'Casowary' by Philip Thurston
The wave came and swept me off the shore.
I had been so caught up in things I hardly noticed its arrival. And suddenly there I was, being dragged and churned out to sea.
Upturned in the undertow.
I watch the detritus of everything I had been building fall away around me. A mission, a career, a voice, a job, a flat, a favourite dress accidentally thrown to recycling because I am unable to move myself out.
But there's so little time to notice if it even matters or what I have even really lost.
Because my body has almost stopped.....
Because the minutiae of everyday life has become the greatest act of will....
Because it seems crawling is beyond me....
Until: nobody knows….a few years?
The rest of my life?
So far nearly two years of watching friends meet up, go out, move on with their careers, do wonderful things, have babies, find the loves of their lives.... But it is two years of re-learning what really matters.
The wave swept me up with such a force.
And now, I’m still churning in the swell.
Time breaks down into the nano-seconds as the energy transitions from the wave moving out to sea with all its might to hurling itself back onto the shore.
I am in the void.
Salt up my nose. Robbed of breath. Under the hooves of white horses.
Being scraped along the sand, the spree, the debris.
I cannot make any choices yet. I will grab hold of any hand I can find in the tumult and keep squeezing tight. I find a hidden air pocket. I can just be here now. I will keep watching and listening. I will keep getting stronger. I will turn it into a detective story.
I will work it out.
Eventually the momentum that upturned my life as I knew it will head back to shore and reconstruct with an equal strength of force. It doesn’t have to be quick this time. Just a strength of groundswell, as sure as the tide.
And when I do make choices, to only rebuild with the precious and the good, I will carry the same potency with me.
It will fizz in my cells like a compulsion.
Life’s compulsion to find equilibrium; every action matched by its opposite.
Because the power of this thing is immense.
And I notice I am beautifully,
How do you still get to go to Glastonbury Festival when you feel constantly fluey and can’t walk more than 25 mins a day? Performing was so out of the question, at least that never became an issue. I phoned the festival access line expecting to have to fight. I don’t look disabled. I don’t know how this works. And a woman at the end of the phone turned out to be an occupational therapist, "We have one or two other crew members with M.E. We’re a fully access friendly festival. You can hire a subsidised mobility scooter, we have disabled camping and toilet facilities, a shuttle bus service, special routes that help you avoid the crowds, the viewing platforms and a laminate for whoever your PA is to join you up there”… All I had to do was send in my latest letter from my consultant. I almost cried with gratitude, ‘Thank you’. ‘That’s fine’ she said, unmoved, reminding me that all this was simply my right and nothing more than that.
And I went. I was determined the flu stuff wasn’t going to get in the way. And it didn’t. And it was one of the best Glastonburys of my life. Because I was walking around so much less thanks to the scooter I had so much energy. I’m convinced that something happens to me in that valley of hills. Lay lines, the collective good will of that many people having a great time. Who knows?
I felt really supported, especially by the crew who include my brother. I’ve performed for years with so many of them and we've become a family (many of us balance teaching and performing every year). Together we form a project in the Kidzfield called Replay that introduces children to their first instruments; guitar, ukulele, violin and cello. We have electronic drum stations, a recording studio, an interactive rock band for kids and samba sessions. Some children come back every year, some tell us we’re the reason they now play an instrument. I was able to roll out of my tent and do whatever I could, I taught a bit and was useful.
I would like to tell you I partied the back stage bars like a Rock Goddess. Another year. This time I took a ton of naps. I was in bed around midnight most nights and slept like a baby. I was fed and watered and did things in my own way, totally OK with only catching whatever music I was able to see.
Highlights were watching Radiohead with my guitarist Maitreya, seeing an old hero, Ani di Franco, and best of all catching the Magic Numbers play a special backstage gig for a few moments before I had to drag my body to bed.
Zipping around on the scooter was a total hoot. Because I was able to get around quicker than anyone, I ended up being a bit of a roadie, transporting anything from cello bridges to loop stations across site. Despite a bit of speeding I contend that I was overall a very good driver. My only transgression was accidentally going forwards rather than backwards, into the edge of the vast crowd of people dancing to Shaggy singing Mr Bombastic.
There were a few moments of hearing people sing powerfully that got to me. This deep, deep well of sadness, I just want to sing again. It's the singing, far more than the performing that I miss. A strange, mute, powerless feeling. Apparently, asking my voice to get through more than about a song at the moment is the equivalent of expecting a violin to play a note with all the strings pulled slack.
I found a piano I find every year, an out of tune upright near the stone circle that looks out over the valley below and had a tinkle, letting a few sounds out of my mouth. When I stopped, one of the couples who were sat watching started chatting. They rather sweetly seemed to think that this was ‘my’ piano, and my job at Glastonbury was to sit there and play it all weekend! Perhaps I did have a little Glasto gig after all.
In fact it was all so joyous, I sometimes had this slightly Cinderalla like fear….what happens when the spell is broken? Will I go back to how I was again? But surely if my spirits (with a bit of help from a wizard who had offered to send me some extra magic) can keep it up for a week, I can keep going?
Both happened: I didn’t keep up that level of activity but since Glastonbury I have definitely been slightly more functional. Simple, everyday things I couldn't do before that I can now. I still have the flu stuff but I'm doing my best to make it less of a big deal. Walking 35 mins a day now even if the day to day reality can still be isolating. But I'm putting a marker the sand - ok, a little flag on a cocktail stick. I did all of that at Glasto and found a way to stay within my physical limits, not a hint of a crash. I had a wonderful time. I'm declaring this a victory.
