This has been the boldest and most beautiful 5 months of my life.
I also seem to have forgotten surprisingly quickly how incredibly hard parts of this round the world trip were. Just to recap, when I finally booked all my flights I had been discharged from my physio and was walking proper distances again. And then, as I started to dip shortly before I left the country, I collapsed into another wheelchair just before my first flight left Heathrow. I had no idea then that I was sinking into a physical crash that would take me nearly three months and a few more wheelchairs to recover from. I didn’t know at the time that this is exactly how this illness works - it is that cruel, that hard and I was one of the few lucky people to have managed to escape even that far.
The first half of this journey was this strange mixture of loving the adventure and being wherever I was all thrown together with deep disappointment, fear, sadness and so much uncertainty as to my physical state. No rational person wouldn’t have questioned the sanity of what I was up to. Travelling, even when it was sometimes such an effort to leave my bed - wherever that bed was. Travelling when in certain moments I wasn’t sure I could make the stairs. And for quite a bit of that time I was travelling alone.
I clearly wasn’t totally off my rocker though because here I am now.
I had a calling.
The wild called me.
That’s all I can say. I knew that nature could heal. I knew that these were places I needed to get myself to. I knew that this trip was my way of taking back a divine paper and pen and saying, “No. the story doesn’t go like that. It goes like this”.
My flight from Boston to Heathrow is about to land soon. The pilot just announced that we are over Wales and I almost felt my eyes water. Home. I’ve done it. This journey - this part of the journey - is over.
No one knows if ME/CFS is ‘over’ for me now. It’s a question I have learned to let go of. I don’t know. But this morning I am coming back physically strong. I am well. And peaceful.
And the unseen: there have been deeper changes.
I won’t put into words what I was looking for. I’ll take a guess that like all the best things it has to go beyond words. But I can tell you that I found it. I found it in the skies, the seas, rivers and lakes, the forests, the rocks, the shells, the plants, the mountain ranges, the strange bugs and above all, the silence. I found it in connecting with long lost and scattered friends, new friends and endless interactions with strangers. I found it in a huge amount of kindness. I found it in not knowing what the hell I was doing while in a deeper, though less conscious part of myself I probably knew exactly what I was doing. I found it in the adventure.
A pivotal moment of the turn-around happened in a silent retreat and six weeks I spent living on a New Zealand mountain top, learning a way of living that it's likely I will carry with me. And after a small but very disconcerting set back in The Cook Islands, I found all I needed for a second turn around in the limitless skies and crystal seas of a South Pacific atoll.
Like so many true travellers tales, what I was seeking was waiting quietly inside of me all along. Only it seems I had to go a very long way into the unknown to find it.
Pleasant Lake, Elkins Beach, Wilmot NH
On my first day Jesse met us after work and we went for a swim on Pleasant beach without thinking too much of it. Except they could both see how much I loved the water. I explained that I would swim in just about every lake in New Hampshire if I could. Except that I would need a while - there are 944 of them, and quite a few of those are private. We simply decided to get into as much water as logistics and my body would allow us to for my last week of the trip. We called it The Lakes Project.
That night I suddenly realised what this meant. The darkest, lowest point of the trip had been in late February. The days when I was travelling with my family and staying near Lake Taupo in the middle of North Island in New Zealand (though I was still on holiday - nothing of this story is ever that bad). There were a couple of days when I so wanted to swim with everyone but didn’t have the strength to walk the 5 metres or so from the car to the beach. And I just sat there sobbing, wondering how I could get myself out of his hole, with no idea how or when this would ever end. I did work on managing my movement enough back then to get in the water a few times - but the point was it was that hard. And here I am now getting in and out of lakes without even thinking about it. A week of wild, watery abundance. Here it all is....
Sculptured Rocks, Groton, NH
A fairy glen of dancing light and emerald water. Explored up and down the river with my reef shoes on and swam upstream through a tall chasm of rocks to bathe under a waterfall.
Newfound Lake, Wellington State Beach, Bristol, NH
We arrived at this beach in the late afternoon. The wind was up but it was almost just us. Newfound Lake is said to be the cleanest lake in New Hampshire, over 4000 hectares wide and fed by 8 different springs. Both the wind and the water were cold. A bright, fresh water sea of a lake.
It was so cold in fact that I changed in Jesse’s winter swimmer's coat (Jesse will repeatedly crack open the ice for a swim all year round) and wore it still shivering, all the way home.
Little Lake Sunapee, Bucklin Beach, New London, NH
These were the rafts I dived off as a child (now no diving allowed). Great swim, wind also freezing.
