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.
An ME/CFS Thriver