Every Body Knows

This piece is featured in the collaborative project between WhyNot and Project See and B for Propel Youth Arts WA 2024 KickstART Festival in Western Australia.

Words by Sofie Kerr (she/her) 22 WA

Since I can remember, I have wanted to be a jazz singer, go to WAAPA and eventually write my own music.

By 2020, I was 18, and beginning to fulfil those dreams but was faced with some serious obstacles. I was battling an eating disorder, developed CPTSD that was triggered every day at university and experienced mental and physical symptoms for years.

I refused to defer or to stop my gigging, writing and recording because I loved it all so much and was highly motivated, achieving a lot but losing myself in the process.

As my work and studies got harder, it became increasingly difficult to ignore the things my body was screaming at me. A couple of days before Christmas 2021, I woke up with one side of my body numb and not moving. I was admitted into hospital and, after many tests and questions, was diagnosed with something called Functional Neurological Disorder (FND).

I learnt that FND was the explanation of months of tics and seizures and had manifested from years of stress and trauma to my body and nervous system. Most doctors at the hospital had never heard of it, nor did they have much medical advice for what to do.

When a person has FND there isn’t technically anything wrong with them physiologically- it wasn’t a stroke or an injury, every part of my body was perfectly intact. I could be fine one day and then half paralysed the next. I was terrified and didn’t understand it. I thought I could never trust my own body again and that my life was over. I had heard of FND, only in the few months prior to my own diagnosis, because another Perth jazz musician- an incredible trumpeter and composer named Jessica Carlton had had a very similar history to me and also got an FND diagnosis in hospital. I was able to reach out to her and received some ongoing support, but still felt very alone in the industry.

The FND episode slowly resolved in time for third year uni to commence, and I was ready to go back! I booked gigs, continued to write and record my album. I went to uni every day facing more CPTSD triggers.

By March I was in another FND episode, this time it was my dominant side so I couldn’t write. I waited it out and eventually it ended. I was having mini episodes multiple times a week – often coinciding with PTSD triggers.

In July, another major episode. I had to use a walking stick, and it took my voice. I couldn’t sing or speak properly. There wasn’t any point in “pushing through” anymore. My marks and attendance were dropping, I was having seizures and breakdowns in front of highly esteemed musicians who I wanted to impress in rehearsals, and now I couldn’t even sing.

So, I deferred and took a break. I rested. I booked a physio appointment to start something called Feldenkrais, which I was told was going to help me. Through Feldenkrais I was very slowly reintroduced to my body. In the beginning it was very distressing, my brain refused to connect, but after months of hard work I was able to detect oncoming episodes and rest when I needed to. At home I started to read books and write poetry, started working in a theatre, and rediscovered what I loved about the arts on my own terms.

After a year off, I returned to uni feeling like a brand-new person. I was in a new year group. I wasn’t facing my triggers in the classroom anymore. I was managing my time better and learning more about myself.

I went back to uni and gigging, working on my own timeline, going to bed early, managing my nervous system, and staying in tune with what my body was telling me.

I honestly liked music again.

My seizures stopped after a while and I felt myself grow in a way I never had before. I was, and still am, struggling with comparing myself to those around me. It was somewhat frustrating adjusting to a life where I was making allowances for my invisible disabilities. I was worried people wouldn’t believe me, or would think I was lazy, but after a while it began to pay off.

My body had to be incredibly dramatic to get me to listen, but I’m almost glad it did. FND sucks, but it forced me to work with myself and not against.

I’m learning that being an artist isn’t about how many hours you log in a practice room or being the most accomplished or technically proficient person in the room. Music is all about experiences and perspectives, not the hustle, and it’s our differences that makes art beautiful and important.

 

Illustration by Jodie. You can find more of her work on Instagram @jodie_ellin

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