Well, the difficulty with my father was that he was an agnostic stroke atheist, I don't quite know what you'd call it, and there is a difficulty I think with people who don't have a faith or a philosophy about that, because when you get to the stage where you are facing death, there doesn't seem to be any support. You know, if he'd been a Jew or a Catholic or a Hindu perhaps, you know, the rabbi or the priest or whatever would have come in to talk to him and he would have felt - I would hope - very comforted by that.
But for him death was going to mean nothingness and I don't quite know how you support people through that. That isn't, again that isn't what I think and we had several discussions and then we had very moving and tender father/daughter talks about dying. And I did try and put my point of view because it's the only one I've got to put in the hope that it, it would in some way comfort him. But I know that he was frightened of dying and I don't know how you help people who are frightened of dying and who don't believe there's any sort of afterlife. I don't know what you can do. But there certainly isn't anything coming in from outside if you like.
And I have to say - and it's completely out of context - that my mother was in a cancer ward with brain tumours following breast cancer and there were some very tactless occasions, you know, when there was certainly nobody visiting her except the woman who wanted her to make a Living Will.
Hmm.
[laughs] I mean, where are you where are you coming from with that, then?
Not the support you...
Not exactly, no, no. Quite funny, I mean you know a lot of things you laugh at afterwards. But I suppose that's a feature of our culture and our society now, that we pretend dying doesn't happen and then when you are dying you, it's new ground.
Hmm.
And it's one of those things where those who've died can't come and tell you what to expect.
So other cultures might handle death better?
Well, I suppose I fondly imagine that some other cultures do, you know, perhaps the Hindus and, well, believers of any faith presumably are going to handle it better.
But I wonder if for instance cultures where they can be more open and dramatic and over the top about their grief, which we find a bit strange in England, whether they actually feel better. Whether they can, you know, be more upset more easily, instead of having to hold it all in because it's visiting time, like English people do, and skate round the subject but not talk about it or not know what to say.
Jenny later added the following in writing after her interview:
This expands on preparing for death in a spiritual sense, and is a purely personal view of how it was for us, not right or wrong, not what you should or shouldn't say; just what happened to us.
My father was an aircraft designer, engineer and inventor, a scientific, logical, brilliant mind… Clever man, I inherited few of his gifts. As the MND progressed there were times when he could not face his impending death, and we would talk about what happens when you die, he from his entirely logical, atheist standpoint, me from that of my conventional religion/belief system. He viewed his death, at these times, with a mixture of practicality, “on Wednesday I shall have a bath and watch the news, and then I may die”, and great fear.
He was very frightened of dying, I am not. I found his fear upsetting - no, it tore me apart, and I was desperate to help him, I wanted to be there to face the end with him, without flinching, to show him it was all right. Our talks were simple but unemotional; we spoke in truthful ways without artifice between us, absolutely bare to the bone, about something of which we had little experience; that society ignores, for which, each time it happens, there is no preparation. I believe that death is not the end. He didn't. Odd that I didn't believe in euthanasia and he did; my religious arguments sounded childish and glib; inadequate clichés in response to his intelligent, intellectual views. In the end, all I could say to him, as I held his dead hands, was, “I know it isn't the end, with all my heart, and all my soul, with every fibre of my being, this isn't all there is.” It is my truth, unscientific and unproven, feeble though it sounds, and all that I could say to him to battle his biggest terror, his dreadful thing approaching.
The disease robbed him of all movement, of his voice, of the expression in his face, but his character, his foibles, everything that was him, were all still there, buried inside his skin….When Motor Neurone Disease won the battle, his spirit, his personality, everything that was him, was not obliterated, he just became bodiless.
Those were the hardest talks I have ever had. Two people facing the unfaceable. I stood my ground in good faith although painfully aware of my short comings intellectually and spiritually. Since he died I have reviewed my religious beliefs, extending rather than abandoning them. What I have drawn from all this and would want to pass on is, “Do not be afraid”. |