Stairs Going Down by Circe Denyer (with permission)
There’s a Hitchcock camera movement I remember. Made famous in the film Vertigo as James Stuart looks down a staircase, the shot went on to appear in everything from Jaws to Thriller to Breaking Bad. In a Dolly Zoom the camera tracks in while the lens zooms out at the same time. Life has been a bit like that recently. On the outside it still looks as if my life has shrunk, totally contracted, perhaps even more than it has for months. On the inside it keeps expanding more than ever.
I finally started seeing my NHS physio. I turned up a bit ambivalent, cocky even, not necessarily expecting to learn anything new. While she agreed I was doing really well with my own version of what M.E. practitioners call establishing a ‘base line’, she quickly showed me that while I was doing probably less than 30% of what you might in a normal day, it was still way too much. I had come to normalise always pushing right up to or over my physical limits, my body constantly feeling as if it was burning up. Apparently, with M.E. your cells go through exactly the same physiological process as a marathon runner has when they hit 'the wall'. Only we used up our adrenalin reserves long ago.
And so began balancing out this very easy tendency to push, to do too much rather than less. We began the 20 mins a day rule. Never walking more than 20 mins a day, always attempting to walk that far most days, however bad I might feel. It can be hugely frustrating to adapt to, to plan and live your life to. There was a Saturday, missing yet another friend’s birthday party in London, my parents (who have a ridiculously busy social life) bounced off to a Ceilidh, that sent me driving off to the top of the escarpment and letting out a silent scream into the wind. Being chronically ill forces you to live surrounded by constant, daily reminders of a parallel life un-lived. However strong your support network, it can be incredibly isolating. But I’ve also become one of many occasional wheelchair users and the freedom of it has changed everything. I was finally able to visit a gallery properly for the first time since this began, dad pushing me around in the chair. I don’t think I’ve ever enjoyed art so much.
I prefer not going on about the symptoms of this too much with you, but it isn’t only the immobility that’s challenging. The harder part has been learning to live with the sea-sickness like wobbliness, sore throats, swollen glands and throbby headaches that have been an almost constant part of this since the last day of 2015. There are all sorts of explanations on offer. In the often mysterious world of M.E. (for this read ‘lack of research’), I’m open to everything until it's over.
I have to make life work as it is, regardless. I've chosen a secret date to work towards on this supposedly indeterminate sentence. Two months? Two years? Twenty? A lifetime? It will all pass. That is the blessed part, that is what I hold on to. Some days I master it ninja style. I've woken up feeling foggy, more slowed down than ever, aching all over. And after an hour of energy tricks, meditating (a life-saver) and a mind game involving a very hot then freezing cold shower for 40 seconds, I can make myself feel really not too bad at all.
(Let's pause here a moment for a little fist bump).
Other days I don't master it at all. Other days the most I can hope for is to best choose my method of surrender. I get leapt on by a large stocky gremlin who grabs me on the leap down and drags me to the dark. A few weeks ago the gremlin dragged me to a place so black that, while I know I would never be able to act on this, I understand again the feeling that drives someone to self harm. The frustration, the uncertainty, the deep, deep despair, the helplessness that comes with being unable to think or act my way out of this. I was sat in a beautiful poppy field on a summers day at the time and I wasn't even on my own.
My experience so far has been that however deep, murky and far reaching the darkness, it is always answered by at least the same amount of light. The truth is that my world has opened up beyond my greatest imaginings. Moment by moment, there is nothing that is in reality not get-through-able. Sometimes the old tropes are actually true: the only thing we ever have total control over is our response to whatever is happening ‘to’ us. And our responses, the meanings we choose, have the power to change everything.
But fuck positive thinking. I have no interest in pretending it feels fine when it hurts like hell. I seem to have chosen (or it has chosen me) diving in to whatever is really there. To see whatever it is, however it feels, as an invitation. When I have managed to stop fighting, endlessly fixing, controlling, the worst moments of this have often passed. Or at least they pass and return and pass again with varying degrees of intensity. On the rare occasions when I can get out of the way, when it almost feels as if part of me is giving up - that's when the worst moments often transform themselves into something different.
Another thing I find myself doing when it feels as if it's all too much is stopping. I pause, a bit how a toddler might mid-tantrum. I check a thought, 'is that really true?' I breathe, observe. I notice there are plenty of other feelings, sensations and small pleasures around too. We can choose what we focus on - that's the distinction.
So what is really happening? My body is temporarily unavailable while it undergoes a total-systems reboot. There isn’t a part of my body that isn’t in the process of being optimised. For now I may have to live as a young-for-my-age thirty something in a body far, far less mobile than your average 90 year old, but the reality is that on good days I’m still feeling lighter, freer, clearer than I ever have been. And by that I mean not since I was a child. I’ve been experiencing how powerful energy medicine can be since my work with a practitioner began in October. I've had to avoid getting too wrapped up in the contradictions as various scientists and doctors disagree with each other as to what is really going on in ME/CFS. I've been happier dabbling in quantum physics to begin to make sense of the seemingly unexplainable.
And my heart writes daily love letters to Nature. Quietly watching the birds, finding a tree to focus on. And as the weeks go by, provided I keep my activity levels stabilised, I notice that deep feeling of exhaustion is subsiding. Walking increases to 25 mins a day. The other part of my 'systems reboot' involves the subconscious. And I see my cells spinning into action, all the energy I could ever need charging through me. My body working perfectly. I travel the world, climb mountains and jump into crystal pools below tropical waterfalls.
And everyday, in its own way, this falling apart becomes a coming together again.
