The irony of sitting in a London cafe and waiting 90 minutes to muster up the physical strength to walk a hundred yards into the shop to get the hiking boots I really wanted wasn't lost on me. I have the boots like a talisman now. I will need them and I will use them.
I started crashing the last couple of weeks before I left the country. It's not very surprising with Christmas and the countdown of planning and packing. The real mistake was walking far too far (for me) for three days in a row.
The reality that I would be about to embark on the longest trip of my life with ME symptoms like this occasionally loomed in the distance like clouds. It has felt disconcerting and even occasionally a little sad. But I haven't properly crashed for months now. I hope I can turn this into little more than a blip that has shown me my limits. I know how to manage things far better now. I know not to panic.
I liked the idea of setting off from our tiny local station and my parents saw me off. I couldn't tell them how grateful I was for looking after me this past year. My Mum, Catherine just smiled and said "Thank you for getting better". I got to the airport, fairly lightly packed and feeling good. Very ready for this adventure. I turned down the mobility assistance my physio has asked me to book as back up, much preferring to be free to do my own thing and walk onto the plane.
I wasn't very far past security when I truly started to dip again. To the point where I didn't feel I could move. It's a feeling of exhaustion that can leave you fighting back tears. I wolfed down some food, heard my flight to Dubai was boarding and started to look for someone in a purple fleece who could help me. I didn't find anyone on the way to the gate. I finally found the Virgin executive lounge, made my way up the slinky glass staircase and virtually collapsed in front of the attendants explaining I needed help.
A few minutes later the wheelchairs came. A single one, later an extended golf buggy, finally a row of 5 chairs all strung together controlled by one driver like a 5 year old's make believe bus. They carried my small pack onto the plane and I sunk into my seat, crying in a funny mix of relief and exhaustion as the plane took off. This thing I had been plotting and planning for months was finally happening.
The hard thing about this crash is that it has reminded me of how it used to feel all the time. Every waking moment. In fact this was how I used to wake up. This isn't that bad. I'm no longer sunk down the bottom of a well so deep the sunlight hovers somewhere, a kilometre above above you like a penny. A tiny shimmer of an ordinary life so barely, discernibly in front of you it can only feel out of reach.
It isn't such a terrible thing to be reminded of where I was, right now. I had no idea of how to get out from down there. This is how far I have come. And here I am shooting through the sky again. This has been the hardest thing I have ever done. And now I mostly just feel crazily lucky.
Photo by Laura Rudge.
So many once everyday, tiny or low key things have felt huge at the same time over the past couple of months. Tonight I'm on a strangely distant and yet incredibly familiar post gig high. I performed the only song I've written about the last 2 years and did a couple of readings from my writing at a local community speakeasy. It was hosted by Alan Fraser, a sax, trumpet and clarinet player I've known for a large chunk of my life and Laura, an old school friend sang some beautiful close harmony with me.
I was incredibly nervous considering this was something I used to do all the time and wasn't even sure I was up to it. I sat there about 20 mins before I was due on stage, my mind doing what the mind of anyone who knows chronic illness will be familiar with: I'm really cold. I'm so tired. Shaky even. Can I really do this? Actually I'm not feeling very well at all really....am I crashing a bit? How many hours since I last ate? Am I OK?
And I caught myself and talked myself out of it. Remembering how robust I really am. How only a few months ago I would have physically struggled to be here. And more importantly, not very long ago was still being sent into a deep depression over the loss of not being able to make it through even half a song.
And it happened. Sitting under the lights behind a mike felt like being with an old friend you haven't seen for too long. I loved sharing the readings as much as anything. And you couldn't hear a pin drop, the audience wrapped under a spell, on a journey. I messed up the keys a fraction, which always frustrates me when I usually nail the piano but that's the thing about a gig; there is always something that evades you. And that's the way it should be. My voice held out. More than that, I felt a new power in it and in what it was choosing to say. My voice is more growly, low and husky now but only because it has been forged in a fire.
