In New York

In New York

Friday, 17 June 2016

There's nothing good about MND. An Anniversary Reflection

Yesterday it was seven years since diagnosis. I’ve been going through the blog, reading my posts for each anniversary. I notice that as each year passes the frequency of my blogposts diminishes. I have spoken before about hitting a wall with this, feeling too sad, tired and demotivated to blog. What is there to say? What acceptable words can I find to describe how I’m feeling? Nobody wants to read depressing blogposts. But that’s the reality of MND. As my mother said years ago, “There’s nothing good about MND."

2010 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. 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.

2011 It's an anniversary today. Two years now since the diagnosis. That's pretty good. It's reason enough to celebrate. He's just beginning to need the wheelchair, he's still working, still able to enjoy food and drink. We're lucky I guess. I had a look at my post of a year ago. Roch was using the two sticks, and getting used to the rollator. It was just before our Venice trip. There's no doubt that the monkey is getting stronger but we're not done yet, not by a long shot.

2012 “This is not the end, it is not even the beginning of the end, but it is perhaps the end of the beginning." Churchill 

So here we are, three years on and so much has changed. From the word go, our strategy has been to maintain normality as much as we could and we succeeded, I think. It was the best approach, especially for the children. But in recent weeks we have had to accept a new approach. Phase one is over.

In 2013 and 2014  I did not record my feelings on the anniversary. 

2015 Coming up to the sixth anniversary since Roch’s diagnosis, it feels like a time for reflection. Neither of us thought that he would last this long and to my surprise I’m finding that reaching this stage requires a change of mind-set on my part. In fact, our reactions to the reality of his survival well beyond initial prognosis appear to me to be quite different and I find this interesting. On my part I realise that I no longer view my husband as someone with a terminal illness. It’s true - his deterioration has been so slow and I am so used to his level of disability that although I find it trying at times and struggle with the limitations it imposes on both our lives, I don’t see him as a dying person. To me, he’s just Roch. I have ceased thinking about his death and this means I need to focus more on acceptance of Life as it is now and for the foreseeable future. 


Well, reading through the above entries, I'm not sure I'm following my own advice. The longer this goes on, the worse Roch’s condition gets and the more I grieve for a life together lost. It's hard to accept Life as it is now. 

Last night I went outside in the dark to bring clothes in off the line. In the beautiful scented summer air of our garden, I watched the moonshadows cast on the grass and wondered how I will feel about it all when he is gone. About the garden, the house - everything. I think on some level I keep it all going for him, for us. Our home, our garden. The place we created for our family. Without him, it won’t feel the same. I try to focus on the now but the Monkey’s strength is growing and it’s hard to ignore it. Elsewhere in the blog I speak about the Wisdom of Uncertainty and how each moment, even if full of pain, will pass, the moment endlessly renewing itself. We never know where the next moment of joy will come from. Each moment that passes brings us closer to the final moment and then that, too, will pass. What then? Live through it, I guess. There are still moments of joy but the Monkey’s shadow is long.

People ask how things are, how we are. Most people don’t want to know the truth. Today I found myself answering someone as honestly as I could. I said that his condition continues to head downhill, that we have begun pump feeding at night as we are worried about his nutrition levels, that he is tired all the time, that it is seven years since diagnosis. That really, we are not feeling too great. This was met with dismay. So I rescued them and assured them that he could still enjoy a pint. Relief was palpable. We focused on the positive.
“There’s got to be some nutrition in a pint!” they remarked cheerily. 

It’s all very difficult, isn’t it? People mean well and they are fond of us and wish us well. I do know that. And I am conscious in writing this honest blogpost that people will worry and that is why I hesitated before I began. But really I can’t protect you. He’s worse than he was, but that’s to be expected. It’s harder than it was, but that’s not surprising. It’s all getting tougher, but I think you knew that.
All I can say is, there’s nothing good about MND so if you ask me how things are, be prepared for an honest answer.
Oh and if you do ask, and I tell you,  please don’t try to give me advice or tell me to be grateful for the little things. I don't expect you to solve it for me. You can't. Just acknowledge that there’s nothing good about MND and be brave enough to listen.