Before the darkness (my very rare type of allergy), I had a very normal life. I lived in Lagos, worked in an IT firm, and had finally managed to buy a flat in an un-posh part of Yaba. I enjoyed my office’s location – a short walk from the Co-Creation hub at Yaba, handy for movie theatres, restaurants, and shops. I also loved the rooftop and had met a nice man, Emeka, on holiday.
It all started nine months ago, whenever I used my computer screen, my face began to burn. I refused, at first, to accept what was happening, could not believe that I might lose my job, the job I’d worked so hard at, which paid for all the structures of my life. But soon my face reacted to fluorescent lights as well, and then, after a midsummer week away, to the sun itself.
I couldn’t carry on. I moved to Lekki to live with Emeka and wondered what else I could do. In the end, I studied to be a piano teacher, because I would control my own environment, and no screens were involved. After a series of medical referrals, I ended up in a photobiology clinic, where various things were prescribed.
My face improved, but something strange began happening to the rest of me: a weird burning sensation, all over my body, but with no visible sign. Again, I didn’t see the connection. I tried to track what I’d eaten, or what I’d put on my skin.
The revelation came one evening in early summer, as the low, fierce sun thrust through a north-facing window, and I felt my bare feet ignite.
Over the weeks that followed, the light sensitivity grew more and more severe. I tried so many things: UV film on the windows, special clothing, layers. Through them all, through drawn curtains, I still burned.
I missed my follow-up appointment at the Military hospital: I could no longer leave the house. Through friends searching online, I heard of two other people with my type of allergy. Both, for their skin to find relief, had blacked out a room. I couldn’t wait to do it too, though as I sealed the last gaps around the spare-room window, I was holding back my tears.
So my dark life began. Music stirred too many emotions, so I became addicted to talking books, listening to authors I would never have tried before. I talked to people on the landline phone, including friends I had never met, but had got to know through the strange club of the chronically ill.
I had visitors occasionally, but they needed to be the right kind, not so shocked by the situation that they became distressing companions. Emeka was very caring; he made me smile through the darkness and held me when I cried with despair.
Then, one day, on one of my brief trips out of the (dark) black, I sat drinking my tea in the gloomy, curtained living-room, and my skin – for a while – held its fire. Slowly I was able to spend more time downstairs, draw back a curtain, venture outside at night, avoiding streetlights and cars.
Then I started to go out before darkness fell completely, seeing colours and patterns with incredible intensity, becoming a connoisseur of dusks and dawns. I still had to return for spells in my darkroom, several times each day. And I would often miscalculate my next move, get overexposed, and end up back in the black full-time, to start all over again the painstaking climb towards the light.
Over the last few roller-coaster years, the best I’ve achieved is to go out about an hour before sunset and stay out for about the same time after dawn. I’ve never stopped searching for something that will help. I’ve tried supplements discovered online, coaxed alternative therapists into home visits, consulted private doctors on the phone.
With such an extreme and rare form of light sensitivity, we’re all experimenting: results are mixed. I worry most about Emeka – whether he will tire of our shadowy existence (my allergy), and find himself a sunshine girl. But in my darkest days I try to remember that I have had better ones, and each time I return to the world of light, it overwhelms me with its beauty.
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Photosensitivity is an extreme allergy to ultraviolet (UV) rays from the sun and other light sources. Most people are at risk of developing sunburn during long exposure to sunlight.
Exposure to UV rays from the sun can also lead to skin damage and skin cancer. People who are photosensitive may develop skin rashes or burns, even after limited exposure to the sun.
There are over three dozen diseases, two dozen drugs, a variety of herbal preparations, and several perfume and cosmetic components that can cause photosensitivity. There are also several different types of reaction to sunlight—phototoxicity, photoallergy, and polymorphous light eruption. In addition, prolonged exposure to sunlight, even in normal skin, leads to skin aging and cancer.