Sometimes kindness wears a high-vis jacket and shouts through a loud speaker. Often it’s as simple as a glance, an understanding, a signal that means that this time, there’s no need to ask or to explain myself. That free lunch and tea offered after a body and mind melt-down in Pret having failed to cross London in time for a train, someone doing a whole tube journey just so I don't have to pull my own suitcase, someone in the USA offering out of the blue to pay for some of my treatment. Most of all it's the people who keep checking in, who will do what it takes to stay in contact and to see me, who don't assume that because of the circumstances I've lost the desire to be sociable, to live as much as I can live.
And the online community, the 'Spoonies', keep me in daily check as to just how fortunate I really am. Someone who can’t get out of bed to get a glass of water but who is going to have to swallow her painkillers dry. It seems we’ve all been there. I remember the terrifying moment at the start of this when I couldn't move my body from a sofa. And how I only just made it to open the door once help arrived. I wish I was there with her. I wish I could do more than simply tell her it will be OK. But she’s strong.
She knows she’s got this.
"Hi Jess, how's the music going?”. The first thing anyone asks if they haven't seen me in a while. And it's hard to know how to reply. I usually find it easier to tell the truth. It's the biggy. It's taken months to feel able to write about it. Let's see if I can talk about it today without mud bathing in self pity or bashing you over the head with my hidden disability. Let's get this straight: I'm lucky. I'm privileged that this is even a thing. And I'm fine. Really fine. Not a clipped, British, stiff-upper-lipped kind of fine, but a 'this is still one of the best things that has ever happened to me' fine.
Perhaps this is how a footballer who can't play or a dancer who can't dance feels. I'm the singer who can't sing, the performer who can't perform, the new producer who can't work. And I struggle, still, 16 months on, to believe it - because technically speaking I almost can. I've written a song and sung it into my iPhone. As you'll see I can just about play, even if something important is missing. I’ve been able to walk (currently on 20 mins a day) for over a year, can definitely talk and present very normally (nearly all the time) so have really, really struggled to accept this.
It's the cost. The cost is vast. The cost, it turns out after months of experimenting, probing and (you might have to get used to this part) weeping at the piano, is my recovery. I've had to choose. And it doesn't feel very real. It feels like the exaggerated stuff of melodrama. And while it has mattered and still matters so very much to me, now, I feel the lightness of it not mattering that much at all. Not in comparison to a future of living more normally. A future of waking up like I used to and starting a normal, limitless day. A day without a moment's thought about what I will or will not be able to do. Walking fast, walking long, real, proper heart beating exercise, thinking at speed and whatever else; rehearsing, singing freely, maybe even performing again, proper socialising, planning. Hell I'm going to love making normal plans again. To have a chronic illness is to see just how abundant life is in really cool stuff to do. Endless events, interesting stuff, fun stuff, social stuff, zip-wiring in Snowdonia, talks with Brian Eno or parties in Catalan castles. Even work falls into that category. I'm grateful for it all existing even if I can't get to any of it yet. That's the thing - whatever the consultants might be saying, I know I'll be back and healthier than I've ever been. I know it's all waiting for me. In the meantime I have to make sure there's no sense of waiting at all. I have to make life work as it is now.
So, what's the story? The first thing I notice when I start writing about my singing and writing is how serious I sound. Hell did I take it seriously! I guess that's inevitable. If anything had the sense of a life's work, that's what music was to me. My passion. My greatest love. And I'm sure there will still be a bit of me in this that sounds as if I think I have something to prove. However relentlessly I pursued my music for the love of it, I have no doubt a part of that was and could still be true. But to really understand where I am now; a truth that's still working itself out, this is where I've come from. I feel as if I'm writing about a different person she feels so far away. This is an (honest) picture of where I used to be.
By the end of 2015 my music had hardly ever been in more of an exciting place. Publicly, nothing was happening. I'd disbanded my latest live project of about two years, though I'd been performing my songs regularly for about 20, with the last 6 years in London, with a long-standing cellist, guitarist and drummer. It was all very deliberate. It really felt like the right time to leave the demands of live work and focus on writing and recording. I hadn't had a release for years - I had this funny, disquieting sense that I was only as good as the last thing I'd put out there. Though the way our material sounded live excited me, the value of what we were creating, the concerts and all that went with them felt somehow ephemeral and passing. A misplaced judgement perhaps, but that's how it seemed. Nothing managed to get in the way with how in love with the process I was, through reality often tried. For as long as I could remember, song ideas, compositions and arrangements barely left my head and heart. I thought about music and whatever went with managing my career for most of the time.
I lived to sing. Sometimes (OK, a lot of the time!) I was a bit too much of a perfectionist. As if there was some holy state of crystalline grace my vocal chords would eventually reach. I trained as hard as any vocal athlete does. Most of the time I simply loved the sensation of singing and where it took me. When I sang I felt I really connected with people. And beyond that, I connected with a power and beauty way beyond myself or what I would ever need to understand. I’ll even confess to a part of me who felt as if I’d been zapped down into human form from another planet. That part of me found a home in my voice and music.
Like 99% of musicians I lead a double life. This is the bit where I feel as if I'm telling you how I messed up. Admitting my part, definitely some part in what got me here and how I trashed my voice. Teaching, my more stable income, had always felt natural to me. I enjoyed much of it, loved some of it though definitely not all of it. I cared about my students and was passionate about education. Like many people, I squeezed it in. As well as the singing, I put my voice through 3 or more days a week of a long tube commute and 5 - 6 hours of teaching virtually non stop in an international school in Greenwich. Sometimes the morning after a concert the night before. And I was fairly blessed as far as teaching jobs go; smallish groups and a ton of freedom to get on with things in my own creative way, despite the usual scramble of admin and school politics that few teachers get to escape. But of course there's no such thing as half teaching a class. I often tutored the London super-rich in the other days, working towards the point where I would eventually leave the school all together. While all you need to arrive at ME is the wrong kind of obscenely nasty virus, you don't have to be a genius to see some causality here. It's something I take full responsibility for. And had music been the only thing I was doing? Well I still doubt I would have stopped.
