In New York

In New York

Sunday, 6 May 2012

Apologies and performing seals

Reading over my last blog entry I realise with some dismay that the last paragraph may be read as a discouragement to those who would wish to share with me their experience of MND or talk to me about any sadness in their lives. In case that’s the way you interpret it, allow me to explain.

The situation I was referring to (and having a bit of a rant about) comes about when people produce a tragedy - NOT central to their own lives, but which in their opinion is greater in comparison, than the tragedy of living with MND/caring for someone with MND. They do this, I think in the well meaning, but mistaken belief that when you hear about their chosen tragic situation, you will feel better about your own. I just wanted to say that it doesn’t help me. If you have a broken leg and hear about someone with two broken legs, you may feel sorry for them, but it doesn’t make you feel any better about your own broken leg. If you are caring for someone with MND and someone who has no direct experience of either living with MND or caring for a loved one with MND tells you about someone they know who e.g. has just died suddenly (comparison being sudden death very traumatic and all that entails - aren’t we lucky having time to adjust? Or something…) it doesn’t make it any easier to watch the disintegration of your loved one over time. Oh dear this is turning into another rant. I hope you get my drift. I certainly don’t object to hearing sad stories and I hope I would be sympathetic but just don’t expect it to make me feel better about our situation…because it won’t.

Anyway, I don’t think we can ever compare tragedies - every terminal illness, bereavement or loss of a loved one results in suffering and I would never presume to say that my situation is worse than anyone else’s. So let’s leave it at that.

As you have guessed, I’ve been feeling angry and depressed by turns lately, which makes everything difficult. I also slept really badly over a number of nights last week and that always, always makes me feel worse. But the good news is that although I am tired, I am feeling up to things again. I managed my three days in work (ups and downs there, too), although on Thursday evening I sat in a more or less vegetative state in front of the TV for most of the evening. There was a moment when I went into performing seal mode, when Tom tossed me a chocolate bar from across the room and I rose up, clapping the bar between the palms of my hands, and sank back again, with a yelp of thanks. Otherwise, I just sat in a stupor watching past episodes of Frasier/ Friends (Roch was out with some real friends!)

However, here we are on Sunday, lots of laundry done, kitchen clean, fridge clean and sorted, shopping in, hair newly cut - chicken roasting for dinner. Roch is doing some work online, Tom is studying for his AS exams. We’re okay.

 I have booked two tickets for the Odeon cinema in Kingston for tomorrow, which I am assured has excellent disabled access. So hoping to have a bit of a bank holiday treat for both of us. What film? Wait and see! Bit of romance for me, bit of violence for Roch. See if you can guess what our choice is for tomorrow. He likes sci-fi and westerns (I don’t object to them) and war films (not my first choice). I like a good thriller, preferably with a bit of romance. We don’t always agree on comedy choice. I like historical settings - so does he, but we don’t always agree on period. See if you can work it out, if you’re interested!





  1. HI Deirdre I know Roch from I read much of your blog. I read the apology about ranting over people who bring up their own situation and compare it to yours. I often have fun with people who see me in my chair and come to me and share stories of aches, pains, hypertension, depression, whatever. Of course they asked first why I am in a chair and when I say ALS, they nod as if they understand. Most do not know what it is. So after they tell me how lucky I am to not have the pain associated with a hip replacement, a pacemaker, a sore back, sleep apnea, migraines or a hang nail. I let them know "I will still trade with you". Then they ask again "what do you have?" because Like Roch, when I am seated and not trying hold a pint to my lips I look fine. They just assume it's minor. These people don't bother me. I used to be one, perhaps You and Roch were as well. But I get a kick out of the embarrassment on their faces when they shut up for 8 seconds and pay attention. It sounds to me that Roch is very fortunate to have you. I would venture a guess that he will agree with me when I say, "I want you to dance". Please laugh too. Im sorry you guys have to endure this, but at least he doesn't have a splinter in his toe. Just kidding of course.