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.
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“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’ve had no choice but to say something of a goodbye to singing and music. The last song I’ve written really feels as if, for now, it could be my last. 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 now even a thing. And I'm 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 have managed to write a song and sing 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 small distances for over a year, can definitely talk and present very normally 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 equally 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 perfectly average, 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, 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, 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. 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. But to 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. Someone who feels so far away. This is a picture of where I used to be, as honestly as I can paint it…. 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 with a long-standing cellist, guitarist and drummer. I’d been performing my own songs regularly for about 20, with the last 6 years in London. There hadn't been 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. 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. Usually daily. Most of the time I simply loved the sensation of singing and where it took me. When I sang I felt I truly connected with people. And beyond that, I connected with a power and beauty far 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. With my focus so deliberately on learning to produce myself, 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 absorbed in the craft of it. I'd recently joined an industry mentoring programme and was getting feedback and advice from writers of the hit songs you hear every day. 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 complicated collaboration, the first person I was producing also happened to have a Grammy. Some of my dream music publishers were starting to express an interest in my work. If I wasn't sleeping, eating or teaching I was at my studio. 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! ----- Fast forward to January 2017 and in a slow burning phase I was determined to still call recovery. It still felt as if my being was submerged, deep under thick, syrupy water. Only I had lost any sense of depth and was trying to function as if I was breathing air. 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, back in the family house where I grew up in rural Oxfordshire, with my favourite piano in the world (a Petrov 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 half a 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 songs, 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 something in my head. A large part of this one came easily. It had come to me moments after I'd been forced to quit the music mentoring programme for the second time (“We’ve had students recovering from cancer who have found our programme beneficial, you really should be able to write something”). I had felt such a sense of abject failure I went straight to the piano and started, in my own whispering way, to write a song about it. I played with one hand so the other arm could support my my ridiculously heavy head. The earliest hints of Spring 2017 that I definitely didn’t feel ready for, pushing up through the frozen earth outside the window. 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 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 lost in 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 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 wrong or right - it just hurts, it feels enormous, it just...is. And 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 actually 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. A steely this is what I have to do. And once I've rested for a few hours to recover from shuffling some porridge together and getting dressed.... I sit. No radio, writing, reading (I struggle to read much anyway), Netflix, 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 one take, sang the harmonies from bed when I was able to another day, dancing this tightrope between pushing through while on a roll without it being too much of a push too far. I waited another 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. Simply 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. Stop. 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’ll take the risk of sounding like a total sycophant. I trust getting closer to the truth is worth it: 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 maybe 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, stock-piling 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. "What?!" "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. It feels like that too. 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. I found out late on Christmas Eve that my Mallorca contract is being terminated. I know it has nothing to do with my teaching, though it was a shock and a badly handled ending. And wierd to have a project terminated when you feel you've only just got going. So... I have no idea what comes next but I am OK with the uncertainty. Funny how I recently posted that I could loose all this and still be OK. And I'm getting to find out that so far that is, properly true. Goodbye creative job pulling something new out of the bag every day. Goodbye mission. Goodbye excellent salary for a few hours work a day. Goodbye flat. Goodbye driving to work through the sunshine, mountains and silver glimmers of the sea. Goodbye swimming pool in the garden five time the size of my London flat. Christmas was spent in bed with ME symptoms back to September levels again. All those months of work...to be back to this. When it's bad it feels dark and chaotic and out of my control. Could hardly walk yesterday but now I seem to have pulled something together. I'm better again and have just managed a gentle stroll.
