R – Rock Choir

You would be forgiven if you are confused with the title of this post. In a blog which aims to raise awareness of disability, a post entitled Rock Choir is not something which people would expect to find but having been a member of a Rock Choir I can tell you that this post is very much linked to my disability.

I never forget when I first decided that I wanted to visit my local Rock Choir for a ‘taster session’ it was after a very good friend said how much she enjoyed going to her local Rock Choir and that it boosted her social life. My friend confessed to not being a very good singer but despite this, she thoroughly enjoyed it. I emailed the choir mistress, explaining that people had trouble understanding my speech, yet alone my singing. I was expecting her to email me back, asking whether there was a white van waiting to cart me off for having such a ridiculous thought, however, to my surprise, her reply was the complete opposite and she invited me to the next taster evening. A small ‘obstacle’ which I saw being in my way was telling Mum and Dad where I was going. I knew I wasn’t obliged to tell them everywhere I was going but it is something which I naturally do as I have a very close relationship with my parents. The choir met in a local church so I told them that I was going to church. Whether that was a lie or not is debatable but it is what I said. As soon as I got home, I felt so ‘high’ that I phoned my parents to confess where I had really been. Mum totally understood why I had been so liberal with the truth saying that although she would had not necessarily tried to persuade me not to go, she would have been a little sceptical, worrying that I wouldn’t have been able to keep up.

The more I went the more I seemed to enjoy going. There were some evenings when I would come back from work feeling stressed and tired and not wanting to go but knowing I had paid up front was a big incentive to go. On the evenings where I thought I was ‘too tired to go’ I found that I came back home a different person – rather than wanting to go to bed I wanted to carry on singing. I was absolutely amazed at how included I felt. After going to so many things in the past, where my disability seemed to stick out like a sore thumb and I was an ‘outsider’ I was surprised that, at choir, I never once felt anything but fully included. I explained to the leader that standing up to sing would be too difficult and nobody seemed to bat an eyelid that I was ‘allowed’ to sit down. To my utter amazement I was invited to take part in performances and I was even encouraged to sit down during those as well. There was one other member who also sat down but in a choir of almost 200 people, where only you and one other person was sitting down, you would expect to feel singled out but not at all. The only comment was ‘Thank you, you needing to be in the front row, so that you can be seen, helps me to escape from being on the front row!’

What follows next is an article which I wrote for Scope with the hope that it would be seen by other people who have Cerebral Palsy.

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After about 4 months of being in the choir I begun to notice that my jaw was locking in the mornings, it was a little annoying but I did not see it as being a major problem as once I opened my mouth a few times it did not lock again during the day. After being the choir for just over a year, it was becoming a little more of a problem for me and it was beginning to lock intermittently throughout the day. After consulting with my dentist, she recommended me to see a Chiropractic which I did and after he spent time with me and looked at the movements of my jaw, he did not feel that he would be able to help me. As time went on my jaw was getting increasingly worse, I was now getting pain when I ate or when I yawned. My dentist was brilliant and after wracking her brains as to whether there was anything which she could do to help she made me a mouth guard to wear at night.

Due to it now causing me significant problems, I asked to be referred to the Oral Max Facial department in my local hospital. It was only now that I was beginning to wonder whether me singing in a choir was causing the problems. At my Oral Max appointment, they did not seem to jump to the conclusion that it was the choir but we both agreed that it would be a good idea for me to stop going. They also recommended that I went on a soft diet, obviously hoping that doing these things would prevent it from getting worse. I followed the order of a soft diet to the letter, unfortunately it coincided with Christmas and having a Christmas dinner which had been through a liquidiser is not something which I would recommend. Mum also liquidised my roast dinners – these were fine but I think with all the extra trimmings which you have at Christmas just did taste nice, all mashed up. Unfortunately, the soft diet and me stopping choir did not help as the pain just seemed to get worse. I obviously did not go back to choir but the doctor said that I could stop the ‘soft diet’ so I ate normally again all be it having to have my food cut up into very small pieces. I was taking pain killers which were bitter sweet – they significantly helped with the pain but due to them also being a form of an anti-depressant I needed to stop my existing anti-depressants. As another bit of background knowledge, the anti-depressants which I am on are a relative low dose and the best way in which I can describe them is as them being a cushion. I wouldn’t say I suffered from depression to a large extent but I think, as most people with Cerebral Palsy would agree, life is not always easy with people’s attitudes as well as the amount of energy needed to live with a disability. A cushion is therefore probably a good way of describing the benefit I get from taking them. When I had to stop them in order to take the necessary pain killers for my jaw I realised how much I benefited from them and I therefore begun to struggle with my mood.

My doctor then prescribed me some different tablets for pain relief which meant I could restart my anti-depressants, meaning that I went through quite a good period. After being on these for a year and a half I decided to stop them as I was wondering whether they were suppressing my appetite and also I wondered whether the pain had miraculously decreased. I’m glad that I did stop them as I realised that the pain had indeed gone!

As time went on, I begun finding it difficult to eat, for example, eating a pizza took me well over an hour, there was no pain but taking this long to eat it took all the pleasure out. Due to the Oral Max team not really being able to help me they referred me to the Orthodontics department. At my Orthodontic appointment they confirmed what I had thought had happened. Due to my jaw having moved, (which is probably why I had a year of being in pain) my teeth no longer met together and I therefore now have a Class 2 Anterior Open Bite which explained why eating a pizza was so difficult!

Treatment was the next thing which we discussed and replacing both of my jaw joints was the only option. The consultant who I was seeing was very experienced – he was the only surgeon in the South of England who does this operation but he was not willing to do this operation on me. Due to my Cerebral Palsy he said that the risk of paralysis was too great for him to consider operating. As Mum and I came out of the consultation we were obviously bitterly disappointed and I did decide to seek a 2nd opinion – unfortunately the 2nd consultant said the same, surgery would be too risky.

I am a firm believer in turning negatives into positives and this is exactly why I wanted to share my story and my main message would be if you notice your jaw beginning to click, review what you are doing and seek advice early. No one has directly linked my jaw deformity to my singing in a choir but I am sure this is what caused it. As I was enjoying my time with the choir so much I didn’t realise how much of a strain I was putting onto my jaw. I wouldn’t want to deprive anybody from the lovely feeling of being in a choir which made you feel so welcome but I would say think twice!

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Having a jaw deformity is impacting my life, especially my eating, having to think twice about what I can eat easily and what would be too much of a struggle for me to eat. ‘Going out for dinner is therefore not as enjoyable as it used to be and I am finding it difficult to maintain a healthy weight. I have just (March 2024) had an appointment with a dietician who is going to prescribe me some shakes to help to boost my calories

People say there are seasons in life and this is exactly what Rock choir was for me – a season. I had a wonderful time during the 18 months when I was a ‘Rockie’. Do I wish I’d made the link between my jaw problems and singing sooner? Absolutely but hindsight is a brilliant thing!