How MS has inspired my music


1 June 2020

Chloe Scammell is a singer-songwriter from Belfast, living with multiple sclerosis. Here, Chloe shares how music has helped her to "process the thoughts and emotions that come with this new way of life".

My MS journey began with a fall. In 2015, I was a skater with Belfast Roller Derby league, learning how to play the sport with the hope of one day being on the BRD team with other strong, fearless women. I fell during skating practice one afternoon, and I ended up in A&E with a bad concussion.

Months passed, and I wasn't recovering as I should have been. I couldn't work; I had daily headaches, debilitating fatigue and brain fog, as well as light and noise sensitivity. I was incredibly forgetful too, having to write everything down immediately or it would be gone. I would be mid-conversation and I would lose track of what I was saying, leaving me feeling embarrassed and stupid. Everyone has lapses of forgetfulness from time to time, but this was relentless.

My GP diagnosed Post Concussion Syndrome (PCS) and I got an MRI of my brain in 2017. I was also referred to the Regional Acquired Brain Injury Unit in Belfast for cognitive assessments. The specialists there informed me that while my MRI showed no sign of damage from the fall, there were some white matter abnormalities. I was referred to Neurology at the Ulster Hospital in early 2018.

By this time, I was getting more symptoms. I had altered sensations such as prickling, burning, and numbness. I would get tight pain around my back and chest, and I had one particularly unsettling week with a blurred spot in my vision like a patch of Vaseline. My symptoms would come and go without warning, and I struggled to explain how they felt to anyone that asked. It was upsetting and confusing; I just wanted to know what was happening to me.

On the 19th June 2018, after two more MRIs of my brain and spine, I was finally diagnosed with relapsing remitting multiple sclerosis. To be honest, I don't know when the PCS ended and the MS began, but it's possible that previous episodes of unexplained and intermittent IBS, depression, anxiety and fatigue that date back to my teenage years could all be connected to MS.

While nobody wants to receive the news that they have MS, I found that I had a genuine sense of relief. I didn't cry or feel afraid, I just wanted to know what the next steps were. I finally understood what was wrong with me, and I felt like I could start moving forward with my life, even if it looked very different from what I thought it might be. It's not all sunshine and rainbows, and I have days when I feel low, but I've learned to adapt and accept life as it is instead of what I wish it was.

Just pour your heart and soul into it and you might be surprised with what you can create and where it could take you. Without MS, I might never have become a singer-songwriter. MS is not the end; sometimes it's just the beginning.

Following my diagnosis, I felt a need to do some things that I had put off for years. A few weeks after that appointment, I was looking through Gumtree adverts when I noticed one ad looking for a female singer for a new two-piece band in Belfast. I have always loved singing and it was my dream to write songs and perform for people. I replied to the ad, and within a few days I had auditioned and got the job. We formed Calico Fox, and have since performed at various venues and events in Northern Ireland, most notably appearing at Belfast Pride and Culture Night and Day Belfast 2019.

We have just released our self-penned debut album, ‘Moonlight’. The first song I wrote for the album is called ‘Phoenix’, which is all about my experience with MS. I wanted to write a positive, uplifting song for other people with MS, while also expressing the range of emotions linked to the condition for others trying to understand what it is like. You can watch the ‘Phoenix’ music video here.

Music has become a way for me to confront difficult feelings and understand them better. If I could give advice to anyone dealing with a new diagnosis of multiple sclerosis, it would be to find a way to express what you're going through. Being creative can help to process the thoughts and emotions that come with this new way of life. You can write, sing, draw, paint, dance, sculpt, rap, act ... whatever works for you. Just pour your heart and soul into it and you might be surprised with what you can create and where it could take you. Without MS, I might never have become a singer-songwriter. MS is not the end; sometimes it's just the beginning.