Losing the ability to carry on with something your life revolved around is extremely tough to take, as well as being depressive. I have always been a huge Liverpool FC fan, and that drove my passion for football. When I was growing up, I was a keen footballer (soccer player). I played for my local team, Newport Schools AFC, Newport Soccer School of Excellence. I also attended the Cardiff City Soccer School of Excellence.
When I was 8 years old, complications followed the removal of a brain tumour in 1998. I needed a shunt (a device that drains excess brain fluid from the head into a cavity in the abdomen area) inserted into my head. This relieved the raised pressure that had been causing me to suffer from episodes of vomiting, dizziness, blurred vision, and extreme lethargy.
The end of 2002, after months off school due to illness because of the shunt blocking, my neurosurgeon decided to put another valve on the shunt at the front of my head. Although this appeared to stop the shunt blocking, my surgeon also told me that I could no longer play football, or for that matter take part in any contact sports. This was a massive blow to me as my life revolved around football, and I had high hopes to go further. I didn’t know where to start again as I had my passion taken from me just like that.
Following my surgeon telling me I could no longer play football, I began to take great interest in music. I had always liked music but now found it was something I could focus on as a hobby as well. In March 2003, my dad took me to see Feeder, one of my favourite bands, and soon bought me a guitar so I could learn to play. I began to have lessons with a local tutor and went on to take performing arts Music at A level and then to university to study music. Unfortunately, due to more illness, I had to finish university; however, my love of music still carried on.
I played in a few bands and began writing my own material, as well as continuing to attend lots of gigs and music festivals. In 2015 I was in the process of starting a new band. We had a full setlist of songs that we were practising ready to play live, when our guitarist Richard, who was one of my best friends passed away. It was a huge blow for the band as we had been searching for someone with a fitting personalityOverview Superficial siderosis progression may have profound... as well as a good guitar player for some time, but most of all he was a great friend. The plan was then to record one of the songs he had written music for, which I would go on to write lyrics to.
Before we were able to record the song, I suddenly lost the hearing in my right ear, and my other ear gradually began to decline. I resorted to playing acoustic guitar at open mic nights as I wanted to carry on with the music. I found it so difficult to listen to multiple instruments together but could tolerate once voice and an acoustic guitar. However, this didn’t last too long as my hearing completely declined, rendering me totally deaf in both ears.
So what now?
I always enjoyed the freedom of music and songwriting in that you can make a song into anything you want. Since in 2016, having been diagnosed with the rare neurodegenerative disorder, Superficial Siderosis, I enjoy researching, writing about the condition and helping others who are going through a similar situation. Yes, I’m still very upset that I can’t perform or listen to music anymore, but I try not to dwell on it. I feel very hopeful that I can use what skills I have left to help others and raise awareness of the condition. The community is fantastic, and it’s so great to see all the patients coming together to support each other.
