Category: Disability Arts

Cups of tea, psychology and the big C!

I love this photo taken by my lovely other half in La Spezia towards the end of August on holiday in Italy last year. It makes me think of that moment in time expanding into multiple parallel universes and time continuums …… but that’s just me the sci-fi nut! We never know what’s ahead do we? And in that time-honoured tradition I have (like so many others) been knocked flat by that unwelcome and unexpected visitor that is cancer during these first few months of 2024. Seeing the stream of faces at clinic appointments recently has been a window into a new world where I see people at various stages of this strange and worrisome disease through initial scans, through diagnoses and then the various aspects of treatment. No two people with cancer have the same experience. Each journey through it is entirely unique.

I won’t bore with intricate details of my own pathway through this but suffice to say I have never experienced anything else quite like it. For it really is the experience that keeps giving with new twists and turns every week ……. I don’t think my experience is any more or less difficult than anyone else’s but what has been eye-opening is that scanning machines and wards are not made for those on wheels or with deafness and it does add a layer to the experience which has not been altogether welcome. But what shines through is the dedication and kindness of NHS staff who have so far helped me to navigate the bumps and I feel very loved by those who love me. And that’s a lot. It’s a lot and it’s enough.

I guess it’s fair to say that I have lived to work for the past decade and more. I touched on this in February’s post where everything has stopped suddenly and you are presented with a wholly new thing to get to the other side of. I imagined a few months in my wisdom. Hahaha to that notion! Work has been cancelled and postponed and my head has just been so full but of what exactly!? Well, there is a healthy dose of fear and it’s cold and dark but while I allow myself moments to linger I do not dwell here. I am at home on my sofa or I am at hospital. It’s almost impossible to plan but the lurching from one day to the next has slowed down into a new rhythm of waking up into each new day and seeing how it feels, trying it on for size first and then seeing how it goes. Expectations are small. There are tiny bits of work still but oh so tiny and uncertain and to be done in new ways. There is also a brain used to working at maximum capacity which has been bored and so thought it would be a good idea to do an introductory Open University module in psychology just because there was a need for something, anything else which was not to do with what I usually do but which would transport me into something else completely new at regular intervals. And so with copious cups of tea I read and work through my OU materials on psychology as and when I can. Just got 81% in my first assignment and got a total chuffer for it’s the small triumphs these days!!!!!

I think it will continue to be the very smallest of things that continue to be the most heart gladdening. Like coming round from my first surgery to find that the nurse had kindly put my hearing aids in so that I wouldn’t wake up and not be able to hear. That bit of thoughtfulness is not lost on me and I treasure it and the support I am receiving on a daily basis from family and friends. My next little challenge is to make a little presentation about how I work with captioning in my creative practice for a symposium that I cannot attend in person. I do not want to be on camera at the moment so finding ways to try and make something engaging without my face in it hehehehe. There are always words though which is a good thing for I’m fond of those …..

Doing things differently.

Well now it has been a good long while since I last waffled in a blog post. It seemed as good a time as any to write one. I have some health stuff going on right now and 2024 has not started quite as expected but that’s the way of things sometimes. While I deal with and get through the health gubbins …… work, which is usually pretty central to my existence is taking a back seat. This is such a different experience it has rather shocked the heck out of me! When you suddenly stop and postpone things and hopes and plans go awry it doesn’t half put you wrong. I spent most of January treading water in a huge vat of shock and now it’s February the inertia has shifted slightly into slight signs of animation …… or at least moving off the sofa again. 

So, I’ve decided to embrace this unexpected start to 2024 and to do this year differently. I expect it sounds a bit like making New Years’ resolutions a tad late this year. Oh well, never got the hang of making those stick anyway, have you!? I’ll still be doing wee bits of work here and there, mostly smaller music commissions I can do from home. But the bigger stuff and all of the in-person stuff has been postponed and so I will be staying put for a fair few months it looks like, if not most of the year. My brain is struggling with this concept not a little! It is railing against the sheer concept of not working on 6 different projects at once which is how things usually are. It’s a novel concept to think about “doing things differently” and I’m not sure what this will look like or how it will be as yet. I think it might be one of those where you find out along the way. The first thing I have noticed however is that without those 6 work projects happening all at once there is a glimmer of something else manifesting in my brain together with the shock of unexpected health gubbins. Now that’s a wee bit new and interesting …. 

