we're through, the hellscape will come out on top. Comrades. I'll see you at the top.

Jasmine Laws: 34:15

Hi, I'm Jasmine. While it's taken me a long time to get to this point, I'm extremely lucky in that I've now been able to reclaim many aspects of my life that I previously lost to sickness. I currently work as a news reporter for Newsweek, where I focus on health and health policy, which means I cover all things from water contamination to medical studies and healthcare. I'm an avid reader, love the outdoors, especially the sea, have always enjoyed sport and dance and have recently learned how to crochet. In November 2023, around three years into my long COVID journey, I decided that I wanted to write a book about what I'd experienced. Having spent years interviewing people as a journalist who had fascinating and sometimes devastating stories to tell, I found myself in need of a voice with my own story to tell. I felt misunderstood, unheard, and alone. Before I met others like me, journalism became my lifeline. Alongside building the narrative of my own story on the page, I interviewed experts in different fields of health and slowly pieced together my route to recovery. What started as essentially a massive journaling session, then turned into a narrative of my journey through sickness to recovery. The finished manuscript recently went on to win the Letter Review's unpublished book prize in the 2025 January to March competition, which was such a surreal moment because it felt like what I'd created could have an impact beyond just sharing it with my family and friends, and I'm so grateful of the opportunity to share a little segment of it with you today. I'll be reading a short extract from a part of the book when I'm living and trying to restore my health in Italy. Pressure from the edge of the rock was gently prodding my back as I lay against it. Its surface, rough like a puma stone, felt raw and earthy. Reverberations from the ocean echoed through the core of the gravel slabs, prickling my bare skin. Water sloshed in the crevices between them, thrown into the gorges by the sea and then thrown back. I matched my inhale and exhale with it. My ribs swelled as the air filled my lungs while the water reared back. The air deflated out my lungs while the ocean cymbals clashed. It was a constant cycle, the movement of water. I watched it over the top of my book, its lyrical dance toying for my attention as I grappled to understand the Italian sentences in front of me. The sun shimmered off the water's ripples and radiated under my skin, warming my soul. I longed to lie in the ocean's arms, to situate my body under the curve of a wave, anticipating the fall of water over my skin. I felt the gentle touch of the ocean as I shifted closer, noticing it tickle my feet and legs with its salty spray. The trace of water rekindled an awareness in my body, allowing me to remark in the presence of my limbs and my existence within them. In that moment I wished to be immersed in the water, where life was liquid, never fixed, but always able to transition and evolve, where no moment in time was fractured or no label or lack of defining. I had spent so long chasing a label, a diagnosis, an explanation, but as soon as I was finally given one, I felt like I was identified by the label. I as a person no longer existed. I was just the patient, the patient that didn't make sense, that had no cure, and had to just cope with life's new complications. I was fixed, stuck. Even in the absence of a diagnosis, I felt trapped in a groundhog day of relentless symptoms with no way out. Whereas the ocean never stopped its steady motion, nothing could freeze its rhythm. I was made of waves, waves of pain, the ones that started in my chest and spread down my left arm and into my neck, the ones that started in the base of my skull and swam around my temples, dripping into my eyes. I was bound to the tides, the pull of the moon. The cycle of the month lived within my body. In my body there was an ocean, made of waves, following the pattern of a tide. Perhaps this was why the ocean before me felt like my home and where I needed to be. I closed my eyes and imagined myself as a body of water, being pulled and pushed in the sea's rhythm. I wanted to be guided by its sequence as it led me in a waltz over the sandbanks. The grit would be swept under my white gown as I glided across it, its sharpness unable to scratch the surface of my watery skin. Nothing would be able to control me. No one could hold me in their hands without me finding the gaps between the bases of their fingers to escape through. My body would be able to adapt, to change, to carry me anywhere I wanted to go. I would be able to move and exist free from my solid fixed body. Free from the body that limited me, confined me, and offered me no escape. Pulling a small glass jar from my bag, I held it under the water's surface. Air bubbled up and burst at the top. When the bubble stopped, I pulled the jar back out into the spotlight. In it was the transparent body of water. Gone were the aquatic hues of blue and green, navy and turquoise. The life was gone. I was looking into the jar, and I could only see the ocean behind, not the ocean within. Its dance had stopped while behind the rest continued as if nothing had happened. To live, the ocean needs to be whole, it can never be split. No parts can be taken away and continue to exist. When a piece of it stole is stolen, that piece simply ceases to be the ocean. The blue blood has drained away and it becomes transparent, soulless. I envied the sea, the way it continued breathing so calmly, even as it grieved the loss of the part of its soul. Nothing could break its rhythm, not even the strong wrath of wind whistling over its surface. It might breathe a little faster, perhaps heavier, throwing the water more firmly at the rocks, but never stopping its simple motion, rocking back and forth. The adversities of life could never get in its way. I pushed the cork stopper into the top of the jar, tossing aside my book and sunglasses, pulling off my shorts and freeing my hair, I dived. An icy embrace revitalized the sun's lethargy. I was engulfed in a swarm of blue, with streaks of light breaking through the barricade, spotlighting the debris and seaweed twirling in the ocean's belly. Pieces of the land that, like me, were now weightless in the water, feeling the release of gravity and for me the release of my own body. The ocean had always been my home, the place I went when the world felt overwhelming. It offered me the wisdom nothing else could, that even when pieces of ourselves are lost, it doesn't mean we should stop breathing, that we should stop dancing. Perhaps that stolen part of ourselves becomes still and empty in its loss, but that doesn't take life away from what we have left. I let my body float on the surface, in the equilibrium between the ice cold water and the warmth of the sun, and imagined all my losses in a glass jar, the kind that has a corks topper in the top and fills out wide at the bottom. In this jar I pictured the parts of my body that felt lost to me and the parts of my life I had relinquished to my illness, like the lifeless water I just collected. Originating from me, they didn't define me, as that water in my jar didn't define the ocean. The ocean is blue and beautiful, not motionless and transparent. Perhaps then my losses didn't define me. Perhaps this body, the one floating in synchrony with the ocean, did, the body that brought me here to the place I felt at home, the body that had protected me and forced me to keep breathing, to hang on in the hope I would find the clarity to see all the things in life I still loved. That piece of the Mediterranean Sea sat on my bedside table for a long time, in the glass jar with some of Barry's sand in the bottom, the sand on which I'd lain as the water enticed life back into me. I left it there to remind myself that if I could love even this lifeless, lost part of the ocean, could I not also love the lost parts of myself taken by sickness?

