Sadly Not Unique


A black heart is a person living in the dark

Since Girl in the Dark was published, I’ve had letters and emails from people all over the world.

Some are from people leading normal lives, who simply love the book – thank you.

Some are from people who’ve experienced chronic illness, who relate to the frustration, isolation, wild joy at tiny improvements, utter devastation at relapses, absurdity and guilt.

Some come from people with other light sensitivity conditions, less absolute than my own.

A few are from people who are living in the dark.

These dark contacts give me the strangest mix of sensations: an overwhelming sense of kinship and fellow feeling, the primal comfort of not having been alone; a strong desire to stick two fingers up at those who said I must be imagining it, because such extreme sensitivity could not exist; deep tearing sadness that others are having to live in my particular intimate hell.

There are different ways in, and, let us hope, different ways out. I am so lucky I finally found mine.

Send a thought to the others, now and then, as you wander through the world.

 

The Pain of Incredulity

number-4I am on the phone, talking to one of my telephone friends (this one has fibromyalgia and an autoimmune disorder and she lives in South West London). She is describing how badly she is affected when aircraft fly low over the house; it is getting so bad she may have to move, with all the disruption that entails.

And I feel it starting.  Deep down in the centre of my brain: the embryonic stirring of a question mark, a tiny curl of doubt.

Aircraft? Really? Surely things can’t be that bad….  It’s a natural human reaction.  Then I remember my own experience. I am ashamed, and I immediately suppress the thought.

For so many years, my situation was so rare, extreme and unusual that when I described it to people, often in an attempt to seek help, the response was usually incredulity.  Somebody once said that three of the most powerful words in the language are “I believe you.”  Their implied opposite is no less powerful.  Repeated over and over again, the incredulity became a sort of psychic flaying, a periodic acid bath on top of the agonising burning of my skin.

I learnt all sorts of things during my years in the dark.  I learnt how to locate and identify clothes and talking books by touch; how to find ecstatic joy in being well enough to clean the loo; how to sift, from a day of crushing boredom, a tiny nugget that might make my husband laugh.

The biggest lesson of all has been the importance of listening – really listening – to what people are telling me; keeping my mind open, no matter how what they are saying differs from my own experience of life; resisting the temptation to pull up the shutters of scepticism and think “this cannot be”; remembering that we understand only one small part of this wonderful, terrible world.

I needed this so much.  And I’m just immeasurably, immeasurably grateful that the people closest to me gave it, absolutely, freely and without question.

I know many others are not so lucky.

Café, with People

20131122-25nforgladeWe pick a dull morning in November 2015 for my first go at a café. Pete and I drive to the New Forest, to a wildlife park set among tall trees.  We arrive early, at 12pm, so there won’t be many people about, and we choose a table out of the direct glare of the fluorescent lights.

Pete goes to the counter to order our food. I have a baked potato with salad, and peppermint tea.  (Some things, I find, don’t change – those small metal flip-top teapots STILL pour water all over the table whenever you fill your cup).

The place fills up, and I stare and stare as I eat. I’m fascinated by people’s faces and smiles, their different sizes and shapes, their gestures and clothes.  I eagerly listen in on conversations in person and on phones. I even spot my first hipster beard, a phenomenon that, up til now, I have only read about in magazines.  It’s a fine example, black, silky and luxuriant, worn beneath large-framed spectacles in cherry red.

For so long I’ve had real people only in controlled doses, people I know, in ones or twos, very rarely more, and in my house. New companions joined me in the dark, as I listened endlessly to talking books, and for several intense hours I would follow their trials and tribulations, look on at significant moments of their lives.  But these were phantasmal beings, formed from the ectoplasm of words, edited, pruned, consistent, their very idiosyncrasies designed to facilitate the plot.

Real people are wild and weird and wonderful. They are hairy and bulging and scrawny and toned.  They discuss obscure matters with ferocious intensity but a maddening lack of specifics.  I feast on them as I eat my potato – I’ve been starved too long.

I still need to be prudent about the light, so we don’t hang around. After 20 minutes we get up to go – and I have the exquisite pleasure of discovering that not only did I not have to cook this meal, but I can leave the remains on the table, for somebody else to clear up.

 

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!

It’s not an overnight cure – I’m still very far from normal – but a steady, sustained, continuing improvement, going 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.

 

 

Sticked