I do like reading the insights from someone who is in the midst of experiencing what they write about. In this case, early onset dementia (of some type - still being worked out). It is written by Christine, with some assistance from others, and therefore is a little detached in tone (I think it probably reflects where her mindset is at), but amazing to read how she has managed, for so long, to continue a very full, and productive, and joyful life, despite the fact that her brain scans show the deterioration. The mindset to work around this is amazing - and indeed, to carve out a whole new career, as an advocate and influencer around better awareness and treatment options, from a high level public sector role, is so impressive.
Some quotes:
'The first few years after my diagnosis were some of the hardest of my life....I stopped trying something if it was difficult. I felt everything was hopeless and that is was not worth trying. I became more and more helpless and far more reliant on my daughters. I felt grief about the steady loss of all the things I would no longer be able to do. Fear of the future - of loss piled upon loss - paralysed my for several years. But ... I began to realise that all this grief had disabled me perhaps more than the actual dementia, so I needed to claw my way back again. It was not before I was able to overcome my sense of hopelessness that I was able to overcome my actual helplessness.'
'As I've said, lots of people who meet me or read my books - or both - find it hard to believe I have dementia. I've mentioned how upsetting this to me, Perhaps I should be flattered, but the truth is I work so very hard to appear normal every day and it feels as though that hard work is for nothing if it just results in people disbelieving me, At one of my talks you might see a woman who seems polished and confident but what you don't see if what it costs me to appear like that - or how fast, articulate and clever my presentations were when I was in the prime of my career, before I had dementia. ... I'm also bothered about this very fixed idea some people seem to have of what someone with dementia should look like and should behave. Dementia is a slow, progressive condition that can take many years to do its damage. There are people who seem 'normal' - especially to those who don't know them very well. There are people who have moments of lucidity, or who are able to converse quite happily as long as the conversation is about certain topics. There are people who seem just a little forgetful or a little tired.'
Dementia is often described as a 'loss of self', implying that the person with dementia at some stages loses what it means to be human. But what self are we talking about? Which one of my various selves on my life's journey - child, wife, mother, grandmother? And is it my cognitive, emotional or spiritual self? At what stage in dementia can you deny my my selfhood? This talk of losing self, of becoming an empty shell, means at diagnosis I faced the awful fear of ceasing to be; not just a physical death, but a gradual emotional and psychological death,m the long goodbye. But I reject this idea, and want to focus on what I can still do. I can live a new life in the slow lane. The challenge is to live in a world of hope, alternatives, growth and possibilities'.