Episode 65 of the Long Covid Podcast is a wonderful collection of creativity inspired by Long Covid, from children to adults and all across the world. It's an inspiring listen as these talented people tell their own stories and perform their own work.
If you're inspired - please get in touch - I always love to hear from you and do join the FB group - link below.
Long Covid Choir - "When we sing together" by Vicky Jacobs (Sound engineer Nick Westoby)
Julia's plants & artwork - see the Long Covid Podcast Creativity Page
Colin Pidgeon - "Stormy" (Follow Rosie on FB & Insta)
Zara - "Thank you" music video
Janne Cecilie - "Long Covid" & "I'm so tired"
Tabi - "You are not alone" collaboration reel with Rosie Pidgeon (hear Rosie speak in episode 61)
Carol Barwick - "Choose Joy" "Long Covid is a frenemy" & "A Chronic Christmas Plea"
Long Covid Kids Choir - "Winter Fantasy" by Jill Gallina
Long Covid Kids website
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Jackie Baxter 0:00
Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, www.longCOVIDpodcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to please consider supporting the show using the link in the show notes. If social media is your thing, you can follow me on Facebook @longCOVIDpodcast or on Twitter and Instagram, both @longCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback. please do get in touch through any of the social media channels or email longCOVIDpodcast@gmail.com I really hope you enjoy this episode. So here we go.
Hello, and welcome to this episode of the long COVID Podcast. I am really excited to be doing another long COVID Creativity episode. This is a wonderful collection of people who have, or have been affected by, long COVID and have made something beautiful out of something horrible. Whether you yourself are a creative or not, I hope that this collection of talented individuals will bring you some joy or something helpful.
If you are a creative or find support and enjoyment through creativity, do come and join the long COVID support and creativity Facebook group. There's a link in the show notes and we'd love to have you. Any visuals and links will be added to the creativity page on the podcast website which you can access at WWW.LongCOVIDpodcast.com or via the link in the show notes. So without further ado, I will let Merel introduce the first item.
Merel van der Knoop 2:07
Hello, everyone. I am Merel van de Knoopfrom the long COVID Choir. The choir and I are delighted to be part of another creativity episode. So thank you, Jackie for inviting us. The long COVID choir was established in April 2021 by Zoe Challenor and Claire hastie, and this was in response to them having long COVID. And the idea of wanting to do something positive that brought people together.
The choir meets online over zoom every Wednesday evening. And during the sessions we of course sing generally on mute, which is great for people who are perhaps less confident about their vocal abilities. But we also do gentle breathing exercises. There is some mindfulness and we laugh and chat. The lovely thing about this choir is that there are broader social and well being benefits. And as a result, some strong friendships have been formed. In addition to this, my aim is to create a safe space where everything we do is Invitational. So if participants want to take a break and just want to listen then that is absolutely fine.
My own journey with acquire started at the end of April 2022 when I joined a few sessions as a participant and not long after I started leading the weekly sessions, which has been and still is one of the highlights of my week. I absolutely love connecting with people through music and the choir's reach has grown far and wide with people joining us from not only the UK, but also the US and Germany and even South China.
The song you're going to be hearing is called when we sing together by Vicki Jacobs. I chose it because of the powerful lyrics which I felt suited the choir. When we sing together we can change the world for better, you and me side by side, note by note, song by song
Long Covid Choir 4:32
*song* Stop! Where you are. Just look around now, Breathe it in. Stop! Where you are. Just take a moment, Look at what we’ve got, When we sing together We can change the world for better. High. Low. Each voice contributes to our symphony. Unison. Harmony. Choose your own adventure. Come and sing with me.
My name is Julia, I live in Connecticut in the United States. I am a teacher and a mother. And I was an avid runner until my family and I got COVID back in December of 2020. And my COVID was the worst - my two sons were pretty much okay, my husband was a bit sick. But I actually ended up in the ER because of my severe chest pain, although they cleared me and sent me home. But I couldn't return to work. And I almost felt like I was sent home to suffer on my own.
And I found some long COVID clinics and some doctors who listened, some who brushed me off, but no one could really help. There's so many unknowns with COVID. And it was hard to find answers. So I did try supplements and different medicines and acupuncture, CBD oil, which I felt helped my chest pain, the Chi Gong was super helpful with my mindset. I tried breathing exercises and stretching and pacing. And all of this helped a bit. But I was so sick. And it's so scary and lonely. And the unknown was just really hard. And so I realized that the best thing I could do was keep my mindset in check. Because when I felt more down, I felt worse.
