Girl in the Dark (22 page)

At first, every new thing is a delight. Each mundane task I add to my repertoire thrills me—no matter how tiny or trivial. “I cleaned the bathroom floor today,” I announce to Pete over dinner, glowing with happy pride. In the early stages of my climb back to the light, the contrast with my previous existence is so dazzling, the flame of hope rekindled so intense, that I bubble over with high spirits. I break into impromptu dances in the kitchen, seizing my startled lover and enforcing his participation. I sing random bits of songs, some generally known, others made up on the spur of the moment to suit the circumstances. My heart is filled with gratitude and relief—gratitude that I have been granted another chance; relief that my worst fear—the fear of permanence—has yet again been proved unfounded.

And then there is a change.

It is like setting out in a boat from a dark and hideous shore, and for the first part of the journey, you look only at the place that you have left, and watch the stretch of sea between the boat and the shore steadily grow bigger, and the land recede, and you rejoice.

And then you turn your head the other way. You face the direction of travel, and you realise that the other shore is so far away that you cannot see it, but can only believe that it is there, that all around you is a blank and lonely waste of water, and that storms and monsters lie ahead.

At a certain stage of recovery—a few weeks, say, after I have re-started my dusk walks—my spirits fail me.
No longer powered by joy at what I have left behind, I see with cold detachment how far I have to go. My long and lonely days trapped in the house drag horribly; I am sick of always having to solicit visits and never going visiting; I yearn to see the inside of someone else’s house—anyone’s—out of sheer curiosity. A few months ago I was in ecstasy because I could leaf through a mail order catalogue. Now I am discontented because I cannot GO SHOPPING, and try on the goddamn boots
before
I have to buy. I long to make faster progress, to push my boundaries in all directions. But I know I am playing with fire.

I studied history at university. My mutinous discontent recalls something I read there on the subject of revolutions. They do not happen, it was argued, when the oppressed class is being maximally ground down by misery, but, rather, when conditions improve. It is the slight relief of pressure which gives the downtrodden the chance to lift their heads out of the slime, to look about them, and become cognisant of the true circumstances of their lives.

I try hard to count my blessings, to remind myself of the small victories I have won against the darkness, to jump upon the embers of desire.

I continue to correspond with my consultant. He is helpful in providing medical reports and letters required from time to time by some tentacle of bureaucracy, but,
in terms of actual treatment, has nothing further to suggest. He would be delighted to see me if I could get to London for an appointment—but, frankly, if by my own efforts I got myself into a position where I was able to do that, I would be so delighted that I would probably carry on with whatever I had been trying, and use my new-found resilience to do something more interesting, instead.

So, like so many people who are chronically ill, I am released into the wild healthcare borderland, a trackless and confusing country, where what signposts there are point in multiple directions, sat navs fall silent, and strange beasts roam.

“Have you tried …?” people say to me. “And what about …?”

“Thank you for the thought,” I say. “I will put it on the list.”

Over the years I have tried so many things; an ABC is a more elegant method of summary than a tedious chronological account.

“Er—I’m afraid I won’t be able to take my clothes off. Would you still be prepared to treat me?”

One acupuncturist is willing to give it a go. She comes to the house and sticks needles in my hands, forearms, feet, ankles and, through my leggings, my lower legs, while explaining that, of course, this limited approach is sub-optimal. I persist for eight sessions, but there is no discernible effect.

“Breathing incorrectly is the root cause of a huge variety of chronic health conditions. Retrain your breathing using these revolutionary new techniques and join thousands of people worldwide who have recovered health and well-being through following the unique approach developed by Dr. Randall P. Whitebait …”

Aha! Breathing!

Now there is something a person can do in the dark. I accept my friend’s offer of a set of Breathing CDs and a workbook.

Some of the exercises make me feel pleasantly relaxed. Others put my back out. On the light sensitivity they have no discernible effect.

My friend Tom, advocate of the empowering qualities of the Web, does a lot of detailed health research online. He finds a community of people with a range of chronic conditions who have achieved major improvements in their health by reducing high levels of mercury in their bodies. A test can determine if mercury toxicity might be a problem—some people are genetically more able to get rid of it naturally than others.

According to the results, Tom and I both have a mercury problem. We start taking a sulphur compound which binds to the mercury (chelates it) and enables it to be peed out of the body.

I enjoy four months of amazing, cumulative, measurable improvement.

Then I have a horrible relapse. My total light sensitivity returns, and I am completely exhausted. It appears that chelation puts a strain on the adrenal glands, and mine are very weak.

I try chelating several more times, but the results are always the same: shaking, sweating, collapse.

Tom fares much better. He persists with chelation over four years, and becomes well enough to start another business—this time, doing computer modelling for eco-homes.

One New Year’s Eve, feeling rather fine, I eat eight chocolates one after the other on an empty stomach, while drinking champagne.

Next day, I start the New Year with a truly horrible relapse. I can’t even come out of the black to watch the New Year’s Day concert live from Vienna and dance to the “Blue Danube” waltz, which has become a tradition in our household.

Intrigued, I investigate the physiological effects of spikes in blood sugar, and discover the low GI diet (GI stands for glycaemic index, which is a measure of how fast a particular food is converted into glucose by the body). I give up alcohol, sugar and refined carbohydrates, and combine protein and carbs at each meal. It definitely helps.

