I've been looking through entries in my diary notebook and pretty major landmarks are recorded there, some of which I look forward to sharing later on. The very first entry is interesting. Boy, was I angry. I took the time to record some of the reactions I encountered to the news of the diagnosis. Now, let me say at this point that some people's responses were terrific and that has to go on record. But I think it's worth quoting part of what I wrote back in June. It might help someone somewhere. These are some edited highlights.
"I'm angry with people's reactions. No, wait, they can't help their reactions. So it's not that. I'm angry with how people think they can say ANYTHING to me about this. I understand that they feel they can't say things to him. They're afraid it might upset him. But don't they think what they say will affect me? ITS NOT OK FOLKS! Want some examples? A favourite way to begin is 'Do you realise...'
'Do you realise...he won't be able to swallow/speak/move?'
'Do you realise...you'll be his Carer?'
And a personal favourite - 'Do you realise...when he needs to go to the toilet - you'll have to be holding his penis?'
Doesn't it occur to them that since the Diagnosis I have read about MND, that I am finding out more and more in my own time, that I might not be ready to hear certain things yet? Listen, it's not my responsibility to look after YOUR feelings.
Also to those people who ask him if our sex life is affected - you didn't have the right to ask about it before - so what gives you the right to ask now?
Come on people, stop for a moment, remember you are talking to his wife. Don't you think she might have spent some time thinking about what this cruel, relentless, insidious disease will do to her darling, active, sociable, funny, loving, chatty husband?
Of course, the other explanation is that some people think I'm incredibly stupid and incapable of working any of this out for myself.
Yes, I know he will lose the ability to move, speak, swallow and eventually to breathe. Yes, I know I will be his Carer, and I welcome that role. Yes, and I know you all mean well and you care about him too. But listen, folks - give me a break, I'm not made of stone. Don't expect me to be the place you bring your grief. I have enough to do, to deal with my own.
Finally, to those who have kindly offered to 'say a few words' at his funeral, I have this to say,
'Thanks, but HE'S NOT DEAD YET!'"
I was pretty angry, wasn't I? I don't feel angry with those people any more and I've learned how to deal with unwanted expressions of sympathy. It was hard for people to know what to say, it still is. But as I said before, there were people who got it right for me. Here's just one example.
My friend Carmel called from New York when she heard the news. I had sent her an email to tell her about the arrival of the monkey. I remember Roch answered the call and they made small talk for a few minutes, then he passed the phone to me and brought the kids out for ice cream, because he knew I would want some time alone with her. When she knew we were alone, she simply said, 'You've a hill to climb.' My eyes filled with tears and they were partly tears of relief. It was all I needed to hear to feel understood.