Life this week - Falling again, falling still

This text was written as I learn to live with Long Covid and attempt to regain my creativity. All the posts and some more info can be found here.

This is a lightly edited copy of a handwritten text, in a tent, tears close to the surface. It is possibly too raw but then what is this blog for if not exploring my illness and the way I live with it.

Other side note: I am okay. All that I write about in this post stands. It is also true that I am okay. Both are true at the same time.

I do not know how to express the week-end just gone. I went camping in my beloved place in Bannau Brycheiniog. I knew the risks of it when my body and mind felt so fragile, in the midst of fog and fatigue I inhabit so often. There was the travel, the endless walks to the toilet and kitchen block, the restless nights from the driving rain and gusts of wind that embraced my tent, but just like my last visit to the arboretum, there was also the potential for deep relaxation and the unknowable magic of Y Mynydd Du.

I go camping, I come out better mentally and spiritually, if not physically. That has always been a worthy trade off for me until this past week-end. I settled into fog and remained into fog. I experienced my hours and days in two speeds. There was the reality of my lethargic body lingering in headache, sprawled in the grass, sprawled in the tent. My sensory input slow and disjointed did not fully comprehend the world around me save for the flight of birds and the scent of grass deep in my nose. My memories blur, tell me nothing has happened but this state of floating in the ether, being witness to the passing of time without being a part of it. It is not an out of body experience but an otherness I am growing familiar with. I am here and yet I am not. I stretched. I read. I spun. I cooked. I caught up with friends. I watched swallows and red kites and woodpeckers and tits and robins and crows and blackbirds and blackcaps and magpies and I missed them all so fiercely. I heard the sheep bleat their restless back and forth and knew the hills they were in. Yet I was not here and none of the magic of Y Mynydd Du spread through me.

I opened the pages of Some Of Us Just Fall by Polly Atkins whilst in my tent, a book I asked for on my birthday back in December, a book I had been too afraid to open until now. The pages contain the story of illness, of chronic illness, of not getting better. I know I need this book just like I needed The Electricity Of Every Living Things by Katherine May when I realised I am autistic. Books, stories, the written words are how I've always understood my life. In most situations, I become monosyllabic, almost illiterate when asked to speak. I am an empty vessel, a mould in the shape people expect me to be. I shift and change depending on the audience and I am so rarely me. Give me pen and paper and then you will get to know me. I do not know how else to speak the truth of myself. In the open words of others, I find reflections of myself, the possibility of community and a way out of the loneliness that has shaped my life for so long. The words of others provide me with my own words, they seep into my lived experience and shape how I understand myself.

In the pages of Some Of Us Just Fall I expect to find a reflection of my new life with illness. I do not seek answers but maybe insights, a vocabulary I lack to express my new life, a moment of connection that tells me it is okay to be ill when so much tells me it is not. It is the end of May now and I tentatively pack the book amongst my sleeping bag, camping stove, and water bottles. I do not look at it when I do because I am afraid of the book. Back in December, the possibility of the book was all I could handle. I had spent the previous month and a good part of December crying and sleeping and sleepwalking through the world as reality of illness solidified into inevitability. The year turned and I started the slow process of learning myself anew, of redefining and redesigning everything I had previously known and built. Half a year down the line and I am still afraid of the book but I am going to Y Mynydd Du and there, whatever happens, I will be safe because the mountain makes it so. I trust them.

So I open the book and start to read. I close the pages of the first chapter under the sun whose warmth is stolen by the kiss of the wind. I crawl into my tent, my body violently taken over by ugly sobs. In a few sentences Polly Atkins has show me how much I still hurt, how much I thought was healing is still in a state of hemorrhagy. I cry and my brain tells me this cannot be good for my energy levels as my breath catches and my chest compresses on itself. Eventually I stop and put the book aside.

Tension builds in my body. I feel it in the tightness of my jaws and do not understand it. I am here, in the place that always rips me open, the place that always brings me back to myself, and yet I am tense and my body resists any possibility of letting go. I meditate but my mind stumbles and all my attempts end in frustration. I do not know what else to do but give myself to the tension, to the fog, to the hands that press the entirety of my body underwater and keep me there to drown. Everything is blurred and muted and I want to be left alone in my misery. I flirt with self-pity but the mountain, the fires do not let me. For here is community and care. I dine with J and I am invited to sit by the fire pit with D and A and B and strangers I do not yet know. We talk and laugh and the tightness in me loosens. I fall asleep happy and relaxed.

I awake in tension and the digits of my smart watch telling me I am tense. I snap it off my wrist. I know the data to be true. I feel it. I do not want to be told of it. This is my happy place and I will not have this taken from me.

