In spring 2005, Anna Lyndsey started to notice the skin on her face burning as she sat in front of her computer. “Burns like the worst kind of sunburn. Burns like someone is holding a flame-thrower to my head.” Fearing she was becoming allergic to the light from the computer screen, and desperate not to lose her job as a senior civil servant, she rigged up a fan on her desk; it didn’t help. Eventually she took sick leave, and went on holiday to try to de-stress and recover. But things only got worse: on a boat near the remote Farne Islands, miles from any computer, her face started to burn again. She came to the devastating conclusion that she had developed a severe allergy to sunlight.
Little did Lyndsey realise how much worse things would get. The condition spread from her face to her whole body. Within a year she was confined to her blacked-out bedroom, trussed up in light-proof clothing and completely isolated from the outside world. She became, quite literally, a creature of the shadows. And nearly nine years later, so she remains.
Girl in the Dark is a memoir (written under a pen name) of those nine years. Jean-Dominique Bauby – who becomes a hero of Lyndsey’s – wove a poetic narrative out of his experience of being “locked in” to his paralysed body after a stroke. Lyndsey is still capable of speech and movement, but she is, in her own way, as trapped. She wonders, at one point, who is worse off – “whether to gain, as it were, the benefits of lights, I would trade the movement of my body”.
The only redeeming feature of her situation is her boyfriend, and later husband, Pete, who despite everything sticks around. Their relationship is sketched with humour and affection, never lapsing into sentimentality. With a cheery “wotcher, chuck?” and a solid refusal to despair, Pete brings some light, albeit only of the emotional kind, into her life. Lyndsey is affectingly honest, too, about her guilt at “creating two shadow lives, where there need only be one”. She feels she should leave him, but is incapable of doing so unless he asks her to go – and thus far, he has not. “That is the miracle that I live with, every day,” she writes.
It’s a grimly fascinating situation, and Lyndsey’s writing, while never as lyrical as Bauby’s, is more than competent. And yet there is such an elephant in the room that it is impossible to take Girl in the Dark at face value. For Lyndsey has not suffered an obvious physical trauma, as Bauby did. She tests negative to the conditions – lupus and porphyria – that are known to cause photosensitivity. Though she experiences devastating pain, there are no outward symptoms of her illness at all. She burns, as she says, with “invisible fire”.
The obvious question is whether any element of her condition could be psychosomatic. This is not to minimise her suffering, or to deny that there might be a physical element to it; it is simply to be open-minded as to its source. Rather than exploring this possibility, Lyndsey bristles at the mere suggestion. When a reiki healer suggests there may be a “deep reason” why she hasn’t recovered, Lyndsey wants to “smash the woman in the face”. She rails against any suggestion that her illness is a “metaphor”, insisting again and again that it is “rational” and a “physical reality”. She shuts down any line of narrative that might lead her back to her past. (“We had a happy childhood … with no tensions evident between our parents until my father fell in love with someone else.” Full stop.)
A determination to stamp out any psychological explanation seems, in fact, to be one of her motivations for writing the book. She understandably feels abandoned by medical professionals, who have effectively given up on her, refusing to do home visits and insisting that she make an impossible trip to London from Hampshire for an appointment. I detected in their attitude – as does Lyndsey – scepticism about how “real” her illness is. So why, I wonder, are none of them honest with her about this? If they suspect the condition is psychosomatic, do they not have a responsibility to offer psychological help and support?
But modern medicine, which is just as obsessed as Lyndsey with policing the border between physical (“real”) and psychological (“imagined”) illness, doesn’t work that way. If only Lyndsey had picked that battle, I would have backed her all the way.
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