Perhaps the mountain, getting so very much better and finding a creative way of paying for my treatment was what that chapter was all about. I thought I was about to live in Spain again for good. Itinerant Jess finally lands and 'settles' on her beloved island in the sun. I've lost count of the moves between the two countries I've made so far. This story is going to be more complicated and interesting than I thought, and part of me kind of likes it. But by that not all of me. All I do know is Mallorca is always going to play a huge role in my life. I never took that amazing opportunity or lifestyle for granted. Jobs like that exist! I spent hours by myself in my own semi-retreat, unable to go out normally for much of the time. But a few weeks ago, post mountain, I started getting this nagging feeling that something was missing. I know it all starts with you and your relationship to yourself, but it's back to that need for deeper levels of human connection again. I was going to start it as a Mallorcan project (it's not that I don't have dear friends there) but I'm clearly meant to be UK based again for now. Friends and family are the medicine I need. There is no doubt my body is regenerating. I can feel it all quitely below the surface. And the discoveries I've made recently, which are still too fresh to blog about are far more important than anything. More important than what happened on the mountain. And definitely more important than living in Europe's Beverly Hills and my ensuite marble bathroom (though, yes, I will miss it and plan to build one of my own one day!). Current plan is to hunker down in the UK darkness and hang out with the people I love. Come and find me. Something unexpected happened last Thursday and things are very different. I want to take you straight there but all the signs and struggles on the way are part of this too. You’re unlikely to feel sorry for me any more. I get to wake up in streaming sunlight and put a bikini on before swimming in the sea, regularly, into December. I really miss people but I’ve found a peace here. My first few weeks in Mallorca were just getting to the end of each day - work, peeling myself out of the car, bed, work and rest…. As things have worked out I'm teaching in a large organisation and putting on a normal front for three hours every day has helped. The teaching can be tough but it’s probably the most creative I’ve ever done. I get to live in Spanish again. They could have added ‘perfect for someone with ME/CFS who doesn’t know how far they can walk on any given day’ to the job description. The singing voice and any real vocal stamina hasn’t come back yet but I’ve started trying again. It will. The bulk of the bear has lifted. I no longer slug around in toxic soup, or if I ever do it's much thinner. I won't bore you with the first two to three key stages of my treatment, except that they've been a success. Gradually - and it's been the most painstaking physical and mental process, I've been able to do more and more without the symptoms getting worse. I’ve been very lucky, if I hadn’t found the help I had, I would have only had my first specialist NHS referral a couple of weeks ago. The support, the love from friends and strangers I've connected to from my last blog piece helped me get here too. Every message, every Skype call feels invaluable. It makes me wonder why it took me so many months to 'come out' in the first place. A number of people talked about a treatment called the Lightening Process which I'm still considering. I'll be pondering the mind over matter conundrum for a while... While I've never wanted to bully my body into getting better I'll happily lead it to where I want it to get to. But the idea that there would be a moment where I could push through the physical limits of my body with my mind more completely stayed with me. I spoke to a CFS expert in Australia about where I was at with the illness. His response was that he didn't expect to have conversations like this with someone with ME, that I was pretty much on track. That if I was scared the illness was about to condition me more than it should in any way then yes, now really was the right time to push through it. I tried a Pilates class down the road about 4 weeks ago and, rather embarrassingly burst into tears about 5 mins into attempting to move. All sorts of reasons... the memory and very present fear of what the consequences of exercise could mean, how hard it was because of the state my muscles were in. A wonderful instructor (Rob, from San Diego - this corner of the island reminds him of home) was firm: "You're not going to leave this class. You're going to do just 5 of everything. Whatever you do you're going to stick out the whole class...". And so I did. About two weeks ago, I felt like I wanted to dance. Definitely not a new thing... From the early stages of this I've had moments where I'd enthusiastically get ready for the day ahead, bouncing around to the radio, only to be forced to lie down again for a few hours the moment I'd got dressed, like a betrayal. But this time rather than collapsing when I felt shattered, I had a shower and danced. And felt better for it. Something was shifting. I caught myself turning the music up in the car and head banging to Indie Rock from Madrid. There was a time when certain music used to physically hurt. Tuesday was a local holiday and I had my friend David from London staying. We had directions and set off to a little local peak called Mount Galatzo. It was a perfect day, but was made up of about three comedic false starts of gentle walking and we only found the right setting off point once it was too late. There were some funny moments. The stress of the car tyres spinning on a gravel road above a precipice, unable to get traction. I had a blood sugar level crash around 6pm and we ended up being saved by some villagers from Puigpunyent, eating paella around the campfire, exchanging numbers to help them press olive oil in autumn 2017. But throughout all the little challenges, the idea that the illness wasn't going to win or condition me became even more of a mantra. We kept looking at each other and saying...'this is what a normal person would be doing'. The next day I did 7 of everything in Pilates, went to work (where I carried a child!), went to the beach quickly before going out to dinner. Even a few weeks ago only one of those things would have been an achievement. I had Thursday (another local holiday!) to myself. I pottered around the flat not feeling too great. But something about the mountains was calling me back. No one I knew was free but I felt like being up there in all the stillness and green again. I didn’t have a clue what I was doing…I found myself dodging the potholes in the mountain road and asking, expecting to do nothing more than potter about, to be guided somehow. I was soon up past the setting off point, breathing in the peaty-pine air where the grey-green lichens mop off the branches. Then higher, looking down over near-vertical dry stone walls, Palma in the far distance. I knew I was by myself and that it was a bit late in the day to be setting off. I asked a few walkers on the way down and no-one seemed to bat an eyelid about me starting now on my own. And feeling this was ok, even simply enjoying the feeling of moving so much, I kept going. And I certainly didn’t have to do it but the idea of seeing a better view from the top, and I’ll be honest, this cheeky little thought, 'wouldn’t it be totally crazy and freaking amazing if I ended up climbing the whole thing’ kept me going. The climbing became harder and the last remaining walkers on the way down started to trail away. I felt newly oxygenated blood rushing though my cells as if for the first time. Something is so different. It’s OK. It doesn’t hurt any more. My heart pounding. Remembering all those times a one minute run to a train would send me to bed for a week. I can do this now and I will be OK. The last 40 mins or so was the hardest. We're talking about a little peak by the way. It's normally 1hr 30 mins up. But this was the hardest mountain I think I might have ever climbed in my life so far. A 341 day-long mountain to climb. I really wanted to know how it felt to use my body like I used to again. I so desperately wanted that feeling. It almost felt as though there were systems in my body suddenly being revved back to life by my heart and soul. Heart pounding. Knees wobbling. But you’re safe Jess, it's going to be OK. I went along the odd goat track by accident, lost my scarf. I could see the craggy peak now, though it took a bit of working out how to get up it. Many moments of 'What the hell am I doing???!!' I don't even remember what my body was doing, just the physical effort. Arms, legs, arms, legs. Chanting to myself. Throwing off the year that's gone, boulder by boulder. The idea of what that view would look like. My thumping heart and knowing that finally this level of exertion was going to be OK. Or not. But I just had to try. Just had to push through. There was something new and wonderful about the way blood was now surging around my body. For the first time this year, it felt healthy. Eventually after getting a bit lost, I got to the peak with a faded Tibetan flag wrapped around it and a welcoming plaque. I almost stumbled to it….. and crumpled. Tears. It was over. Shaky. Tried to ring someone, Dad, message Jude, anyone, to tell them what I'd just done and by now I was almost shaking too hard to hold my phone. The mist was pouring in, thin wisps of drifting clouds. You'll get the view in a moment I thought, just stay here. No view. Me on a mountain top. Thick grey mist now. Collapsing. It’s over. You did it. You're going to be ok. Wait….the view will clear.