Many didn't know what it had taken to get up there, what a step this was. And there were were friends that did. I spent the rest of the evening swimming in the sensation of being able to do this kind of thing again. And as I finally relaxed while the band finished up, I let it sink in a little. This is another way of being 'back'. But I'm in no rush to perform. No strong pull to seek out more of this yet. Some relatively effortless recording maybe.
I was planning to read an extract from the blog piece The Cupboard Door into the Chasm, that documents how Ashes was written and where I was at that stage of CFS. Not quite the 'unable to move from the sofa to the kitchen' stage but still some of the darker depths I reached. I spent part of the day editing extracts, but in the end it just didn't feel right. I went for the only super short story I've got instead.
Someone pointed out how fitting the title was later on: The War is Over. Because, I have moved on from the darkness and muteness now. As far as any battle is concerned perhaps just maybe, it is. Over. At least every day, every month, something of this is over now.
Roy's Peak, South Island, New Zealand by Stephanie Vella, Instagram @steph_vella.
(One of my bucket list peaks. Let's see if I make it).
I have just done the thing that makes me feel more alive, happy and excited than perhaps just about anything else could. It's my version of holding up a giant (giant) finger to ME/CFS and all that came with it. And without meaning to be trite (because it's true), at the same time doing this forces me to give this pretty merciless illness an even more gargantuan embrace of gratitude:
I've just booked a round the world ticket.
Possibly not the most sane thing to do. Especially after 2 years of being pretty much unable to work. But I'm making it happen somehow. I'll do it in a new way if I have to. Become a different type of traveller. Many of the people working with my recovery love this plan and will be able to keep supporting me remotely while I'm on the road.
In the very worst moments of this, when I was least mobile, I lay in bed or on the floor for hours, imagining myself doing all the stuff I love. I took my mind and imaginary body to the great outdoors. To the places where nature is at its biggest. I am convinced that feeling my body climb, run, jump and swim every day is part of what has got me this far. I breathed in the thin air. Felt the shocks of cold water as I dived in. Floated in warm sea salt. Lay under constellations of less familiar stars.
Then, last May, in a Skoda showroom while a car was being repaired, my sister broke the news that she was moving her family to New Zealand. My head throbbed and the world wobbled at that point (it still does sometimes). Back then walking for any longer than a few minutes was a challenge. But I started matching all those imaginings with my dream route to go and find her out there.... and then I started to imagine my way home...
And well... it kept becoming more and more real. Using a zippy mobility scooter inspired me, thinking I could go anywhere in this thing. I thought of the friends all over the world who I hadn't seen in a very long time. I started getting in touch. This trip is about reuniting with them (I lived and studied in Sydney once, a couple of those friends have scattered even further). Until I found myself sat in a travel agents pulling dates and places out of the air. My bodily and financial heebie-jeebies screaming what am I doing???!! I kept editing out counties partly for my immune system but also for simplicity's sake, because I must avoid getting too tired if I ever can. I'll let the route pop up as a surprise for you as we go along, but I'll be spending at least a month living off-grid, half way up a remote New Zealand mountainside on South Island.
This trip is about where nature and healing meet. It's about life being too short to not get out there and see as many rocks, mountains, lakes and blades of grass as I possibly can. My physio targets are now mountains I may or may not climb. But I know I can now walk enough of a distance to do this. And I trust myself to manage things sensibly. I have to be ok with only getting to the foot of a peak and not being able to start, let alone get up it. I will have to have the will power to know that feeling that I shouldn't, that I can't isn't a can't of limitation. In this case it is often the can't of getting better. I know that I can rarely control the timing. But I will climb those mountains one day, this trip or not.
I have done a lot of travelling in my life and a lot of it was seeking. I have nothing to seek anymore. I have nothing to run away from (try running away from ME/CFS: you definitely won't!). I could spend the winter getting better here in the UK. Or I could do this.
So let's do this.
This is me just after being discharged from my physio. It doesn't mean it's over (quite yet). More of a 'you know what you're doing. You're on your own now'. There have been lots of dips this month and sometimes we forget how far we've come. Wheelchairs and scooters have enabled me to do all sorts of things but no more wheels. Huge thanks to my physio Jenny and Bart's Hospital CFS service which is in the process of being cut out of existence. This physio was crucial.
