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.

“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.

 

Getting Better: The Science Part (1)

Here’s hstairs_santorin_portow the miracle happened. It’s such a totally cool miracle, it’s got scientific references…(see end of post)
1. J, wife of friend and newly trained nutritional therapist, persuades sceptical, grumpy Anna (who is pretty ill at this point) to write out a detailed medical history, describe all the treatments she’s tried, muster the results of all the tests she’s paid for over the years, list all the pills she’s taking, and keep a food diary.
2. Anna does all this, thinking: “Well, you can have a go, my dear, but I’ll eat my hat if you get anywhere.”
3. J reviews case and researches in medical and scientific journals. Comes up with hypothesis: massive build-up of histamine plus rampant histamine intolerance. She sends Anna some interesting papers including:Joneja and Carmona-Silva, Outcome of a Histamine-restricted Diet Based on Chart Audit, Journal of Nutritional and Environmental Medicine (2001) ll, 249-262. (People with various skin conditions whose symptoms had resisted previous treatment improved on low histamine-diet).

Oksarharju et al, Probiotic Lactobacillus rhamnosus downregulates FCERS and HRH4 expression in human mast cells, World Journal of Gastroenterology 2011, Feb 14; 17(6); 750-759. (Certain probiotic bacteria might diminish mast cell allergy-related activation.)

Histamine potential of foods and additives, Schweitzerische Interessengemeinschaft Histamin-Intoleranz (SIGHI),http://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

4. Anna, who’s already noticed that foods like sauerkraut and smoked salmon make her worse, goes on a strict low histamine diet, avoiding aged, preserved, canned and processed foods, plus specific foods like tomatoes which are naturally high in histamine and/or provoke the release of histamine by the body.Light sensitivity improves slightly.
5.Anna swaps standard probiotic for probiotics which actively increase DAO – histamine-reducing enzyme – in the gut(1)(2). Starts with Lactobacillus rhamnosus – light sensitivity improves. Adds in Bifidobacterium infantis – light sensitivity improves more.  Adds in Lactobacillus salivarius – light sensitivity improves further (probiotic powders from http://www.metabolics.com).
6.Essential Fatty Acid blood test shows deficiency in delta-6-desaturase(3), the enzyme needed to convert linoleic acid to gamma-linoleic acid (GLA). Anna takes borage oil which supplements GLA directly. Skin improves more.
7.DNA profile shows gene mutations(4)  suggesting Anna has problems making a compound called SAMe (5) (part of the methylation cycle), necessary to degrade intracellular histamine(6). Anna eats more choline-rich foods(7) , takes hydroxy B12(8)  and phosphatidyl choline supplements which all support SAMe production(9).  Light sensitivity improves further.
8.Second, more comprehensive DNA profile (from https://www.23andme.com) shows mutations on yet more genes involved in extracellular histamine degradation(10), confirming importance of assisting key parts of the methylation cycle to compensate. Anna also has mutations (on MAO A genes) that may interfere with degradation of biogenic amines, histamine being one of these. Anna starts B2 supplements to support MAO mutations.Light sensitivity improves further.

In June 2016, Anna, wearing a large hat and under a tree, sits in the garden on a sunny afternoon, FOR THE FIRST TIME IN TEN YEARS.


References

  1. Kukkonen K, Savilahti E, Haahtela T, Juntunen-Backman K, Korpela R, Poussa T,Tuure T, Kuitunen M (2007) Probiotics and prebiotic galacto-oligosaccharides in the prevention of allergic diseases: a randomised double-blind placebo-controlled trial. Journal of Allergy and Clinical Immunology 119:192-8
  2. Mizuguchi D, Das H, Matsushita AK, Maeyama C, Umehara K, Ohtoshi T, Kojima J, Nishida K,Takahashi K,Fukui, H (2008). Suppression of histamine signaling by probiotic Lac-B: a possiblemechanism of its anti-allergic effect. Journal of Pharmacological Sciences, 107:159-166.
  3. Tollesson A, Frithz A, Berg A, Karlman G (1993) Essential fatty acids in infantile seborrheic dermatitis. Journal of the American Academy of Dermatology, 28: 957-961.
  4. Preuss CV, Wood TC, Szumlanski CL, Raftogianis RB, Otterness DM, Girard B, Scott MC,Weinshilboum RM (1998) Human histamine n-methyltransferase pharmacogenetics: common genetic polymorphisms that alter activity. Molecular Pharmacology, 53:708-17.
  5. Barbosa PR, Stabler SP, Machado ALK, Braga RC, Hirata RDC, Hirata MH, Sampaio-Neto LF, Allen RH, Guerra-Shinohara EM (2007) Association between decreased vitamin levels and MTHFR, MTR and MTRR gene polymorphisms as determinants for elevated total homocysteine concentrations in pregnant women. European Journal of Clinical Nutrition, 62:1010–1021.
  6. Lewis CA (2015) Enteroimmunology: a guide to the prevention and treatment of chronic inflammatory disease. Carrabelle, Florida: Psy Press.
  7. McGuire M, Beerman KA (2015) 3rd Edn. Nutritional sciences:from fundamentals to food. Belmont, California: Wadsworth, Cengage Learning.
  8. Bolander-Gouaille C (2002) 2nd Edn. Focus on homocysteine and the vitamins involved in its metabolism: France:Springer.
  9. Zeisel SH (2006) Choline: Critical role during fetal development and dietary requirements in adults. Annual Review of Nutrition, 26: 229-250.
  10. Mitchell ES, Conus N, Kaput J (2014) B vitamin polymorphisms and behavior: Evidence of associations with neurodevelopment, depression, schizophrenia, bipolar disorder and cognitive decline. Neuroscience & Biobehavioral Reviews, 47: 307–320.

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