I’m in my beach hut-tree house while the tropical rain thunders down all around me. My last day in this corner of paradise. Wanted to get out to a 'motu' (one of the even tinier islands inside the lagoon) today but that was impossible with the high winds and rain.
It’s been a great day though. A few metres from my tiny wooden balcony covered in palm leaves is the most incredible coral I have ever snorkelled in. A more usual version of me would jump in the sea every morning without even thinking about it. I have to be a bit more cautious. And it's OK. This current version of me can get strangely wobbly and quite often the room (or beach) can spin after the sea or a shower. I'm working on managing it - it went away in New Zealand and came back a couple of weeks ago. Something to do with my lymphatic and nervous system, perplexing symptoms that are just a part of life with CFS.
But if I pace it right I am having long snorkelling sessions, floating in the water while fish of the most extraordinary shapes and colours are busy doing their thing. Large bright purple starfish, angel fish all bright yellow, blacks and white. Tiny black and white striped fish crisscrossing into a shoal of the most exquisite cobalt blue. When I swim out far enough I can see a giant clam, about the size of a small child. A velvet burgundy brown with iridescent tiny turquoise and green circles all over its inner surface, glimmering like sequins. Less beautiful perhaps are the large black slug-like sea cucumbers that on our beach occupy just about every square foot of the sand below the crystal water. They serve an important function though. When you look more carefully you can see their suction pads; as natures' vacuum cleaners they help to clean out the sea water.
The most usual way to see the lagoon is though a tour or water taxi. I signed up for one run by a local called Andrew. In wasn’t able to do as much walking as the other travellers so we spent more time on the boat chatting. When he heard I was here for 2 weeks and without even knowing I was trying to find ways to get out to the lagoon as often and as affordably as possible, he invited me on another tour for nothing! I helped him with lunch in return; star fruit, watermelon, barbecued tuna, bananas and bread plant with a papaya curry salad. We ate on one of the motus while the island ants (they don't bite) and hermit crabs crawled and scuttled around our feet.
From Andrew's boat I swam with the Great Travellys and a Napoleon fish, all more than half my size, the latter an extraordinary version of the kind of exotic fish you might find in the fish tank of a Chinese restaurant. Snorkelling in deeper water feels a bit like flying it is so crystal clear below me.
I'm very pleased not to have come across a stone fish. They disguise themselves as rocks just under the sand and when trodden on emit a venom and swelling so painful that people usually beg for their legs to be cut off. And it can take weeks to recover. I'm wearing reef shoes all the time to avoid stepping on anything sharp, squidgy or venomous.
The Great Travelleys I jumped in for a swim and snorkel with.
I've got a bit stronger this past week through resting, even though it’s been a shame to miss out on swimming and beach time as much as I’d like to. I rented Joey and Odette’s car for very little and have loved the mobility. I’ve been driving around the island (exactly that - the main road takes you around the island in about 45 mins at a max speed of abrout 50K an hour), listening to the joyous thing that is island radio.
Yesterday I was doing a smallish grocery shop for Aitutaki in Rarotonga's only main supermarket and my body did that old cutting out thing again. ‘Cutting out’ is the right way of putting it - it feels as if something in you really has been cut. As if you've accidently passed through a kind of invisible wall. You can almost smell burning. And the puppeteer has let go of all the strings. Suddenly walking a step further becomes a real struggle. I thought I was taking it very steady all morning so there were no warning signs this time. A total surprise.
And Petra, a German friend I've met here gave me some wonderful advice tonight. I was telling her about what had happened today on her deck (in the photo above), giant palms creaking and swaying in the wind above us, the waves breaking on the reef below. "When it happens again, how about welcoming it in like an old friend?"
I still - still, after all this time - do the opposite of that. To me, the cutting out, the shut down is still the sign that something is really wrong in my body. Sometimes I do gently feel my way through it. Carry on a little. Coax my body gently on. Most of the time though it means Game Over. I’m the one who has miscalculated. And I now have to navigate my way, with it somehow, back home or to somewhere where I can lie down.
