This view of was taken a few seconds before a kind Australian dad called John offered to push my wheelchair for me. I imagine it's something people are a bit shy about asking when they see someone pushing a chair by themselves. I wanted to see The Gardens by the Bay, jet lag and night flights were affecting my walking distance and a wheelchair was the only way to go. I just had to get over the potential comedy (and a twinge of social discomfort) of walking with a wheelchair for a tiny bit before sitting in it and pushing myself along. This is what occasional wheelchair users have to do, there are millions of us and it makes life possible. My arms were feeling too knackered (the wheels weren't exactly spinny) and I was super grateful to be wheeled me up to the viewing platform and in and out of lifts. And it turned around how I was feeling about these beautiful gardens. At the top I let the wheels spin and felt the warm wind and water spray as I whizzed down hill along the suspended walkway, twisting around the corners, through the orchids and cloud forest. Now I get why the wheels weren't spinny - you could pick up quite a speed going downhill. I loved Singapore and the two days and one full night I spent there. The airport is designed to take you no more than 15 mins to walk out of from leaving your plane, the luggage carrousel moved elegantly under a row of green palm trees. After Dubai I drank in how verdant and tropical everything was. I was shattered and did as little and as much exploring as I could at the same time. Often flat out by the pool, too tired to even get in it.
I met up with the best friend of a best friend, Carrie, for cocktails on the roof and a meal in the Arabic quarter. She's lived in Sing for 10 years and I got a real feel for what the place is like. It is super clean and very safe. Most people speak English - from a typically dodgy colonial history. I spotted people taking pride in things, cleaning the sinks in public toilets, customers better arranging the items on a supermarket shelf. Some people suggest the government here is oppressively authoritarian - from Carrie's point of view, locals are more interested in the fact that the place 'works'. And it definitely feels that way. Sometimes life with ME can feel a bit like wearing an electronic tag. And now it seems I'm travelling with it still on. On my last evening I was well over the amount of walking I should have done but needed food. If it hadn't been for the invisible limits that I (temporarily, I hope) now live with, I probably would have missed the bustling Chinese food hall hidden right by our hotel. I found the tastiest fresh coconut and a sweet couple who made me some fried fish with a hiccup inducing hot ginger stock. Then it was into a taxi around 8pm and off to my flight to Melbourne. Yup, mobility assistance all the way. When I agreed to book it all as back up I had no idea they would turn out save the day.
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First stop.... 5 nights in Dubai with two friends, Chloe and Rui who I once spent 3 years working with when we were teaching in a bunker-like staff room in South London. They're with me in the photo above with Cath (with the dark hair), who was at the same school with us and has also escaped to the Dubai sunshine.
Perhaps the fact that Dubai is the ultimate car culture was on my side? People don't seem to do a huge amount of walking anyway. I managed to get much further one day and generally got a lot stronger as I rested up from the crash. ME/CFS wasn't really much of a thing while I was here. I was brilliantly looked after. There isn't a huge amount else to report... I mostly rested on the roof with Chloe, talking about teaching, life, love, everything. I soaked up the brightness of the sky and the sun on my skin in the 23 degree winter heat. We ate really well. But here are some snapshots and brief impressions. The creamy pink glow that marks the beginning and end of each day, the screech of car tyres in the sand, a call to prayer.. I get the impression from most people I talk to that Dubai is seen as a bit of a pit stop. A place that you inhabit to make money before getting the hell out. I have some interesting chats with taxi drivers, a Filipino nanny and go to a choir rehearsal with a few ex-pat wives (and my voice is doing pretty well). Dubai is place full of superlatives and contradictions. It's world-beatingly ostentatious while the post office runs out of stamps. The city can claim the world's tallest building, a ski slope with snowy toboggan runs in a shopping mall in the desert that keeps penguins. It's glitzy, dusty and permanently in construction. I arrived just as the government is introducing VAT. Will be interesting to see if this changes anything. 90% of the population are international and while the airport claims the world's fastest wifi, no one it seems, is able to Skype or WhatsApp (or use any other facility) to call home. While I'm there Chloe and Rui find out that Zoom, the conference calling app they've been staying one step ahead of the authorities with to talk to their families, has been blocked. One local alternative is available, only it barely works and costs a few limbs. After the scare at Heathrow it's wheelchairs all the way for my flight out. As I'm wheeled along I start to accept that there is no way I would be able to walk this distance. Not right now. But I leave feeling good; recharged and optimistic. And in strangely familiar territory. I don't know why, though I've passed through this airport without leaving it so many times. The kind man pushing my wheels is from Kerala. Maybe I think I'm on my way back to India or something?
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 activities 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, occasionally). 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 countries 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 existence as much as anyone else does. '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. Collateral damage. 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? Twenty? 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, impossibly, free. 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. Most of us juggle teaching and live 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) I 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 I 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 endlessly fighting, endlessly fixing, endlessly 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 unconscious. 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. And again. |
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April 2020
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