(Dis) Connect.

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Many many more weeks of lockdown have passed by in a bit of a blur if I’m being honest. Health continues to grumble along keeping the days uneven and the feeling that progress and life have stalled a bit …… but I imagine everyone feels that at the moment from time to time (or maybe all of the time!?). It’s easier to get a grip and “buck up a bit” on some days more than others which is not to say that I’m stuck in a cycle of constantly being a misery chops …… more that I think that of late there have been a few more misery chops days than previously. The mind and body are seeking a bit of respite but currently there is none to be had …… so I’ll resume muddling along for now and grab ahold of the good days whenever they come along. The above picture is of Burghead beach in Moray and was taken by Donald E. Ross. I get lost in the ebb and flow of waves connecting, disconnecting and then reconnecting with the sand.

There have been lots of things to get stuck into though. Rehearsals and open sessions with Sonic Bothy have been happening with live captioning as I hear very little useful audio through online platforms. We’ve chanced upon an amazing captioner, who besides captioning words, talks, meetings and conversations vividly describes sounds and music in the rehearsals and sessions for me. Think madrigal and word painting and you’re just about there such is the depth of her descriptions! I had first worked with this particular captioner with Drake Music in the last while and a few weeks ago she had the “delightful” task of captioning my first ever webinar about words and music and ending with some Dada voice work stuff. Humour seems to creep into most things I do and she said she could hardly type through laughing so much. So that’s nice. And webinars …… ooh that was a challenge I hope never to repeat for at least a year and a half! A good challenge and way out of my comfort zone. I think it’s the being “out front” thing which I find most difficult which probably sounds a bit weird because I do perform from time to time but being on a stage I can do while public speaking is akin to sitting on really hairy prickly cucumbers …… on purpose!

Can you believe that it’s actually June …… where the flamingo did May go!? That’ll be that blurring of days and weeks thing. And does anyone else feel as though they have done not that much at all in the past 10 weeks!? As if the time passed blankly looking at the wall or something …… in that good timing of stuff that sometimes happens I’m nearing the end of a two week online workshop with Imaginate which looks at you and your practice and works gently through a series of tasks which have an unexpected way of actually making you think about things in a non-scary and fairly deep and meaningful way. It is gently bringing me back into the present and kick-started a mindfulness practice which had abandoned me so far during lockdown. I’m using the word gently a lot ……. can you gently face things? I hope so. That’s what I’m aiming for …….

Besides the really scary webinar task we also had a question to respond to at the Drake Music artist residency this last month which asked us to ponder on the themes of “connect and disconnect”. As I feel quite disconnected a lot of the time anyway owing to my own shortcomings in personality and a propensity to hide I wondered what it would be like to spend a couple of weeks engaging online as much as I could and so I turned up to every captioned webinar and talk on music and disability arts and Covid possible. Was it illuminating? A lot of them were awfully interesting to be fair so that was quite good! By the end of it I was talking a bit in them, trying to contribute but not feeling comfortable doing so. Did I network or find a voice? In reality it just confirmed what I knew before in that I’m rubbish at this sort of stuff and that doing more of it in a way I was uncomfortable with wasn’t going to make me any better at it. So I’ll probably go back to being quiet in these online gatherings but will try my utmost to be an active listener! It was really interesting to “be out there” a bit more though and I’ll certainly continue with that albeit in a quiet way.

I’ve had a nice commission for a new song come in and I’ll waffle on about that more in the next post. I’ve also applied for 2 things which may or may not come through but it seems important to keep trying at least a little bit. I did write a fair few lyrics in May although so far they haven’t come together with music yet in any pleasing way so this month I have a song without words. It’s about connecting and disconnecting and is called (funnily enough!?) …..  (Dis) Connect .