Disciple

I’ve become allergic to sunlight. Even the indirect kind. The dance of light and shadow I’ve watched from my daybed for the last thirteen years has become a source of deepening illness.

When sunlight hits my eyes, even through a thin curtain, fire spreads through my brain. A weird, burning chemical smell fills my nose. Nausea rises. My heart races. My body folds in on itself, collapsing. Sounds, movement and every flicker of light become swords, each one plunging in, making me sicker.

Thanks for reading Lanterns in the Dark! Subscribe for free to receive new posts and support my work.

It takes hours of total darkness and stillness for the storm to settle. Then I remain enclosed in my room, blackout blinds and curtains never dark enough. I wear an eye mask. I eat, drink, and exist in near-total darkness for days, sometimes a week, until the hypersensitivity eases.

So while autumn is falling in gold and bronze outside, I can’t watch it unless the sky is dark and brooding. This is my life right now: hiding from the light. Which is strange, because so much of who I thought I was has been built around seeking it.

Yet another kind of light has entered my life: my boyfriend Hal. He’s a musician, an artist, a writer. But right now, he’s obsessed with Islamic geometry. Most times I call, he’s there at his dining room table, compass in hand, another intricate, perfect pattern drawn on exquisite paper. His head down. I look at his ruffled blond hair, wild and sticking up in every direction, his crumpled t-shirt ~ all of it in total contrast to the strict, uniform precision of the lines and angles unfolding beneath.

This man drips purpose and direction. He is here to create.

I long to be like him. To feel utterly certain of why I’m here. Of what I should be doing and to feel the aligned joy of it, the belonging.

But I don’t.

I’ve never known.

I’ve just roamed, endlessly seeking my place.

Childhood trauma knocked out my access to the kind of creativity that Hal has, replacing it with fear and worry. It left me rudderless, not knowing myself, or what would make me happy. Trauma does that, I think. It disconnects us from ourselves. But creativity ~ I have a feeling, thats what keeps us close.

And now at 45 years old, I am trapped in a body that can’t do much of anything. I can’t reach out into the world to make, to achieve, to become. I can’t bring in happiness from doing.

When I started this Substack, something in me stirred. An excitement. It felt right in a way I hadn’t felt before. I ordered a stack of books on writing, and they sit in the corner of my room.

I’m too sick to read them.

It’s taken me a lifetime to find this fledgling creative flame ~ and it feels like life keeps smothering me with a fire blanket.

I want to wake up feeling that my life has purpose. But how does someone with severe chronic illness, shielded from the world and its light, ever find it?

I have nausea bubbling up now. Everything I look at has jagged edges, scraping at my insides. As I came downstairs this morning, a rogue shard of brilliant white hit my left eye. It shouldn’t have been there. The sun should have passed that window. I need to get back to the dark before this crash builds. And yet I need to be writing because something within me is dying to express itself, to be part of something bigger than this little world.

So I will keep dropping these words down, even though each glance at the screen is making me sicker.

Seeing was all my body could reliably do. It was my last unencumbered portal to simple pleasure. I would watch my mother’s garden, clouds billowing past, and imagine myself leaping into the bodies of birds as they fly, feeling their freedom stretch across the sky. This window has been a wall of my prison cell, but looking through it everyday was how I prayed. Now it’s mostly closed.

And my argument with it has to fade, or my suffering will not.

Before Chronic Fatigue Syndrome took hold in 2013, I went caving in Derbyshire’s Giant’s Hole ~ a worm dressed in a boiler suit and wellies. I wiggled fully prone through a limestone passage, propelled by the tip of my toes. The rock so vice-like my head forced sideways. I had to feel my way with my fingertips, trust the ones who’d mapped this place before me.

Abseiling into the lower cave system at Giant’s Hole (2012)

I was alone in earth’s darkness by choice. Now I’m forced into a different kind of darkness ~ not underground but inward. The vast darkness I find behind my eye mask when I lie here for days.

So I go deep into the black. Not to sleep, not to unconsciousness, but into an inner space. Like a newborn baby, I feel into the unknown. I don’t know what I am or where I am.

I reach out, trying to find the edges of my awareness, not with my hands, but with something deeper, I find there are none. I’m just this wide open expanse in all directions. I don’t know where I start and where I end.

This space isn’t dead. It’s filled with sensation. Pulsing with energy. There is discomfort, but the space around it is so vast now that it becomes just one small thing among many~ a tree in an endless landscape.

I start to forget this sick body called Emma.

I’ve stepped from one world into another, calm and peace have almost instantaneously replaced fear and longing. My jaw unclenches. My breath slows. I feel a sense of vitality start to vibrate my core. There’s a fullness, a subtle joy here that asks for nothing. I realise I couldn’t add anything to make this feel more complete.

But I can’t stay here. Sooner or later, a thought will rise ~ loud enough, fearful enough ~ and I’ll follow it, slipping from the cocoon of contentment, back into suffering: the longing for the sun behind the curtain, and the fear that I may be losing it forever.

I straddle these two worlds like a ping pong ball, bouncing between them, always wondering: if I never get well, will lying here, exploring this other state of consciousness, be enough?

I hesitate to say yes. I don’t want to permanently jinx myself out of the world of sunsets and achievements. Of creativity and expression. Of love and friendship, adventures and community.

And yet I feel it ~ this quiet unfolding, this vital space of contentment and subtle joy. It isn’t somewhere I’m visiting. I’m not going anywhere. All distractions, all sensory input are stripped away; the obstacles to living from this space dissolve, revealing how to inhabit it more fully.

As I lie here in this exile, I can feel a cigarette paper’s width opening between who I think I am, and who I’m directly experiencing myself to be.

Old narratives ~ of weakness, of lack, of neediness and dependency ~ are questioned. If I am this open awareness, then nothing is missing. I am whole. Undamageable. Wholly loveable.

It seems I am not a jumble of thoughts and images, memories and fears. The most real, unchanging thing about me is this quiet sense that I am here. This simple experience of I am. Not I am Emma, but I am this alive space.

Beliefs about purpose tremble. Because I am fulfilled here. The simple act of being alive to experience this moment feels, somehow, like purpose enough. Not doing. Not striving. Not seeking. Just being.

My body is sick. I am both falling apart and cannot be broken. I am losing everything and discovering I never needed it anyway. The deeper I go the more paradoxical it becomes.

What an invitation illness becomes then ~ this time, this exile, this vast space to explore. Few in this mind-addled world of distraction and escape ever get that chance.

So yes. If this is all I ever get, I’ll be okay, I’m an explorer after all.

Except I’m not okay. I’m sad and yet content. I want my life back and I want to dissolve into this peace. I want the sun and I want the darkness. I want Hal’s compass and I want this directionless belonging.

The one called Emma still wants. But illness has made a disciple out of me. Not a wholly peaceful one, but a disciple nonetheless.

Thanks for reading Lanterns in the Dark! Subscribe for free to receive new posts and support my work.