And then I started thinking…hang on a minute. You're on the top of a mountain on a December afternoon. You've got ME. You can’t see anything. My body temperature started dropping. I wolfed down an apple and some almonds. Only... I just got myself up here which probably means I don't have ME any more. Hold on. Wait for the view to clear. The sun was a small round glow behind the cloud to the right, in front of me. And then my eye caught something and it happened. Somehow the sun formed a completely circular, small and perfect rainbow to my left, and bang in the middle of it was the silhouette of the peak with myself sat on it. It was something I felt as much as saw. I crumpled a bit more. It's really over. It's over. I did it. It faded out of view before hovering back again for a few more seconds. It was exquisite. It felt like the thing I'd climbed the mountain for. I waited for the view some more. But I was starting to feel a perfectly sensible, more heightened level of... well it wasn't exactly fear. I knew that this was risky. I'm on a mountain-top on my own and I don’t know if I can make it back down. I thought overdramatically (or not) of all those climbing stories of how people died on the descent. And then my phone died. I think that was the last straw. I could just make out the path in front of me and promised to retrace my steps up exactly, setting off as fast as I could. A little bit further down the mountain the sky cleared. Did I rush down too soon I wondered? And then I stopped. And breathed. And created another moment just then. And I remembered I could just keep doing that again, and again. Intermittently between my mind chattering like crazy. Endorphins and adrenalin in overdrive. Stop. Breathe. I made my way down much more calmly. And it dawned on me that I'd left my ME and CFS at the top of Galatzo. I was lighter. It was gone. Just me and the mountain. My muscles and knees were like jelly they were so de-conditioned but there was this new strength there. Something felt very different. This is what my body used to feel like. I found the scarf tangled up in a thorn bush. Just me and the rocks. Purple-orange late evening light on Mediterranean stone. Lighter green pines on deep curtains of greeny-black velvet. The air sweet and thin. It got easier and easier. Strolling. I could only just see the car in the darkness when I got to it and drove the twisting mountain roads home. And back that night, with someone from home in tow to celebrate, it didn't stop. We went out to dinner, talked till late and I DANCED! As if whatever I did, nothing would break me any more. And I was fine and went swimming in the sea the next day. I would love to tell you that that really was it, that my body responded completely normally, happily ever after but it’s not quite like that. I did pay a price and a bit of a rough week followed. If you have ME perhaps don’t try all of this at home! Just listen to what your body needs to tell you. Following the proper pacing advice is still likely to be the thing that helped me get to the foot of Galatzo in the first place. But overall I’m still stronger, it certainly did me far more good than harm. I can feel it all there just below the surface. This is still a tricky stage of CFS to navigate, but nothing can change the fact; I can climb a mountain! It’s as if I reset myself somehow. I don’t know and can’t completely control when this will be properly over. I’m not obsessed with that now, I’m just enjoying the feeling of my body coming back to me. For good. Sometimes as my mind gets sharper, I feel old worries creeping in through the newly opened cracks. What happens when this contract ends? Is this move to Spain permanent? Then I remember the only security we'll ever have is knowing you can handle whatever life chucks at you. That I could loose all of this newly returned luck and beauty and still be OK. And still be this happy. And this part might be too much for your cheese filter (this story already has a real life, unusually shaped rainbow in it!) but as it’s true, I’ll tell you. A year ago I’d written and performed a song with a gospel feel at a friend’s workshop and got the crowd singing different sections of the chorus. She’d just asked me to record it again, so it was fresh in my mind and kept me going the whole way up. The title? 'I’m Ready for a Miracle'. Someone just asked, what’s next? I answered something along the lines of, ‘More mountains. Enjoying life. Keeping it spacious. Getting fit. Relaxing. I’m not quite sure and the best thing is, it doesn’t matter’. It's funny how differently I look at this picture now. It's the last day I remember without having ME/CFS. But also, as I went back into the sea to catch my final wave and ride it in to an Indian beach, the first moment I noticed something was really wrong. A deep and inexplicable hint of exhaustion I'd never felt before. I didn't know I would wake up the next morning on Jan 1st 2016 to such a different world. It started with a Glandular Fever-like virus that just.....well didn't go away. And morphed (insert your own sound effects here) into what I'm living with now.