I thought this was over. I thought this part was done. I thought this lesson had been learned. I thought I was capable of getting my way through a small baskets’ worth of supermarket shopping.
You must be bored of this by now. I certainly am.
I am learning - still - that recovery is waves of crashing and building up strength again. I feel responsible for these crashes because I know they can be exacerbated by the travelling, I also hear again and again that they are an inevitable part of CFS. My hope is that over time the crashes become less severe, less frequent and hopefully take less time to recover from. I had forgotten what I learned in Anahata in New Zealand about accepting things the way they are, just as they are. Right now.
So I’m going to try it. “Hello old friend. You’ve come back! So good to see you. Did you have something you still want to tell me...?”.
The fishing club lunch stop while I was on the bike.
I'm taking a bit of time to adapt to the tropics. On the first day here, I think the most dangerous set of words I’m learning (in hindsight) I can ever say to myself: "I'm doing really well...perhaps I can start to get fit now?"
And... I don't know what I was really thinking. Except that I can't have been feeling too bad physically because it didn’t even cross my mind to think of a different way of travelling such a short distance to the beach (about 2K). This doesn’t feel like the moment to become a first time scooter user (accidents are infamous here).
I jumped on a rusty bike and got peddling towards Muri beach. I’ve missed cycling so much. But this is in the tropical heat. It took me a little bit too long to notice that the heat has been zapping all the energy I’ve got. And it's not enough that I did it one day. I cycled two days in a row. By the second day, still peddling a relatively short distance, my body started telling me I had pushed it way, way too far. I had to leave my bike parked by the museum. I rested on the beach (in a hammock with a coconut - none of this story is that tragic!!). I caught a taxi home and explained what had happened to the bike. Odette headed back to rescue it later.
I've managed to exercise my way into that cut out, "broken" feeling (calling it tiredness or exhaustion doesn't really do the feeling of CFS justice). What I didn’t really notice was quite how much all the travelling to get here was such a push. I notice a little too late that perhaps I’ve been slightly running on adrenaline since the day I left the Anahata mountain top in New Zealand.
Something can’t quite click in Rarotonga. I’m finding the place quite hard work... and I feel as if I shouldn’t be feeling this way given that it’s exactly the sort of tropical island paradise I have always dreamed of. But this is just another reminder of the impact our internal state can have on us compared to where we physically are. I know I am in a wonderful place. And today it is really, really hard.
I’m staying on the farm now, resting. Recovering. It is a crash - I now have a little bungalow on the farm to myself and I do manage to stand up and cook something to eat, but it’s a struggle. I was doing so well. I don’t expect this crash to take the 2-3 months the last one took to recover from. But today I suddenly feel very, very far from home and wonder what I’m really doing here.
I get in the car in the Rarotonga airport carpark next to Joe/Joey. He was the right Joey. I'm just about to put my seatbelt on and Joey quickly stops me (he says everything quickly) “We never wear seat belts here”. "I'm sure Joey. I'll just need a bit of time to get used to that" I reply, clicking myself in. To prove his point the belt leaves a diagonal line of dust along my top. He drives me the 20 mins or so to their smallholding off the Matavera back road at the foot of the deep-green covered volcanic peaks that form the centre of the island. Hens and roosters are everywhere. Plus a couple of goats, some cats and a pig.
Joey’s German wife, Odette is a generous powerhouse of a woman who manages to keep up her job in an insurance company while looking after up to 7 Airbnb travellers at a time. I very nearly step on a baby chick running around the deck that was separated from its family and now thinks Odette is its mother. It goes everywhere with her, running around her desk at the insurance company and along the kitchen counter while she’s cooking.