Kezar Lake, North Sutton, NH
I really, really wanted to swim at this moment, despite the cold. But didn’t - because I had climbed a mini mountain the day before (!! see previous post) and needed to wait and see what the full effects would be.
Webster Lake, Franklin, NH
Didn't feel great or that much like swimming this day so just a quick dip. I always find the water still brings everything to life however you feel when you get in.
Bradley Lake, Andover, NH
We spent a few hours sat on paddle boards with a friend before swimming off Blueberry Island on my second day here. No photographic evidence as Lindsey’s phone was offered up to the Lake Gods as her canoe tipped over while she tried to take a picture.
This was my last evening with Jesse. Back on Bradley Lake, we quietly slid the canoe onto the still evening water from another lake house Jim is working on. We passed an hour sitting in silence on the water, watching the occasional Loon swim by. A gently bobbing meditation as the light changed. As we pulled back to shore, I knew it would be crazy to swim because of the cold that had started to deep to my bones again. And that is the discipline of CFS - not so much what you will yourself to do as much as the number of times you make the choice not to.
Highland Lake, East Andover NH
Last swim before my flight from Boston. Water warm enough to swim for a decent length of time. This is the beach where all the local swimming lessons happen in the summer.
I've reached the conclusion that swimming or even simply submerging myself in wild water, be it lakes, rivers or the sea has played a key part in my recovery. I could go into the technicalities; perhaps it helps to calm the nervous system again. Above all, it connects me far more deeply with nature, puts everything into perspective and makes me feel totally alive. Wherever I end up back in the UK I hope its something I can make a normal part of any week.
I came downstairs the second morning to find Jesse and Lindsey had written elaborate lists of all the places and they wanted to take me. There was a little bit of talk of a gentle fifteen minute climb up to a look out and checking I would be ok to do it. And I knew I would be. The Sunday morning came and we walked through the woods up a small hill and looked over Little Lake Sunapee. I was fine. It didn’t exactly count as a mountain but I chuckled at another marker of progress - I wouldn’t have been able to do that at the end of April.
Clark’s Lookout over “big” Lake Sunapee, New London, NH
Then later it transpired that we were planning to go up (or at least as far as I felt able to) the trail to the peak of Mount Kearsage, the mountain I’d seen hovering over their clearing in the woods from my bedroom window every day.
We didn’t have a huge amount of time to make our way up or down before the ranger closed the park gates by the time we arrived. I was feeling strong, well and that I was ready to get my heart racing. I've been steadily physically doing more and more for the past month. I gently bounded up the trail through the trees feeling that banging in my chest I have missed so much. My lungs reaching for cool gasps of breath. I almost ran up that bloody mountain! Bouncing from rock to rock up the rough rocky trail. It isn’t a long climb - a short 25 mins or so up. But the most I’ve been able to do since my recovery slipped back over four months ago. From the peak we could see the farm and the hardware store where Jesse works as tiny white specks far below.
At the top of Mount Kearsage with Lindsey and Jesse - this was a team effort, I never would have done this, let alone plotted it without them.
I ate whatever food we had - cashews, an apple, crunch bars. I had no idea if I had just crashed myself with that push. I kept my mind from racing - had I just been irresponsible? Had I just ruined months of discipline in less than an hour? I once dragged myself up a mountain in Mallorca before I really knew how to manage this condition so I had extra reasons to be cautious. We took some photos before we needed to start the descent in time to drive out of the rangers gates by 5pm. I walked back more carefully, my heart still pounding.
I waited four days before posting this... the most common (if defining) symptom of ME is something vastely understatedly called ‘post-exertional malaise’ which can hit even a couple of days after physical exertion. An older me in an earlier stage of recovery would have probably felt as high as a kite for a day or so (adrenaline and endorphins in overdrive) before being nearly bed bound for anything from a few days to a few weeks.
I took it gently. I waited.
Nothing happened. I was only fractionally tired.
I was fine.
In the car on the way home from the summit, I suddenly blurred out, “I just climbed a mountain”. Realising that that had been the thing I had dreamed of doing when I conceived of this trip. This had been the target my physio and I had agreed on back in December... it has taken until now to get here.
I remembered lying in bed, visualing myself climbing mountains and jumping into freezing water below a waterfall for months before this trip was even conceived. I hadn't only seen it, I had felt it all, again and again, night after night. My way out of how trapped I had felt by my circumstances back then. I realised that fulfilling the picture I had kept in my mind of the pool of water below the waterfall was also exactly what I had been doing at Sculpted Rocks the day before. I had learned to let go of those visions when it turned out my recovery was so far behind where I had thought it had been. I had focused instead on being ok with things as they were, always attempting to do whatever my body safely felt it could do. Learning to read the subtle signs of my body so that I could keep it within its limits whilst coaxing it gently onwards. And as anyone recovering from ME will know, that alone isn't enough. I found this only worked because it went hand in hand with a couple of years of navigating my way through a medical maze.
