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.

The Party!

I thought you might like to see some photographs from the Christmas party we had at home on 10th December. This has become something of a tradition for us now - family and friends, music, booze and lots of food! Preparations begin weeks in advance, Christmas decorations for the house and table, planning the menu, buying in the drinks - arranging Oscar the cat's overnight accommodation...there is something wonderful about being together at home surrounded by the warmth of the love, affection and goodwill of family and friends. This year had an added element of surprise as, unbeknownst to Roch, plans were afoot for a 50th Birthday surprise!!!

Sisters Laura (left) and Marianne give little brother a birthday kiss!

                          

With brothers Mairt, Paudie and Eoin (Eoin playing waiter on the right). I know, like peas in a pod!!

Joined by Paudie's wife Ger and Mairt's wife Sheila (from left).

Most of the 'wimmin' of the Maher clan.

                                  

Many thanks go to my sister Maura, without whom this party would not have been the resounding success it was, to my neighbour Michelle, for making a spectacular 50th birthday cake for Roch, to Roch's brother Eoin for his patience and time assisting with preparations on the day, to my brother Dermot, who flew from Budapest for the occasion and to Roch's brother Mairt, unofficial photographer for the night! 

The 50th Birthday

I couldn't leave the blog today without officially recording our family celebration last Sunday. Roch was 50! Kate came home to be with us and we went out to a gorgeous local pub for a delicious meal. The pub has excellent access and a disabled toilet and the staff are friendly and helpful. We were joined by Kate's boyfriend Simon and there was a lovely Christmassy feel to it all. It got me in the mood for party planning.

Looking rather surprised!

Lovely shot of us just below the toilet sign!

Roch ordered pig's ears as a starter but we all agreed that this was a mistake. I don't know whether the chef had made a pig's ear of it (haha) or whether they were meant to be like that - but none of us like them! The rest of the meal was mouthwatering and I never saw a sticky toffee pudding consumed with such appreciation before (Kate). Definitely to be recommended.

The day had started with pancakes and maple syrup, and ended with Birthday cake - with a huge meal in between. That's my kind of day...

Happy Birthday Roch!

Incurable Optimism Exhibition

At last I get a chance to report on this! Helen - just to say the exhibition was only open to MPs and Peers - I'm sure if you had wanted to come to the Reception, it would just have been a matter of contacting the MND Association directly - but I know this comes too late!

The Exhibition was amazing. All week MPs and Peers were able to view Patrick's portraits in the Upper Waiting Gallery in the House of Commons. It's a bit of a thoroughfare, on the way to Committee rooms, so a lot of people were in a bit of a rush to get through, and didn't have time to stop, but hopefully enough did find time to stop and take it all in.

Unfortunately, Patrick himself was unable to attend the Reception and was sorely missed.

The Reception on Wednesday went well, I thought - lots of MPs and Peers were present (see link to find out who came along) 

http://www.mndcampaigns.org/blog/273_the_incurable_optimism_reception_and_exhibition  )

to listen to Gavin Williamson MP (Chair of the All Party Parliamentary Group on MND) give a passionate and articulate speech about the Incurable Optimism Campaign and the work of the MND Association. Let's hope those present listened to his plea for support. Several people spoke, among them Andy Burnham MP, former Secretary of State for Health, who assured us that our voices would be heard and reminded us that his colleague, MP Kevin Hughes, worked and lived with MND before his death in 2006, so the House had witnessed the devastating effects of the disease first hand.

But the most powerful speech came from Alistair Banks, who has taken on the mantle of fronting the Incurable Optimism Campaign. Alistair is a musician and, inspired by Patrick's story, pledged himself to record an album before losing the use of his hands. He has done it! The album will be released in time for Christmas. Find out more about Alistair here http://alistairtheoptimist.org/

Alistair talked about the 'postcode lottery' and gave a stark example, explaining how in Somerset, where he lives, a motorised wheelchair was provided for him - but a few miles away, across the border in Wiltshire a person living with MND was told he would have to buy it himself. Prohibitive for most people. Fortunately, in the instance he spoke of, the MND Association provided a motorised wheelchair - yet again, a Charity providing a service which should come from Government.

There were lots of familiar faces there - the wonderful Julia Franklin, Association Visitor and Optimist extraordinaire (her portrait was one of those painted by Patrick). Here we are with Roy, who treated me to a personal serenade, very sweetly sung "Have I told you lately that I love you..."

Thank you Roy. I rather think that made my evening.

Liam Dwyer was there, with his lovely wife Anna and I was delighted to meet Sarah Ezekiel at last (her portrait is also one of the 18). It was a shame that Roch couldn't be there too, but he wasn't feeling up to it on the day. Everyone missed him.

It's always a privilege to be at the House of Commons and I count myself lucky to have visited several times now. You can see Patrick's portraits here:

http://patricktheoptimist.org/?page_id=49