14 - Long Covid Creativity 2021

Episode 14 of the Long Covid Podcast is a bit different - I am focusing on creativity and these wonderful people who have made something beautiful out of something horrible. Rather than having just one guest, today I am joined by a whole host of wonderfully talented people, all suffering from Long Covid.
 
Artwork mentioned in the podcast, as well as links to visual elements are featured on this page on the podcast website

Brighid O’ Dochartaigh – "Recovery Is A Long Time Coming" was published on the Scottish Poetry Library website here

John Kennedy - "Long Covid Rhyme" Twitter @j_b_kennedy 

Chiara Berardelli - "Tyrannosaurus" - see more of Chiara's work at www.chiaraberardelli.com and listen to her Long Covid experiences in Episode 3 of the podcast. 

Callum O’Dwyer – "Professional Time waster" can also be viewed as video here

Ruby Engel - "The Ties that Bind" (poem) and "The Twelve Months of Covid" performed by Shaula Salathe (Instagram @ladyshaula ) and available as video here 

Emilie von Wijnbergen - Cartooning Long Covid Check out her cartoons on the Podcast Website Creativity page (Instagram @cartooninglongcovid )

Shereen Smith - "Dear Me" - this poem was also featured in a documentary called "The Long Haul" and if you're interested, it can be watched for free 

Daphne in Stockings – “I Forgot” – see more of Da

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

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Welcome to the long COVID podcast with me. Jackie Baxter, I am really excited to bring you today's episode. Please do check out the links in the show notes where you can find the podcast, website, social media and support group, as well as a link to buy me a coffee if you are able, you should not rely on any medical information contained in this podcast and related materials in making medical health related or other decisions, please do consult a doctor or other health professional. I love to hear from you, if you've got any suggestions or feedback or just want to say hey, then please do get in touch. I really hope you enjoy this episode. So here we go.

Jackie Baxter  
Hello and welcome to this episode of the long COVID Podcast. Today I'm looking at creativity and the idea of making something beautiful out of something horrible. This episode is really special, because today, instead of having just one guest, I'm being joined by a whole host of wonderfully talented people. This virus has taken so much from so many of us, but today's lovely guests have found a way to make something creative out of it, there is a visual element to some of today's work. So there is a dedicated web page on the podcast website where you can see the visual art and also links to some videos. You can go directly to the website, long COVID podcast.com, and go to the creativity tab, or follow the link in the show notes. I have also put links to all my contributors in the show notes, so please do check them out, as they are all wonderful. If you have been involved in some long COVID creativity, please do get in touch, either via social media or through email. Long COVID podcast@gmail.com It would be lovely to hear from you and to do another long COVID Creativity episode featuring more wonderfully talented people. So enough of me. Let's listen to some of these wonderful people. To start with a poem, and I'll let Brighe introduce it herself. My

Brighe  
name is Brighe. I live in Edinburgh, and I've been living with long COVID Since the start of the pandemic, since March 2020 I was really quite badly affected. I was too sick to work for over a year in that time, one of the support groups I found was a creative writing group run by the lovely Leslie mcnivin and our we group met each month online and together, we would scribble down our words, our feelings, our stories about how long COVID had affected us. And this poem is one that I wrote as part of those workshops. It's called recovery. Is a long time coming. Today. I'm waiting for nature to do a thing rest. They said, rest and you'll recover. Just wait. Things will get better. Everything changes. Spring, SAP rising. Summer, green gold. Autumn, blaze of dying, winter bear. A year passed by. I'm still waiting. Today. I'm hoping for a new season in my body, for the winter, death of my disease, for fresh shells growing healthy blood flowing for springs revival through my veins.

Jackie Baxter  
Next a rhyme by the wonderful John.