Nights are noisy. Crickets, dogs in the distance, the odd fly or mosquito close by.. It reaches a crescendo in the early hours of the morning when life screams itself into existence. And even all of those sounds are drowned out by a sonic Mexican wave of what sounds as if every rooster on the island (quite possibly more roosters than people) is in some kind of a competition to see who can ‘rooster’ the loudest. I start to identify different individuals on the farm, one rooster who has a hilariously unselfconscious pathetic little croak. The first Rooster-Off begins about 2am, then returns at 4am, 5am.. by 6am the day is pretty much up and running and the sounds of the other island birds can be heard again.
We have long extended breakfasts all together on the deck, talking about island life and travellers tales. Joey finds me fresh coconuts. The heat swells. It rains on and off.
I'm still enjoying the fact that I left Auckland early this morning on a Monday, and here I am a few hours later in the middle of the Sunday afternoon of the previous day. A whole extra 22 hrs of life. Only I don't think you'd be able to keep repeating this without losing a day on the way back.
I realise almost every flight on this trip has turned into an indicator of where my mobility is at. And today the signs are pretty good. I still needed the chair for Auckland airport, it's still a lot of walking and I'm not taking any chances. But a lot of my current discomfort is just normal stuff that happens when you travel... I only got 3 hrs sleep last night (excitement combined with the last night with my sister) and I have a bit of a dodgy tum (too much Fix and Fog chilli and Manuka smoke peanut butter?!). Even though I am tired, this is a thousand miles away from crying with exhaustion. So different to even the Sydney - Auckland flight of 2 months ago. I am SO HAPPY I am well enough to do this. So tentatively relieved that I am going back in the direction of home stronger and physically capable of enjoying myself.
I'm in a full blown tropical island paradise. A small circle of green, fringed by a reef, exploding with palm trees and a set of precipitous volcanic peaks from the air. I walked down the steps of the plane into the wobbling heat. I have that feeling of landing in a completely new country and culture that I haven't felt for years. I can smell frangipanis. Everyone, minus the very occasional tourist, seems notably happy. The airport is smaller than many bus stations but I'm still grateful my special assistance status means a woman in a large green dress and garlands of Polynesian flowers on her head took me to the front of the queue. A little bit of me is wondering how much of this is just a pastiche of paradise while someone plays steel guitar over a drum machine. I hand over my customs declaration (my suitcase is stuffed with groceries for the second island, Aitutaki) and... no, my food stash is indeed fine. The lone official says, "Ah, I'm Joe, you're staying with me.... Wait over there, I'll just be 4 or 5 minutes and I'll be with you". Or in hindsight was it 45 mins? He does indeed have a badge saying Joe and I am staying with Joe and Odette on their farm. So here I am still waiting. About to head back and check this is a different Joe who spins the same line to any solo women travellers who hand him a landing card and take his fancy. But I think this is my Joe....
Group photo thanks to Anahata Yoga Retreat, Golden Bay, New Zealand.
I more than found what I was looking for at Anahata. It was worth any unraveling that happened in my recovery to get here. It's hard to describe in words but it feels as if something deep inside me has clunked quietly into place. Something that I knew could only happen with a lot of stillness and a lot of nature. Perhaps that was connected to my desire to climb mountains. I still have that yearning to hike, to move faster, to get out of breath, the clarity that comes with physical exertion - but I found far more than that anyway. I found a kind of peace, a mental freedom, a sense of vastness. A vastness that is only matched by how rooted in the ground I feel.
My body may not do exactly what I wish it to, but my mind...can do anything.
I'm sure I could have found that stillness closer to home. But New Zealand is different. It is incredibly special. Here is a quality here, a brightness, a lightness, a freshness, a sense of space. It is one of the most healing countries I have ever been to.
I was surrounded by community at Anahata and over the course of six weeks the residents there became my family. And steadily my mobility improved. Until I was walking around without having to think about it too much. Until I was almost able to stop the constant measuring of activity that happens with CFS nearly completely. It was slow, it was steady and I became the healthiest I think I have ever been, in body and mind so far.
