All In Your Head by Marcus Sedgwick

Author:Marcus Sedgwick [Sedgwick, Marcus]
Language: eng
Format: epub
Publisher: Bennion Kearny
Published: 2022-06-21T00:00:00+00:00

12 – Snowflakes in the Desert

‘Have you come to write about us?’ asked Susie, a little suspiciously. If she was suspicious, she had good reason to be. She, like all the other sufferers of MCS, both in Snowflake, and elsewhere, have had enough of being doubted. Or disbelieved, or even just plain laughed at. And all these things are common.

‘The crazies in the desert; that’s how people like to see us,’ she explained as she drove me from the airport. ‘Gullible little snowflakes.’

‘No,’ I said, ‘I haven’t come to write about you. I just want to see if you can help me understand what’s going on.’

That was true. I was still absolutely determined not to write about illness. Similarly, I’d always had a thing about writers writing novels about writers; a lot of writers do it, and it always seemed so self-indulgent to me. “Write what you know”, they say. It’s one of the aphorisms about writing I can’t stand. You should write what you don’t know; that’s (mostly) my view. Write what you want to explore, what you want to find out, what you want to stumble across. Why would I want to write something I already know any more than anyone would want to read something they already know? It can work sometimes, yes, if either of the parties are after a sense of familiarity, or to act as witness. But mostly, as I writer, I have just been trying to go to places that are new for me. So I had always put off writing about a writer – for years – until I’d finally given in, and done it. Now I was determined not to write about being ill – it seemed even more personally self-indulgent than writing about a writer.

‘No,’ I assured Susie, ‘I just figured you guys might have some answers for me.’

Susie was the unofficial spokesperson for the group; she handled a lot of media enquiries, and the tricky thing for her was knowing which ones were going to help, and which ones weren’t. It wasn’t just a question of shutting up shop and saying no to everyone, because she knows that if they are ever going to get their illness taken seriously, they need publicity. They just need the kind that knows that there is something genuinely wrong with them, and not the kind that just points and laughs at the ‘crazies in the desert.’

She told me about some of the people who’d come in the past: TV crews, journalists. A British novelist who’d come with a photographer, who’d seemed to understand but had then written a somewhat sneery piece for The Guardian. I could see these things had hurt Susie, personally, and I didn’t want to hurt her.

‘We’ll take you around, have you meet with a few folks. You might wanna talk to Harry; he’s got problems with his legs, like you. Chronic Lyme and Bartonella, that’s his trouble.’

I liked her immediately. She was tiny, smart, and funny. She had a

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