So there were two things that I wanted to share that I do think helped me keep my mindset in check and bring me some peace and calm. And that was caring for my plants, and drawing & painting. So I've always had a deep love for the earth and for nature. And I've always had houseplants and prior actually to getting COVID, in the Spring and Fall of 2020, I was collecting seeds from around my yard, from my friend's yard, when their plants went to seed. And so in the end of the winter, in the spring of my long COVID medical leave, I planted seeds both inside of my house and outside and I propagated my plants.
So I wasn't able to run. And I couldn't really go for walks either although I can now but I would kind of just walk around my house and we live on about a half an acre. And I would just really like watch as the season changed from winter to spring and watch leaves and little plants peeking up from the ground. Meeting the sun their leaves unfurling, I would watch the plants grow, which is kind of ridiculous to say but it brought me such calm. I would propagate plants inside I would watch the roots grow in water, I would arrange my plants by the windows make them look pretty. And I just found that surrounding myself with this growth and nourishing the life of my plants when my life felt so fragile. It helped me to put one foot in front of the other.
So I would work with my plants and be with my plants and then I would also do some drawing or painting. I'm not like the most talented, but I have found that I can gain inspiration from what's around me and so I had a goal of making a gallery wall in my dining room and framing some art and and I decided to add to some of the art on my own. So every day I would take care of my plants, I kind of walk around and observe them and then do some drawing. And I do think it helped. I really think it did help to keep my mindset in check.
I am back to work now, but I'm not yet running. And I think I've learned a lot. Long COVID is terrifying. It's lonely, it's painful. And there's so many unknowns, but I have found that life is unpredictable. We never know what threshold we may cross over into the next moment. And so all we can do is really control our response to this unknown. And I have found that my plants and this drawing does help to bring me strength, and calm and some power in this unpredictable and terrifying yet awe inspiring and beautiful earth we find ourselves on. So I wish everyone listening to this well, and I thank you for listening.
Jackie Baxter 11:11
And as I mentioned before, you can see examples of Julia's plants and her drawing on the creativity page on the website.
You might have heard episode 61 where I spoke to fabulous Rosie Pidgeon and Colin, her wonderful dad. And if you haven't, I'd recommend that you should. Rosie is a very talented young artist. And this is a poem that Colin wrote and read at Rosie's art exhibition opening recently. The exhibition is called "I am still here" and is in aid of long COVID kids. This poem is called "Stormy."
Colin Pidgeon 11:44
I wrote this one, I was kind of cross at the time because I've read something on Facebook or on Twitter about a child who had been at the hospital. And the doctor had seen it and said "it's all in your head. It's anxiety." So this was a response to that, and it's called "Stormy."
When COVID came, they closed the school gate. But that is not why I cannot think straight. Yes, I am anxious. But you don't want to hear that is not from the fear that my brain isn't clear. Like everyone else. Yes, it gave me a fright. But no, that's not what my breathing is tight. My bloods full of clots that you told me it's not. They cannot be there. They're not in your book. So you close your mind. You won't even look. The tests are all normal. You're out of condition that causes the headache with no intermission. you're young you're recover. You must open your eyes. It's because you miss maths that you now fear exercise. So I sit in my wheelchair, heart racing, mind stormy. Wondering why do my doctors abhor me? What have I done to deserve the contempt? Should I acquiesce when they do not attempt to seek out new ways to explore this malaise? Before this I ran, I danced and I sang, read books did sums lived life had fun. Now my muscles are wasting. I don't eat un-tasting. Is it in my head that my tastebuds are dead? The ring in my ears, the 1000s of fears. The symptoms are not due to abnormal fears. The mutant bat virus invaded by brain, you say it won't harm me to get it again. It will build my immunity, you say with impunity. But I say you're wrong. That cannot be right. It's so hard to see that here by the Gaslight.
Hello, my name is Zara and I am from Vienna, Austria. And I am now 17 years old. When I was 16 my long COVID journey started with a various of symptoms like metonic tics, extreme extreme exhaustion, and I even temporary lost the complete function of my legs. I was also diagnosed with PoTS & PEM. And one of the most frustrating things for me was that I wasn't able to join my friends anymore and any fun activities that they were doing. Because I was just too tired and I just couldn't manage it.
