In New York

In New York

Monday, 26 December 2011

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 )

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.


  1. Xmas can very definitely be a bitter sweet time of year. I must admjt to having guilty feelings about sitting down to festive meals when all Jude could have was Fortisip via her PEG tube. If Roch is anything like Jude (& I suspect that he is) then he will probably gain great vicarious enjoyment from seeing you all enjoying yourselves. Take care & have a wonderful New Year, James

  2. I am very excited that you are making the documentary Deirdre and I would like to tell all my friends and family about it. Please will you let us all know in advance when you know when its due to be on TV?

    I have found Christmas hard too this year, but with some lovely moments despite the sadness of MND hanging over us. My youngest son Tom, rose to the challenge of helping out and made a baked Alaska for desert for our celebration (he doesn't cook at all normally!)

    I hope you and Roch have a good year and find some moments and memories to treasure. I intend to keep on doing that, one day at a time.

    Sue x

  3. I just finished reading your blog Deirdre. I have not done this blog thing before but there is a first time for everything,and now that I have been introduced to blogging with the info in your lovely card,Thanks so much by the way,I can keep up with what you all are doing on the other side of the pond! I once read that the definition of courage is grace under pressure! You and Roch are certainly most courageous!!I hope Lorna and I will be able to take a trip over the pond sometime and have a pint or two with you and Roch! Well A pint,according to Lorna ha! Many blessings!Sean!

  4. Great reportage, anecdotes, and all-around storytelling. That interview has the chance for people to see one couple's reality. It is also a historical document. There better have been some coverage about the benefits of the Church of Arsenal, or I will be sorely disappointed.

    Seriously, agreeing and doing the interview --I know only good will come of it. Viewers pick up on authenticity, love, and humor. They trust it when it is real like that, and not some candy coated feel-good story. Although in the end, people will feel good, because you give them hope, and show there is humor, amidst the adjustments, and the trials, and the communication. Bless your whole family.

    L. in California