Clothes and Legs

Each morning in my blacked-out room, I’d put on my uniform layers: socks, leggings, long-sleeved top, lined velvet jacket, long full skirt. If I was well enough to go for walks at dawn and dusk, I’d add, before I went outside, a long coat, hat, and calf-length boots – summer and winter alike.

But now – I’ve been digging in the backs of cupboards and investigating sacks in the loft.  It’s the strangest feeling, as I slip my arms into a short black jacket, and my bare feet into flat pink shoes – as though I’d found my old pre-darkness self in the wardrobe, slightly rumpled, and put her on.

A few months ago I saw my face in the bathroom mirror.  Not half-glimpsed in the gloom, or in the deceptive half-light of closed venetian blinds – but in the full glare of the glorious sun streaming in through the window to the side.

I stop, transfixed.  Do I dare to look properly?  My heart begins to pound.  Slowly I walk towards the mirror, and my new friend does the same.  I don’t know what I am expecting.  I fear something grotesque – the mark of the beast, some hideous imprint of the darkness and the burning.  I hope, perhaps, for something beautiful; the enchanted princess ten years in her tower, untouched by time.

My skin is pale, the tone not even.  My hair is dark flat brown, devoid of highlights from the sun.  A little way in from the forehead there is a silver streak; it could be considered distinguished.  My spectacles look knackered – I’ve had the same ones for fourteen years.  My eyebrows have gone wild – but this can be corrected.

But this is me.  I made it.  I didn’t vanish in the darkness.  I’m still here.

In May I have further proof.  I take off the leggings under my skirt.  Sit in the living room and look at my bare legs.  Stretch them out in front of me.  Turn them from side to side.  Hazily recall the necessity of shaving them, if we are to go out together in public.

Legs out only for half an hour at first, but gradually I build up.  Bliss, on summer evenings, going for a walk with bare legs under my skirt.

Flesh!  Mine!

Back to the light

I was pretty normal until my early thirties. Then my skin gradually became excruciatingly sensitive to light.  The condition grew so extreme that I had to spend most of my time in a totally blacked-out room.

Over the years I’ve tried everything to get out of the dark: acupuncture, meditation, hypnotherapy; spiritual healing, strange diets, internet pills; private doctors who could be persuaded to offer a telephone consultation or paid to come to the house.  Sometimes I did manage periods of improvement when I went for walks, Dracula-fashion, at dawn and dusk.  But these patches of hope were fragile and never sustained.  Lying in the dark with my skin on fire I often planned my suicide.

I survived because of the love of my partner and my family.  Because of talking books – I’ve listened to hundreds – that took me to different worlds.  Because of unexpected telephone friendships with other people living with chronic illness.  And because at my absolute lowest ebb, desperate to find something to do in the dark, I started to write about my experience [Girl in the Dark, published by Bloomsbury 2015]. [In USA, published by Penguin Random House]

Then something amazing happened.

The wife of a friend trained as a nutritional therapist.

She persuaded me to be her client number 2.

She looked at my whole case from first principles.

And she found the answer!  Or as I know now – in 2020 – the first part of the answer. I got well enough, thanks to her recommendations, finally, to track down a specialist in Mast Cell Activation Syndrome (MCAS) – and it turns out this is what I have.  MCAS was only identified in 2007, and recognised in the International Classification of Diseases in 2017 – so I managed, like so many other people with MCAS who’ve spent decades going from doctor to doctor trying to find out what is wrong, to get a disease before it officially existed.

I’m still very far from normal and I still have ups and downs – but my underlying improvement has gone far beyond anything I’d dared to hope.

I’m coming back to light, to life and to the world, after so long alone in the dark.  Each new step is intense and surprising and crazy and beautiful.  That’s what I want to share in this blog.

 

Useful Links

People with various degrees of light sensitivity find their way to this site from all over the world. Here are some links which may be useful, in response to the many questions they have asked.

https://lightaware.org/ We need to talk about light! A growing number of people worldwide experience severe and painful reactions to new forms of lighting like CFLs and LEDs. This charity aims to raise awareness and combat social exclusion.

https://www.lupusuk.org.uk/eclipse/ The Eclipse group is part of Lupus UK, but helps people with severe light sensitivity whatever the underlying cause. They provide an excellent product list.

Thick black wool felt is the most light-protective material. I got mine from www.anglotechnicaltextiles.co.uk. Ask for a sample first – it smells a bit.

This scientific paper describes a case in Sweden, which began with a burning face when using a computer and progressed to full-blown extreme cutaneous light sensitivity all over, even through clothing. Olle Johansson Doc

Sticked