So who am I? The answer should be easy; ‘You’re Willy Gilder’. And that should suffice – I’m the person with that name, who behaves the way Willy does and has done for years, who’s know for both the good things in his personality (sense of humour, loud laugh, ability to get on with all sorts of people, good at drawing) and the less good (untidy, hopeless with detail, no good at planning).
But what if that shorthand for a person is changed? What if ‘Willy Gilder’ becomes someone different?
That’s the problem faced by people with Frontotemporal Degeneration and their loved ones. We are not the people they knew, and we are not the people we thought we knew. And, to put it mildly, that’s hard to cope with.
So I was once known as the ‘King of Voxes’ – the man who would at the drop of a hat go out into the street and pick people almost at random to be interviewed. Now? I don’t really want to relate to anyone – least of all people I’ve never met.
Once I was known for my loud and uninhabited laugh. I’ve even been thanked by the cast in a play (in mid performance ) for getting a joke which no one else did. Now I might laugh occasionally but I’m general my sense of humour has disappeared.
Once I had a sense of love and empathy. I’ve cried with interviewees. I helped look after my aging and frail mother-in-law. I loved my sons. Now, I struggle to know what’s meant by ‘empathy’ and ‘love’: my ‘empathy circuit’ has gone missing-in-action.
So i’m not a very nice person. I don’t laugh or cry. I don’t love. I’m not interested in people as I once was. And I don’t care.
But it’s not that I don’t want to care: it’s that, in all probability, it’s because I can’t: because the part of my brain that controls these thoughts, feelings and emotions has, quite literally, burnt out.
Now, as far as I understand it, most people with frontotemporal dementia (FTD) are unaware of their condition. But that’s not the case for me. I KNOW that my personality has changed – and changed in a way that I don’t like. But I don’t seem to be able to do anything about it.
As far as I can see no amount of counselling, therapy, group work, discussion or whatever can change me – anymore than talk can mend a broken heart. Because I don’t have broken thinking that can mended – I have a broken brain.
So if you knew ‘Willy Gilder’ I’m afraid that doesn’t mean you know me now. I’m the same person, but with a different personality. Bits of me remain the same, but other bits have changed. And if you think that’s hard for you to cope with then, believe me, it’s much harder for me.