Fundraising
If you’re reading this, it’s likely you’ve either read my novel, Take A Moment, or you’ve come across some information about my charity song. Either way, thank you for taking the time to visit. I hope you’ll read on.
Did you know...
It’s estimated that over 130,000 in the UK are living with Multiple Sclerosis (MS), and that nearly 7,000 people are newly diagnosed each year.
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About 100,000 adults and 20,000 children in the UK have an illness called Functional Neurological Disorder (FND). It’s badged as ‘the most common condition you’ve never heard of’, because the awareness is so poor and research is underfunded.
MS is a degenerative autoimmune condition that affects the brain and spinal cord, where the coating that protects our nerves (myelin) is damaged. FND is where there’s a problem with the messaging between the brain and the body. Both conditions can have a devastating impact on people’s lives.
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I have first-hand experience of this impact, so I’m sharing my story and raising money for charity through my charity song, Take A Moment, in the hope that this will help make lives better for people living with MS and FND in the future.
My story
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Take A Moment is a story that's close to my heart because the inspiration for it came from my own life-changing illness.
In 2014, my body failed me in incomprehensible ways: I experienced extended episodes of uncontrollable shaking and tremors, difficulty walking, loss of balance, faltering speech. My vision and hearing were distorted; I lost my ability to concentrate, couldn’t find words, could barely eat and I would fall flat on my face several times a day. That was only part of the picture.
After several months, a Neurology Consultant eventually diagnosed me with a condition called Functional Neurological Disorder (FND). Simply put, my central nervous system isn’t working properly and there’s a problem with the messaging between my brain and my body. FND can range from very mild (e.g. weakness in one leg) to severe, with multiple physical, cognitive and sensory symptoms (unfortunately the version I have).
The good news is that it isn’t a degenerative condition, though it can be as physically debilitating and life limiting as MS and other neurological diseases. The bad news is that it’s a condition for which there is no known cure and support for sufferers is underfunded. Some people get better and others don’t. Some end up in wheelchairs, on incapacity benefits, unable to work or have any quality of life.
I’m in the middle. I’ve managed to rehabilitate enough to have a reasonable (but somewhat limited) quality of life, but every day I’m battling varying levels of chronic pain, fatigue, breathlessness and an overreactive central nervous system, among other symptoms. There are still days when I can have difficulty walking or with my balance, but thankfully these are rarer now – and I hope they stay that way.
Despite all this, and with incredible support from the people who love me, I’ve managed to come through this real-life nightmare fairly unscathed mentally and emotionally. And I’ve found a positive: my passion for novel writing. I actually started writing my first novel (very slowly!) as part of my rehabilitation, to get my cognitive and physical functions working again. So, as far as I’m concerned, I’ve been lucky. But I can see how, without the right support networks, it would be easy for someone with a chronic illness to become isolated, unemployed, and if things got really bad, homeless.
When I started writing Take A Moment, I didn’t set out to write a biography (it's obviously a work of fiction), but I did want to draw on my experience to raise awareness of neurological illness as well as tell a good story. I chose to write about a character with MS so that it wasn’t too close and because many of the symptoms I experience overlap. It was important to me to get across what it feels like to have your life suddenly shattered, while at the same time keeping the story light and humorous enough that readers could easily engage with it.
My charity song
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In Take A Moment (the book), my main character, Alex, writes a song – which is also titled Take A Moment. This song is in fact a song I wrote, with help from a talented musician called Willie Glass, when I was a good way through my rehabilitation. It’s a recognition of the struggles many people experience in life, while others live theirs as if on autopilot. It’s a message to be kind, to care and to open our eyes to what’s going on around us – and to make a difference where we can.
Since writing the song, it has been my goal to do something with it. As well as giving it a home within my novel, I’ve used my own money to get it recorded professionally, and the difference I would like to make is to raise some money through music streaming and downloads to support two very important charities: the MS Society and FND Hope UK.
During the process of receiving my diagnosis, I spent a short time on a neurology ward and I witnessed some of the saddest, most heart wrenching sights I’ve ever seen. It really is one of the cruellest types of illness a person can experience.
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I've released Take A Moment (the song) worldwide and it's available for download and/and streaming on all major music platforms, as well as YouTube. I’d hugely appreciate it if you’d consider downloading it and/or adding it to your streaming playlist – and please spread the word! All proceeds from the song will be split equally between the MS Society and FND Hope UK.
Finally, if you’re interested in knowing more about MS and FND and the impact they can have on people's lives, you can read about them on the MS Society and FND Hope web pages.
Thank you for everything you do.
Nina Kaye x
With thanks to...
As with publishing my books, it has taken a team of amazing people to bring this song into the world.
A huge thank you to Willie Glass, who kindly spared his time to help me create a musical arrangement for my lyrics and who provided me with a demo track.
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Thank you to Iain McKinna of Offbeat Studios and Productions in Edinburgh, who did a stellar job in producing the song, as well as providing backing vocals, and playing bass, guitars and synths.
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Thank you also to Keith More for playing lead guitar and to Niki Paris for playing drums.