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