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.

 

More about Food

pearVarious people have been asking about the low-histamine diet. Unfortunately, there’s a lot of contradictory information on the web –  I’ve seen the same foods on a “do not eat” list on one site and a “totally ok” list on others; googling can send you quietly mad.  So I thought I’d share some info, based on my own reading and experience.

NB: This blog is not a substitute for professional medical services. Consult a competent professional on health matters.

What is histamine?
     Histamine has many useful functions in the body.  It is released from mast cells as part of a normal immune system response.  When someone has an allergy, e.g. to pollen, it is released in response to a normally harmless substance, causing unpleasant symptoms – hence ‘anti-histamine’ pills.  Histamine also occurs in foods to varying degrees.  Some foods are naturally high in histamine, such as tomatoes.  Others are high because of the way they have been produced.  Ageing, preserving, smoking, fermenting, pickling and processing all increase the histamine content of food, so for example blue cheese, smoked fish, sauerkraut, alcohol and tinned food are all high.  Some foods, additives and medications aren’t high in themselves, but are “histamine liberators” (encourage the body to release histamine) and some are “enzyme blockers” – i.e. reduce the body’s normal capacity to get rid of histamine.
In most people, histamine gets rapidly broken down by enzymes: DAO (histamine in the gut) and MAO-b and HNMT (intra-cellular histamine).  But people with low activity in these enzymes can end up with an imbalance – too much accumulated histamine, and not enough capacity for metabolising it.
Too much histamine can cause various symptoms including headaches, diarrhoea, asthma, runny nose and arrhythmia, plus a whole range of skin symptoms.  Often these symptoms are attributed to food allergies or intolerances which then prove frustratingly hard to manage.  The really interesting thing in my case was that reducing histamine levels reduced my sensitivity to an entirely separate and specific trigger – i.e. light.  I’ve also become less sensitive to other things that used to make me ill, such as dust and certain foods.

Low-histamine diet
Unlike most diets, this one has two elements:
1 What foods to eat – the best list I found is on the Swiss Community of Interest for Histamine Intolerance site
2 How food should be prepared and stored – the best guide to this aspect is a little book called “What HIT me? Living with histamine intolerance” by Genny Masterman.  It’s really worth investing in.  It contains lots of accessible scientific background; plus key tips for managing the diet, including “Learn to cook” and “Your fridge/freezer is your friend!”  Because yes… when you can’t open a tin of beans, snack on a packet of crisps or get a ready meal out of the freezer, you really do have to get cooking…!
I still have flashbacks to my early months on an extremely strict version of the diet.  They seemed to consist mostly of standing amid perpetual clouds of water vapour in the gloom of a blind-screened kitchen as I boiled frozen sweetcorn and steamed frozen fish.
But it’s all been worth it.  And as I’ve got better, I’ve been able to allow myself more leeway.  I eat chocolate now and again.  I’ve even experimented with low-histamine wine, available from a company in Austria called Eller Finest Selections.  (There seems to be much more awareness of histamine intolerance in Germany, Austria and Switzerland compared to the Anglosphere.)
The wine tasted pretty much like normal wine.  I went pink in the face, waved my arms about and started talking very fast about politics.  So one concludes that the effects are pretty normal too.

 

 

“It’s all psychological…”

pugl_green shutterA girl and her mother, talking on the radio, stop me in my tracks.
The girl had visual problems when she was eight years old, but specialists found nothing wrong.  They diagnosed her with “psychological blindness” and sent her home, devastated, confused, convinced she was a liar and a bad person.
They found the brain tumour eventually.  By the time it was removed, she had lost most of her sight.

My consultant never told me my condition was psychological, and my partner and close family, who knew me, and saw the evidence at first hand, never doubted the physical reality of the extreme photosensitivity that had devastated my life.  But in the space between the two, I was constantly bumping up against the “it’s all psychological” attitude.  People with minimal knowledge of my situation – beyond that it was rare, terrible and continuing – felt entirely entitled to pass this judgement, this casual invalidation of my whole experience.

Via the telephone that became my lifeline, I got to know other people with chronic conditions.  The same thing had happened to all of us.

What’s going on here? Two strands of thinking, tangled up – I’ll call them the ‘strong’ and the ‘weak’ hypothesis.  I had my purest experience of the former when a Reiki healer came to my house.  After asking whether, when I went into the light, I felt “exposed… lots of eyes looking at you”, and whether I might subconsciously believe that my relationship only kept going because I was ill, she announced “Ah well – there’s always a benefit, isn’t there, even if we can’t see it.” – i.e. my blacked-out room and agonising burning skin were manufactured by me to gain some obscure psychic payoff.

And the same applies to all illness, everywhere, according to hard-core New Age bibles (bowel problems manifest a fear of letting go of the old, back pain indicates guilt…).   I have even heard it said that a woman aged 59 whose cancer became inoperable could not face retirement with her unpleasant husband, and thus took this way out.

This position seems to me to be a turning away from the tragic reality of life.  We are psyches embodied in the material world, liable to be knocked about by genetic susceptibility, environmental exposure, or simple chance; loving, loved, contented people, bursting with plans for the future, are cut off, every day.  The theory is also absurdly narrowly focussed historically and geographically – I have not yet seen a metaphorical theorisation of the Ebola virus, or bubonic plague.  It seems a necessary adjunct to the New Age theory that you can get whatever you want in life, and that therefore whatever you get (such as a massively frustrating chronic illness) must in some way be what you wanted.

For me, the following gets closer to the human condition, whether you believe in God or not:
“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

So much for the ‘strong’ hypothesis.

The ‘weak’ hypothesis divides illnesses into two categories.  High blood pressure, heart disease, cancer etc. are ‘respectable’ diseases with an underlying physical cause.  However, unusual conditions that people have not come across before, and illnesses for which doctors do not have direct treatment, especially those that go on and on, boringly, for years, without either killing you or getting cured, are in contrast thoroughly disreputable and must therefore be psychological in origin.  “Can’t the doctors do anything about it?” a visitor asked me incredulously, as we sat together in my black room.  Ah, there speaks one of the blessed, whose faith in the capabilities of human knowledge is as yet unbattered by experience.  The sea of what we know is vast; the ocean of the unknown vaster.  We could all use some humility in the face of the as yet untreatable or unexplained, rather than reaching so quickly to close the door and bar it with a psychological explanation.  As research progresses, conditions push their way through the barrier – Gulf War Syndrome, for example, dismissed for years as psychosomatic, until finally a distinctive abnormality was found.

Such ‘explanations’ frequently support the vested interest of an establishment unwilling to change entrenched policies or compensate those harmed.  In a more intimate sphere, the associates of a chronically ill person – who is often demanding in terms of sympathy and care – gain the pleasure of superior insight, a justification for withdrawal, the spurious comfort that ‘this could not happen to me.’

 

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.