Most folks around the site are putting down their tents, readying for their journey home and the long queues of cars on the roads of this bank holiday. I am here for another day still, one forecasted to be nothing but rain. 'Fine,' I think, 'I'll let my energy leech out of my by resting.' Sarcasm does not suit me and I know it. So I form a plan to guide me on the wavering line I tread. First I'll read, then I'll write, then I'll eat, then I'll nap, then I'll spin, then I'll read, then I'll nap some more before cooking a tofu katsu curry and falling asleep to the thunder of rain and wind on the tent. They day will pass and I'll be here having lived through it, the motions of rest enacted if not felt. So I read. I open Some Of Us Just Fall and let myself be guided through different ideas and ways of perceiving myself. I take copious notes, mark sources to look up when I am back home with a steady Internet access. I do not realise it yet but something stirs and pulses at a shift. Words bubble and I turn to my pen case and pad of paper. I write. I write these words and find coherence. I write unguarded and pause only to gather food from the kitchen. In this pause, I finally understand. I am held in the memories of a year ago.

A year ago I was well. A year ago I was unwell but did not know it. I lived in the illusion of strength and health and went cycle touring in the western isles of Scotland. After a difficult year of pain, of endless visits to the GP, of hospital appointments that lied in the reports of our conversations, of the possibility of ME/CFS held over my head, here I was, on my bicycle, exploring a new to me place and delighting in the ache of my muscles, the sticky sweat of my skin, the rush of wind that pushed at me down the hills, and the lashing smarting rain that drenched my poncho. I was happy and deeply aware of the privilege of health. Only I was not healthy. Signs crept in of my unwellness but I did not know how to interpret them. I brushed them off as natural tiredness. After all, I had not gone touring like this in a long long time. I needed to build my stamina back up. This was a lie, a lie I came to know viscerally. I was falling back into the illness that had plagued me for a couple of years up to that point. The crash that followed this trip is what led to my long covid diagnosis three months after I returned home. The narrative of the trip changed then. It was supposed to be a glorious return to all I loved, to my bicycle, to the outdoors, to my life. Instead it turned into the trigger for the dreaded diagnosis, the pivotal moment in which I stopped being able to blame my hormones and low iron levels for all that was happening to me.

I went cycle touring in Scotland and I crashed.
My body broke.
Irrevocably broke.

I let go of Scotland. It held a story I was not willing to face. A part of me blamed the trip for my illness just as another part of me knew that was irrational and childish. I forgot about Scotland as I fell and fell and fell and needed to put all of my energy into learning myself in this shifted body. I needed to release my dreams, the narrative that defined my life. All that was gone.

I was doing a good job of it until May came around and memories of my last cycle tour crept in my daily life. I saw my packed up camping gear and remembered the windswept hillsides and the cocoon of my tent. I took a weaving course and my thoughts turned to the weavers of Islay and Mull and the conversations we had. I obsessed and soon my every sentence contained pieces of Scotland, memories adrift coming home to create a new narrative, a complicated one that exists in a version of me that was already ill, an episode that is a continuum and not a starting point.

On the 23rd of May I boarded a train to go to Scotland, to go to Wales. In the days that follow I sleep in a tent battered by wind and rain. When the campsite in Wales is deserted and I finally understand all of this, I release the grip of grief and I let it live. I cry in the tent. I cry as I understand that Y Mynydd Du is still taking care of me. I cry as I understand that nowhere else could I ahve opened the pages of Some Of Us Just Fall and admit to myself how angry and sad and raw I still really am. The words of this blog are the narrative I would like it to be, a linear line in which I bleed less in a steady trajectory of healing. Here, as rain shakes the tent and rattles my body, I understand that it is not that simple. It was never this simple. I cry as I feel around my open wounds, as I remember the brief elation of cycle touring again, as I know now of the continuity of illness, as I anger at the relentless justifying of my pain to friends who don't seem to want to hear about it, as I have to truly loosen my grip on old dreams. I am still drowning. Here, in Bannau Brycheiniog, in the wind and the rain, in the sun and the heat, I am free to be broken, to hold the paradox that knows it is okay to be broken but also to know that I am not. I have simply sidestepped into the kingdom of the ill. I do not know this place very well and I feel a fraud in it. I am not ill enough. I have not been ill for long enough. I can do too much. I can... I am ill.

I have hoped for the linear easy story of recovery for two years. Now I know I am not the linear story our society loves so well. I live a life in which I an ill. 'This is the chronic life, lived as repetition and variance, as sedimentation of broken moments, not as linear progression.' (Some Of Us Just Fall, Polly Atkins) I am just beginning to understand this, to learn of the cycle of falling again and again. I probably could only learn this here, where I am endlessly falling because I trust this land to catch me, softly, to hold me as I fall.