Our Gap Year Derailed - By An Unwelcome Souvenir:
Written May-Aug 2020
Quick disclaimer: Please only read from a place of compassion, this is personal, this is a task of honesty and unloading for me & I’ve mustered some catharsis with a full-stop (There’s no room for judgment, my long narcissistic outpour is big-enough already).
An Overseas Experience,
With our resignations sent out and miscellaneous Kathmandu products filling our packing cells, we were set for some long sought after escapism – having held onto the hope that the world was waiting to be explored by us. With small bank balances and overweight backpacks we were wholly unprepared to travel overseas and budget foreign living costs for six months - especially after starting in Bali were food was unreasonably low and set our expectations for $5 (NZD) vegan eggs bennies and $2.50 coconut lattes unrealistically high.
Although only modestly planned - it had been a long anticipated adventure, one we had both wanted since school - and I’ll admit I had half hoped to become a changed women as soon as I set my eyes on foreign horizons. It didn’t exactly go like that – it was gradual, letting go of routines isn’t instant, you have to make a routine out of losing one. We had to allow ourselves to sleep early; late, long, often, eat brunch after lunch time and welcome freedom (trying to shake off the urge to over plan itineraries, to do what we wanted - whilst being creative with limited funds). This was time unchecked, freedom to have fun, explore, read, write and to be grateful to let go of the binds of work and study for a little while.
South East Asia demands your attention, life squeezes its way between buildings as over sized flora and fauna mount every perch, 96% humidity mixes with the smell of ginger and lemons, pressing onto your skin whilst heat makes its home in every dish (following this we couldn’t travel without a bottle of pocket Tabasco sauce to spice literally everything up). The traffic is always a wave of mopeds and rickshaws rolling with constant shouts, horns and bells - it’s all condensed noise, colour, steam and sunshine.
We had our hearty fill of dumplings, noodles, skyscrapers, rainforests and paddies; and made some of our favourite memories, with new friends in unexpected locations. After climbing waterfalls, sunrises and temperatures, we arrived to the smog and heavy warmth of Chinese summer, with new skill sets in haggling, an ability to conversate in single-phrases and lots of hanging macrame plant pots (later stolen).
In our SouthEast Asian ventures through Bali, Singapore, Kuala Lumpur, Vietnam and Cambodia we encountered a colourful array of challenges, ‘missing’ luggage (RIP our Nike slides and the aforementioned macrame decor), scary bugs, scams (in many inventive forms), misguided directions, realising at dusk that we were indeed lost, having to wash our ruined clothes in showers with complimentary shower gel and, with regret, resorting to tonic water to clean our teeth with.
Despite all our precautions (centering on not dying from peanut anaphylaxis throughout Asia); it went wrong and we couldn’t get it back in our control.
Two months of travel and I’d already mastered Bali Belly, a UTI, Sinusitis, missing nails and a month of Travellers-Diarrhea, self-managed with Immodium, anti-nausea and Ural - whether any of these infections are related to my later episodes remains to be seen (& likely will never be known).
This time I got really sick – which for me is usually un-notable – because I do get sick. Having an impaired immune system and going through school, Uni and work (especially with the germs wiped on me in an early childhood centre) meant I was often as sick as I was well. I’m used to being sick, recovering, feeling better and getting sick again. I knew a big weekend meant a week or two recovering and making myself vulnerable again to nasty bacteria in my environments - maybe this was unsustainable but I’ve always tried to value a good experience over subsequent discomfort.
This pain was different. My physiology now is still primed just by recalling the episodes, my heart-rate picks up, I shake, I struggle to keep my voice steady or slow, my body recoils, cringes - there’s a name for this and it’s PTSD.
China;
The first episode struck in China; with the damp heat of August pressing down on our most adventurous leg of the trip, we had embarked on an unplanned four hour bus-ride (due to some ominous flooding warnings) with a Russian Tour Group.
With the sun setting we wound into the mountains of rural China in search of our vessel, which rested somewhere on the Yangtze river. As midnight drew in we arrived at the Ghost City, a stretching, unlit path, of floating barrels awaited to take us aboard our Chinese tour boat. After trying/failing to negotiate Wifi and a few drinks with a Welsh family and some locals, we settled into the least luxurious ensuite cabin you can possibly picture.
Flood lights splintered between the metal railings and curtains of our dark room. Nausea rocked me awake. My heart felt like it was ripping through my chest- I could see my body vibrate with the speed and force of my own rapid and irregular pulse. Intense pain was ebbing, swelling, from the left side of my back, my side, my stomach, violent gastro symptoms followed, I couldn’t keep water down, I couldn’t stand, there was a lot of heat, sweat and blood. There was no represise and no rest or escape from the pain (not for a second) for nearly 48 hours.
The most distressing aspect was being trapped thousands of miles from a hospital on a Mandarin-speaking boat, without wifi or a way to communicate, Tony asked to get off to find help, but there was nowhere suitable to dock for the 3 days.
The onboard chemist used a translator App to get me to take an IV on a dubious massage chair and drink unknown inky-black Chinese herbal medicine and take piles of antibiotics and pain-relief for an unknown diagnosis. I thought I was dying, I wanted to fall off the boat.
Three times a charm;
After my symptoms subsided and we finally got to a doctor when arriving in Shanghai (almost a week later) with an apparent infection and dehydration, we decided to continue the trip.