Back to music, it felt as if the plane was just taking off. This was it. Perhaps it always feels as if you're just starting out when you're that in love with the craft of it. I'd just joined an industry mentoring programme (TSA) to really hone my writing and production. I was getting real feedback and advice from some of the writers of the hit songs you hear every day and was part of a whole new family of writers and producers. After a lifetime of having decided I was a technophobe, I was now a music producer and morphing into a production geek. I was just about to get a handle on my own little studio and while it was a slightly complicated collaboration, I started producing my first artist who had approached me for a co-write. He also happened to have a Grammy. With my own work, I had just discovered a new sonic palette. Jess the 'singing angel' was finding a darker and more sensual world where her voice now belonged. Connections to some of my dream publishers were starting to express an interest in my work. If I wasn't sleeping, eating or teaching I was at my studio. Or sending sound files around the ether as different musicians and producers I was working with laid down their parts or worked on mixes, whether they were snowed up in the Pyrenees, Edinburgh, strings in Bristol or drums in Frankfurt. The excitement was about everything that was now at my fingertips. I knew how wrapped up in it all I was, that I was getting a bit run down and needed a break. Off to India for Christmas 2015 for a rest, some yoga and surfing and..... BOOM! The rest you know, or starts at the first post of this blog.
Fast forward to January 2017 and in a slow burning phase I was determined to still call recovery. Without too many wild expectations, I thought perhaps I could slowly, steadily and above all, patiently tinker away and create music and even record again. Here I was signed off work, perfectly lucid (I thought) if physically limited, with a baby grand and a room I could convert into a decent studio and all the time in the world. I thought I was being realistic. I could barely sing my way through a complete song a day. And I had some golden advice from a mentor: “Why don't you just record your voice as it is....exactly as it sounds now?" This was the answer. Sing softly, gruffly, do whatever it takes to sing effortlessly. It was clear only a few days in that recording anything was not going to be a physical reality. But for every route that turned into a dead end in terms of creating, I knew there would always be an alleyway out.... OK, I can't record, then I'll write. I'll lie here and sing into my phone from bed. And that’s what I started doing.
Sometimes when you write, melodies and words float down as lightly as feathers from the clouds. It's as effortless as reaching out an arm to catch the best bits as they hit the ground. Other days it's more work. Sometimes much more. I still had the essence of a something in my head. A large part of this one came easily. It had come to me the first time I'd been forced to quit the music mentoring programme and I had felt such a sense of abject failure I went straight to the piano and started, in my own whispering way, to write about it. It was a song that needed to be born....
And so began endless attempts of starting to write, stopping, breaking down, leaving it for a bit. Having another go.... There was this strange tidal wave of emotion that would rise up and crash over me. Some days it felt as if it was a response to having all my life force sucked away. To the feeling that the world was almost closing in. My response to the fact that the sounds I wanted to make would no longer come out of my mouth. Some days the tidal wave stopped me playing before I even got to singing. Why can't I do this? How can I expect anyone else to believe I can't, when I can't even believe I can’t? Isn't music; my healer, my balm, my confidante, meant to step in and save me now?
In the Hollywood movie version of this, or perhaps if I was a long-dead composer with proper cojones, I would battle through it all regardless and change the world with the most amazing body of work I've ever created. Unfortunately (for my ego at least) that's the complete opposite of how anyone ever recovers from CFS. If you're that determined to get better (and most people are) you're faced with a strange paradoxical battle in the opposite direction.
And during that time, it arrived in the early hours. A stowaway on a perfectly ordinary musical thought. The kind of thought that ran as a constant background to whatever else I used to spend my time thinking.... a lyric, a better harmony, a little dance track overheard in the morning that is morphing itself into a film score. Still in familiar territory, I curiously open a little trap door in my mind and find myself in what I can only describe as a chasm. A vast and infinite space of grief. It unfolds into nights; myself alone with it deep in the dark. Uncontrollable. Overpowering. Grief, it turns out, when it finds you, is non-negotiable.
Don't take this away from me.
Take away rehearsals, performing and the world I know. Take away co-writing, recording, learning, collaborating, take away chances to meet my musical heroes, take away any kind of success I could ever wish for. Don't take away the flight of channelling and improvising. Don't take away nothing more than my voice, a piano and an idea. Shut us in a room together for the rest of ever with nothing else but this. But this..... don't take this away from me.
It's no longer about Giulio, Pierre or anyone else from 2016. This time it's my music. And deeper than that. It turns out I'm grieving part of myself. My identity. Not simply my face on a CD cover, but a deeper, truer part of who I am. I wish there were a better choice of words for it but I can only describe it as a death of the ego. And not necessarily the ego that so readily gets such a bashing. It feels as if there is a very real part of me that is dying. It doesn't feel particularly right or wrong - it just hurts, it feels enormous, it just...is.
And just to be clear: I know I'm not dying. The people who say there is no cure for CFS don’t know what they’re talking about. This is a coma, not a death. And if this really is the end of my music, there is a whole world of creation or being out there anyway. But that's not how it feels at the time. And I have to surrender as if it really is forever. This is the extent to which I have to let go. The price I have to pay. The murky bottom of the ocean I have to touch before I can rise to the surface again.
