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A woman with long hair is pulling a funny grimace with a face mask pulled up over her forehead

Creativity, determination, survival and a smattering of swear words

Emily Holt

Let’s face it, living with MS during a pandemic sucks.

I made a short film, ‘The Virus Diaries’ because I wanted to make a record of what I’ve been doing. And how I’ve been feeling as someone self-isolating. 

Working with my Personal Assistant Team at Compass Homecare and with help from my family, I managed to direct my film, which traces my highs and lows during the first year of the pandemic.

Shut in but still here

I was labelled as Clinically Extremely Vulnerable, and I started shielding from COVID-19 in March 2020.

Since then, I’ve done my best to physically retreat from the outside world (despite having 24/7 home care). I know that I’m not unique in this experience.

The Office for National Statistics says 2.2 million people were identified as Clinically Extremely Vulnerable in England. That’s a lot of people. I think that our voices haven’t been prioritised by the government or in mainstream media. Although we might have been shut in, we are still here! 

Creativity has always been important to me

I went to Wimbledon College of Arts to do a BA in Technical Art Interpretations and Special Effects. While at university, I was diagnosed with MS after experiencing symptoms in my hands and with my sight

My final project at art school was a sculpture which blended a female and damselfly body together. I wanted to explore the idea of transformation, what it might feel like to be two forms inhabiting one body. For this piece, I was awarded the 1999 BBC TV Design Award. 

As my MS progressed over the past 20 years, the NHS provided my care which includes a small component for mental health and wellbeing support.

In the past ten years, I’ve had a series of Creative Wellbeing Assistants helping me to make all kinds of art. Having a Creative Wellbeing Assistant is the form of mental health support which I think works best for me.

Using art to process my MS

Ultimately, I’m an artist who wants to continue practising what I love. Even during this difficult time of the pandemic, I’ve continued to use art as a way to process what is going on with my MS and the world around me. 

You can watch The Virus Diaries online
I sent my film to the MS Society, and was really pleased to get this comment from Ed Holloway, the Director of Services. He said my film: 

"provides a moving insight into the reality of shielding as a clinically extremely vulnerable person. It’s brilliant that Emily has used her experiences to highlight the challenges that people with MS have faced over the pandemic.’’

If you’ve also used art to channel your frustrations of the pandemic, or have a story you want to share, it would be great to hear from you! You can get in touch with me using the feedback form on my website. 

Take care.

Alongside Emily Holt, this blog was written by Creative Wellbeing Assistant Emily Sutcliffe.