I have ME/CFS, some back problems, agoraphobia, an anxiety disorder, and some serious problems with procrastination, partly depression-related. I probably have dyspraxia, and I certainly do have hypermobility.
I also have asthma, which came on a few months ago, and led to a 2-3 month period where I couldn’t sing at all. Very Frustrating! Thankfully that’s now mostly under control with a preventer inhaler. \m/
And as of a couple of months ago, I also have seizures. A diagnosis of epilepsy is looking likely. I have generalised (probably tonic-clonic) seizures around every week to ten days, sometimes more than one. And I have focal (usually, AFAICT, parietal lobe) seizures more days than I don’t.
So, how does all that affect my aims as a folk musician?
Well, the fatigue and the back pain mean that supporting my voice well is something I’ve always struggled with, especially back in my early 20s when I was a classical soprano rather than a folk mezzo. To make matters worse, my hypermobile ankles and lack of muscle tone in my calves mean that giving myself a strong base to sing from is… difficult. These are all still big problems now. Lacking power and ease in my body means that it’s all too easy to carry a great deal of tension in my throat. That’s never good for singing! It makes creating a beautiful, mellow sound very challenging, and impedes expression and story-telling. And it massively impacts on my vocal stamina.
Being physically very tense and weak is also bad news for a lot of instrumental playing. From the ages of 9 to around 19, I was a double bass player. The double bass is a stunning instrument, and I miss the bass I used to own – a glorious old gentleman whom I called Martin Chuzzlewit, who dated from the late 19th century, with so many repairs at various times that he was all over multicoloured from different woods. When I was able to play him enough, he sounded fantastic, and he took to jazz with great enthusiasm – I became a pretty decent upright bass jazz player in my mid-teens, while the ME hadn’t bitten too hard yet. Having hypermobile wrists and fingers was, for once, an advantage, as was moving to a musical environment where generally using pizzicato meant that my rather appalling bow control wasn’t such a problem! Ultimately, however, being a double bass player was unsustainable for me – I never managed to play him without increasing my back pain, and when the ME started to get bad during my late teens, it reached the point where just getting him out of his case and the spike up used all the energy I would have spent in playing him!
I still have my electric bass, Octarine. I’ve never felt as connected to her as I did to Martin, and some of the physical difficulties are still there, but at least when I can’t play her she isn’t taking up vast amounts of space! Martin I ended up giving to my partner’s uncle, luthier Con Rendell, where he’s now getting played and enjoyed on a regular basis, and may end up becoming the model for more double basses. 🙂
A couple of years ago I took up the ukulele. My uke is a gorgeous, wooden concert uke, whom I have named Seren – the Welsh for “star”. For various health and procrastination problems, I’d hardly say I’m adept at her as yet, but I can accompany myself enjoyably, and still utterly in love with her sweet tone. Despite the size difference, a lot of the skills I learned as a bass player are exceedingly transferable on to the uke, and there’s something about an instrument small enough to play in bed that is exceedingly helpful for someone who is sporadically bed-ridden!
I also play the descant recorder, and (a little), the D high whistle, and the recorder fife in C. I’d say I’m more of a natural string than wind instrument player, but there is nothing quite like mastering a fast jig on a wee melody instrument, especially when it undermines a lifetime of regarding yourself as “clumsy”! At some point, I rather fancy getting myself a D low whistle. We’ll see. 🙂
(The other instrument I would love to acquire at some point is a lap harp or clarsach, though I think I’d like to have my back problems significantly more sorted first, as well as rather a lot more money than I currently possess!)
The seizures primarily affect my music-making at the moment just by exhausting me, though it is also a tad awkward to sing clearly when having a focal seizure that makes me feel like my face is numb or my tongue swollen! Those are mostly surmountable problems, however. 🙂
And then there’s the mental health stuff. My agoraphobia is bad enough (and my physical health unreliable enough) that gigging is really not an option yet, and even getting to a folk club to sing during an open mic or singaround is rather challenging! The anxiety disorder just makes everything harder, consistently. And the procrastination problems, which I’ve struggled with for much of my life, mean that for someone who passionately loves making music, I do far too little of it.
So! Those are the problems. How am I going to get round and through them? 🙂
Well, for a start, there’s doing my physio exercises for my legs and feet, doing yoga to help my back, and weights and walking when I can manage them. There’s learning some Alexander Technique, even if it’s just from a book to start with!
There’s continuing to manage my asthma, to manage my anxiety disorder as best I can, and working with the neurologist I’ll be seeing in August to find some medication that can bring my seizures under control, hopefully without there being too many horrible side-effects!
There’s gradually working, in a determined and self-compassionate way, on easing my agoraphobia.
There’s using methods for overcoming procrastination that I’ve already found work for me, and exploring new ones. There’s using my ellythefolk Twitter feed especially to talk about practises I’ve had or am having, as a way of keeping myself accountable.
Above all, there’s self-compassion, and there’s making music as I can, when I can, and reminding myself of how much I love it. Because, that’s the point of all this, really. I would very much like to get to the stage where I can gig, record and sell albums (in physical and download form!), and generally function as a professional folk musician, as much as my disabilities allow for. But all of that starts with this fundamental truth: making music, both for my own amusement and (especially) to share it with others, is one of the things in life that makes me the happiest. It connects with a deep-down, basic part of myself. It’s part of my spiritual path (I’ll talk about Druidry and the Bardic Call in a future post!). It’s just generally a crucial part of who I am when I am at my best and most alive.
This blog exists for many reasons, but one of the most crucial is to give me somewhere to record and share my journey in working with and around and through my disabilities as I grow as a musician – indeed, as part of that growing. I hope this aspect of my writing will be of interest to some of you; writing about it will certainly be helpful for me. 🙂