There are gaps in the mesh of the everyday world, and sometimes they open up and you fall through them into somewhere else. Somewhere Else runs at a different pace to the here and now, where everyone else carries on. Somewhere Else is where ghosts live, concealed from view and only glimpsed by people in the real world. Somewhere Else exists at a delay, so that you can’t quite keep pace. Perhaps I was already teetering on the brink of Somewhere Else anyway; but now I fell through, as simply and discreetly as dust sifting between the floorboards. I was surprised to find that I felt at home there. Winter had begun.

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Wintering, Katherine May

 

Wintering is a text that has helped me through the last few years, it gave me comfort when I started to despair at my life. This paragraph so perfectly describes how time seems to change when you’re ill, how the daily rhythms of life begin to disappear,  when you’re up at 4 am every day from prednisone and sleeping all weekend, when the meteorological calendar fades and time is no longer measured by holidays and events but by flares and remissions, doctors appointments, months since symptoms appeared or vanished. Time compresses itself, all the normal markers are worn down, and you begin to live in a sort of stasis, everyone else's life continues but you stay in the same place, and that place is most often bed.

Recently I was brushing my hair and became overwhelmed with confusion at how a quarter of it seemed to have been chopped off at chin length, how had it suddenly become significantly shorter than the rest? It came to me later that day what had happened: a quarter of my hair had fallen out when I was ill. In the two and a half years since then, it had grown back, but like so many markers of time it had been invisible to me until the change had been so significant it couldn’t be ignored. There was something very powerful to me about this, that I carried on me a physical marker of the time since I had become ill, that I could point to the end of a strand of hair and say “There, there’s when my life fell apart”. I also pondered how that strand was ringed like a tree, documenting every medication I had taken in the last two years, all the diagnoses, the wrong turns, the meds that worked and those that didn’t. That my body still contains them all.

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With health comes a form of amnesia, when you move from the kingdom of the unwell to somewhere closer to health, time begins to speed up, and the distance between the sick you and the healthy one becomes a divide you cannot cross. I keep on thinking where have I been, what have I been doing for the last two years? It doesn’t feel real, it feels like a dream, a dream that I was sick. A dream that I couldn’t walk at times, that I couldn’t leave the house. Now I feel this great amount of space in my head, space which used to be taken up with worry about pain and discomfort, about whether something was normal or not. When you’re sick the future doesn’t occupy you in the same way, the worries about what will happen tomorrow or in a year become unimportant, how you will feel in an hour or in a minute becomes your only concern. Being in pain ties you down to the present in a form of mindfulness you would never wish to achieve. 

 

"Sickness is the thing which puts all the rest out of the count."

Bleak House, Charles Dickens

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When the pain recedes that sense of presence doesn’t stay, the future rushes in and the past becomes muffled. All the daily anxieties which occupied you before you were sick return and set up house: “Why is my flat so messy?”, “Why are my thighs this shape?”. Nature abhors a vacuum and the truth is, when a flare recedes it is so much easier to go back to all the things that made you sick. I woke up one day recently feeling terrible, so tired I couldn’t move, and I immediately thought “What’s wrong with you, why are you being so lazy?”. It wasn’t until I had struggled to clean the flat all morning that I realised,  I’m sick, the day before I took a strong medication, so strong I can only take it weekly, I’ve got nothing in the tank, I’m still ill. My mind had just blocked my illness out, forgotten I was sick and decided to berate me instead. It had switched back to the defacto mode I talked to myself in. Now all my medications are working I don’t think of myself as sick, and so when my body disobeys I blame my mind, it’s far easier to have a dialogue there than with my nonverbal body, which speaks only in rashes and pains.

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Elizabeth Loftus, a psychologist who works on the fallibility of memory has said: "Memory is not a steadfast recorder of the past; it is a flexible and sometimes fragile construct. In our efforts to protect ourselves from the pain of traumatic experiences, we may unintentionally forget, modify, or even create memories that differ from the objective reality." It’s strange to catch yourself in the act of forgetting. My memories are already moth-eaten, my early childhood is full of holes, and it has taken a lot of sessions with a therapist to realise that when things become stressful I turn the recorder off, everything traumatic goes off-record, becomes uncontactable, subsumed by the present. It’s the way I’ve been able to get through difficult things but it has also meant that I often keep making the same mistakes, I don’t learn my lessons. I snuggle back into the familiar, even if the familiar is dangerous.

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I often wrestle with the ever-present “illness as teacher” narrative, my thought goes “Yes, I’m happy to think that but I would glare at anyone who suggested it to me”. So I’m hesitant to say the truth that I have learnt a lot from being ill. But I know that if I let the last two years float into some locked realm in the back of my head I will be back here again. So I know I need to keep looking back, keep raking it over and not let my gaze glide over the uncomfortable truth that I have been through something deeply unpleasant, I have spent years in pain, it wasn’t nothing. So from now on, with Moon Face, I’m not writing to the present me any more, I’m not trying to explain things to myself, I’m trying to leave breadcrumbs for a future me, to remind myself of how I got through this.

 

"In the depth of winter, I finally learned that within me there lay an invincible summer."

Return to Tipasa, Albert Camus