I'm finally posting this 10 months on. I never felt the need to 'go public' with it. I certainly don't need or want the attention; I've spent a lifetime finding better ways to do that! But I want to offer the reality of this now. It's definitely helpful for my friends to know. And soon there will be so much else to tell you that I actually think this will save us time....and save me repeating myself again and again. 2016 was probably the second most rubbish winter of my life. Two bereavements, including a long human rights campaign for a murdered family friend. We had a desperate search for Giulio before his unrecognisable body was found dumped by a Cairo roadside. He had been tortured to death for a week. Then Pierre, the larger than life musical mentor I loved who described himself as my 'manager' died of cancer and I was too sick to say goodbye. Then we found out my uncle who gave giant hugs was also terminally ill. I physically struggled to make myself cups of tea, wrapped in a blanket thinking this is what it must be like to feel ~~really~~ old! Mum had serious pneumonia, the car turned to scrap metal... But as far as the illness goes, there's been so much richness in all of this too. A richness I can't always separate from the worst bits. It's such a cliche, but when it comes to having ME and what I've learned through it, I honestly don't know if I would change very much at all. More of that later. ME stands for Myalgic Encephalomyelitis , a complex, chronic neurological condition that impacts multiple systems of the body. What's hit me the hardest - and this seems very common - is a great deal of brain inflammation and something called Post Exertional Malaise. There is so much research still to be done, but much hints towards the idea that with ME, the mitochondria in your cells stop producing energy in a normal way. That great feeling when you go on a walk and feel your body almost kinetically generating its own juice becomes a thing of the past - as if your body is a petrol-less car that's already spent too long travelling at 70 with no gas left. Chronic Fatigue Syndrome is now the preferred term in the medical world as it encompasses so many other aspects of the illness, from your immune system going to pot to the neurological and psychological implications. ME/CFS may be one of the most psycho-pathologised conditions in recent human history - it's very much a physical disease just as much as any other. When it's at its worst CFS strips you of everything you've ever used to identify yourself with - your ability to act on passions, your work, human contact, socialising, being remotely physical let alone dance classes. It's you. With you. Feeling like utter shit. Working out if you can face moving from your sofa back to your bed again, or even lift your head off the pillow. For an ever expanding, indefinite period of time. It took me away from so much of my art. There was a moment I remember fairly early on, just when I thought I could catch up on my recording again, that felt as if a giant hand from a B movie was throwing me back on my bed....my home studio just a metre away. And so far away. In hindsight the inner (melodramatic but real) 'NO!!!' of despair I think I said out loud also hints that deep down I knew how real the rupture was going to be. I had this sneaky hope that there would be a time when I would be convalescing from all this when all I would do is be quietly creative, record and paint pictures... But that time hasn't hit just yet (it's coming). The biggest challenge for so many of these months has been losing my ability to sing - to the point that certain sounds still no longer come out of my mouth. After 20 years of almost always having a concert in the calendar. The worst patch was probably the 2 months I kept trying. My natural response to being housebound would be to "oh well, I'll just write a novel then".... Except for what this illness does to your brain. How can I describe it? It's like needing to run when you're being sat on by a bear. It's having a mind that behaves how a toddler might on Twitter (it took me so long to realise this part). With an epic hangover. All raw and soft and human and weak. But wired. With mega-flu. That was the greatest lesson - the only thing I could 'use' this time for was putting all of my being into being. And getting better. And bit by bit you accept things that little bit more. Being chronically ill feels like a slow, seeping, messy trudge for much of the time. Just to complicate things you might even look fine. And be able to act as if you're perfectly well every now and then... In fact it often feels far less natural to act as lousy as you feel. And it fluctuates - last weekend I finally went out with old friends, a couple of days ago the kindest flatmate in the world had to drive me every few yards between the doctors, the pharmacy and the dry cleaner's. And definitely no going out. I feel sad that so much of what I am committed to and the friendships I was building in London have just slipped....and drifted... But there will be time. My family, my siblings, my friends have been my cocoon and my bolt hole. Life carries on. There were many moments where I came up for air. I managed to go back to teaching for a while, I had some song ideas, made some puppets, woke up to May morning in a narrow boat. I did get my voice in enough shape to sing Nick Cave with my cousin at at his dad and my uncle's