The run-up to Christmas and an interview for the Associated Press

I have to admit that I found the run-up to Christmas difficult this year. I felt maybe that I’d tired myself out with preparations for our party. Once the party was over, I couldn’t believe I still had so much to do for Christmas. I didn’t feel very festive during Christmas week. We had our office Christmas lunch and all the people I work with are lovely but I found myself looking round the table and feeling quite detached from the conversation. It felt like it didn’t have much to do with me. It should have been fun and relaxing, but I was going through the motions. In fact, it felt like I was going through the motions for most of the week before Christmas. One morning Roch and I faced each other across the breakfast table and I told him that I just felt sad. For the first time Christmas was making me sad. Would every Christmas feel like this now, I asked? He felt sad too, he said. How many more Christmases will there be for us? Will I cook a big Christmas dinner for Kate, Tom and myself when he can’t eat it? Will I want to? We allowed ourselves to admit our sadness to each other. Afterwards, I felt a little better and after work on Thursday, I did begin to feel more festive. The house looked wonderful with all the decorations up, the party had been a great success and now all I had to worry about between me and enjoying Christmas Eve and the day itself was a visit from a film crew from the Associated Press.
(APTN Horizons http://www.aptn.com/ )

It is Stephen Hawking's 70th birthday on 8th January and the (APTN) are making a programme to mark the event. They wanted to film a couple living with motor neurone disease and the MND Association suggested us. I was dubious at first but we decided to go ahead with it. In fact it was a really interesting experience. The people who came to film us were very considerate and very professional. The whole thing took about two and a half hours and they shot 50 minutes, which will be edited to six. Our friendly young cameraman has promised us a DVD of the finished cut and also the full 50 minutes’ footage. They interviewed each of us, took pictures of photographs of us together and with the children and filmed Roch at work at his computer, putting on his shoes with the famous ‘sock putter-onner’ and enjoying a cigar and coffee outside on the ‘smoking platform‘! Daily life. It’s a programme which will be translated into several languages. It’s funny to think of us being dubbed into Chinese and Farsi.

Our interviewer asked us questions about how we felt after diagnosis and how we cope now and we talked about how helpless we felt then and how, until we talked to the MND Association, we simply did not know how to tell the children. The reporter asked me how we met and what attracted me to Roch all those years ago…I found myself talking about the early years together and his boundless energy, how he could never keep still for five minutes - how idealistic he was, how attractive - how sexy. The day he winked at me across a crowded room and we both felt that spark between us. They are good memories.

We talked about how MND has changed the way we look at life. I think this is especially true of me. I am much more laid back about things when they go wrong. Less likely to freak out when life doesn’t go to plan. We talked about how we enjoy the little things, watching the birds in the garden, noticing the birds in the garden, taking pleasure in the beauty of the light, the shape of our birch tree against the sky.



Holding forth!



Let's try not to look too self-conscious!

Afterwards, I felt that Tom (the cameraman) and Havovi (the reporter) had done me a favour. They reminded me not just to enjoy the present (something I had been unable to do earlier in the week) but to remember to treasure the past.