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No Pain, No Gain

February 2, 2018

From funding bids to rehearsals, radio interviews to over due catch ups with friends, hospital appointments to musical happenings, my Cerebral Palsy has come into every element of my life this week in some sort of way. There's been highs and lows but I wouldn't have it any other way!

 

I spent the beginning of the week in front of my laptop, eagerly writing more of my funding bid application so I can (hopefully) tour my show Twitch; all about music, disability and humour, around the country this Autumn! Exciting times ahead and after last weeks mind fulfilling residential I was buzzing to get all my ideas and new found knowledge down into the funding bid before I forgot them all!

 

However after soooo many hours of application writing I needed a break, so I spent Tuesday evening playing my piano working on new compositions for Twitch and other upcoming performances. And just generally chilling out!

 

So where does my Cerebral Palsy play a part in this? Well, for starters, without it I wouldn't have my show Twitch and I wouldn't be developing a new music show around disability and humour! It's kind of cool to have it for this amazing (hopeful!) opportunity. And secondly, playing piano is the biggest escape from feeling disabled that I have. My twitching stops when I play, unfortunately it doesn't when I'm trying to type though! And off course, it's super fun too - the playing, not the typing!

 

On Tuesday evening I shared a post on Facebook of the BBC News article;'Creative Subjects Squeezed, says schools,' on how creative subjects are being cut back in England. This is something which upsets me as I wouldn't be doing what I do, or have the career I have if it wasn't for studying music from a young age. Music was the lesson I was most engaged with and probably kept me in school in the long run. I communicated through music a lot as a teenager and dread to think what I'd be doing if I didn't have that experience.

 

A friend who works for Sunderland's Spark FM saw my post and asked if I'd be interested in talking about my story, my experience of music and music education on the radio! Of course!

 

So the following morning I travelled on the metro to Sunderland to be on Spark FM based at Sunderland University's St Peter's campus. 

 

I've been on Spark FM (and other radio stations) a couple of times before talking about my disability so I knew roughly what the drill was going to be! We went into a studio, set up the mics and headphones and drafted some questions and answers for the interview. Then we were off!

 

 

I made sure that at the start of the interview my friend mentioned that I have a disability which affects my speech. This is something I've always done in radio interviews, and even though my speech is improving thanks to speech therapy, I feel it acts as a safety net for me. I hope that one day I will not have to introduce my speech impediment 'on air' but I'm not there yet!

 

My Cerebral Palsy played a big part in this radio session, the highs being; I was able to share my story of how music has helped me overcome my disability, and the impact music has on my life. But, then there's the big challenge of my speech and getting everything I want to say out! It's harder than it looks to control my breathing when I have involuntary movements internally and externally! But I took my time and got everything I wanted to say out; (including a cheeky plug for my show Twitch!) It's aired some time next week! 

 

This radio interview made me feel good and proud because this week my speech has proved a bit of a challenge compared to other weeks.  But, thanks to speech therapy I was able to implement my speech techniques and get my point across, whereas previously I would have been unable to. I guess this is a high and a low of having CP! 

 

Then it was back to Sage Gateshead to work on... yepp, you guessed it! More of my wonderful application for Twitch! 

 

In the evening I had a wonderful catch up with one of my best friends, we hadn't seen each other since November last year so it was a very long catch up. We stuffed our faces as usual and had a wonderful chat, we reminisced on old times and realised that we've almost been graduates for three years! Crazy!

 

The best bit for me, apart from seeing my best friend after sooo long, was the moment she said she's seen a big improvement in my speech since last time we met. Knowing that even on a week where I'm struggling with my speech there's an improvement; means so much to me, and gives me the confidence to keep working on it. One day I WILL fully overcome my speech impediment!

 

Thursday was a bit of a blur in the morning as I slept through my alarm. (I'm still catching up on sleep from last week's residential!) So it was a rush to get ready and then off to Sage Gateshead to rehearse with one of my band members for Twitch!

 

 

It's almost been a year since we last played our pieces together so it was a bit of a test to see if we remembered them all! We did eventually! We recorded parts of our songs so we can listen back to and refine certain areas that need a bit of work! It's always a laugh when we rehearse and it was great to get back into the swing of things. I love rehearsing with my friends in my band, I can just be simply a musician, doing what I love, expressing myself through music and forgetting all about my disability. I'm excited to see what new ideas we compose for this years show over the next few months though! And of course to have a massive laugh along the way! 

 

Then it was back to... yepp... application writing for the rest of the day and evening! 

 

On Friday I was back in physio/splint clinic for a review of my lycra splints/strapping I've had the last few months and a fitting for my new, bespoke lycra splints. It was a very long appointment! We talked through all the different garments there are and the benefits and structures of each one. Then it was time to try on 3 of them to get a feel for the different types. We then decided on the type - a double shoulder strap splint (I've been trialing a single one but double gives me more support and stability)  and a lycra sleeve which goes down to my fingers to replaced the tubigrip I currently wear.

 

The aim of these lycra vestments are to support my shoulder and for it to be pulled back into the right position, and to help stop my fingers over extending and give me overall support in my left side. Once we'd decided on the type it was time for measurements. Sounds simple right!?

 

Due to my Cerebral Palsy and movement disorder, I have uncontrollable movements in my arm and hand. My hand likes to be clenched and I wear plastic splints to prevent my fingers from hyper extension when held out. During the measurement I had to remove my plastic splints and hold my hand out for each finger diameter and length to be measured. This hurt a lot having my hand in these positions for about half an hour. Also, sitting still is not my forte so I had two physios holding my hands whilst trying to take the measurements! But eventually it was over and I was allowed to go! 

 

It was back off to Sage Gateshead to Community Music Spark. In the afternoon I was leading a session I called 'The Jam'. I'd spent the week composing a simple piece on my iPad on garage band and I wanted the participants to join in and have a jam whilst creating a new piece of music altogether. 

 

I'll be honest, the session wasn't quite how I intended it to go but we created 'something'! I had two other iPads in the session using an app called ThumbJam and put on two different instruments - flute and electric guitar - allowing participants to play along with the piece. There was a marimba for some participants to play, a piano and djembes. It started off as just one big noise, I wasn't intending it to be so full on! Eventually I got control back and we split the composition into sections of 'stabs' and 'three note stabs'. we looped this a few times and the piece started to come together, however it was still a bit manic! My speech was not great today and I was still recovering from splint clinic . I was in pain and couldn't really say what I intended to! So I reverted to my other way of teaching using hand signals and movements to conduct. This sort of worked!  

 

This was my first session I've led on my own using iPads so it was definitely a real test for me. It may have been a bit haphazard (or some may describe it as simply mayhem!) at times but I can only improve on my practice right?! I know what to change and what to keep for our next session. I'm still developing my practice around music tech and sometimes my speech or physical CP symptoms throws a curveball and I just have to go with the flow. The feedback from some of the participants was great though and they enjoyed it so I'll take that away with me!

 

My Cerebral Palsy has come into play quite a bit this week, in both a positive and negative way. I've shared my story but had to fight with my speech impediment to get it across. I've been working super hard on an opportunity that could create a big impact in mine and others lives but the challenge of typing it all up and getting ideas across is a big challenge. I've been a musician able to express myself and escape my disability but also struggled with trying to express myself at times too. I've been put through physical pain but the overall outcome will (hopefully!) be worth it! 

 

The simple message I've taken from this week is; no pain, no gain! My disability is not going anywhere, so I've learnt to embrace it. There's good days and bad days, but everyone has that too. It fluctuates rapidly but the positives almost always outweigh the negatives. I may have Cerebral Palsy but I will never let it have me! 

 

 

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