Until I became sick with Chronic Fatigue Syndrome, I lived my life thinking on a mostly linear plane, when it came to the passage of time and events. Growing up, finishing school, getting a university degree, traveling on a timeline, vigorous bushwalking journeys from A to B, growing older, completing seasonal work contracts. I look back on memories via photographs marked with dates and ages, and have made detailed plans for future events on countless scraps of paper. Just like a 'normal' person, I periodically got sick with flus, colds and tummy bugs, and was rightly miserable while these lasted. But my intermittent snotty maladies rarely held me under for more than a few days. My previously-functioning immune system quickly quelled the foreign invasions and I regained my strength, stamina, verve and spark.
But not this time. Now, when I have the greatest need for the comfort of the Buddhist principle of impermanence, this illness does not shift. It holds me under. Occasionally it lifts a little. I start to feel less sick and my hope and spirits rise, but again and again I am dragged back under the swamp of malaise, doubly miserable with disappointment and disbelief. What is going on with my body? Why can't I recover?
In my university days I was an adventurous, outdoorsy lady, keen for pursuits that would spark, splash, frighten or exhilarate me into feeling more alive. I joined a motley club of quirky like-minded sorts, and spent many a weekend whitewater rafting. Thrill, exploration, challenge, love of the natural world, and the silliness shared and friendships formed were drawcards. Ice cold feet, squeezing into early morning damp wetsuits and the real dangers of hypothermia and drowning did not impede us.
River-travel, it may seem, is an essentially linear occupation. The boats are launched at the 'get in' and the crew wedge their feet under the baffles and lean forward, grasping brightly colored paddles and cocking their ears for commands from the guide: "forward paddle! Back paddle! Stop! Over left! Hang on!". After negotiating a twisting series of river-rapids and rocks, squeals from cold water dunkings and a midway lunch stop where everyone jogs and jumps by the shore to warm their frozen feet, the boats are disembarked from at the 'get out', a somewhat further way downstream. Dinged up outdoors-bum cars are a welcome sight, and life jackets, wetsuits and soggy Dunlop volleys are gladly peeled off in exchange for dry warm socks, fluffy polar-fleeces and woolly beanies.
Of course there were several times when things didn't go to plan, due to various snags and mishaps of the journey. Late starts were common, due to too much 'faffing' at bakeries in the morning to mollify woozy student hangovers, or because members of a car convey got lost in the network of old forestry roads that lead to the river. Other mishaps included 'wraps' where a momentary loss of control lead to the raft getting well and truly 'wrapped' around a boulder with the entire water-weight of the river pinning it there, and the crew dripping wet and stranded on various rocks up and down the river, unable to hear each other shouting over the roar of the rapids. Often several hours were needed to free the boat with a complicated system of ropes and pulleys from the shore, and at least one person bravely leaping over slippery, wet rocks to attach the lines to the stuck raft. I was more than once part of a wet, bedraggled group of rafters who had to resort bush-bashing for hours after nightfall to make our way back to our cars and dry gear, and then needing to traipse back again the next day to retrieve the abandoned rafts. But, essentially, our river missions were always intended to be linear, from up the river to down the river, whether that was over several hundred meters on a short, sharp whitewater course, or several hundred kilometers for a week or two with food and camping supplies strapped tightly onto the rafts in watertight barrels.
But are river systems linear for all entities involved? Are rivers linear for fish, tadpoles, rainforest trees, water-reeds, platypus, driftwood, debris or the water itself? It is not always such a simple drift down to the sea, particularly for those items of flotsam or jetsam without the power of self-propulsion. Water recirculates, in furiously raging stoppers or slow gentle eddies. Logs get jammed for decades in tight spots, or left high and dry above winter flood lines. I ponder this because sometimes this is how CFS makes me feel. Like I'm a piece of driftwood on a river without a paddle, battered about by the current. Sometimes I'm held under by a pounding, furious stopper, which can hold me down for long times, occasionally relenting and letting me up to gasp for a breath, before dragging me down under again. Sometimes I feel like I'm stuck in a strainer, with all the heaviness of sickness and suffering flowing through me, while I'm snagged underneath the waterline, unable to talk or move. Sometimes I'm just stuck in a gently recirculating eddy, which can be quite pleasant, as I meditate, watch clouds and birds and flowers, and wile away the time crocheting, with intelligent, eloquent podcast hosts as company. But I still see no way out. I've lost my agency. I've lost my paddle. Or at least the strength to get up off the floor and use it.