funeral in Northumberland before driving down to Glastonbury for our gig the next day. I even got to hang out on a very special recording project with the Faithless and 1 Giant Leap crew and a Hothouse Flower, some of the most astounding and loveliest musicians I've ever come across on a Greek island. I was in a bit of a mess trying to understand what was happening to me, but it was worth all of it. The truth is you come up for air a few times every day. Until you're just living with it. And it being ok. Finally being diagnosed in August was the first turning point - the only thing that really mattered about the name for me was that it was on a doorway out. I finally knew what I was dealing with, and that for this to work I'd have to tackle it from every angle. There are two jigsaw puzzles to CFS. The first part is medical. I'm well on the way there now. And there's so much online - you can google and find out that your condition only has a 10-30% recovery rate and can have symptoms that are far worse than HIV (all of which is true). Or you can focus on a whole world of support and understanding (I recommend Toby Morrison and The Optimum Health Clinic for their pragmatism). In September this weird, anxious, locked, feeling of loss, which could easily be mistaken for depression but probably wasn't, slipped away. I think I had been grieving the life I knew as much as anything. A while ago I started to describe myself as 'recovering from...' , which is very different from attempting to act as if this isn't there. By October, I had struck gold with the right advice and found the professional help that has started to make all the difference. I'm hoping to stay a few months ahead of the NHS, my first specialist referral still isn't until 29th November. I have no idea how far there is to go but it feels as if this is the home stretch. I've put my sights on January for fully dancing, singing, swimming, walks, tube journeys, social events and normally functioning Jessness - but I have to be ok with it being April 2017, or 2018. I might be monitoring my activity for some time. There are a lot of unknowns but it has all become so much more liveable with. And there has never been a doubt in my mind that I will recover 100% from this. The next part of the jigsaw puzzle will take longer - but it's essential if I'm going to get over this for good. There is a consistent pattern of givers, helpers, high achievers, and the creatively driven having a predisposition to ME/CFS. I may be some or all of those things, but people who know me also know that I've been meditating since I was 21, lived more healthily than many and loved (or at least needed) a finely tuned sense of balance. At some point in about 2001 was advised never to have coffee again after a Barcelona espresso left me partying for about 3 days (and I didn't - though I tested an Americano in 2013, just to make sure). I needed my friend Roger to remind me the other day, "Jess, when I think of you I think of someone healthy, someone with loads of energy, someone sparky ". I may have CFS but it doesn't have me - I want you to know am still very much that person. Despite all of that, I have a funny theory about CFS. Something far more unconscious. It's about the beliefs you have encoded in your cells. It's as if you've been living your life to an equation that doesn't quite add up. And you do the very best you can with it all. You play full out with everything you've been given. It's no one's fault. Perhaps you even do more than your best. Until it stops adding up any more and the engine has no choice but to stop. I'm still decoding that part. Maybe we all have an equation of some kind to live out. The likelihood is you will never fully master it, never get it right. And that's probably the whole point. I've become much better at doing things badly and failing. It's a game you win in the most infinitesimal increments. I've had to re-learn (and will keep re-learning) that your value as a human has far less to do with the things you create or 'do'. Nothing is as important to me now as who I'm being in any given moment. Probably that and the depth and quality of my relationships and how good you can get any human interaction to feel. Or even simply, how does it feel? A couple of weeks ago I was playing fantasy jobs, things that kept coming in that I clearly wasn't well enough to apply for. It wasn't until the evening that I joked about a teaching post in Mallorca working three hours from home in the afternoons that came with a flat, a landscaped garden not far from the sea and a car....and ideally for someone with a background in music and art. More importantly I just knew this was a student I was meant to teach. That was a 'can't leave the house day'. I applied anyway, was open about my condition, got my doctor's support and landed the job! I start on Monday. My family turned up at my flat on Sunday with boxes and plastic sacks and have 'moved me' out! I'm now saying goodbye to London after 7 years, feeling fortunate, jumbled, still balancing it all (just) but far more like myself - moving countries with CFS. And except for the hours I'm teaching will probably have to do it all pretty clumsily. And that's ok. If you haven't heard from me or seen me out and about for a while do say hi. I miss you. This is why. Xx |
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April 2020
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