Much Taboo About Nothing
In the space of one week, I signed the consent form for brain surgery, got told my disability is progressive, released my new single and put on a show combining music, disability and humour. It was crazy! Getting the right frame of mind with all of that going on was not easy, but I'm now on the other side realising I did just that!
June 17th will be a day that sticks with me forever now. On that day this year my world changed forever when I was told by my neurosurgeon that my symptoms associated with my disability indicate that it is actually progressive dystonia, and it will likely spread to my other limbs and result in loosing function in both my hands. So this operation is the last option to stop this.
So I then signed the consent form to have Deep Brain Stimulation (brain surgery) to stop the dystonia spreading and hopefully keep my symptoms at the level they are now. One way to start your week off!
It was a lot to take in, at previous appointments over the last few years, no one has told me that it seems progressive, even with the onset of Little Guy, my twitchy arm that developed when I was 19, or the slight twitching I noticed in my right side last year. To hear the words 'likely loose function in both your hands' made my heart sink. My life is a challenge with the limited function I have currently, to know it may get worse and I could loose even more function is horrible.
BUT!
It was a no-brainer (no pun intended!) for deciding to have the brain operation after that news. This decision has taken over a year of appointments and tests to confirm I'm a suitable candidate and what they expect the outcomes to be. So I signed the form...
Now it's just a waiting game till I get the date for the pre-op tests and the operation. I've postponed the operation till early next year though, as I have a lot going on this year with my Masters, work, and performances, and wanting Christmas at home with my family and not stuck in hospital recovering from getting two holes and electrodes put in my head!
Following on from the appointment I had to quickly take it in and spend the following days getting everything sorted for my Masters show - Much Taboo About Nothing, and the release of my new single - Time Lapse.
Time Lapse is my new single which again is an autobiographical piece depicting the life decisions around my brain surgery and the other challenges and experiences life has thrown at me recently. On the 20th June I released my new single on all major music platforms. It seemed a fitting week to release it after all the craziness of the previous days!
The same day I was nervous and excited as I then headed to York on the train for my show I was putting on, Much Taboo About Nothing at York St John University. My new show was similar to that of my main show Twitch in the sense that it combined music, disability and humour but this time all acts had a disability. It was an early start spent filling the parents car full of instruments and then seeing them off as I caught a train to York so I could release my single on the train!
Once at York it was the countdown till my acts arrived and sound checks and the show started. With the help of my parents and some friends we got the room set up and my sound engineer arrived. Although then left and decided to bring his own PA rather than using the one in the studio. Slightly stressful but I guess that comes with the territory of putting on music shows! So sound checks began with my first artist - Kris Halpin, also known as my CP twin!
45 minutes before the show started my artists from the North East arrived - Ausome, a band from Gateshead who all have autism. I've been working with them to write a new song specifically for my show about the topic of disability taboo, aptly titled - Much Taboo About Nothing.
After rushing through the sound checks, finding lost audience members wandering around, it was time to start the show!
Me playing my compositions including Time Lapse.
Ausome performing their own songs about battling depression and their new song Much Taboo About Nothing.
Kris Halpin playing the renowned MiMu:Gloves and sharing his own mesmerising songs.
I couldn't be more proud of my artists who showed their true ability as talented musicians, (who also have disabilities too)! The response was just what I wanted with people saying the talent of the acts was very high and they are simply musicians in their own right.
As well as sharing music throughout the night I also shared some of the comedic stories that are associated with my life with my various disabilities and proving that you can laugh at disability and it is not a bad thing. Including the time I was asked to 'just lie still' for an MRI scan... The reason I was there was because I can't lie still anymore!
After the show was done it was a quick pack down and a well deserved drink in the pub with my friends before heading back to the North East!
Performing Much Taboo About Nothing allowed me to share my true identity, and share once again that there is nothing scary about disabled people, we are all humans, we just do things slightly differently some times!
My parents had been with me the whole week and were by my side as I got the disability news and signed the consent form, as well as when I did my new show. Sat in the front row looking proud. Without them I don't think I would have been able to cope as well as I did, and so saying goodbye for another two months was pretty difficult.
The following day was a lovely relaxed day spent with wonderful people singing and playing music following the sun from the north east to the north west. I bashed out some rhythms on the cowbell at Northumberlandia and shook my shaker at Long Meg. It was a perfect day to clear my head after the craziness, be outside amongst wonderful scenery and surrounded by wonderful music.
That week will stay with me for a long time. I'm a few weeks on from it and have spent time relaxing (in Spain) and coming to terms with everything that is now going on in my life currently, and looking forward to what my future brings. Being disabled can be scary at times and I don't know what my future with my disabilities brings, but I know to hold my head high, it's okay to be scared and by sharing my life with others I hope to show others that it's okay. Things happen for a reason and it's how we respond to situations that impacts how we live our life everyday. For now though I'm looking forward to being part robot in the new year!
