Over two years have gone past since my diagnosis of long covid. Nearly four years have gone past since the infection I have never recovered from.
Sometimes, I think an eternity has stretched.
I struggle, now, to understand the life I had, the hikes I took, the bicycle trips I pootled on, the fields I slept in. I do not recognise this version of myself who could simply get up and go. Imagine being someone who could make a cup of tea on a whim?
I miss me, sometimes. Who am I kidding? I miss my bicycle and the version of me who thrived on it so much all the time. The pain is not as raw but I am not sure if it has lessened.
A month or so ago, I talked with a friend with bicycle tools I do not own about the idea of dismantling my bike, of hanging it on a wall in the house. My partner is not keen. I am not keen. I am less keen on the bike lingering in the shed, alone, unpedalled and uncared for.
This is not about my bicycle, not really. It is about the grief that never ends. I grieve and I grieve and I grieve and I think this illness should be renamed. Nobody told me about the grief.
Two years is not a lot of time to grieve a life. I know this but I am ready for it to end, or at the very least to stop for a month or two.
The year is slowly coming to a close. I have not camped once this year, nor have I swam. I have lost two jobs. I spent a winter horizontal, a spring learning to walk out in the street, a summer of learning my baseline has shifted, is shifting. I am a little scared of what will come in autumn.
Some days, I do not know how I am supposed to cope, to carry on.
I am not okay. And yet I am because that is all I have ever known to do, to be okay. Still, I cry.
I want to write about my bicycle because this is easier. I have had time to grieve, to think about it in the past tense, and to acknowledge the dull gently throbbing ache as love.
This, right now, in the midst of a five day desk job I can barely do - even from home. Of the idea of having to find another one, maybe not from home, of acknowledging the loss, the loss, the loss... well this... I do not know how to write about.
Yesterday I fell in the kitchen.
It's a thing I do now, a kindness my brain gives me when it's all too much. Everything shuts down, I fall, I disappear until somewhere some energy is found for a reboot. I got up again. I carried my breakfast tray to my desk and I turned on the work computer. It was 9am and space to grieve to cry to hurt to lie down to watch endless YouTube videos, to doze, to sleep, to be afraid, to be... none of that was possible.
It's Saturday now and tomorrow will be Sunday. I have two measly days to recover just enough to show up for work. Yes, of course, I can take sick days but those are not paid and well, have I mentioned how I have lost two jobs this year? This is one of them, ending at the end of the month.
I do not know how I will be able to work again but I will have to. Somehow. First though, I will cry and scream and stare into the endless tunnel of my grief. I am lucky. I can have a few months off.
I am afraid that they won't be enough.
How can they be?
I used to dream of time off like this. I took some once, just over ten years ago. I packed my bicycle and went off to Portugal. I cycled and camped and enjoyed myself. It was bliss. That same bicycle now lingers under a coat of dust I clean when I can, when the ache yells of love rather than pain.
My panniers, the same one that went the length and breadth of Portugal, are tucked at the very back of the under stair space, pushed down by the boxes full of camping gear, full of camera gear. Sometimes I think I should give it all away, let the gear be used by someone else, but I cannot because they hold too many memories, too much love, and what if, what if, what if...
What if...
I have to make an effort these days to remember that there is two side to the coin: if I can imagine my life, this illness, getting worse then I have to imagine my life getting better. Both are a possibility. And I'm good at this, damn it! This is what my brain has always done: seek the good, find new pathways, dig myself out of whatever pit I find myself in.
The cameras may be deep in storage, my bicycle may be saddleless and dusty, but my room is now filled with cotton and wool, with crochet hooks and looms. It is not a bad life.
It is not the life I had in mind, however loosely I had it in mind. It's okay. I know the impossibility of keeping a trajectory in life but I assumed I had a few more years of cycling off in the distance whenever I wanted to, for a day or two, sometimes more when I could.
See, I return to my bicycle again and again. This is still not about my bicycle.
I laid down on the carpet earlier today and breathed through an anxiety relief exercise. Now my jaw clenches, my shoulders rise to my ears, and my brain loops into 'relax, let go, let go, let go'.
Tears well up and I hate how easily they come these days. It's good. I need to cry but could I maybe, possibly need it a little bit less. This grief is so much work.
In the bright blossoming days of May when my baseline seemed to stabilise I'd made plans to work on this grief, to get to know it a little better, a little gentler. Plans, eh... they do not work very well for me. My baseline shifted shifted shifted.
And I hang on.
That's another thing that was not explained to me, just how much of my energy is needed to adjust. Constantly.
You need to rest they say. I would like to, very much so, but how do I rest when I need to learn boundaries constantly, when I need to dash my hopes of a plan made on a good day.
I went to visit my family recently. Some joked about my walking stick and I shut up about my visit to the mobility shop to look at wheelchairs. Some teased about going to bed early and I shut up about the damage done to myself by not going earlier. I was there for a happy event and it was happy and full of love and care, but it was also a life in which I'm not.
Only my brother understands. The rest of my family have not looked into long covid and do not understand the word fatigue. To be fair to them, I do not know how to explain the depth of the illness, the pain, the fog, the hurt. I do now know how to write about it in English, let alone in French. How do you explain that lifting your body out of bed is half the energy of the day gone, that working through simple work e-mails dig a hole deeper than I can recover from, that sitting in the garden unruly and dishevelled as it is is an achievement both physical and mental.
When you are there, for a few days, to be happy, how do you talk about it? When you are on the phone between putting the avocado on the windowsill and the milk in the fridge, how do you talk about it?
That's another thing that was not explained, the deep deep deep loneliness that grows and the impossibility of words.
I used to find words atop my saddle, meandering along English and Welsh lanes I used to know. I didn't so much find words as found space to let them bubble. I didn't even know they rose. They weren't in my head or in my fingertips. They jumbled and reorganised themselves and stilled my mind, my body, my soul into a kinder softer version of myself. I learned a lot on my bicycle.
When my grandpa died, I went to cycle through the Somerset levels and talked to him. My ankles deep in waterlogged lanes, I knew how to process this particular grief, this particular loss of a man who had never spoken to me much and yet to whom I keep realising how much I owe. He gave me my first laptop to let my words free, to open my world to the Internet, to find my own life.
I dried in small cafes, drinking hot chocolates and lingering a little too long in the warmth, picking at pastry crumbs.
Now I sit in the study. I lie in the study. I sit in the living room. I lie in the living room. I lie in the bedroom. I still stand in the kitchen because I am stubborn and when all of my day has been consumed with work, with making it through, with not falling, I need to know I am still of worth, can still do something for myself, for others.
I have become good as slap dashed meals haphazardly put together. I learned this on one stove and a pan in the fields of England and Wales when my energy was low in a life giving way, when my bicycle was caked in mud and sweat.
I wonder sometimes if I will ever cycle again. On rare occasions, I dare to hope. One time after cleaning my bicycle, I dashed in the streets. My heart jumped and pumped and my brain yelled at me to stop. I was being stupid, senseless, careless but for one glorious turn of the street, I allowed myself to not listen to my brain. Instead I listened to my body who sang of joy and home and belonging. I returned to the garden gate a little out breath, a beaming smile on my face, and a deep worrying tug in my stomach at the consequences of this one minute of cycling.
It's been months now. I have not paid too dearly then. I have paid for daring dos such as meeting friends since, such as walking into a shop. The bicycle has gathered a new coat of dust and I have sprouted more grief than I know what to do with.