It happened gradually, but I kept finding myself doing more. I realised I was playing frisbee when a small group of us went on on a day out by the sea, feeling fine and able to do the short walk to get to the beach and back. I started being able to use my voice more and more regularly - to actually start singing again. I started being able to get up and dance for a song or two. A small group of us went out for the day on my birthday and I climbed the steep track through the trees from the beach and then went out to a spa and out to dinner. I lasted all day - I had all the energy I needed to enjoy every moment of it.
And I will take all of what I have experienced and learned here with me. Wherever I go. It was a myriad of practices that got me here, the community, the support from the people who became a family of friends, the luxury of not having to care for yourself in terms of food - and that food coming straight from the garden and local producers (including the pears we scrumped from the bottom of the hill). I did tiny bits of yoga that I built up, made an effort to join in the daily chanting (I know this helped to retrieve my voice). Most helpful of all was sticking to a deep sleep meditation called Yoga Nidra that happened at mid-day, 6 days a week. A 30 min Yoga Nidra is said to be the equivalent of around 2 hours’ sleep. I will now always attempt this form of deep rest during the middle of my average day.
Some of my favourite moments were walking through the forest at dawn, the light just a tiny glimmer in the sky, to find everyone preparing for a Havan, an ancient healing fire ceremony that felt remarkably powerful. And there was always work to do... I actually managed to get a bit stressed out about finishing all the sewing jobs I was given and we all helped with cleaning, looking after retreat guests and whatever else needed doing. Most residents at Anahata work incredibly hard. I was able to do what I was able to do and rest when I really needed to.
But perhaps the key thing is that I wasn’t only laser-focused on getting better while doing everything my body and mind needed to heal again - I realised I had no choice but to work on accepting things as they really were... now. Not waiting or putting myself on hold until I was able to walk and function normally again. Learning not to make a moment of this experience ‘wrong’. I think there was a little key to recovery in that realisation.
There were lots of tough moments. Times when I wrestled with how things were. I'll never forget walking around the garden feeling like an ancient old woman, determined to pick some flowers for Surya, the main building... Going so slowly.
As if I am walking through a painful layer of treacle.
All I wanted to do was pick some bloody sunflowers on a beautiful sunny day, to do something that makes me happy. And I'm doing my strange slow walk, strategically placing vases and picked flowers at points in the garden to minimise the need to walk any further than is really necessary (with any luck I will be a master of the laws of time and motion after all this). It is one of those bright, brilliant, crisp warm New Zealand autumn mornings. And I am, again, trying not to cry. I have been here more times before than I can count and I am so tired of it.
Atma Vidya a wise, sparkly Sannyasa in her early seventies who is running a chanting retreat walks by and asks how I am doing. We have chat... "Remember Jess, if it's happening, it is meant to be happening". This is slightly different from the somewhat infuriating 'everything happens for a reason' trope that could be true but I don't find terribly helpful (that's a polite way of saying it makes me want to punch someone). I still struggle with it. We talk about the nature of the mind. I talk about the struggle to accept that this could in any way be 'meant' to be happening. That every time I celebrate the use of my body coming back to me it seems to get snatched away again.
Then in the middle of our talk, I'm half crouching as I can't stand and probably not sitting to avoid a wet bottom from the grass.... the neighbours cat decides to jump on my back and sit there. And well, it feels a bit bizarre, but we keep our conversation going, Bhakti the cat getting comfortable. I'm half laughing half crying at this stage.
Later on, after time for it to sink in, after her words pass through a few layers of annoyance and perplexity, I find what Atma Vidya says incredibly helpful.
If it is happening, then it is meant to be happening. Or even, if it is happening then it is.... happening. It simply... is. And to rail against what is is one sure path to madness.
I cannot make a moment, a single moment of this life I am given, 'wrong'. Painful, frustrating, sad: maybe. But never wrong.