Later, in the house alone one day I get slightly more deliberate about the process. Just a steely this is what I have to do. And once I've done the usual resting to recover from my morning routine.... I sit. No radio, writing, reading (I struggle to read much anyway), Netflicks, that reflex and urge to check my phone. Everything off. Just me. Sat here. With whatever this is. Whatever you need to get better Jess, you have it right here. This feels both the kindest and the hardest thing I can be doing right now. It doesn't take long for the chasm to arrive again. And I spend the day there again, getting more familiar with it, with the foggy, unrelenting sadness of it, with whatever the hell is going on.
Eventually I did more or less finish the song. The hardest song I’ve ever written. I sang and played it into my iPhone in two takes, sang the harmonies from bed, dancing this tightrope between pushing through while on a roll without it being too much of a push too far. I waited four days until I had enough voice left for version two. But something in me was so totally and completely used up in the process. Just getting through an entire day was using up so much more of me than I already had. And of course, I only got through because the song so badly wanted to be written. A painful birth. And as a song, well, it's OK, it still needs some work. But it's special to me. Here's how it starts:
I sink into the ashes of the crash,
Did I burn too fast and true to last?
I drove a thousand miles without a spark
Thought I could blaze a trail to light the dark
I wanted to be your story of redemption
I wanted to be the one who overcomes
I thought that I could dance across the coal fires
I thought I was a warrior of love
The truth, like the despair, sneaks up on you too. In the ashes of all that grief, the truth exists in the quiet places. It hides in the still corners of life that probably would have left the older me bored to tears. It's almost domestic. It's low key. It's incredibly, stupefyingly simple. Almost too simple to grasp.
I reach the point where it is so much easier not to touch the piano. Not to try to sing again. Not to listen to new exciting music because I'll get production ideas and it will all be set off again. I promise myself I don't have to touch music again for as long as I need to. And eventually, I make something of a peace with that promise.
I haven't touched the piano or sung for two months. Yesterday I turned down slots at my two favourite Glastonbury stages, inconceivable to the older me. But it felt uncomplicated and light, suggesting someone to them who is super talented and deserves a break. It would have been my eleventh year. Then I went to the piano to find out how things are. The wave has passed; no more crying. Progress. My voice can't make it all the way through a song yet. And trying effects how much I'm able to speak for the rest of the day. I've been told that singing is 'higher functioning', that it could be one of the last things I'll ever get back. But of course it will come back to me if and when it needs to.
There was nothing empty about the songs I created. They were full of soul and riches and honesty and beauty. But there is a peace that arrives with the realisation that the thing you were always driving towards, the thing that you thought would get you somewhere, was empty all along.
Globular Cluster 47 Tucanae, NASA, ESA, and the Hubble Heritage Team (STScI/AURA)-ESA/Hubble Collaboration.
With all this distance, from this new satellite's view, I look back on my life in music very differently now. Now I see how much life there is to be lived. Now I see how much I and virtually everyone I worked with lived. That if it turns out I never perform another concert or write a single song for the rest of my days, I’d be genuinely, properly, content and grateful for everything that I have done.
The realisation hit me when a songwriter at an earlier point in her career had got in touch for mentoring. My thoughts were already tellingly different from what I would have said pre-CFS. She asked for a run down of some of the places and people my music had taken me to and how I'd got there. I'll always see my career as small fry; very modest but valuable in its own particular way. Less than 8 seconds in, her response surprised me, "Wow... If I could get to do any of those things, I'd be really happy”.
There were a few other events in my life that I dismissed as failures. A crazily ambitious animation that missed a deadline and never got finished, some of the teaching I mistakenly saw as treading water. It’s now I see the extent to which any success I did ever achieve almost bounced off me. Even more sadly, how much of what I experiencing bounced off me too. There is a small but important truth in all of it.... there was always something, however tiny, missing. And now I think it was most probably a part of myself. I can see how much there was always another place to get to. Always another stop on the elevator that I hadn’t reached yet. I had heard a lot of ‘I just don’t get why you’re not totally famous yet’. Even when I knew how little of that mattered, something in me must have listened and let it waft around in the background of whatever I was up to. And then there were all of the daily or often far too public bum notes, moments when my voice was a bit flat, shrill, harsh, weak.... I don't even think I saw myself as a 'proper' musician. My effortless piano playing quite naturally and rightly masking the untold hours of practice. Always reaching, always striving. However much I banged on about how much I loved it all, how present to the process I was, I still spent far too much time being overly preoccupied with the fact that I wasn't Imogen Heap yet, or Laura Marling or even Adele. The truth is, there was nothing I ever could have done to have been good enough. It wouldn’t have mattered where I would have got to.
Now I have snapshots. Fucking glorious little snapshots. And I live them even more presently now. Picking the most precious moments out as if I'm choosing the most shimmering of dazzling orbs to pluck out of the night's sky. It's as much a collection of crazy shit as anything else. Ready to come with me? Hold on to your seat....
Locking myself in the school practice rooms with a piano, pretending I'm Elton John, an unusual choice of idol in the era of Take That. Playing the same guitar riff for months on an electric a friend has loaned me at 17 when I am (to use my own words at the time) ‘monged out of my brain’. I'm living off painkillers, depressed and have just permanently lost half my hearing. The first time I sing in front of a microphone at a rehearsal in a bassist's front room.... And the discovery hitting all of us... 'Wow Jess, you can.... sing!'. My first discoveries of recording. Singing in my once bleak primary school classroom that had since become, in my eyes at the time, the coolest smoky jazz club. Performing there means that by 18 my dreams have already come true. I have often described how music saved my life. How funny (you could even say perverse) that this time, accepting that I can barely sing or touch a musical note has been such a crucial part of recovery.
