This year’s theme for World MS Day is ‘My MS Diagnosis’. Artist and community member, Juliet shared her MS diagnosis journey and how she used art to connect and understand the sensations she felt from her MS.
Four years ago, when I was diagnosed with MS, my world turned upside down. The doctor told me, with sadness in his eyes, what it would or could mean to live with this (in his words) “horrible and incurable disease”. I had never had any intense flare-ups, and it felt like this person I barely knew had more knowledge than me about what was happening, or might happen, with my own body. He knew all of this by looking at a mechanical representation of my brain. Having a Magnetic Resonance Imaging (MRI) scan used as the representation of me, and my body was alienating. My immune system was apparently, without my knowledge, not on my side. I was told my immune system was attacking the nerves I needed to move through life.
At that moment and in the following months, I felt like a victim, disconnected from my body, trying to find a way to trust myself again. In this stressful period after the diagnosis, I got my first intense flare-ups.
One year later, on my journey to reconnect with myself, I remember sitting down with a pen and a piece of paper. I closed my eyes and started drawing lines, following my bodily sensations. I mapped the numb and tingly feelings in the left part of my face, tongue, shoulder, hip and leg. This was the first time I listened so attentively to what was happening inside my body. Looking at this first visualisation, it was as if I was looking at my own alternative MRI scan. This scan was made by listening closely to what was happening inside of my body – something nobody else could do but me.
Being the only one who really knows and feels what is happening inside gave me authority and reality back over my body. I realised how important it is for me to learn how to listen to myself instead of only listening to the outside world.
In the three years since I have carried on scanning myself regularly by drawing the ever-changing sensations in my body with my eyes closed. I have experimented with different materials and ways of mapping myself. As well as drawing with a pen in an A4 book, I experimented with painting on life-size paper and light drawing. I found the paintings and light drawings quite beautiful but the process of making them required too much conscious attention, making it more difficult to connect with my inner sensations.
I now prefer to use a simple pen, or charcoal as it gives me the option to draw softer and harsher sensations. Experimenting with different materials also made me realise the drawing does not need to look ‘good’ or a certain way. The purpose is to connect with myself and carefully visualise my sensations without any judgments.
For a long time, I only observed and mapped my intense flare-ups. These were lines of pain and tingly and numb feelings. I noticed that by focusing attention on those sensations only, they got bigger and bigger and bigger. It was like I became a body with only MS, a body under attack. I came to realise I created the reality of my body, so I broadened my focus. I also started focusing on feelings of joy, little itches, and other interior subtle sensations. By giving other sensations more space they became more apparent inside me and on the paper.
During a silent ten-day Vipassana meditation retreat I learned how to listen to my body even better. Practicing the Vipassana meditation means you have to learn how to notice the most subtle sensations throughout the whole body, which takes time and a lot of practice. This practice influenced me further, changing my awareness of my body drastically. I no longer had a body with just MS. There are so many things happening in my body, doing so much to keep me alive and well.
Not too long ago I started with the Overcoming MS Program. My body feels light and energized with the new diet and intense exercise routines. Again, my alternative scans are changing. Stepping out of victimhood and being there with and for myself feels so empowering and caring.
You can see more of Juliet’s drawings here.
Thank you to Juliet for sharing her diagnosis story, to help spread awareness this World MS Day.
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