It's wonderful knowing I can really stop here. I'm able to move around more, though by the time the sun starts setting I'm never able to walk out far enough to see it behind the trees. Someone kindly walks up and takes a photo for me (a trick I'm now using quite a bit with all sorts of things I'd love to see but can't). I've had weeks of imagining the sunset now and it has turned into a bit of an ache. Then today Steph showed me a secret gap in the fence not far out of the main gate. And suddenly I'm here..... This view has been here, this close all along! This is me and my first Anahata sunset. I don't get to climb mountains but for now I get to live on one instead.
On the third week I embarked on a silent retreat. I messaged everyone goodbye as if I was setting sail on a long sea crossing (in a way I was). I handed Steph, my room mate my phone and asked her to hide it. And we began. On the second day I was hit down with nasty flu....on top of CFS. I found Atma Mandir, our Swami and quietly told him "I have the flu". He just looked at me quizzically, cocked an eyebrow and said, "...And?" Not unkindly. I stopped. "I'll just have to work through it..". I walked away chuckling to myself. Realising I had broken Mouna, my silence (which is allowed for something truly important) to say the equivalent of, "It's cloudy". And I did meditate through it. I sat there meditating through the banging headaches and flu along with CFS for a few hours a day. It was bloody hard! On reflection feeling that ill would be a decent enough excuse to skip meditation on any day. If I can have insights and experiences that profound, feeling like that, then it shows that we can meditate through most states.
I’ve never been that bothered by the desire to find inner peace or the other reasons someone might normally go into retreat for. I went to get to know my mind a bit better, to stop as deeply as I could stop. What happened on retreat is between myself and the mountain top. But let's just say (and this part really amuses me) ...all those so called cliches revealed themselves to became true. I now understand why people talk about 'finding yourself', about being ‘at one with all that is’. I met a part of myself that is far deeper than whatever my mind and physical body is going through right now. It isn’t going too far to say I had an actual conversation with my soul. I’ll share just one part of it... I asked, towards the end of a deep meditation session..”and the ME...?”
“I had to get you closer to me somehow,” came the reply.
The answer was light, casual and matter of fact.
What we really learned was a little bit more about the nature of the human mind. To be aware - as aware as we can be in any given moment. That's really all that meditation is. And then to never try to control, suppress or judge the mind. That can be a harder part. Don't interfere with it, just keep shifting your focus back to the breath.
When we still the thinking mind, whatever has been floating below the level of consciousness - samskaras (as they are called in Sanskrit), or imprints (you could say that everything you experience or ever think could be described as an imprint) are able to rise to the surface. It can be everything from something mildly annoying to hugely challenging emotions and memories. I had a huge amount of music that hadn’t swum through me for a while since I stopped working as a musician cascading through me. Everything from songs I used to listen to in my teens to new orchestra parts. The more time I spend with my mind, the more I wonder if it should really be a silent retreat at all.
Finally we came out of our silence - even those not in the retreat sessions with the Swami who kept the centre running had been living in silence for the week. Words came bubbling out of me like a river again, but the funny thing was, my usual need to speak and communicate had dissipated. And it felt both profoundly still and fizzingly alive.
And what I will keep with me is the knowledge that whatever happens, there is a part of me that is stronger and more infinite than anything this lifetime will ever throw at me.
I arrived at Anahata only just about able to walk between the buildings. If I was standing up and having a conversation with someone I would have to sit down after less than a minute...wherever I was. I rolled around on the floor quite a bit, pretending I was just...well, really relaxed.
I'm in a yoga retreat with a wide deck, perched high on a mountaintop pile of granite and quartz, surrounded by forests, sheep and the sea far below on three sides. I'm half an hour's drive up a steep gravel track, not too far from a town in Golden Bay called Takaka. The weather is September-like. Bright, sunny days with nights that need hot fires and hot water bottles. Sometimes everything is lost in cool mountain mist or drizzle. Whatever the weather, it often passes.