I'm confident I'm not the first to compare life to a river. Sometimes shallow, rippling like diamonds in the sunlight, sometimes deep and dark in quiet, peaceful gorges, sometimes narrow and crashing over rocks, sometimes wide, slow and lulling. We are all carried down various streams and currents in life. We get stuck on rocks and snags along the way, or are swept over life-changing waterfalls, emerging, if we are lucky, battered and bruised at the bottom. Sometimes it all goes too fast and hard, and sometimes we can't see our way out. We all take steps and slips backwards, forwards, sideways, up, down, inward, outward, as time rushes through us. And sometimes we all feel like we have lost our paddles. But the river is constantly flowing, always down to the sea. Which of course, my biologically aging body is, if the ocean is analogous to death. We all reach there, at some point or another.
And when water reaches the sea? Cold, dark-colored river water with its cargo of silt, flotsam and jetsam is gradually mixed back into the salty brine. Daylight shines on the ocean surface, evaporating and raising the water molecules high. Air pressure differences transfer them to the mountains, where they gather in swirling clouds. Rain falls, little streams flow. There's no real linearity for the water molecules, just different lengths of time in different states of being.
Alright alright, so I'm not really sure where I'm going here, dabbling my toes in the timeless metaphor of water and river. I don't really have anything deeply philosophical to say on the nature of life and the universe, reincarnation or the recirculation of souls. Its true that linearity may be just an illusion of simple human minds. A lot of life is cyclical after all. Seasons, nights, days, moon cycles, cleaning, getting dirty and cleaning again, weeding, planting, eating, shitting, decomposition, the death and rebirth of stars and the expansion and contraction of the universe. It's all very interesting to think about, but rather daunting. All I can say is that I doubt we'll ever know the true nature of reality, beyond that our molecules will be forever recycled, until the end of the earth, and then once again back to stardust. I just wanted to write a story to say that sometimes CFS feels like I'm stuck in an endless, steep-sided river valley without any agency, at the whims of the weather and water. And all the non-linearity of chronic illness is a really difficult thing for a simple, right-brain-dominant human to get her mind around.
I still often dream of those rivers and river trips. Often with pangs loss for my previous health and youth, love affairs and friendships, and of course with a memory biased towards the beautiful, sunny, hazard-free days, rather than those where leeches were found in unspeakable spots, face-biting hailstorms assailed us mid river, or we were huddled in miserable boggy camp spots under leaking tarps. I reminisce wistfully, especially in summer. 'Now is the season of sun, long light and overhanging river-side waratahs', I sigh, 'when I should be drifting down beautiful, remote Tasmanian rivers and swimming in their sun-dappled honey-brown water, laughing with friends around the dinner pot of curry, and sleeping on soft rainforest soil under ancient myrtles, under the stars, with the water always swirling away, downstream beside us. But no! I'm stuck at home in a sick body, indefinitely, and aging into my mid thirties. All my old river-friends are home with their toddlers, real jobs and home renovations. My life shouldn't be like this!', I cry out in resistance to my new reality.
Then sometimes I remember some river-safety training tips. Apparently if you are stuck in recirculating, powerful stopper, desperate for breath, you should unintuitively, actively, swim to the river bottom, where you have the best chance of being flushed out by the downstream current. Or when you are surfing in a kayak you need to go against your instinct and lean into the wave, to avoid being flipped over and tumbled in the whitewash. Or with quicksand, the less you struggle against it, the less you will sink. I think these are probably apt, if difficult-in-practice metaphors for dealing with chronic fatigue. For leaning into the fear, pain and loss, accepting the here and now, and not wasting precious energy in angst, fear or denial. Maybe this low energy state is my 'new normal'. My new baseline. It could be a long while before the river valley changes character again. Or it could be soon. Nobody knows what is around the next bend, or what will come with the next change of weather. I just know I don't take the ability to paddle for granted anymore.