A year ago I was battling to see how many individual footsteps I could make beyond my front door. Some days I could walk 3 or 5 steps, some days a few yards, some days I wouldn't make it to the door at all. Much of everyday life was reduced down to the laws of time and motion. Using my then very limited (shot to bits, wired, emotionally and utterly exhausted) brain to somehow strategise my way through the ordinary tasks of each day. Every little shower a battle, getting dressed an achievement. I remember making a little camp on a blanket in the middle of my flat with almost everything I might need because getting up to get something like a glass of water was so hard.
The uncertainly has been one of the worse aspects of life with CFS... this little dark undercurrent. The words from my consultant, "Look, I can see you've very motivated, but so far there isn't a cure". Being told I need to accept and adapt. Coming across people who have had ME for 10 or 20 years. The feeling of being locked in. That often ominous trapped-ness has had a hidden blessing in it; without it I never would have been forced to find the other ways out. Other paths to freedom that I never would have taken. This has shown me who I am beyond my doing. This has shown me being.
I have been very fortunate in other ways. Firstly, for whatever reason I have known that the 10, 20 year-long ME story isn't mine. But I haven't been entirely realistic either. At first I kept assuming I was 3 months away from full health again. When I crossed the 3 month mark for the fifth time I set a new ‘deadline’ to be significantly better by. Somewhere between hoping for a miracle but having something to work towards. The very helpful, if imaginary timeframe that no longer needs to be secret was 6 months ago then - the end of September.
And well, have I met it? Not quite, and definitively kind of. The very typical hour I lived only two weekends ago would hint at no. An hour that could sum up much of the last year.... I was at the piano and inspired and started singing. I let it out, it felt good and free... could my voice be back? And then the singing stopped in its tracks, my vocal chords powerless, breathless and sore. And nothing I could do would fill the emptiness in my chest to create a note more of sound: no. No more singing. Not much talking for the rest of the day either. And the September sun was gorgeous and I walked down to the river. Only I didn't get very far. All I could do was lie on the grass watching people with dogs and families walk past on one of my favourite walks in the sunshine. I wept quietly behind my sunglasses. Trying to be OK with it, but also knowing I would pay almost any price to be free again. To sing and walk normally.
But I have turned a huge corner too. Probably because the experimenting and investigating has never stopped. More than one of my more left-field discoveries have made a huge difference (I will document more of this later). But it's also the culmination of everything I have been doing and just as importantly, not doing, over the last year.
Today I saw that the floor needed sweeping and swept it, forgot something upstairs and popped up quickly to grab it.. more than that, I've done full plank press ups in Pilates for more than two weeks in a row. No consequences.
If not fully healed yet, I am free of the worst of ME/CFS. I went to London for the weekend and, while I didn't make the party I was planning to go to to celebrate, I carried my case up the tube steps a few more times, I was able to brave more than one shop (including a whole 20 mins in TK Max so I'm already clearly a ninja). I went for a walk with a friend I hadn't seen for 6 weeks and we set off into Vickie Park. 20 mins in Alex looked at me, "Jess, I wasn't going to mention it, but look at your walking?!'. And I went on to walk and talk 6 kilometres that day. The next day I went to my first workshop in nearly 2 years and stood up and engaged with people for extended periods of time. I even danced a bit. I danced without consequences. I danced without my body shutting down on me. I danced. And I was fine for the whole week that followed and beyond. I was fine.
I went on my first mini-bike ride today.
And I am fine.
And then I went on a night walk.
And I will be fine.
I will be completely fine.
If you every come across anyone who has got over (or is getting over) ME/CFS I can assure you that they know precisely what it really means to live the delicate mixology that matches relentless determination with the right kind of letting go. Where you learn to surrender without ever giving up. Because it's the individually honed alchemy of all of those things that gets you there eventually. And the fact that I've hit on the right formula and am still persisting doesn't make me particularly brave or special. I just want to live a pain free, active, energy filled and fucking fabulous life as much as anyone.
'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.