And if that wasn't bad enough, like it was already bad enough that I wasn't able to join them. But they also didn't understand why I couldn't - they thought I yeah, I should just push myself like Oh, basically, yeah, push yourself and it started getting pretty nasty between some friends where they would accidentally call me from birthday parties and they just didn't understand that and at the time I was for me I could only see one friend, like more than one friend was just too much for me like I couldn't handle that. They didn't understand it and they didn't want to understand it and So even though I lost friends during my long COVID journey I also made new friends and I built up new friendships and my family and some friends really supported me through all this.
So the song I wrote I didn't want to focus on all of these negative aspects and all of the problems but more turn it into a little something more happy and be thankful for all of the people that supported me and yeah, that's why I wrote the song it's called Thank You and it is just a thank you to everyone to my school to my class - my class played a big part in my recovery as well and also helped me record the song as well as my teachers and so thank you to family, friends and classmates and teachers and yeah, here's my song
*Song* Everyone goes through rough times. Everyone goes through a dark path, but there are always people there to stand by your side. They will help you through anything. They will always be there no matter what is going on in your life, these people help us grow. Thank you to the people that were there, thankyou to the people with which the sun was able to be seen, making it a masterpiece. Without them nothing would have been possible, moving on wouldn't have been possible, with these people the rain was impermanent, the sun would soon seem, without them we would be stuck in a storm, waiting for help to come. Thank you to the people that were there, thankyou to the people with which sun was able to be seen, making it a masterpiece. Thank you to the people that were there, thankyou to the people with which the sun was able to be seen, making it a masterpiece. Never lose hope, never lose hope, never lose hope, never lose hope. Thank you to the people that were there, thankyou to the people with which the sun was able to be seen, making it a masterpiece
Janne Cecilia 19:10
Hi, my name is Janne Cecilia. I'm also called JC and I live in Norway. I got COVID in February 2022. And I officially got diagnosed with long COVID in May. It has been a very bumpy ride. And in August, I was commuting on the way to work. And I just sat down and wrote some of my thoughts because this was a day where I really shouldn't have gone into work but stayed at home resting. And those thoughts turned out to be a poem and that poem. I'm going to read it today. And it goes like this.
Long COVID makes me feel like a falling leaf from an autumn tree into a void of uncertainty restorative yoga, rest and pacing, isn't that exciting. But without it, I'm not thriving. Drowning in chores, laundry and workmakes me want to go berserk. Scream, cry and bang on the wall is what I want to do. But I continue to fall. The trees bear one running tear down my naked cheek while I continue to climb as they speak, climb the walls of recovery, avoiding crashes and fighting toughly until one day when I feel like my old self. Now, I feel like the old me is stored in a hidden bookshelf. I feel like an impostor and a failure. While my body shows misbehavior. Until the day of recovery finally comes, I'll try and rest without getting stressed, and do my best.
The second poem, I actually wrote in a middle of a crash, I was very tired, in bed and frustrated about it all. So I just grabbed my phone and made a little poem. And the poem actually has a name. It's called "I'm so tired," and it goes like this.
I'm so tired of pains and no gains, of living with hives and lies. You'll say, Get better soon. You'll think I'll be, I'm all out of spoons. I'm so tired of being lost and forgotten. Maybe even a tiny bit rotten. My life is resting and pacing. And God forbid, no racing. I'm so tired of long COVID ruining the life I knew. This new lifestyle is not my favorite brew. People are busy living their life of fun. While I am stuck in bed with a messy bun. I'm so tired of fatigue and forgetfulness, to try and get my head into mindfulness. Pushing and crashing hard into PEM, is not really winning at gym. I'm so tired of living life on hold and not doing all that I'm told. My body is unrecognizable. Long COVID really is not advisable.
These were my two poems. Thank you so much for having me on this podcast.
Jackie Baxter 23:26
This is Tabi who is 16 and has endured long COVID for 15 months. She is spending a substantial amount of time at home and decided to put some of her limited energy towards writing and recording this song to help raise awareness of the long COVID Kids charity and educate people on long COVID tabi felt inspired by Rosie Pidgeon's impactful art exhibition so decided to collaborate with Rosie to create something that can allow their voices and many others' to be heard. There is a link to the video reel she created in the episode show notes. And here is the song
*song* Hello, I'm over here. Why can't you hear me calling out for help? Hello. I'm over here, screaming S O S at the top of my lungs. But you don't care, you tell me it's all in my head. The whole thing is fake. But I know it's real. I'm aware that you don't care, but put some effort in. I'm missing education, missing hanging out with friends. I'm 16 without a life and nobody even cares. I don't have the energy to be the person I want to see. I don't have words to describe how lonely I feel. But this isn't the end. I'll keep fighting for my voice to be finally heard. I know that it is hard, but take a look at how far you have come. You are not alone. You are not alone.
