Posts Tagged ‘22q11 deletion’

The glamorous life of a writer…..or not.

Thursday, October 6th, 2011

My week is not going as planned, *sigh*.  My washing machine is still broken.  Which means that I have spent some ultra-glamorous time hand-washing underwear and school uniform. Well, I think it’s washed anyway – how can you tell? It’s been in some hot water with washing powder and I moved it around a bit. I obviously couldn’t get it as dry as the spin cycle on the washing machine can, no matter how many times I wrung it out, so the smallest girl has gone to school today in an ever-so-slightly-damp blouse. She looked startled as it went on and complained “But Mummy why does it feel wet?” with great big, innocent, four year old eyes. Then the eldest girl whipped around and said knowingly “Oh I remember that. It’s horrible. You have to wear a vest to soak up the worst.” I sincerely hope that doesn’t come out at school. I did iron it. The washing machine is under a ‘repair or replace’ insurance policy, but the engineer has already been out twice but failed to mend it and I’m not sure how many tries he is allowed. And while he was here I also caught him cleaning my floor and mending my kitchen cupboard so I’m not entirely sure what role he thought he was fulfilling. I wait with anticipation to see what he will try today. Gardening, perhaps? Prayer?

Last week I was also in hospital overnight with my smallest daughter. As I have already mentioned she has 22q11 deletion (a genetic abnormality), part of which is something called a sub-glottic stenosis. This is a narrowing of her trachea, which can cause problems when she has a cold or cough, especially croup. Guess what she developed last week? Croup. Her breathing deteriorated beyond what we deemed acceptable and we took her to the hospital one evening to be checked. It was a fascinating experience. Upon entering the out-of-hours clinic I noticed that all of the chairs were super-size, I could have fitted in them twice over easily. Then we went in to the examination room where I noticed that again the bed was enormously wide. As the doctor wrote up some notes after his initial examination, I asked: “Are these chairs and beds deliberately big?”

“Yes,” he replied. “This is an obesity clinic during the day. And over in that room we have scales more normally associated with the zoo.” I was avid with curiosity, but my child couldn’t breathe so I thought I’d better stay put.  (I’d like to stress that this was before the damp blouse incident.)

My husband and I are reasonably intelligent and educated, with a vested interest in 22q, which always leads to the assumption that we are medically qualified as we chatter about T-cells, aberrant subclavian arteries, etc. and therefore to the question: “What do you do for a living?”

“I’m a writer,” I told this doctor.

“Really?” he said. “Really, a writer? Wow.”  (Chair swivels round, full attention upon me as my child gasps in the background). He had by this stage decided that she needed to be admitted and was in the process of filling out an admission form for her.

“Yes.”

“Published?”

“Yes.”

“Wow,” (wonderingly), “Wow. I’ve always wanted to meet a writer.” (Pen dangles from hand, form forgotten).

“Oh – right,” (smiled uneasily).

“Anyway, anyway,” he says hastily. “I suppose I’d better fill this in,” (concentrates on the form momentarily). “But can I just ask – where do you get your ideas from?”

“Lots of places. Usually just human observation, my own experiences – you know.”

“Wow, I just think it’s amazing,” (pen dangles from hand, form forgotten). “I’ve always wanted to write a book.”

“I’m sure you could. You must have lots of interesting stories. Have you – er – finished the-”

“Not sure they’re interesting. Only medical things.”

“Well there you are. Could we possibly have the – er – ” (child gasps in the background).

“At least when you die you know you’ve done something useful with your life,” he announces.

“But you save people’s lives,” I respond incredulously. (At this point I was hoping my daughter would be among the number.)

“Well yes, but no-one’s going to remember me for that.”

“I’m not so sure.”

“What do you write?”

“Fiction. Women’s fiction.”

“Oh, chick-lit, is it?”

“Yes. I’d say it’s in that category. Could we – er – ” (I indicate the form)

“What’s the name of the book?”

Things He Never Knew. Just Google me – Sarah Haynes – the details will come up.”

“Right, right I definitely will. Anyway, I suppose we’d better – here you go – the form. This isn’t the sort of thing you’d write about is it?”

“No,” I said sweetly. “Not at all. But it’s going on twitter.”

My husband had remained silent throughout this exchange, but as we walked away from the clinic (husband didn’t allow me to go looking for the zoo-scales), he just smirked and said, “My, my, haven’t you made a new friend.” I think there’s about a 70% chance that the doctor concerned will read this and Dr X – if you do, don’t be offended, I’m not poking fun, you just amused me. It’s quite flattering, really.

Anyway, the really bad thing: my manuscript has not progressed at all this week. I am still stuck in seemingly-eternal conflict about whether to write in the first or third person. I started off in the third, realised that this story lends itself far better to being written in the first so I changed and it all went swimmingly for a few thousand words. Then I got stuck, couldn’t progress the plot, doubted my decision and so began the debate. And you remember in my last blog post when I said I’d decided to be brave and stick with the first person? Well, I wasn’t brave. I umm-ed and ahh-ed about it and decided I’d made a dreadful mistake and I had better change the 11,000 words I’d written back into the third person. But when I started doing it I realised that it would require an entire re-write: I write totally differently in the first and third person. This showed me that if I did go back to the third person I would be ruining the story. So the end result is that I’ve gone round in a great big circle and ended up exactly where I was before – writing in the first person and having to be brave. I think the secret is to write regularly (which I am bad at, my general habit is to write thousands of words in a day and then nothing for a week) so I don’t find it too hard to get inside my character’s mind. If I leave it too long I do struggle and then I start doubting myself….

I have no more publisher news. As far as I am aware, Daisychain is still languishing in the inboxes of editors scattered around London.  It’s not too bad waiting though, with each day that passes I am a day closer to hearing some news; good or bad. It will come eventually.

And speaking of bad news, I was sad to hear about Steve Jobs death today. What an amazing, talented, determined person. What he achieved in his lifetime was just extraordinary and will never be forgotten. I’m not a technological person, but he certainly revolutionised the way that I thought about technology and I can’t be the only one. He can take full credit for my figure in fact, because without my iPod I would never go running. Isn’t it funny how just putting a single, lower-case letter in front of a word can have such a dramatic effect upon its success? Well, no, not funny because all it’s doing is including it in the brand and therefore guaranteeing success, it’s astounding I mean: iPod….. iPhone…..iMac…..iPad…..

iDaisychain??

xxx