Look around you

Last week I was walking along in the sunshine. I passed a woman sitting on a bench and I glanced at her as I passed. Her face was pale and she looked tired. Her hair was dark and straight. Her upper arms were white, but the rest of her arms were sunburnt. The perils of short sleeves in hot sun. She was talking to a young man who was standing outside a shop. I heard her say, 'I don't drink, I don't smoke. Why us? Why did it have to happen to us?'



I have no idea what she was talking about. Perhaps she was ill, maybe she had miscarried. Who knows? I thought of how little we know about other people's lives. All around us the drama of life is being lived. People are dying, others grieve their loss. Every day someone is told they have a life threatening illness and they and their families go on with their lives for as long as they can. They are in Sainsbury's or Tesco doing the shopping, they are picking up the children from school, sitting on trains, waiting for buses - and what is going on in their heads? If the pale, sunburnt woman had said nothing as I passed, would I have thought twice about her? I wouldn't have been aware of her distress. She doesn't know how strong an impression she made on me. How much I identified with what she said. 'Why us? Why did it have to happen to us?'

So yesterday, Roch and I went to the Houses of Parliament, as two of the representatives of our local branch of the MND Association. We joined representatives from branches all over the country at a Parliamentary Reception, held in the Members' Dining Room. The purpose of the Reception was to lobby Parliamentarians on a National Strategy for MND. Before the Reception, the Petition (with over 16,000 signatures) was handed in at No. 10. Not enough Parliamentarians showed up I thought, but we did speak to some very interesting people and it was a privilege to be there. Chris Woodhead (former Chief Inspector of Schools, under John Major's Government - and retained in post by the Blair Government - not universally popular) was one of those at No. 10, and later, his was the most memorable of the speeches. There was a special significance for us in meeting Chris Woodhead, and in being present to hear that speech.

In April last year, Chris Woodhead wrote an article for The Daily Mail, in which he spoke about being diagnosed with Motor Neurone Disease, and the symptoms he had experienced in the months before his diagnosis. The tone of the article was not hopeful. He spoke of thoughts he had had of ending his life. At that time, Roch had been for a series of medical tests and we were waiting for the next appointment with the neurologist. One day, Roch came to me with that article, having picked up a free copy of The Mail at the gym, and simply said, 'Read this.' So I did. Every symptom matched Roch's. We didn't speak about it again, until weeks after we knew the truth. Then we acknowledged to each other that in fact, that article had prepared us for the news. Although it did come as something of a shock, it was not entirely unexpected.

So it felt strange to meet him and to hear him speak. His speech was very powerful - beautifully written and constructed and delivered with humour and passion. He is confined to a wheelchair now, and his arms and hands are affected, but he can still talk. Although the statistics show that 50% of people diagnosed with MND die within 14 months of diagnosis, he is conscious that he has beaten these odds (incidentally, as you know, in two months, we can say the same of Roch). He said that Motor Neurone Disease is merciful in three ways. Firstly, because it gives you, (the sufferer) a chance to adjust to each change as it happens, secondly because it allows you to experience everything with an intensity only given to those who know their time is limited and thirdly, because it gives you the chance to say goodbye to those you love. ( As he said this, I noticed a woman standing near us. Her eyes filled and she set down her glass and left the room. I wondered who she had had to say goodbye to. I saw her later in the House of Commons shop, helping her colleague to choose teddy bear key rings, but I could tell her heart wasn't in it).

He said if someone had told him last year that he would be sitting in his wheelchair in his garden in Devon, feeling contentment, he would not have believed them. He told us that if it had not been for the loving way in which his wife cared for him, he would be dead. It was very moving. He urged those Parliamentarians present to work for a National Strategy for MND, to ensure an equitable and consistent service across the country for sufferers in life and in death, that national guidelines for health professionals are put in place. That existing NHS funds can be used for this. That bad care costs more than good care. These were the messages we were all there to lobby for, I was just sorry there weren't more Parliamentarians present to hear Chris Woodhead deliver them with such a personal intensity.

Afterwards, we slowly made our way to the South Bank and had a meal out. There were two people at the next table, having some kind of business meeting. At one point the woman's male companion remarked that he had once had occasion to meet Chris Woodhead. Roch and I immediately ceased our conversation to listen (it wasn't hard to hear what they were saying). They agreed that he was 'a plonker' and then the woman said 'Of course, he's terribly ill now.' I felt that we really should say something. I felt we owed it to the man we had heard speak so movingly on the issue closest to our hearts and I said as much to Roch. Roch shook his head and just as I was trying to decide what pithy comment I could make as we left, Roch turned to them and interrupted their conversation. He apologised and admitted that he, too, had thought Chris Woodhead was a plonker when he was Chief Inspector of Schools...but he explained where we had been and why and how impressed we had been by him. I don't know what they made of us. I know I was disappointed that they didn't have the added embarrassment of seeing Roch limp past them with the stick, as they left before we did. But you can't have everything and it had been a satisfactory day, all told.