John Kennedy  
Hi. My name is John Kennedy, and I've been long hauling since December 2020, and it's been an experience, not a terribly good one, but sometimes I do try to look on the lighter side of things, and that's why I penned this little rhyme about long COVID, and what I believe is the real reason for it. So here we go. I've done my research. I've joined the dots. The cause of long COVID is micro clots. They hide in your blood, and they make it all sticky, so that functioning normally becomes bloody tricky with not enough oxygen going where it should. As long as this happens, you won't feel too good. Some people will tell you, it's all in your mind. They deserve no attention. Them shrinks and they're kind. They'll tell you to exercise, but pay them no heed, because to put it quite bluntly, that's the last thing you need. Rest is essential, and pacing is too and with no medication, that's all we can. Do they call us long haulers? But I wish I could say just how long we'll be hauling till these cloths go away.

Jackie Baxter  
Next up some music. You can listen to Chiara speak more about her long COVID experiences in episode three of the podcast.

Chiara Berardelli  
Hello. My name is Chiara berardelli. I'm a singer songwriter in Glasgow, towards the end of 2020 I was having particularly bad symptoms with what I was beginning to think might be long COVID, but I didn't really know. And the thing that was really bothering me, or mostly bothering me at the time, was really bad headaches. And I was talking to the counselor I was seeing at the time and saying, if I just knew what this was, if I could call it something, it would really help. And she said, Well, you know, what would you call it if you had to give it a name? And I said, Tyrannosaurus, because at the time, the headaches were they felt like they were kind of taking over my whole head, and it felt like a monster in my head. So Tyrannosaurus has become my name for long COVID, and this is my song to it.

Chiara Berardelli  
You taking care of myself, taking care of my health. Light it up, the vitamins, wash them down, one by one, losing my rock and roll.It's my body, but I'm not in control. I don't know your name. I'm trying to get used to you, Tyrannosaurus, you won't get the best of me, Tyrannosaurus, come on. Take what you can see. Tyrannosaurus, if you have to call it, so go easy. I mean, please. I'm not alone lying here in the dark. I It's my body. I'll show you. I don't know your game. I'm trying to get through to you, Tyrannosaurus, you won't get the best of me, Tyrannosaurus, come on. Take what you can see, Tyrannosaurus, if you have to call it, go easy on me. Please come on. Take what you can sing. On take what you can sing to rather, if you have to call this, go easy on me. Go easy on me. Go easy on me? Please go easy on me. Please go easy, and we might just get along.

Jackie Baxter  
Next up the lovely Callum. There's also a video for this.

Callum O'Dwyer  
Hello. My name is Callum O'Dwyer, and you're about to hear a poem that I've written with. Where I've been thinking a lot about how I view time from before and after getting long COVID, and I tried to sort of put a few experiences of that into this, and I won't spoil any more than that. So hope you enjoy. Thank you very much. It's hard work passing time, quickly forcing your way upstream, a rising resistance with every step, like running in a dream, or it's like non newtonian fluids. Okay, it thickens up the more you stress. So don't work so hard. Glide through with time you get more doing less. I swirl the days in long, lazy circles so they vortex out the bottle. I can't stand living through choking bubbles, juttering gulps, throttling glottal No, keep meals at set times. Know how far you can walk, deploy it as your yardstick. Learn how much you can talk. Let the days fall into beats like the drums of a known song, a muster picking up your feet, an ODE for the lost days gone. If you think this sounds dull, well, this is just a taster. I've been feasting at that buffet. I am the professional time waster because I caught the bug and never got better. Each morning I play a scratch card, the prize is whether I feel 1% less dreadful and good news. Out of 523 tries, I've won a handful, but I can't work. I wrote this from bed, so I have no choice but to finally dice the minutes until they make me cry, days ground fired pained into glass houses to watch years of Sun bleach streak the sky creasing like the growing lines in my hands. I watch my muscles shrink like grapes in the sun. Watch spent months burn a hole for a few more chips at the wheel, all in hope recovery will be one. I this is where this poem is ending. It's only my life to be giving the stiff rod of Hope keeps me going and wasting time for a living.