Carol Barwick 25:38
Hi, I'm Carol Barwick. I've had long COVID for about two and a half years now. And it's been completely life changing. I run a business called Raise which is about raising self esteem and confidence. And through my creativity and my faith, I've managed to keep my own self esteem going as well as other people. I'm really pleased to be part of this podcast and share with other creatives like myself, who are keeping ongoing despite all the things being thrown at us. Enjoy listening.
Pizza, and parties, podcast requests, dishwasher beeps, head needs to rest, phone calls appointments, and dizziness spells. Want to be Christmassy. Want to be Well, Facebook and feelings. Eyes want to close? Coughing - intentions what good are those? How can my poems cut through at all? Want to put lights up? Want to not fall? Tension, attention, cards, words, meows, brain fog, the black dog that nips, bites and growls. Presence, and presence, wrapping and toys, want to keep living, need to choose joy. I choose to choose joy.
Long COVID is a frienemy, one I could do without. She is a cruel mistress of that there is no doubt. She turns up uninvited and takes away your fun. She doesn't care for life and joy. She'd rather leave you numb. She doesn't care what you wear or dates that you had planned. She'll take your dreams and destiny and pluck them from your hand. Rest and medication are never that assured, prayer and understanding of the weapons that endure. Long COVID is my friend me and one for now I'm given, just here this though long COVID - I choose to keep on living.
A chronic Christmas plea. If I forget you, I haven't forgotten. No card through the door doesn't mean I don't care. A present that's late won't negate your great presence. A text that's ignored means I know you're still there. It isn't ideal. But it's life for the moment - a virtual existence, the way that I live. If you're in my life, you will always be special. This Christmas, my friends. This is all I can give.
Merel van der Knoop 28:28
Hi everyone, this is Merel again, but this time I am introducing the long COVID Kids choir. And we are terribly excited to be part of this creativity episode. The long COVID Kids choir was recently set up as a collaboration between the long COVID Kids charity and myself after I contacted the long COVID kids CEO, Sammie McFarland on Instagram to ask if the charity would be interested in running, together with me, an online quiet for children and young people living with long COVID. I was so pleased when Sam his response was positive.
We decided to run a six week trial period which started on the sixth of November of this year and finished with a Christmas themed session on the 11th of December. And yes, we did wear our Christmas hats and antlers even. One of the aims of the long COVID kids choir is to bring joy and happiness to the children and young people and their caregivers during the difficult times they are going through. Our choir sessions consist of singing songs, gentle breathing exercises, hilarious tongue twisters, funny warm ups, as well as that we've had the pleasure of having guest artists including cats, who have performed and written songs for us - although the cats did not write the songs they just performed in the videos. We also like to bring out instruments such As a ukulele and African drums.
We hope you enjoy a song choice for today, which is winter fantasy by Jill Gallina, who has been so kind in her response after I emailed her to ask if we could record her song for this podcast episode. The song is very Christmassy and joyous - we hope you enjoy it
Long Covid Kids Choir 31:38
*song* Snowflakes falling all over town, slipping sliding everybody rushing around. There's an icy chill in the air, telling us that winter's really here. Oh I'm so glad that winter is here, grab your sled and let out a happy cheer because it's snowing snowing all through the day. Winter winds will surely blow all your cares away. Dashing through the snow on a one-horse open sleigh, over the fields we go, laughing all the way. Bells on bob-tail ring, making spirits bright, what fun it is to laugh and sing a sleighing song tonight. Oh jingle bells, jingle bells, jingle all the way. oh what fun it is to ride on a one-horse open sleigh. Oh jingle bells, jingle bells, jingle all the way. Oh what fun it is to ride on a one-horse open sleigh.
Jackie Baxter 32:52
Thank you so much for joining me today for this trip around the world through creativity. It's been an absolute treat. Please do go and check out the creativity page on the website longcovidpodcast.com or via the link in the show notes. If you are a long COVID creative or you've been inspired by what you've heard today, do get in touch. I'll be doing another one of these in the future. And you're welcome to join the Facebook group where we have monthly virtual open mics style events for people to share, chat and just relax.
So I hope you have a restful and peaceful holiday and here it is to a better 2023
Thank you so much to all of my guests and to you for listening. I hope you've enjoyed it or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting the podcast. Please look out for the next episode of long COVID podcast. It's available on all the usual podcast hosting things and do get in touch - I'd love to hear from you
Transcribed by https://otter.ai