Only a few days before my final flight home. I climbed a mountain and swam in a pool of spring water under a waterfall, just as I had imagined.
The timing of it all feels like a rather beautiful universal practical joke.
I flew from Colorado to Boston and Jesse met me at a rural bus station not far from New London late that night. I’m staying with Lindsey, Jesse and their parents Jim and Grace. We all met when I was twelve years old on one of the best family holidays of my childhood. Lindsey was the niece of a friend of dad’s from university and the family had let us use their grandparents lake house for a couple of weeks (my parents had to be inventive when it came to holidays when we were growing up). My siblings and I were in America, diving into water, eating a ridiculously sweet brand of ice cream some hippy friends of theirs called Ben and Jerry had invented. Lindsey and I always kept in touch and we both ended up becoming musicians.
I got to know Lindsey’s older brother Jesse later on when he lived in London with his British wife. Being back with them all now feels as if I’m with cousins or even siblings. The family live in farm buildings that sit in the endless expanse of bright green (and in summer months - typically for New England - bug infested) trees below Mount Kearsage.
Most of the family members form The Ragged Mountain Band. Jim is a carpenter and they spend hours chatting around the kitchen table late into the night and sometimes don’t get round to eating until nearly 10pm. While my blood sugar levels found that more of a challenge, a family member has had ME for eleven years and they are looking after me amazingly. We're also enjoying sharing lots of notes - as with so many other people I encounter with ME/CFS, we'll all have a unique way in and out of the condition but the similarities and the challenges that we understand will always be uncanny. At the perfect moment Jesse will hand me a boiled egg for my blood sugar levels and and just say, “Jess, you need this now”. And he’ll be completely right.
The thing is, I am feeling and acting less and less as if I have ME/CFS at the moment. To the extent that I’m using the past tense when describing it all.
I love what this T-shirt is saying. In all senses of the word. Become intimate with fear with all the love you’ve got.
This is the day I hired the neighbours car and took myself on a little road trip to 10,000 feet in The Rockies. I waited a bit to make sure I was clear of any kind of crash after 4 days of travelling - and I’ve been fine. I’ve been feeling more of the altitude if anything. Tried a bit of a mountain climb - more a bit of walking over rocks up hill - but only managed about 15 miniature or so. The air is dry and thin up here but also leaves you with the feeling you want to get something done. I have the sense I will start to be able to act on that feeling, in a very new way more and more now.
This day was my favourite in Colorado. I’ve heard that you can’t really understand America until you’re behind the wheel of a car and after my time here, I think they could well be right.
The person who handed me this shirt after giving a talk on courage said I had earned it. Regardless of whether they’re right or not, I’m claiming this shirt. It’s mine.
The air has been thin up here and has taken a bit of adapting to. Spring is bursting with giant Irises and the smell of the last remaining Lilacs. We’ve had a few fairly cold and even wet days, rare for Boulder which boasts 300 days of sunshine a year. It still feels spacious, dry and energising to be here.
Maria (the Australian friend I’m staying with who also once took me under her wing many years ago) has been really looking after me. She bakes fresh sourdough in the mornings. Rocky, her rescue cat is is suspicious of visitors and is still keeping me at a very safe distance. I’m watching a small neighbourly tech-world soap opera involving a Ponzi-scheme unfolding around us and will need to stay tuned long after I’ve left. I wanted to rush off into the mountains a couple of days after getting here but had to wait until I was a little more confident about how my body was.
The first week I was here coincided with Boulder Start Up Week. Maria is developing her own AR App for interior designers and I went along to quite a few events with her and Melodie, her business partner. I noticed the excitement bubbling in me again at the talks and when meeting people. And I feel as if yet another part of my mind and spark is fully back. Finally, I’m truly ready for a bit more work. I was going to have to at this point anyway - that was the great gamble of this whole trip. It will probably have to be part time. I have some ideas. I’ve already started looking.
Boulder is turning into a new Silicone Valley as Google and Facebook move in. It’s an exciting time, but it’s also upping prices even higher (a tiny supermarket shop makes my eyes water) and houses are even further out of reach. There’s a slightly monied blandness creeping in, while at the same time who wouldn’t want to live here? I certainly do. It’s also the fittest city in America. Almost every third person you see is in yoga pants or cycling gear or just back from running up a mountain.