Jackie Baxter  
Next up, we'll be right back. I'm interrupting myself for a second to tell you about long COVID breathing. The Fabulous Vickie Jones and I have teamed up to bring you long COVID breathing. We are both passionate about sharing our expertise and experience of the breath and how incredibly helpful that can be with long COVID, we've worked together to develop a course that is specifically tailored to those with long COVID. It's a six week course with 12 sessions, all delivered online. The community feel and learning that we're all sharing is such a joy to find out more information and to sign up for our courses, workshops and other shorter sessions. Please check out the link below long covidbreathing.com or email long covidbreathing@gmail.com to start your breathing journey with us, 

Jackie Baxter  
Flying across the ocean to the United States. Ruby has a beautiful poem for us, followed by her rewriting of the 12 Days of Christmas, the 12 months of COVID is performed by her friend, Shola.

Ruby Engel  
Hello. My name is Ruby Engel, and I'm 56, years old. I got a very mild case of COVID in early March 2020, and a few weeks later, I started experiencing a wide range of long COVID symptoms, including heart failure. 19 months later, I'm still a COVID long hauler. Basically every organ system in my body has been affected by this illness at one time or another. Currently, my main long COVID issues leave me unable to walk more than a block or two, and I now have to restructure my life to accommodate my limited energy. Transitioning from being a healthy person to a chronically ill person, stirs up many emotions. I have found that writing has been a helpful way for me to process what I've been going through. Sometimes I write poems, sometimes I make long COVID adaptations of already existing songs. It is always cathartic, and it's also my way of documenting my. Personal experience with long COVID. The poem I would like to share with you is called the ties that bind. I wrote this poem when I was 15 months into this illness, when the post vaccine world started opening back up for everyone, but not for me. It addresses what it feels like to watch the world go on without you, and the struggle to reclaim at least part of your former life while working around the unpredictable symptom flares that occur. I hope you enjoy it. People say I look okay, but I don't really feel that way. There's so much that is wrong with me. I wish you could just look and see. I never know from day to day if I can keep my symptoms at bay, aren't you better? I often get asked. Friends and family are aghast when I say, No, I've not improved long. COVID does not want me to they don't understand it's been so long. They think alive means recovered. They are wrong. There are still remnants of the old me. They're frayed and tattered like a flag by the sea, imprisoned by this uninvited guest who appears to be on a quest to win this war I never wage, and has made me feel so aged, I'm trying hard to resume life, but many days bring only strife when you can't think or walk or move. How can you get back in the groove? Often I'm able to get some things done, but then a switch flips and the juice is gone. It always happens in just a flash. One moment is fine, the next I crash sleep. Does not help the fatigue I feel, it does not seem to help me heal. Long. COVID really takes a toll. It's an endless game of Whack a Mole. Every time I have success, new symptoms pop up to make me stress, but I won't give up. I'll whack away until I will be able to say, Aha, I win. You lost the game. And though I may not feel the same, I'm me. I'm back. You can't have me forever. Long COVID Beat banished. These binds I now sever.

Shola  
I In the first month of long haul, dear COVID gave to me. In the second month of long haul. Dear COVID gave to me shortness of breath and a feeble of 103

Shola  
in the third month of long haul, dear COVID gave to me bad headaches, shortness of breath and a fever of 103

Speaker 6  
in the fourth month of long hold dear, COVID gave to me four purple twos, bad headaches, shortness of breath and a fever of 103

Speaker 6  
in the fifth month of long haul, Dick, COVID gave to me brain, forgive four people,

Speaker 6  
toes, bad headaches, shortness of breath and a fever of 100 fever of 103 in the sixth month of a long haul, dear COVID gave to Me a weird Phantom. Smells bring forgives,

Speaker 6  
bad headaches, shortness of breath and a fever of 103

Speaker 6  
in the seventh month of long haul, dear COVID gave to me constant fatigue, weird phantom smells pretty far me forgive bad headaches, shortness of breath and of evil.