Quietly writing songs while studying in Sydney. Busking, busking, singing and playing until we have no voices left for the Barcelona rent. Lots of Bossa Nova. The sound of the sack of freshly sung for coins hitting the desk of a language school to pay for a Spanish course. Working for a solid year as a Heavenly Music Machine, an all silver and white, glitter-smothered angel Barcelona street statue, improvising my Nina Simone inspired bossa voice and guitar because I’m long passed the end of my repertoire and the crowd aren't going anywhere. Getting home exhausted, but with a pot full of riches and bizarre notes. The time a weirdo ran off with my money pot when I was working far too late. My Spanish good enough by then to tell him where to go when I chased him down the street and grabbed it back. I'd had this crazy idea of working through December (well, I was a singing angel). Days barely scraping pennies together for the last carrots at the market after ‘angeling' in the snow.
Being spotted. Later an album launch and a tour in Canada. A crowded rooftop gig in Montreal, the house with the lilac trees by the lake. More angeling in Brighton. Auditioning and getting a residency at the Henley Festival. The feeling of it unfolding. The tiny concerts, in a lift at the Edinburgh festival, at a Buddhist Tibetan lama's tea party. Exchanging CDs across South and Central America. Regular slots at Havana’s Casa de la Troba. Operatic poets with long flowing robes compering a community music night, while a hundred or so Cubans all join in with my songs, skilfully playing whatever they can lay their hands on that makes a noise.
Walking onto that giant stage, the gentle nod between Jools Holland and I as he walked off and I walked on into the lights and the crowd. Storming the Barcelona cabarets in fishnets and hot pants with an eight woman country band. Walking down a dark country lane, a freshly mixed CD of Demons to Tea in my pocket that Mickey Taylor recorded in exchange for babysitting. Recording in Nick Parker's kitchen. All those hand made CDs in the early years. Burning batches of them, illustrating and signing them, a small family production line running late into the night. The feeling of writing something you love, that you can't wait to get out there. The craft of it. The magic of it.
Every one of the years I played Glastonbury. Signing my first publishing deal. My first royalties. Time with Jean-Rouselle in Versailles, hearing his original organ riff to No Woman No Cry that stopped Bob throwing the song away. Later he tells me about the other songs he's rescued for Marley and the Police, he's watching Dangerous Housewives and a squirrel, one of his many rescue animals, is scampering up the curtains. Singing at weddings, christenings, funerals, the ceremony of it, the alchemy, the human connection. In churches, bars, restaurants, homes, schools, up mountains, on beaches, on a beer crate, on the back of a lorry, a big stage in the street, on stages so big you feel lost in them, a terrifying one with no sound system in an underground Elizabethan style drinking den, under a washing line in a tropical garden. In Barcelonnette with Brazilian drummers at 4 in the morning. Winning over the bored music execs at the Wilderness hot tubs, packing out The Shed in Charlbury and making it overflow even further with stories. The little crowd gathered together for a concert in a thunderstorm in Brazil. The gig in the bar with the Southern-most piano at the end of the world in Argentina.
My heart exploding in my chest so loudly I fluff my first line as Emma and I...in a Grecian white dress… perform to a thousand and more people all hushed, waiting... Pierre Perrone handing out my CDs to everyone and anyone important in music. The excitement of it all coming together in a rehearsal studio. All those London gigs, the Oxford gigs, the difficult gigs, the terrible sound gigs, the talking crowds, the dedication of Emma Butterworth on cello. There are all sorts of things to be grateful for in my collaboration with Emma, Maitreya on guitar who became more than a brother and Neil on drums; droll and totally dedicated, seamlessly pulling me into time. The other singers who joined us, the harmonies. The endless, endless lugging of gear…fitting my Nord piano into a Ford KA. Me alone with a piano, late so many nights. The intensity of composing, improvising and songwriting resulting in so much burnt food and missed trains, I should really stop being surprised every time it happens.
I keep noticing how the people are as present as the music. All the friends, fans and supporters. Many good sound engineers. A few bad ones. The other acts. The person who spots me at WOMAD and still comes to my concerts twelve years later, the man who stumbles across us at a gig and later travels to London from Wales and back, just to catch us play again. The kind, kind people who work in music (I've forgotten the shits but in my experience there are hardly any), all that endless advice and small favours. Working with Sean Hargreaves in a now demolished Highbury studio, doing the vocals to Find Your River at 2am as we're running out of studio time and this is the only way to get this done. Playing my songs with some of the very best musicians in the world. Comping vocals, mixing strings. The live sessions, the joy of hearing your songs hit national radio. The moment I met and started rewriting ’Sanctuary' with the writer-producer who calls me Potato Head (Aretha was his Sausage Head). Knowing that, not only were we now working together, but that we were friends. Making it happen. Falling, rather too publicly, into a large, ornamental lily pond at a Bollywood beach party before being asked, post slime, to perform something. Singing about a sorceress, my voice carrying perfectly through the sound system across the beach as the waves gently crash under an Indian full moon.
Wow... If I could get to do any of those things, I'd be completely happy. And the truth is, I really am.
Moon Tree by John Joannides used with permission
If you're not at least a bit of a hippie as I am, this might make you vom. But it was one of those moments that are like signposts on this road to recovery. I'm in the car, being driven past Hixet Wood and catching glimmers of the moon as it flashes in and out from behind the trees. I get a feeling I've often felt, a familiar and surrendered offering to life. A feeling that speaks for the one in a 400 trillion chance of a lifetime that I’ve been given and says….'Use me’. For the first time ever I receive a clear and simple message back; ‘You don’t have to do anything, Jess’. It sounds so ordinary in its clarity. Your existence is enough. All you have to do is be.
Now this is a funny post. I can barely concentrate for long enough to write it.
A sentence or two.
Glaze into space.