A plummy voice on the answerphone:

“This is Venetia Winstanley speaking. I have been treating your hair in my machine for the last few days, and I am telephoning to establish whether there has been any improvement.”

What? What?! Who is this woman, and how has she got hold of my hair? And given I’ve been feeling pretty terrible for the last few days, whatever she is doing, I would like to ask her to stop.

Eventually the whole thing is untangled. Venetia Winstanley is some sort of distance energy healer, who once saved the life of a child of a friend of my mother’s. The friend persuaded my mother to send this character some of my hair, which she did several months ago, having snipped a few strands from the back of my head. A death in the healer’s family delayed further action until now; the hair had completely slipped my mind.

A blood test shows something in the way I process essential fatty acids is definitely out of whack. A nutritionist recommends a particular supplement, emulsified to make the EFAs easier to absorb. I improve steadily for four months.

Then the manufacturer stops making the supplement. Nothing else on the market has the same effect.

According to the blurb on my Grounding book, sickness, pain and inflammation are the result of being Electron Deficient, and can be helped by Nature’s own anti-inflammatory—the Earth itself!

Ideally, you ground yourself by walking about barefoot on grass or soil and by sleeping directly on the ground. If this is not feasible, you can purchase a grounding bedsheet—a cotton sheet incorporating a conductive mesh of metal wires, which is then attached by a thicker wire to a grounding rod stuck into the earth outside.

I think I must have had some sort of allergic reaction to lying on metal. After two nights, my skin is puffy, my heart is racing, and I have a horrible relapse.

“The skin all over your body is calm and cool,” intones the CD made for me by the hypnotherapist. “You continue to become even more deeply relaxed.”

I lie in the dark and listen to the smooth, soothing voice. My skin, unfortunately, does not.

I expend a lot of ink writing to private doctors who specialise in the holistic treatment of allergies and environmental sensitivities. I offer large sums of money to entice them into a home visit or a telephone consultation.
Most of them will not treat anyone who cannot attend their clinic.

I have a small trampoline, known as a rebounder. According to the accompanying book, rebounding is a superior form of exercise, which can have life-changing effects on a whole range of chronic conditions.

I look forward to my daily half-hour of jumping up and down. It does not cure me, but it certainly cheers me up.

Ask the body questions—and actually get answers!

Hold out your arm, and let the therapist try to push it down. Sometimes the arm is strong and sometimes it is weak, and from this, guidance and conclusions can be drawn.

For me, whose body has become an unfathomable mystery, this promise is incredibly, overwhelmingly seductive—and for the first few treatments, during which the therapist recommends certain supplements, I improve markedly. But eventually, I lose my faith. Things that, according to the muscle testing, should be good for my body provoke nasty reactions. And other things, which I know help, come up with negative results. It is hard to persist, once basic faith has gone.

I write down everything that I try and how I feel. I log it in my logbook, a page-per-day diary. I monitor the data in my logbook for trends, hungry for cause and effect. But there are so many variables—it is like playing multi-dimensional chess, an easy route to madness.

It seems strange to create an oasis of nothingness within a life that is already too full of nothing. What I crave is busyness, purpose and stimulation—but nonetheless I try meditating, having read about its possible benefits to health.

CDs that invite me to imagine myself in a beautiful garden or floating above sunlit clouds distress rather than soothe me. I do better with techniques that involve simply focusing on the breath, observing it as it flows in and out. Sometimes I try counting the breaths down from ten to one, but my mind often wanders, getting lost somewhere between seven and six, and I have to start over again.

There is no appreciable effect on the light sensitivity—but I find that this technique does calm me, bringing me back to the present moment when, prompted by some news item about breast cancer or stroke, I think too much about the future, panic about the risk-beset fragility of my existence, foresee a hundred painful ways that I could die.

On my low GI diet, I eat a lot of nuts.

As an anonymous Scotsman once said to the composer Sir Arnold Bax: “Try everything once, except for incest and folk-dancing.”

Indeed.

Sometimes people tell me that they are praying for me. I feel immensely moved and grateful. Although I cannot travel physically, it is encouraging to think that, in distant churches and cathedrals, I am nonetheless strangely present, at least in someone’s mind, and in their heart.

It is better to travel hopefully than to arrive and know that hope has gone. So long as there is a road ahead of me, so long as there are things on my list still left to try, I am cushioned against despair. Even as each episode proves fruitless, I have learned something, each time, by my own efforts, if only that another possibility can be eliminated, and I can now move on to the next.

I wonder what a committed scientific rationalist would do, were he to find himself in my predicament. Here, there are no randomised controlled trials, and science itself is silent.

I would like to be researched. The one thing that surprises me is that no one has wanted to take a biopsy of my skin. Where is their scientific curiosity? I am sure the results would be interesting.

After my third session, I tell the spiritual healer that I am very grateful for all her efforts, but I am not feeling any positive effects, and therefore do not think it is worth carrying on.

She gazes into my eyes. “I sense that you have some deep psychological wound,” she says, “which is causing you subconsciously to resist the healing energy, and you will not get better until you have worked through your deep emotional trauma.”