Speaker 6  
In the eighth month of a long haul, dear COVID gave to me, very achy muscles, constant fatigue, weird phantom smells, Fauci,

Speaker 6  
purple toes, bad headaches, shortness of breath and a fever of 100 had. And three in the ninth month of the long haul, dear COVID gave to me too riches and tremors, very achy muscles, constant fatigue with phantom smells,

Speaker 6  
far more purple toes, bad head aches, shortness of breath and a fever over hundreds and three in the 10th month

Speaker 6  
of long haul. Dear COVID gave to me heart palpitations, trenches and tremors, very achy muscles, constant fatigue, weird fragment, smells, brain Fauci four pampletoes, bad headaches, shortness of breath and a fever of 103 over 103 join it, if you like, in the 11th month of the long haul, dear COVID gave to me hair falling out, heart palpitations, twitches And tremors, very achy muscles, constant fatigue, weird phantom smells.

Unknown Speaker  
For me, shortness of breath and

Speaker 6  
a fever over long haul day i COVID gave to me nobody's sleeping, hair falling out, hot palpitations, trenches and trembles, freaky muscles,

Speaker 6  
purple toes. Purple toes of breath with lots of love to long

Unknown Speaker  
holders around the world and the world.

Jackie Baxter  
Next up is Emily, as you'll hear her work is visual, so please do follow the links to check it out. It's really, really wonderful.

Emily  
Hi, Jackie, thanks a lot for inviting me into this podcast to talk about the cartoons I draw for long COVID. My name is Emily, I'm from the Netherlands, and I'm 31 years old. I used to be a very energetic person, but long COVID turned my life around quite a bit. I had to make a limited activity scheme to balance my energy over the day, besides frequent symptoms like headaches, fatigue and shortness of breath, I became hypersensitive to stimuli. This landed me in all kinds of ridiculous situations. When a baby started crying, the noise made me cry even harder. When my parents dog barked, I jumped up like crazy. First I tried to be hopeful and look ahead, but then the slow recovery made me frustrated. Then I tried to fully accept the situation, but that mindset felt like a resignation. Eventually, I just decided to take it day by day, and that brought a lot of peace of mind. I started to draw to process my new reality, and I noticed how the drawing helped me to turn unpleasant events into something lighter, sometimes even into something funny, inspired by my favorite Dutch cartoon artist, I learned how to give my cartoon self an expressive range of emotions. This enabled me to explain to friends and family how this invisible disease made me feel. Now I share my cartoons on Instagram because I love how there is a community immersion that finds recognition and support in each other's stories. Fighting long COVID is better together, so let's keep up the good work.

Jackie Baxter  
Next up, Shereen reads her own poem. This poem was also featured in a long COVID documentary, which is worth a watch. The links in the show notes,

Shereen Smith  
hello, hi. My name is Shereen Smith, and I wrote this poem Dear me, and I wrote to myself from the past to give me hope and some wisdom for my present living with long COVID. Long COVID in this poem is actually not mentioned, but the hardship of living with it is, and I think it can actually be for reaching, actually to resonate with just hardships that we have to face in life that really pain us. So I'm going to read this poem. A letter I wrote to myself from the past. Dear me. Remember lofty the word you created crudely out of the words love hate when you were only we. It places importance on encompassing life's complexity and to validate our emotionality through life, you're going to go through something that's going to blow you away, strip your identity clean of your bones, your sense of self, a ghost that haunts you in this beast existence. Yes, you will crumble. You will internally be reduced to dust in a restricted body that you lack control. You will struggle in every way, but you are not gone. You are not lost and you are not pointless. You will be reborn, change into a person you never dreamed. In pain, there is beautiful growth. Remember laughter, you warrior, you badass, you vulnerable, sensitive soul, like your word explains to you the importance to accept life's complexity and to validate your emotionality through it. Always pour water on your soul. I love you and always with you. Me. I

Jackie Baxter  
NeXT, another poem, this one's by Daphne. There's a visual element to this as well, which is on the website, and there's a link to her blog in the show notes.