A lot has happened. A lot I now notice I've told you in my head. The quiet but relentless storyteller in me I don't think I used to be so aware of. Now I see how much it whirs away, even when the engine has stopped. And now, piecing these words together, a bit of me somewhere else (where???!)... I feel as if by writing anything I'm cheating a bit here. There's a part of me that is really shutting down. And needs to. Needs to be kept carefully wrapped in its own cocoon. The bit of me that thinks. Not that I expect it to stop. I've mostly felt this as a desire to dive down deep into clear, silent, turquoise water. I could never dive down deep enough. Here I am coming up to the surface to say hi.
Progress has felt very slow. I've been seeing a second, amazing practitioner for ME and have been commuting from Oxfordshire to Surrey via London to see her almost once a week. Extremely kind friends putting me up, resting to recover between travel days. Navigating the trains and London is exhausting, but it's worth it. I'd do a one woman wheel-barrow race to Birmingham if it would make a difference.
There have been definite glimmers. Glimmers of energy. Brighter, lighter, clearer. So much has been dealt with, all that's left seems to be this final and ultimate conundrum; that the energy packs of my cells still don't function normally yet. And the more myself I become, the more of me there is to bash around inside this body that despite perfectly normal appearances, so often can't do what I will it to. I'm far from down for most the time but am shockingly tired. Shot to bits.
Lots of good moments: I've noticed that I'm almost never bored. Being with my parents who sometimes understand things even better than I do. Time with friends who are, quite frankly, rocking my universe. Making it seem when I'm with them, even if all I'm doing is hanging out in the kitchen or lying on a sofa surrounded by them, that I'm living an adventure. And the rarest blip in my recent human experience; going to a party looking down high over London and dancing as if everyone is watching for 7 minutes. Watching spring emerge and even if I haven't managed to coordinate my own emergence with it, my heart surges possibly more than any other year. Perhaps I am really emerging, only deep inside a tightly closed bud.
So many moments or days of paying the price. The very idea of moving hurting. This level of tiredness aches. Down days lived in a murky, messy scramble. The anger that finally surfaced and raged, no profanity obscene or colourful enough. Though I think a lot of it has a 'don't mess with me' determination and a very satisfying meatiness to it. No, the anger, the feeling pissed off has been a good thing. Much harder is thinking that I'm doing pretty well today on my way to treatment, when my body suddenly screeches to a halt. Children of the 80s, remember the Transformers cartoons and how they robotically shut down? It's a bit like that; a mechanical pulling of the power plug, 2 metres from an escalator at London Bridge.
I can't walk a step further.
That's when it's so easy for the despair to flood in. Only of course I do keep walking. Like a very, VERY slow, stately granny. Stately darling, stately. Until I eventually make it, via Surrey, back to my bed.
Mentally at least, I'm going to stay in this shut down state quite deliberately now. Lower the bandwidth. Go with it, nestle into the cocoon. It's what I need.
It's been so healing and helpful writing this; articulating it all, making sense of it, finding the meaning. I've found myself doing less of that recently. There is more meaning than I ever thought possible to find or create in what is happening to me right now. But it's unlikely to be anything my mind will really be able to make sense of. And I keep finding, when it really comes to it that my thinking self doesn't have a huge amount to offer. For all of its good intentions it's been meddling a bit. Meddling in a process far beyond its own capabilities.
I get self-conscious about sounding like a total sycophant, but as this is how it is, I really shouldn't care: there is no wisdom or state I could reach that would ever be more important than love. I will resurface any time for the people in my life. Sometimes you might even catch me holding up something exquisite (or hideous and fascinating) I've found on the ocean floor.
Photo by Eusebio and Christina Saenz de Santamaria, One Ocean One Breath, used with permission
There is a soldier in a distant outpost, at the far reaches of the kingdom and word hasn’t got through to him yet that the war is over.
After all these years.
He’s been the embodiment of dedication. Drawing out maps and battle plans, sharpening weapons, stocking provisions, strengthening the battlements, ever honing his target practice. He’s been doing this for years. A worker. So good at what he does that he is what he does. All passion, decisiveness and purpose. And now a messenger, after months of travelling has arrived to tell him that the war he thought he was still fighting, has been over for years. He will wonder, of course, what it was all for.
The soldier sits; crumpled, blank and deflated, looking out over the valley with the messenger by his side. "But what will I ....do?" he asks.
After all this time.
"Go home," says the messenger, kindly. "Find your family. Go back to your farm. Drink cider. Lie in the sunshine. You don't have to do anything. The war is over."
In the early hours of the next grey dawn the messenger finds the soldier up high in the lookout, still on sentry duty. Still alert and scanning the horizon, primed by the existence of a low background hum of anxiety, like tinnitus. It's been a part of him for so long now that he no longer hears it. Life without it is unimaginable.
Later, they sit opposite each other by the fire, a hare roasting on a stick. "Take off your uniform," says the messenger.
"Take it off".
"What? No. I can't."
The messenger pulls out a fresh pile of civilian clothes from a sack, "Go on."
And even though the messenger does everything in his power to avoid this, the soldier can't help but notice the feeling that he's done something wrong. It quavers somewhere underneath the shock; a single fish below a frozen lake. After all these years. What was it for? The soldier finds his hand shaking while he undoes the buttons of his tunic and changes his clothes. His voice about to crack. He doesn't do this. He does standing up straight, "Yes Sir!", efficiency, precision, neat lines and strength.
"Good. Now burn it."
"What? No. I'm a soldier." They say nothing for a moment. Both watching the smoke from the fire change direction. Silence for all but the crackling and spitting of logs. "If I don't fight, I don't know who I am any more."
"Who you really are has just come all this way to find you," says the messenger quietly. Travel weariness washing over him like a wave, brass buttons resisting and chevrons blazing while he feeds the rest of the soldier's uniform to the flames.
