MS won't stop me

Living with multiple sclerosis is an ever-evolving journey filled with challenges, uncertainties, and unexpected discoveries. When I was diagnosed with MS in the summer of 2022, I found myself at a crossroad. I was a photo artist, at the very beginning of my career. 25, female, without any art degree, fighting my way up in the male dominated industry of art. But I knew what I wanted and nothing could stop me. Well, nothing but MS.

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I worked in my own photo atelier, my photography was published in several art and photo magazines, my name became known to my local art scene and I was working 24/7 on my first exhibition. Photo-art wasn’t a hobby or a ‘job that sounds like fun’ it was my calling. My passion for photo art was deeply intertwined with my identity, and the diagnosis threatened to sever that connection.

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My diagnosis

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I woke up one day in the summer of 2022 and it actually felt like I didn’t wake up at all. From one day to the other, my legs were too weak to carry my weight and my mind too tired to keep me awake. But the impact on my vision was particularly devastating. I started seeing double when looking down, couldn’t move my eyes left nor right and as silly as it sounds, seeing was exhausting. Like my brain couldn’t properly process the pictures my eyes captured anymore. I at first thought I was just overworked and needed some proper sleep, which would be a first in many months. So I slept, but my condition just got worse.

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After a few days I went to see my primary doctor and got told it’s my psyche and he can’t help me with that. And my only thought was “How am I supposed to create my art like this? How am I supposed to take photos when my eyes aren’t working?”. A few days later I went to the ER and immediately got hospitalized. The doctors suspected MS right away, ran several tests, diagnosed me, put me on 5 days of steroids, but my vision didn’t improve. On the day of my hospital discharge my doctor told me, since my medical problems didn’t improve by now, they may have become permanent.

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MS and art

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I thought nothing could stop me. Nothing. So I told myself, nothing can stop me.

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I wasn’t even home for a whole week when I started exploring new avenues of expression and in the midst of this upheaval, I turned to watercolor art. I hated watercolours, always did, I hated how messy it is, how dull the colours are and how uncontrollable it is. I didn’t want to work with watercolours, just as I didn’t want to deal with this illness. So it was a perfect match.

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I started painting faces, characters that represent my symptoms, individuals that personify my MS. And within days this artistic endeavour evolved into a series of illustrations that I called “A Thousand Faces”.

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Creating these illustrations was not just about capturing the physical manifestations of MS but also about exploring the emotional and psychological dimensions of this condition. And the more MS illustrations I created, the better I understood MS. Through painting I gained a closer connection to myself, my body, my mind. And even though art has always been my medium for introspection and self-discovery, no photo I’ve ever taken has taught me as much about myself as these watercolour illustrations did. Painting my illness forced me to listen to my body, something I never truly did before and it made me realize that MS isn’t a scary stranger whose only intention is to harm me. MS is my body crying out for help and attention.

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Recognizing the therapeutic power of this creative process led me to a new project. I wanted to offer the same opportunity for self-understanding to others living with MS. I wanted to create something like a manual on living with MS. So I created the Multiple Sclerosis Tracker. Based on the insights I gained from studying my MS for my illustrations, this Tracker gives step by step instructions that will help MSers to manage their MS more effectively. And my MS illustrations from my art project “A Thousand Faces”, that inspired this Tracker, are included throughout, offering a visual representation of what we all are going through, offering solace and a sense of connection within the community.

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“A Thousand Faces” doesn’t end here though. I want to keep on raising awareness and help other MSers with my art and am planning on a huge artwork that combines my MS illustrations, showing the WORLD what life with MS is really like.

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MS changed me, it challenged me and took a lot from me, but it never got hold of my creativity. And in the end it was my art that saved me, my creativity that pulled me out of this big dark hole MS threw me in.

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MS couldn’t stop me, I’m still standing, and I will continue to create art!  So keep an eye out for me, this isn't the last you'll hear from me.

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