I left enough time to not feel I have to rush seeing things here. Maria and I are heading to Vail and the mountains tomorrow. I danced salsa to at least 4 songs last night with no ill effects so far. And Maria says, “Jess, if you hadn’t told me you were ill I would never have known now”.
Some images from my four day hop. It felt momentous in its own way - partly because I was crossing a corner of the world I’ve never seen before, joining up the corners of our Eurocentric maps that show the world ending a little east of New Zealand. Also because I was feeling so well. This is the home stretch.
I had a last snorkel in the rain before packing up the beach hut. Jenny, my local friend came to say goodbye with her cup of tea on the balcony as she has done every morning. It was an extremely wet and turbulent flight to Rarotonga (I found a great deal of joy in taking this flight in my flip flops...). Joey met me at the airport and took me back to the farm. I recovered from the journey, repacked the cold weather clothes I’d left there and finished a painting (that’s another post).
Before I left for Aitutaki, Odette had been just as delighted I was going to be there for the final of The National Dancer of the Year Competition as she had originally been cross I was going to miss it. I sat through half the dances (it was a great way to really get under the skin of Cook Island’s Maori culture) before I had to quickly find a way back home to bed.
I said goodbye to Rarotonga and got on the plane around midnight. I knew something was different this time. It is such a tiny airport there was no need for a wheelchair, but I realised how stressful I still find flying as long as there’s some element of ME to deal with. This time, finally for a night flight, I slept on a plane. In Los Angeles the next morning I almost fell into my hotel room by the airport and did nothing (minus a swim, already missing the water). I had arranged it that way. Decided to explore LA when I have some real energy and am on less of a tight budget. I suddenly felt I was back in a more familiar world. With working WiFi, power-showers and baffling politics.
The next morning I flew to Denver. Again, I needed the wheelchair but not half as much as before. It felt much more of a precaution. Maria met me at the luggage carousel. It had been 18 years! We became friends when we were in the same tiny group of people studying with a Tibetan Buddhist nun in Sydney. I had wanted to visit her in Boulder for years and here I was, chatting as if we had just crossed The Golden Gate Bridge.
Cartoon by @SKZCartoons
I posted this online yesterday, but I’m going to leave it here as it’s just as relevant to the blog. Seeing the posts and protests from so many others with CFS yesterday reminded me of not only how far there is to go in the world’s understanding of this illness but also how far I’ve come and how incredibly fortunate I have been:
“I’m sure I’m about to speak to the converted but couldn't let 12th May go without a note. Today is an international day of action #milionsmissing for the people missing from their lives due to the neuro-immune disease called #ME or #myalgicencephalomyelitis (even I struggle to spell it properly). Athletes, teachers, students, performers, parents, children, executives, nurses... It's otherwise known as #ChronicFatigueSyndrome, more about how that's a bit of a crap term below.
Anyway, I'm definitely not missing from my life - I've just today landed in Los-freaking-Angeles after exploring and snorkelling in the South Pacific for hecks sake. I refuse to be missing. I will fight by living more than I ever thought possible - albeit in a new and very different way.
But it's not that I have more will power, I'm no more positive than the millions of people who really are still constantly bedridden. The truth is I am one of the very lucky ones. I am slowly finding my own way through the medical maze to reach a level of functioning that can allow me to live more richly than ever before.... But I still have to manage it in most moments of my day. And I still have the lowest of times when I can't lift my left arm or hold my head up and have to watch the life I so really want to live dropping away from me again. I have no idea if this is nearly over now or if like many people I know, this will be decades.
We need more research. Desperately. There isn't an obvious pharmaceutical answer to this and funding has not been fourth coming (any cause and effect there I wonder!??). The NHS unit that did provide the physio that actually helped me a great deal has now been completely shut down. We are making progress with understanding - I have met a lot, but we still need so much more. Today brave souls all over the world from Canada to Australia and The UK are compromising their recoveries to get out of bed and make a noise and be seen. The people who can't physically make it are putting out an empty pair of unworn shoes with a note. And I think this great little cartoon says a lot. Ask around, and google 'spoon theory' if you fancy it.”
I always used to travel with paints and a sketch book. I thought I would keep things simple this trip and stick to photography and writing. I started to get the hunger to paint again in the South Pacific. Everything I looked at was waiting to be turned into fabric design.
A few days in I was resting to drink some coconut water, sitting in the shade talking to the young guy at the coconut stand (this was the start of that mistaken bike ride). Soon his sister Kimberly turned up. We hit it off immediately. She designs sarongs and I asked if there was anywhere on the island where I could buy art materials. 20 mins of chatting later she was driving me to her house, insisting that I borrow her paints.
