Marie does a great breakfast and we get into conversation about her family. Turns out her son has a very rare disorder which means he has suffered from chronic fatigue, has missed loads of school, it sounds pretty bad, as well as other bizarre symptoms: hyperflexibility, doughy, soft, stretchy skin.
What has prompted this is a flyer for our show – the family were online last night having a look to see if I really am the sister of the murdered journalist, Kate Peyton. Marie talks about the effects of the murder, the effects of the show, her own mother's death, our landlady in Bolton whose husband had died only a few weeks before we stayed with her, how life is not easy.
First the tripod and now this excellent conversation: s'gonna be a good day, me thinks. Although she has lots of cleaning to do to get ready for the next guests, she says not to worry about rushing off. So we don't. I have to buy us some new tickets to Manchester for next week – the really exciting news is that I have an audition for what looks to be a fascinating one-woman show for the Edinburgh Fringe this year. The company concerned have kindly fitted me in at the beginning of their day so that I can get off in time to tech for the Bury show. Little did I know that the day was about to... veer off in an entirely unexpected way, a vital digression.
We take our time leaving and, as I put stuff in the car, Marie says she's ready to clean our room now. Martin asks if her son is coming to the show – she'd told us he wanted to. Marie is not sure and we talk about the effects of his condition on what he can and can't do any given day. I talk about Martin's arthritis, which I often do, and make him show her his hands – they are so expressive, changed as they are by his arthritis – of his illness. She mentions the EDS, the disease from which her 17-year-old son suffers and which was only diagnosed last year, by chance, when he dislocated his knee.
And suddenly my mind is racing. Martin's skin, Martin's skin, Martin's skin! His skin has always felt odd to me, softer than other people, cushiony. It feels intrusive, but I say “Let Marie feel your skin,” as I pull back his sleeve. She touches it, she pulls it away from the bone, their eyes meet: we all know. 17 years on from his original diagnosis of polyarthritis, which has never made sense to Martin, so many problems, procedures and resuscitations later, all three of us know that Martin is one in 20,000: he has EDS as well.
They start talking about digestive problems, exhaustion, his heart valve, he shows her his stretch marks, he talks about putting both his feet behind his head whilst watching telly as a kid, he does that thing with his fingers where he bends them every which-way, and for once I can watch – usually it turns my stomach – but he is not mucking around this time. This time he is serious, still Martin, a lightness of touch not taking himself seriously, but he knows now what is wrong with him. There is no cure she says, but maybe it will help to know. We are standing outside the rooms of the guest house, by the open hire car, I take a picture of The Diagnosis, from the specialist-mother – maybe the best kind of specialist – Martin knows why he has all these strange symptoms which for years have just been him being odd, but now have a name: Ehlers-Danlos Sydrome.
"Do you have heart problems?"
Bartelt and I laugh hard and probably a bit too long to be polite.
"I had my valve replaced."
"The Mitral?"
"Yes," I say.
"How did the operation go?"
"Oh, I died and they couldn't understand why it went so badly."
"Yes. They shouldn't really operate on people with EDS."
As we drive off to the Drill Hall I am in shock, I should probably not be driving. I cannot imagine how Martin is feeling, marooned, as he is, on his own island of ill-health. This EDS explains why Martin died on the table last year, lost half his blood, needed the valve replaced in the first place.
It has a name. He has a diagnosis.
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