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Everything in black and white

Too bright

Too loud

Too crowded

Too small

Not fitting in- not even trying at all

How are others so happy?

Laughing and talking with hands and mouths

When I drag my heavy limbs, I'm worried

I'll fall

Saying too much, too little, or nothing at all

"No excuses"

"Try harder"

"Do better"

But I can't think straight anymore

All I want

is my bed

a spring in my step

and a new body

To wake up from this horror with joy back in the eyes of the person

in the mirror

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My perfectly healthy 12-yr old daughter Iris was infected with covid on January 2022. A month later she developed long covid and became very sick and suffered many debilitating symptoms: fatigue, nausea, migraine, neuropathic pains, etc. She could barely walk. She missed friends, missed school, missed running, missed life.

I felt powerless and frightened, not knowing when, or even if, she would get better. It took months before we noticed improvements. Progress came thanks to cold water therapy. Many daily ice baths made her “feel normal”, but symptoms always returned. There was improvement though. She regained some energy, and I regained hope. She went back to school in September, part time. She is not free from long covid yet. Fatigue, nausea, and migraine still linger daily. Every day is a challenge, but she is the happiest student.

My motivation for creating a series on long covid is to show what an invisible disease looks like and to raise awareness. At first Iris didn’t want any pictures taken of her ordeal, but then she realised it was necessary. For her to keep the disease at bay, for other long covid prisoners whose life is on hold to get some exposure and for me to leave a trace. Together we chose to describe it by photographing her main symptoms, most of them neurological.

To this day there is no cure for long covid. I should add ‘yet’ to the previous sentence, but I will first wait for this disease to be fully acknowledged and understood.

January 2023

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Long Covid Prisoner - Francoise Holtzmacher Photography

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Although long covid has robbed Eva of so many months (Apr 2020) she is always looking for activities she can manage I think art is a good option for her. ❤

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Here is an AI drawn image of what it is like to have Long Covid. If you want to make/see more images like this go to the wombo art website

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There would be a dark cylindrical room, dimly lit by panels of LED lights on of the walls. In the middle would be a stool connected to the ground. The stool would be uncomfortable to sit on, anyone who wanted to sit on it would have to keep shifting to get a comfortable position but never be able to. Occasionally, some of panelled lights would flash brightly in a sequence once then go back to normal. Quiet lyric-less music would be playing at all times and it would at random times abruptly change to a completely different rhythm and pitch. The room would be heated to an above comfortable temperature and kept humid.

This is the normal state of the room, it can be entered and exited at any time. Sometimes, for exactly 5 seconds the following would happen.
- The stool would begin to shake and rotate in a way that would make sitting on it difficult
- All of the light panels would start flashing at random, changing intervals
- The music would change to a constantly changing mashup of popular songs at an above comfortable volume

This room serves to show any willing volunteer what it is like to have my version of Long Covid, to never be comfortable exactly where you are, to constantly be at an uncomfortable temperature, to randomly spasm without warning. Anyone can go in to see what it's like following 2 rules. A) they have to be sitting or attempting to sit on the stool at all times. B) they may not leave during the 5 second rapid-fire outside of an emergency. I do not know how expensive it would be to create and maintain the room, this is just a suggestion. Thank you for readying.

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14 years old  - unable to escape Long Covid - 21 months being ill 

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14 years old  - unable to escape Long Covid - 21 months being ill 

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My son Hayden Stokes is unable to make this but he would like you to make a Long Covid walzer ( fairground ride) that has large screens on the outside of the actual equipment ,  shutting out his view with slim slits in-between allowing only glimpses of normal life.  He wants people to understand the dizzyness and the noise . He wants the walzer to have  sounds like seagulls  ,bird songs  car engines  , cluttering plates, chair legs squeaked on floors  etc etc played at high volume   to show how painful  noise intolerance is . No music at all but occasional quiet times  with speech that is confusing ( simple sentences with the words jumbled up )  so it  helps explain the  brain fog he experiences. Any writing on the walls or walzers should be jumbled ( except long covid walzer)  , misspelt and difficult to read .  Each walzer car could have  an individual long covid child ( of different ages / sizes sat alone. Then he wants  heavy , heavy weights on legs and arms and  neck to show the immense fatigue that is lived and breathed daily with no escape . The walzer ride goes on and on and on and on and on  ....

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Rosie wants to add the initials of any #LongCovidkids who want to be a part of a big artwork.
Sound good? Comment below if you have other big ideas!

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We want to learn from your experiences to help people to better understand what it is like to live with Long COVID day to day.

Don't delay! get started making something.  Use the moment.  The more you think about it the less it will come from deep  inside!!

Anything goes.  Photos, painting, modelling clay, sketching, digital art using an app, poetry, music, videos, animations

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THE BORING BIT

We will take as many pieces as we can for making a great display in our SHEDding Light On Long COVID.  We want as many of you guys to be represented as possible, so we will try to find ways of including lots of people's work.  This is your exhibition to help people understand what it is like to be a child or young person with Long COVID.

We also have an exhibition planned for an Arts Centre in Northern Ireland for December.  A young artist with Long COVID and a group of helps will also choose some pieces for the exhibition.  There will be prizes for and work that is chosen for display.

We need either a high resolution photograph of your work, or a scan.  On your phone camera should be fine.  Try to get it as clear a possible.A4 size is best because that makes it easy for us to display.

The judges' decision is final.  But what they want to see is creativity, ideas and an interesting  way of explaining what Long COVIDis or means to you.

AND FINALLY

Creativity is a muscle.  The more you use it, the stronger it gets. There is no right or wrong answer.  Explore your creativity and have fun doing it. The process of creation is just as important as the end result. If it means something to you, we really really would love you to share it with us.  Be brave.  You've got this!

A panel of judges will select some pieces they really like for an exhibition in Lisburn Northern Ireland

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When you are ready.. click on the little plus button above this post and add your creation using the upload function (click the 3 little dots and then click upload).

This will share your creation with us and the Long COVID community.

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SHEDding a light on Long COVID is a cool new project that wants to capture the experience of children and young people living with Long COVID in a creative way.

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We want to use your ideas to create interactive materials that can help people to understand what it is like to live with Long COVID.

You can use this space to get your ideas together.  Some artists use a mind map or talk over with friends or family

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We are looking for creative ways to share any ideas that you might have of how we can do this. We know you will come up with some awesome suggestions, don't hold back, go for it!

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Hi, my name is Mark and I am working with Long COVID Kids to understand how Long COVID affects young people.  

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Hi, my name is Mark and I am working with Long COVID Kids to understand how Long COVID affects young people.  