The next day Odette (who runs the farm I was staying at with Joey) overheard my story. While I was resting one evening, she knocked on my door and silently left two brand new canvases she had just bought right next to me.
It ended up being really hard to paint much with the crash to deal with, cooking was hard enough. So I did a bit, tried to paint a picture of the farm for Joey and Odette to put up in the small unit for guests. I made a start and decided I would have to let it go.
On my way back from Aitutaki, I had about 30 hours in Rarotonga with a last night on the farm before my LA flight the following evening. I ended up with about an hour to finish some kind of picture but I decided it didn’t matter how perfect or cheesy it was. Joey and Odette were getting a painting using my one paintbrush, Kimberly’s paints and Odette’s canvas. ....here it is. It includes the farm and the hills behind it. Perhaps they’ll be more paintings to come from these islands?
The moment I even got on the tiny plane to Aitutaki I breathed a sigh of relief. This place called me all those months ago. And the place just, well, it ‘works’ for me and my body... which isn't hard considering it’s one of the remotest and laid back versions of island paradise you could find on this earth. I almost don’t want to write too much - I almost want to allow this place be a bit of a secret..
I have had moment after moment of bliss half camping in my tree house-beach hut. It’s basic and perfect. A balcony of palm leaves looking out to the sea, a washing up bowl of fresh water to get the sand off my feet. A small gas stove and a comfy bed with a mosquito net. Mosquito nets surround my open windows so I really do feel as if I’m in the trees, coconuts banging off the steel roofs in higher winds. I’m buying fresh fruit and vegetables from Sonia who grows them a couple of plots of land next door. I’m living off that and the supermarket shop (the one I had an ME crash in) and cooking my own meals most of the time.
Moment after moment of bliss.
Walking out of the sea, pulling off my snorkel mask, cracking open a coconut, feeling its juice drip down my wet sea-salty arm as I drink it. The views of the sunsets every night, the fire on the beach while people sit and chat around it under an infinity of stars. On a full moon the beach is crawling with the moving shells of hermit crabs. I walk slowly wearing my head torch as I cross the sand to the shared toilets, making sure I don't step on anything.
But it isn't only the picture perfect turquoise lagoon, the white beaches and palm trees and how quiet and cut off it is here; it's the people too. It's just about the most relaxed place I've ever been to. I feel at home here in a way I wasn't able to even on Rarotonga.
I'm sure that living, and certainly growing up, on a tiny remote island has its challenges. The cost of living is incredibly high for some basics. The local tap water isn't drinkable and the authorities need to turn it off without warning intermittently throughout the day to conserve it. The shelves of the grocery store don't have much on them until the container ship arrives once a month. Occasionally you'll find a bulk stock of something laughably cheap on the shelves - because it's only just out of its sell by date. Young people talk of being busting to leave, to get out and head to New Zealand or Australia. But I can also see why so many islanders choose come back and settle here permanently again if they do leave. After just a week I start to recognise people... there's the grandfather from the christening in church the other morning, that's the lady who sold me a paw paw.
I love turning up in a place like this without knowing anyone. I didn’t assume it would happen but as has usually been the case, I met other solo women travellers who I immediately hit it off with. Jenny the local massage therapist who has been living in The Cooks for over 15 years has also become a firm friend and wants to know when I’m going to be moving to the island (!). It crosses my mind that perhaps that’s what she asks a few clients a week, most probably when they’re in a putty-like state of helplessness on her massage table.
I know that something very special is happening here. Even if it's no more than the power of being on a few tiny bits of rock in the middle of the Pacific Ocean, I can feel something charging me up with what I can only call a life force. This is now the most energised, well and peaceful I have ever felt in my body and mind since I fell ill. The giant sense of relief after the Rarotonga crash, is that it seems I can now recover relatively quickly in the right environment - ten days this time. From Anahata in New Zealand I am still doing small amounts of restorative yoga, chanting on the beach most mornings and sticking to Yoga Nidra (the sleep meditation that has become a daily essential). I’m not being so good at meditating - unless you count snorkelling!!??
I feel as if my world has exploded open with possibility. Who would have thought, less than a year ago when it was uncertain if I could even cope with a mobility scooter for Glastonbury, with strict physio limits and learning to live with constant flu, that I would be here feeling like this now. Freely scootering around an island in the South Pacific, snorkelling, swimming and walking. Not quite up to climbing the hill to the lookout, but I feel more or less ‘normal’. I feel healthy. Incredibly alive. I am here. I made it.
An ME/CFS Thriver