Wednesday, May 21, 2008


From: Duffy

Just finished reading [And Now We Are Going to Have a Party]. I have a better understanding of Aud now. Love the packaging.

Wondered about how much MS affected you then. You mentioned it, but noticed only one specific description of how it affected you on a day to day basis. I think it had to do with your pen suddenly flying across the room. If this is too personal, please don't hesitate to tell me.

Especially loved your description of how you and Kelley got together. I do believe in love at first sight because it happened with me and Janet, too.I think there's a zen concept, satori moment, not sure if I have that right. It refers to a moment of total clarity and truth is revealed. That's what happened to me when I first touched Janet's hand and it was like all that we were to be was revealed in an instant.

Sometimes, when I actually stop and think about how much a human being can go through and still move on with life, my amazement with the universe becomes spiritual.

Thank you Nicola for this amazing revelation of your self.

The only time I've a faint idea of what it means to be 'spiritual' is when I feel what the early Christians, using a Greek word, described as agape,'an intentional response to promote well-being when responding to that which has generated ill-being'. (Thomas Jay Oord)

It happened after 9/11. The twin towers falling down didn't affect me that much--I've seen too many terrorist things in the UK, been through too many bomb threats, been caught up in an IRA bombing in London in the late '70s (not hurt, just trapped in the Underground for four hours)--but the conversations with friends who were beside themselves really bothered me. We should hit them back, said the more injured and bewildered ones. No, we should pound reason in the other goddamn American heads! said others. And I said, No, stop it, listen to yourselves. Force isn't the answer, reason isn't the answer, love is the answer. Love everyone, love them all. After a week or two I realised I sounded like the leader of some bizarre cult, and, profoundly disturbed, stopped talking about it.

I felt an echo of that all-encompassing love (but much less strange) when I was writing And Now We Are Going to Have a Party. It was an overwhelming and particular tenderness towards all the people I'd known, including the little four year-old me busy taking charge of her life, or the confused, drunk teenaged me, or the blazing with self-belief twentysomething who used to climb on the stage knowing she was the closest thing to god those people were ever going to see, baby!

When I sat down to write that memoir I honestly had no idea what I was doing. I wanted to tell some funny stories maybe, to tell some of my truth, too, and to parade a few of the marvels (marvellous to me, anyway) of my childhood, like that Christmas wishlist (written when I was seven). Then my mother died, and I realised that what I wrote mattered, that she wouldn't be there to read it or contradict it, and it had better be the truth. At the same time I understood it was the story of what made me who I am: a writer. And it all came together. I wrote the whole thing in about three months. There was no rewriting time. It was just one big gush, with a little tidying up at the end. It was a true labour of love: for myself, for my family, and by me, by Payseur and Schmidt.

MS didn't really start to have an impact on my life until I was 28. I went down with what was diagnosed as 'post-viral syndrome' after getting a hepatitis B vaccination and then catching flu. I recovered from the flu but was so tired I couldn't walk more than fifty yards, or, some days, even sit up for very long. I had weird tingles swimming up and down my spine like electric fish. This went on for months. I lost an appalling amount of weight. I was diagnosed with myalgic encephalomyelitis. Then I moved to the US, where that diagnosis was changed to chronic fatigue syndrome (aches, weakness, irritability, as well as the fatigue and weight loss). I gradually got better, being able to walk a mile, or go dancing. Then, when I was 32, I got abruptly worse again--falling down, zero energy--and this time I was diagnosed with MS.

Even before the first official illness, I would have weirdnesses, like getting astonishingly dizzy and falling down for no good reason (though I was doing a lot of drugs, so it didn't really worry me) or having my writing arm suddenly stiffen up, or not being able to quite breathe properly. One doctor told me I was having a nervous breakdown and gave me tranquilisers. I flushed them. Though I had been extremely energetic and vital all my life--every kind of sport you can think of--I'd also been ill a lot. When I was eight and nine I was hospitalised several times for a mystery illness. When I was allowed home, I went to school only in the mornings for a while. So, while being diagnosed with MS was a terrible shock, being ill, on some level, feels almost natural.

Falling in love was shocking, too. And very odd. I've never loved anyone the way I love Kelley. And it happened right away. It was damned strange, and a bit frightening. I love being her love, it feels good--right and true--but, honestly, I'm glad I'll never have to go through that vertiginous internal rearrangement again.

This blog has moved. My blog now lives here: