Multiple sclerosis through lockdown

Lindsay Oliver lives in Leith, Edinburgh, Scotland with her grey tabby cat called Parrot. She writes and draws from her bed. Her poems have been published online, in the print journal Lallans, and in themed chapbooks from Dreich at Hybrid Press. As well as writing poetry, Lindsay writes short stories and longer fiction. She also draws and paints. An exhibition of her illustrated poems appeared online as part of the Scottish Mental Health Arts Festival 2021 She has exhibited her work at the Out of Sight, Out of Mind exhibit in 2017, 2018, 2019, and 2020.

Tuesday, March 24th, 2020, was the first day of the lockdown in Scotland. For almost a year before the pandemic, I was bedbound. I’d spent the first two months of the previous year in hospital. I had injured my back, and it had gone into debilitating and painful spasms. This, on top of the fact that I use a wheelchair full time, meant I couldn’t function at home alone. The doctors were concerned I had damaged my spinal cord, but although they found two fractured vertebrae, they were healing, and there was no evidence of spinal cord injury.

I came home to a package of care that included care visits four times a day. I’m fortunate that this was arranged quickly and provided free of charge. 

Even though the carers were friendly and kind, and my friends and family visited me at home, I still felt isolated. I could no longer go to open mic poetry nights and read my work or listen to and be inspired by others. I couldn’t go to the writing class at the local community centre that I’d been attending for ten years. Whenever I tried to write, I worried about the pandemic and got angry about Westminster’s lack of response. I’m left-handed and my left hand was so weak because of my MS I could no longer draw. So, I felt cut off from the creative pursuits that I loved.

Progress was slow and there were setbacks, but I recovered enough to sit in my recliner and do simple tasks for myself. When Covid came to Scotland, the care agency seemed to have no contingency plan for how to deal with it, or any notion that PPE might be necessary. Since I was recovering, just a few days before the first lockdown, I cancelled my care. It was a challenge and took most of my energy, but my physical condition benefited from having to do things for myself, except for the two times I overdid it and brought on the back spasms again. I was lucky there. I took strong painkillers right away and coped with the spasms at home alone. 

After a few weeks, more and more events moved or started up online. I could go to poetry nights, read at open mics, and attend writing classes. As the rest of the world locked down, my world opened up. 

To regain an ability that I thought I’d lost forever during so much loss felt almost like a miracle.

Four creative endeavours stand out as life-altering for me. First, in May 2020, I signed up to the 100 Days Project Scotland. The idea is simple. You commit to a creative activity each day for 100 days. I did a drawing with my right hand every day for 100 days. I started with a self-portrait. It was a little more than a few lines on a page. Drawing with my non-preferred hand was frustrating and tiring, but I stuck with it and my ability to draw returned. MS is a progressive illness. We face the continual loss of abilities that bring pleasure, fulfilment, and allow us to live independently. To regain an ability that I thought I’d lost forever during so much loss felt almost like a miracle.

The second standout event was discovering the London Writers Salon, a group started during lockdown to allow writers to meet up on Zoom and write together for an hour. In January 2021, I tried it once and was hooked. From then on, I attended at least one silent writing session almost every weekday. During Writers Hour, I wrote poetry and had several poems published. I dug out the first draft of a children’s fantasy novel that I started ten years ago, and now have it nearly ready to submit. 

Through Writers Hour I’ve attended open mics, taken part in a three-day novel writing challenge, completed two 24-hour writing marathons, taken part in National Haiku Writing Month, and made connections with writers all over the world. For the 100 Days Project 2021, I used time in Writers Hour to complete a stanza of formal verse each day. Joining the London Writers Hour was transformative for me. Going every weekday provided structure and a sense of purpose and got me writing again. It stopped me from falling into despair about the pandemic and my continued isolation.

During the darkest, most difficult days of lockdown, I came to see how sustaining creative work is for me. When I draw, I relax, my inner monologue quiets, and I focus on the work. When I write, I sometimes find it harder to still the inner monologue, especially when it is panicking over the risks posed by a deadly virus or grieving the terrible loss of life.

Shortly after joining the London Writers Salon, I signed up to the Haud Close project run by Scottish Ballet. I was on bedrest again and my arm movements were limited, but I felt included as a dancer. When they invited us to arrange a series of movements, I found I had definite opinions on how I wanted my choreography to be arranged. I’ll never be a dancer or a choreographer, but this project allowed me to see that physical limitations don’t have to prevent creative input into a physical art like dance.

One last key creative endeavour builds on this discovery. My daughter Fiona Oliver-Larkin is a physical theatre maker. Before the pandemic, we’d talked about collaborating on a project that would combine the movements of the non-disabled with the words of the disabled. In February 2021 we created avata5985, a hybrid being. Fiona attached an iPad over her face while I was on a Zoom call. Fiona was my avatar. My face was on her body. As avata5985, we did doorstep poetry readings, met friends at the beach, and walked through the Grassmarket. Although I was in my bed alone at home, I felt I was out in the world, meeting people. 

I didn’t start creative writing until after I was diagnosed with MS. I had to take medical retiral, I’d just moved to a new area, and I was looking for new activities to get out, meet people and build a new life for myself. Creative writing was not only enjoyable, but also through writing classes, poetry nights and open mics I made new friends and discovered how important creative activities are to me. Throughout lockdown, creative writing and drawing became essential to my mental well-being. They gave me a purpose and brought meaning to my life when I needed it most.

Lindsay Oliver

See more of her Lindsay’s elsewhere:

Our monthly flash theme for May was Walking or Chronic Illness

In May we celebrate National Walking Month with some blogs from keen walkers and ramblers aged 60+, accompanied, hopefully, by some of their photos. We also honour World MS Day with a blog focused on multiple sclerosis and looking generally at how chronic illness and creativity intersect. We would love to read your flash submissions in honour of either or both of these themes. Would you like to tell us something about your experience of being an older person who loves to hillwalk or ramble? Are you an older person managing a chronic illness which has had either a positive or adverse impact on your creativity? Send us your flash submissions!

Entries will be accepted until midnight on May 31st and flash submissions can take the form of a poem, short story or flash memoir. The winning entry will be chosen by the Autumn Voices staff team and the winner will receive the books Walking For Creative Recovery, by Christina Reading and Jess Moriarty and Piranesi by Susanna Clarke.

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