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.
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.
An ME/CFS Thriver