Jackie Baxter: 41:49

So we're almost at the end of this creativity episode of 2025. I'd love to say a really big thank you to everyone who has contributed to this episode. This really is one of my favourite episodes of the year, and it's been an absolute joy pulling it together. I'll be taking a little bit of a break over the holidays, and I'll be back in 2026 with a whole host of new guests and great insights to help you with your recovery. The first episode of 2026 will also be episode 200. So I'm not quite sure how I feel about that, but I'm going to work that out over the next couple of weeks. So before I allow my final guest to introduce himself, I would like to wish you a happy holidays, whatever you're doing, whoever you're with, and I hope that you are able to find some rest, some peace, and a little bit of joy, whatever it is that you're doing. Take care, and I will see you in 2027. Thank you so much.

Gerben G van Dijk: 43:07

My name is Gerben G. Van Dijk. Art and creativity have become my medicine against the powerlessness of the grief and the lack of understanding. Using my creativity helps me to turn my feelings of frustration and powerlessness into hope. Also, I made a documentary in which I give space to grief with music I created using suno.com. This AI tool offers a safe place to express one's emotions. Perhaps it might help you as well. I made a three-minute piece of music filled with comforting words and sound. Now, please take a listen to this short three-minute piece of music. And please do realize that you are still alive and that you can experience joy. Your existence does matter.

Song: 44:18

Whispers the forest while I am awake and awesome. Under a pruding of leaves cold and down. A lost day. One breath at the same time, I think. Thirty seconds for a start. I roll a glimpse of force deeply deep inside of me. Even though fate feels unfair, you'll find your path shy as through. Let the truth now and alone be your destiny joy. Even if you walk stripped and naked, shivering down the garden path with fragile branches breaking softly. Beneath your faltering wef echoes from your pastorized and present, tearsful, heavy eye that wanders softly through your arms and slender flowing streams, where sunlight dances loftly glints and warmth, igniting tender skin, and you awaken knowing well. Who truly stand beside you of the truth now and alone be your destiny? Enjoy, joy. You are a love, you are in love, the forest we're supposed to be. I gather strength facing the storm and dream of walking free. Even though faith feels affair, you'll find your past right. So soft. They say you are never lost. In the dark, they strongly lift me on their furry claws, feel so comforting, floating mid-air. I scream joy, that cough and feeling falls off. The sun returns, she glares through the trees. My hope revives, I float free, embraced by softness, frightenedly. I am just everywhere.