Here we go, here we go...

Isn't the World Cup a great thing? Such a distraction. I think even Thierry Henry heard the roar of jubilation in this house when Mexico scored that first goal. What goes around, comes around M. Henry. Mexico, I salute you for the joy you brought to us all, but especially to my Tom. Now, will France go out? Fingers crossed. We're not bitter...



Well, Roch and I are off again to the Houses of Parliament on Monday, to assist the MND Association's campaign for a National Strategy for MND. I believe Chris Woodhead will be handing in the Petition at Number 10 and afterwards, we meet at a Reception at the House of Commons. They are hoping for a good turnout of MPs and we are all expected to do our bit at lobbying for the cause. We're looking forward to it. You may remember that Roch gave evidence before the Joint Party Committee in February (did I mention this?) and we went back for the publication of the Report in March. I'll let you know how it goes on Monday.



In other news...plans for the house continue and next step is choosing a kitchen! The work will be done in stages and the first stage will be the installation of the new kitchen. For those of you familiar with the house, the kitchen will be in the back room. Once the new kitchen is in, the old kitchen will be ripped out and the wet room will take its place. We had Builder Andy here on Wednesday, and there was the usual head shaking and tut tutting as he took note of the re-wiring that would have to be done, the radiators that need to be moved etc. The biggest regret for me will be the loss of our lovely original, restored floorboards in the sitting room (not to mention my carefully chosen tiles in front of the fireplace). I suppose that's shallow - but I do sigh. We have three different floor levels downstairs and to raise the floor in the sitting room (without having to take out a second mortgage, that is) they will have to put laminate down over my original restored...we've been there. Never mind. Has to be done.

A year tomorrow

So tomorrow is 16th June. A full year since Professor Kaplan gave us the news. I remember sitting in a narrow hallway outside his room. I stared at a sign on the opposite wall which said
'Apologies for the inconvenience caused by the refurburbishment' (sic) and watched another couple nearby who looked just as small and scared as I felt. I think Roch and I both knew it wasn't going to be good news but we were stunned anyway. It was a really hot day and afterwards we went for lunch in Twickenham. Both of us cried a bit. And now a year later, we've had a good year, like I said in my last post. Maybe what we're feeling is the knowledge that each year now will be not quite so good as the one before. And I keep telling myself that I need to live in the moment and I know it's true, but somehow I'm finding it more difficult than ever.

I went round to the corner shop yesterday and the lovely guy there asked me how my husband was. He said he hadn't seen him for a long time. I suddenly thought - is that too far for him to walk now? I realised I hadn't noticed him going round there lately. Maybe it is too far. Although on Sunday we went to Twickenham and had a stroll around. He did say it would have been easier with the hated rollator, which is in the Berlingo now, but seldom used.

There is one thing that is guaranteed to cheer me up. Guess what it is? Today I drove round the corner of our road and the first person I saw was Roch. I immediately felt better, lighter. He can drive me crazy sometimes, but no-one is there for me like him. He's my man.

Unlucky

Well it's nearly a year now since the diagnosis. It's true that we didn't expect to be doing so well. He's still walking, although he's much slower now. People are noticing this and commenting, but they are also saying how lucky he is to be doing so well. I guess that's true but pardon us if we don't feel so lucky.

A year on and we've been to New York, we've had a big Christmas Party, he's still working full time (more or less) and we're off to Venice next month. So shouldn't I be feeling more positive? I am reminded of a remark made to me some weeks after he was diagnosed, when a well meaning person said "So, you must be getting used to the idea now?" Used to the idea? What did that mean? Which part? Used to the idea that I know my husband will die young, will die before I will (unless I am struck down in the meantime)? Or used to the idea that life as I know it will never be the same again? Used to the idea that slowly he will lose all muscle function and become completely reliant on me?...You get the idea.

I have been feeling pretty crap about it all lately. I have retreated somewhat from the public eye and for the most part, avoided contact with those I don't absolutely have to see or speak to. My tolerance level has gone down. I just can't be bothered with small talk. I think I'm ok at home - with the kids and with Roch and although it's sometimes a strain at the start of my shifts in work, before I have made the transition to 'Missing' and slipped into professional mode, after a while there I settle into the tasks and routine and MND recedes from the forefront of my brain. It's a relief.

You know what? I don't think I'm used to the idea yet.