I thought, repeatedly, that I was recovering and I tried to move forwards, but the painful and traumatic episodes followed me three more times over a two month period - always when I was in a rural area of a foreign speaking country, always struggling to access healthcare (let alone a hospital) and always with a changing and unconfirmed diagnosis.
Many insurance calls, antibiotics, misdiagnoses (Kidney stones, PID), random infections (including an unexplained cervix infection) and after a long stay with family in the UK, the battle was lost. We tried our best to enjoy the last moments and came home, feeling a bit sheepish and defeated.
Coming Home
Having what should be the best experiences turned into the worst is difficult to accept, especially on a homecoming. Feeling the need to under play the difficulty and keep positive and grateful is a momentous task whilst realising the damage lives inside you still. I thought I knew what sickness was... but getting sick and not recovering is truely crippling me. This sickness and damage has cemented itself deep into my everyday, it travelled the world, before flying across time zones to come home with me, an unwelcome and unrelenting companion.
Now I’m facing a different sort of journey than the one I anticipated -
Instead of finding myself in the snowy mountains of Switzerland or the smoky bars of Amsterdam, I have to try heal myself - because I didn’t get better despite the many reassurances. My souvenir home, amongst the Chinese magnets and Vietnamese embroidery, is chronic pain and a desperate search for a clear diagnosis and treatment.
Some tough thoughts on getting really sick & not getting better:
I’ve wielded a dark sense of humour and I’ve caped myself in optimism, but laughing it off whilst googling the shit out of it really doesn’t work.
In all honesty I’m stuck. I can’t move forwards, I can’t exercise, work, study and grow when bad-days mean I can’t get out of bed, crying because of the pain aching in my wrists, palms, soles, travelling down my legs - a tide that ebbs from my side and torso, rolling nausea sending me to the bathroom, the pain and fatigue sneaking up on me when I think im recovering.
Chronic Pain
Pain sends me to bed at 6 pm but keeps me awake for dawn. Daily tasks become ordeals, when a flare up means making a cup of tea is too much. The good days are bad and the bad days are terrible. My mantra towards obstacles having always been ‘mind over matter,’ mocks me, my matter is betraying me, working against me at a cellular level. I’ve felt exhausted, exasperated, because I can’t feel better waiting around to get better. I’ve let go of mourning the year I took from us, all the planning, the time, the savings, if I could simply let go of being unwell too.
What’s worse is the not-knowing, to have vague indicators in blood-tests but no clear answer, no fix or cure. To not know what’s gone wrong but know it has.
To wait, burning time on referrals and know you’re still so far from treatment and recovery. To face an otherwise invisible illness and acknowledge its hidden in you for a half a year already, toying with every aspect of your life. To try explain what it’s like to others and fail.
To feel anger, guilt and shame that you can’t do what everybody else in their twenties can - to feel the unsaid judgment of those who won’t understand pain they can’t see, or haven’t known.
I’ve become afraid of what lays ahead - forced to a realisation that there’s no choices, only that I must tolerate suffering, with no escape route & without the reassurance that if I persevere it will eventually pass. What if it doesn’t - as it hasn’t? What if that one week that turned into seven months turns into me?
What if i cannot tolerate it? When I’ve cried ‘that’s it - I can’t take this anymore’ when I’m woken at 4 am by piercing pain and clammy nausea, as pain seeps into every thought I have - What happens if I can’t take the feeling that I’m rotting from the inside - There’s no ‘that’s it,’ no towel to throw in.
I still want all the dreams I’ve ever wanted, I want them more, I want them ferociously, unapologetically, I want to be in the sun.
I’ve bargained with Fate, God and Karma - I’ve told them I’m sorry for whatever mistakes I made, that I’ll never waste good fortune again, that I’ll love small moments with furious gratitude - I’ll let pain make me a better person - if they’d let me heal.
I want to move forwards again – desperately - to wake up and feel nothing, to have a day symptom free – to look towards the future less wistfully and more pragmatically. But how do you make plans if you don’t know when or if you can ever embark on them?
When your own health is so out of your control in the hands of busy, sometimes thoughtful, often negligent, others. I feel alone in an audience to life, and I’m watching it happen for everyone else and I want to grasp it, but I can’t move my arms, they ache and I’m exhausted.
Pretending to be okay with chronic pain is the final straw; however it’s one I’m finding that I can (& should) dust-off.
Saudade
A Portuguese word that has no direct English translation - can be understood as a deep desire for something or someone that does not & likely cannot exist. — The nostalgic longing for someone or something loved and lost with a subconscious knowledge it may never be had again.
I came across the phrase Saudade and its stuck with me, this sort of sad nostalgia which has an unacknowledged element that what you had is gone, rather than missing. My health, that I’m pausing life to wait on, may never return (half-baked as it was) & there’s a sombre chance I have to accept no-relief and come to terms with this & find new ways to live.
& although I feel like I’m burning away my twenties stuck at home - unable to move forwards, I’m endeavoring to find a silver lining and allowing myself space to embrace that at times, it’s been pretty bloody stormy.
I hope that I might shed understanding &/or this might resonate with another person that is suffering or knows someone who is suffering with pain & discomfort chronically, with or without diagnosis.