Daphne  
Hi, my name is Daphne stockings. I'm honored with the request from Jackie to tell you a tiny piece about my journey in long COVID and creativity in the long COVID podcast, I started blogging after I found out it was special. I survived electro Moses three times the name stockings come from the compassion stockings I need to wear every day to relieve my pain. A year ago, I found out I have long COVID, not by doctors. Long COVID wasn't an actual illness. Back then, I found out from a Polish woman who read my blog. It was scary. I had a lot of support from fellow sufferers on social media, as creative in finding solutions I always was, it didn't help me recover from long COVID The brain fog has been bugging me for 21 months now. It took away so much from the abilities I used to have. I need way more sleep than before. I even at times, I woke up in places. I fell asleep without remembering. I started meditating more often to be more positive and find new things in life that bring me joy. During my meditations, I got aware of my awareness. In that same period, I learned about the frequencies of the states of awakening, especially the data state. It is the state with the most creativity that you forget about instantly, like waking up and not remembering your dream, that state allows me to be creative and write poems on good days, an ability I never had before, COVID, which which gives me joy, fulfillment and purpose. Hereby, I present you one of the poems I wrote. It's called I forgot I forgot my shopping list, I forgot to do groceries. I lost my money, I forgot my face mask, I forgot my phone, I lost my keys. I forgot to sandwich in my toasting machine. I forgot my meal in the oven. I lost my appetite. I forgot to stop for the red light. I forgot to park the right way. I lost my attention. I forgot about the pages I read. I forgot about the blog I wrote. I lost my comprehension. I forgot to go out for a walk, I forgot to bike. I lost physical excitement. I forgot the clothes standing in my washing machine. I forgot to take care of myself. I lost my way. I forgot a meeting I wanted to attend. I forgot an appointment to make. I lost connection. I forgot to meditate, I forgot to sing. I lost the joy in life. I forgot about my life before. I forgot how to live. I lost myself. Thank you all for the. Singing,

Jackie Baxter  
and last but not least, the long COVID Choir, the choir led by Zoe, meets online each week, bringing together long COVID sufferers all over the world to the power of music. They're always looking for new members if you're keen, so follow the link in the show notes.

Zoe Challenor  
Hello. I am Zoe Chaloner, and we are the long COVID Choir. We started in April of 2021, in response to having long COVID and wanting to do something positive that brought people together. So we get together, we breathe, we sing, we laugh and we make music, we've got members from as little as you'll hear a six year old cellist on the recording up to my goodness, I wouldn't want to guess at people's ages, but let's put it this way, there are members with significant life experience. These recordings are really special for us because we rehearse online. So Zoom is our rehearsal venue, and we rehearse on mute because of latency. So the recordings that people make and send in that are then edited together are the only time that we get to hear all of our voices together. And I every time, I have the most amazing kind of spine tingling reaction, because it's just so lovely to hear everyone's voices together as though we were all in the same room, even though we may never, ever be in real life. So we bring you silent night to bring a little bit of festive cheer into these very uncertain times. And I we hope it's brought you half of The joy that it's brought us. Happy Christmas. You.

Jackie Baxter  
Oh, oh, I thank you so much for listening today. I hope it's given you as uplifting a feeling as it has me, this idea of making something beautiful out of something awful, I think, is really, really encouraging and gives us all a little bit of hope. Please, do check out all of my contributors as you have heard, they are all absolutely wonderful. Do get in touch if you've been creative, I'd love to hear from you, and I hope you have a very, very restful and peaceful festive season. The long COVID podcast will be back in January. Thanks for listening. 

Jackie Baxter  
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 buy me a coffee.com, forward slash long COVID pod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast. It's available on all the usual podcast hosting things, and do get in touch. I'd love to hear you.

Transcribed by https://otter.ai