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Life as a Musician with EDS Part 2

*Please read part 1 first*

Where my last post left off: I was in sixth form, and hoping to get a place to study at a conservatoire but I was being plagued with migraines.

I decided quite early on in year 13 that I would take a year out between A Levels and Higher Education, this would give me the time to resit any exams that I needed to (I had been so ill that I knew I wasn’t going to do well) and for my health to (hopefully) improve. It also gave me the opportunity to do A level music as I hadn’t done it the first time round. This turned out to be a very good idea as the morning after I had done my last A level exam I was rushed in to hospital for an emergency appendectomy. It turned out I had been suffering from a grumbling appendix for at least 2 years and the stress that it had been putting on my body is what was making my migraines so bad. Once I had recovered from surgery my migraines quickly settled down and now I only get them around once a month. Unfortunately though, this was far from the end of my health affecting my music.

As I prepared for my conservatoire auditions I began practising my oboe for hours at a time. I was thoroughly enjoying it and my confidence started to grow again. However, I began to notice that my hands would get sore after I had been playing, particularly my right thumb which takes the weight of the Oboe. I already had a feeling that there was something going on with my health other than just migraines but I didn’t consider this to be an issue. Thinking it was because I was no longer used to playing for such long periods, I started to spread my practice out over the day rather than doing it all in one go. I hoped that this would help build up the strength in my hands, but after a few weeks there was no improvement. I began to worry (again) that this would stop me from being able to maintain the standard needed to study at a conservatoire so I decided to apply for universities as well.

By the time I had done my conservatoire auditions and my first offer had come through it had become obvious that the problems with my hands were not going to go away, though I still hadn’t really accepted  that I wouldn’t be able to perform for a living. I made the decision that I would go to a university, to give myself time to sort my health out, and then would go to a conservatoire at post-graduate level. That’s how I ended up at Keele University.

I actually ended up going through clearing as I only got a D in A level music and this really knocked my confidence (again!). I now know I deserved a higher mark (both of my fellow A level music students had theirs remarked and their grades went up from Ds to a B and an A) but at the time I was devastated. Because of this crisis of confidence, the degree I started was Maths and Music, though I had dropped Maths by the end of my first year. Although I didn’t enjoy studying Maths anywhere near as much as I had at school, I don’t regret doing this; I needed to regain confidence in the fact that music was what I wanted a career in. It may seem a bit contradictory but through all this, I still held on to the idea that I would go to a conservatoire at post-grad; my mental state was too unstable for me to come to terms with the fact that my body would stop me performing to a high enough standard.

All the while, my hands got progressively worse and it got to the point that I was struggling to hold my oboe for longer than about 10 minutes, after that my thumb would sublux (partially dislocate). Again, I found that Saxophone was the solution; the fact that the weight was on my neck rather than my hands made it a lot easier to play. I began playing the saxophone in Keele Concert Band and Keele Big Band and, eventually, bought myself my own tenor Sax. I regret it now but I stopped playing my oboe outside of performance class, when I would have to tape my hands using kinesiology tape. I think I was in denial; if I didn’t play then I could ignore the fact my hands couldn’t cope with playing. I couldn’t deny it for ever though, my hands continued to get worse and I started to have to tape my hand when playing the sax and even writing.

I got my diagnosis of EDS in the Easter holidays of my first year at Keele, and it is one of the best things that has ever happened to me. I also have OCD and Asperger’s syndrome so when I was diagnosed I became obsessed with learning everything I could about EDS. I began to understand what was happening to me, which meant I could start to come to terms with it. We had to go down to London to get the diagnosis so, after quite a lot of persuasion from my parents, I took my oboe and, on the same day, took it in to Howarth of London. They swapped the thumb-plate to one which can be hooked on to a neck strap. This took a lot of the weight off my thumb and I started to enjoy playing again.

Unfortunately though, this was only a temporary fix.

In my second year at university I made one of the hardest decisions I have ever had to make: I dropped performance. After dislocating my jaw (a problem that is now a regular part of my life) I had to postpone my first year recital and over the summer my hands had continued to deteriorate. My head was in a much better place when I started my second year (I don’t think I’d have been able to make that decision if it wasn’t) but it wasn’t until it was suggested by my doctor that I needed orthotics for my hands that I really accepted that performance wasn’t going to be an option for me. It was very difficult, but both my parents and the university supported me.

I decided that I wanted to take composition back up, so the university let me sit in on the first year module so that I could take the second year one. I found composition was a brilliant way of still being involved in the creation of music without being limited by pain.  My love for composition has only grown; I have had works performed by a number of different groups, was awarded a composition fellowship, achieved a first-class mark in my final-year composition project and am currently studying a composition module at Masters level.

Once I had come to terms with everything I was able to rethink what I wanted to do. I used my experience with EDS to inform my undergraduate dissertation, which explored the possibility of using musical performance as chronic pain management, and, through this, found an area I was very interested in; Music Psychology. I decided I wanted to go into research so that I could use my own experiences as a disabled musician to help others in similar situations. I am doing exactly that, and loving every minute of it; I am currently doing a Masters in Music Psychology and will be starting a PhD in September. My current research draws on my experience as a musician with an Autistic Spectrum Condition.

It has taken a few years of trying different things but I now have orthotics that allow me to play both oboe and saxophone at a high standard. I will never be able to play to the standard I did when my problems started as I will always be limited by my EDS but I’m OK with this now. Being OK with it has allowed me to start to enjoy playing again.

I am incredibly lucky that I have now found bands and orchestras to play with that are fully understanding of my condition, but that hasn’t always been the case. Some of my worst experiences as a musician with EDS were caused by the perceptions of other people. As EDS is an invisible condition it’s not always obvious that there is anything wrong. In the past I have been labelled ‘lazy’ for not helping to load heavy amps into a car, and ‘unreliable’ as I missed a rehearsal due to having a migraine. I am neither of these things, I am just limited by pain, fatigue, and a whole host of other health problems.

I hope this has given you some insight into what it’s like to be a musician with EDS. Just remember, you don’t know what is going on with the ‘lazy’, ‘unreliable’ (or even just grumpy!) member of the orchestra, so don’t judge!

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