This place spoke to me the moment I found it online many months ago. It's off grid, very poor mobile connectivity (the site is deliberately device free), the food is delicious and mostly comes fresh out of the garden. There is a fairly relaxed ashram environment. Everyone else wakes up for yoga at 5.30am. I tried. Even lying in the class imagining doing it all uses up too much juice too soon in the day for now. I lie in bed instead and watch the sunrise. There's silence from 8.30pm until 8.30am. I love that, on a practical level it simply allows you to get a bit of inner space while someone hands you a bowl of breakfast. People are fun and caring here, it certainly my isn't too earnest - but there is a dedication to rest, meditation and making the place work as a community.
I'm doing the things that helped stick me back together last time - the physio advice to cut back on activity to a minimum (for now), more steady rest and a Chinese mushroom I spent a few months researching called Cordyceps. I am heading in the direction of getting better again. I don't know if it's the air, the amazing water from deep out of the rock, the gentle daily discipline, the tiny bits of restorative yoga and meditation. The day here is centred around calming down the body's sympathetic nervous system, not least a deep relaxation of the conscious mind called Yoga Nidra. (Yup, I found a place where they meditate lying down at 12pm everyday). It's probably a combination of all of those things.
Something is shifting.
Early days but moving around has absolutely become less of an issue the last two weeks. I found myself chasing a ditsy sheep back to the right side of a fence and was fine. I popped into town for the day and drove someone's 4x4 back up the vertiginous track. Completely fine. I don't know what my limits are exactly, but the whole point is to not push far enough to find out. I've been monitoring my steps and all I know for sure is that I can do a lot more without getting that horrible feeling of burning up.
It's wonderful here but I'm not suggesting it has been easy. Even if I did have all my mobility there's nothing like being somewhere close to paradise to realise that happiness is rarely a complete given to the human mind. And also, while I was dreaming of getting offline, I've found out I really want to connect with the world and talk to people I love after about a week. I jumped in the camper van of a friendly German called Jurgen this morning, totally ready for a brief change of scene and some WhatsApp calls in town.
There have been a few shifts in the way I see things. I started out with an inner target; to be able to somehow slowly walk a 30 min trek to a waterfall and back before I leave in a month. I've started to understand that being such an optimist all the time can mean I'm setting myself up for disappointment. I don't think I need any help with drive or motivation. My work here is going to be more about acceptance... never giving up can chug away in the background while I get back to accepting life as it is now.
There are 'Karma yogi's' who work a bit like WOOFers doing anything from cooking to gardening to helping in the office. I'll be doing more hours over time. Last Monday as all the mindfulness-in-action-jobs were being read out I didn't hear one job that I felt physically able to do. And I wondered what my place here was going to be...and it hurt to think of all the things I'd like to do. I'm not an amazing sewer but I'm now mending and altering anything anyone gives me. I've turned it into an art project - the hole in someone's trousers tells me what it wants to become; a sunflower, some colourful cross stitching. I'll be helping with a digital archive of meditation CDs next week.
I'm mostly learning how to be a witness to my own mind. To become more familiar with the well worn tracks of despair it can so easy slip down when CFS (or life in general) gets to me. As it can get to all of us. I've always known this but here I'm more conscious of the myriad of responses available to us in any given situation. That we can machete fresh paths of thought out of the jungle once we start to recognise the patterns.
I have met some extraordinary people who have survived so much - someone with a brain injury, someone else who lost an eye and a good chunk of his head because an admin mistake meant he didn't have a tumour removed in time. I know that there is so much I can do, but even then what I can and can't do probably shouldn't even matter quite so much. And it's ok when it hurts. That I am in most senses of the word, totally healthy now. That there will be all kinds of possibilities open to me however I am when I get home. I also like that I hardly mention CFS to anyone now. Only when it's unavoidable. It's simply something I have to work with and nevigate my life around.
I go into total silence for a week tomorrow. Let's see how that goes. My brain likes to chew over the rest of the trip and whether I'll be carrying on or heading home sooner. But that can all wait for another month.
Most of all I'm remembering to be kind. That self-compassion and acceptance weave around each other and whisper, "It's OK to feel like this. Take all the rest you need. You can stop now".
You can find out more about Anahata here.
An ME/CFS Thriver