The war is over.
I started this, I promised you it would be real and that's what you're going to get. And I'm going to carry on. And at risk of being totally self absorbed, writing and articulating it all is really helping. The outside world got so much darker this week. I'm not strong enough to march and shout for now, so part of my own fight will be to keep digging deeper.
There are times, perhaps even the vast majority of the time, when life with ME has become a new sort of normal - and yet part of me wants to challenge that. I really don't think humans were designed to flop around like beached seals in a hinterland where the deepest exhaustion and illness meet. The reality of this can be pretty miserable. While a good deal of the time I'm totally accepting and ok with it all, there are moments when life drags along the darkest dregs of human experience. I know that like anyone I was built to be joyous, exuberant and expressive. Or at least quietly happy. And it's so natural to associate happiness with having energy and vitality. Much of the time I have neither. Perhaps this is some kind of bizarre mood gym where I'll come out of all of this having choreographed the most perfect dance between fighting something with all my being whilst at the same time embracing it, totally, as it really is.
I’m back in the UK in the small Oxfordshire town and home I grew up in for the UK part. I am indeed hunkering down. I’ve had the place to myself for a couple of weeks and I’m rapidly burning my way through the fire wood. It feels perfect to be here despite the dullest and dimmest January murk. A world of dark, sodding leaf mulch. It has its own kind of beauty and I feel a new strength coming from the earthiness of roots. A lot can be born in the darkness. I'm much nearer my siblings and soon my parents too. I still find being sociable tiring but like many people, I've never been good at spending overly long stretches of time on my own. I will hit the right balance. I still know that time, hugs or even phone calls with the right people are my medicine. I get physically drained looking after myself and felt miserable about it last night. Only a few days until the house is more full again.
Leaving Mallorca with my stuff and a heavy Martin guitar was shattering. But I do have some amazing friends - the kind of friends who book flights to Mallorca simply so you don’t have to fly home with everything by yourself. How uplifting is that!? I loved the bright white sun on the water, had all the help I needed moving out, got some kind of closure as far as work went and have no doubt I’ll be back again and again and again. I miss the light, air and sea already.
Recovery wise, we had that steady, sometimes elated flow of progress leading up to Christmas and this is probably just a bit of a dip. I've seen two really good consultants which makes all of this a bit more real, though I've heard a bit too much of "you do understand there isn't currently a cure, don't you?". Not that that dents any thoughts of recovery. Hopefully the physio and occupational therapy will help. My NHS CFS service is in the process of being drastically cut so it will all take longer. Apparently though, there isn't really anything I should be doing differently. That was the question I pressed answers for most.
I don’t even know how I managed to work the hours I did now, let alone climb a peak. I’ll be honest with you; I’m so deeply, deeply tired of being tired. In other news I had a patch last week where I kept jumping up and down saying “I don’t feel ill, I don’t feel ill, I don’t feel ill!!!” Because, while I can't say I feel well, I think I can cope with the tiredness if it does’t actually hurt any longer. Much of it has stopped hurting. I know that we forget to celebrate the small victories, that it’s so easy to miss the fact that like all those warrior snowdrop buds waiting below ground, my body is almost always in the process of coming back to life.
I did my tax return. I caught the train to Oxford for a vigil to remember Giulio in his favourite pub. I can do a full pilates class even if I spend the rest of the day utterly and completely wiped (this is probably a sign that I need to tone it down a bit, though it often feels good at the time). Then I find it curious that even with you now I'm constantly measuring progress in terms of the actions I've completed. CFS forces you to live a different reality in terms of how much you're going to physically 'do' in any given day so perhaps that makes perfect sense. Perhaps it helps me to give you a better picture of where I'm at. So I'll keep going.
Singing: no more than about one or two complete songs a day. That one still has the power to catch me out with a little tug of despair almost every time. I'm curious to work out why it's still happening. Why so often it's as if that vocally expressive, communicative part of me is more shut down than anything else. The part of myself that is the source of so much happiness. I miss the feeling of doing it more than anything. When I get it right I dig down into a place of stillness instead. It's perfectly possible to reach a state with this where everything is exactly as it should be - which isn't simply positive thinking, it's actually closer to reality - it's all there really.... is. As you can see, I'm far from always getting it right.
I know I’m impatient. I know I still need to chill out a bit. I know this is like turning around a giant oil tanker. It’s long and slow and like waiting for your bones to heal, it’s simply taking as long as it takes. ME fluctuates and while it might feel and look as if I've taken a step back, I'm still better in other ways than I was only a few weeks ago. This condition still utterly baffles me. A top consultant I saw recently told me, "don't worry, this baffles us too". I accepted it as a part of me (for now) a while ago. And yet there is something in this that perhaps I’ll never be able to accept. That after all this time, after feeling this much better, that my body is as limited as it is.
At the moment I have about two, thirty to forty minute bursts of moderate activity in me a day. I moved some boxes of possessions into a loft room (I’ve been moving them in stages over the last week), then rested enough and later, with a bit more energy in the bank rebuilt my Nord piano ready to record tomorrow. I am going to be recording. Slowly but steadily. I’m writing music and songs again and going back over old material to do some re-writes too. The melodies and arrangements are all there, bashing around inside. Outwardly, it's happening at less than snail's pace (and so it feels). What I'm producing couldn't be more minimal. The game I'm playing right now is to be ok with however much or little I do create or 'do' each day. Funnily enough I think I inadvertently spelt out my game plan in my first post in November: to be as here as I can with it all, wherever it takes me. A kind of process of presence. Whether it's dull or despairing or a burst of what I used to call normality - which these days often comes with its own burst of joy.