I just read how Robert Plant plays a community hall gig. So, a mega star plays a tiny gig - why is that enough to rouse me from my nesting malaise to blog again? It was not so much the gig as the cause he did it for. He was raising funds for Picks Disease.
It is not often that you read about Picks Disease - so it jolted me a little, seeing it written about when I have not really thought about it for so long. The shadow of this disease has fallen over so many of my life's great events, in the way that the absence of a parent can. My Dad's death was bad, but the illness that preceded almost defines heartbreak for me.
Seeing a man transformed, humbled and dehumanised as an illness insidiously took away all that made him great, then robbed him of his life. I say insidious as it was hard to say when the illness first started to take a hold. He was always an individual, a free thinker with a bit of a speech impediment - and the illness seemed to exacerbate these attributes until they became to define him - rather than his charm, wisdom and kindness. Instead of having a speech impediment he became incapable of communicating with those outside the immediate family as his grasp of language evaporated; a gentle disregard for convention over time became erratic behaviour and eventually he was at the mercy of a, sometimes, violent conviction that his needs must be met (think of a toddler with super human strength).
Picks Disease is a form of frontotemporal dementia - hands up anyone who knows that means? The likelihood is that if you are not involved with the medical profession or have first hand experience you will have no idea what it involves. The truth is to the outsider the illness outwardly resembles a mental illness - a broken leg elicits sympathy, mental illness normally prompts concern and fear. Friends found it difficult to cope - although those that owned up to their incomprehension and fear are the ones that I respected, rather than those who chose to judge and even criticise.
His illness was beyond distressing - it is a little known disease and we had no way of understanding it or predicting how it would progress. For many years we stumbled on, seeing all aspects of his character and everything that made him human dissolve until one day when I was sitting with him his finally forgot how to breath and he slipped out of this world. Someone said that it is a great comfort to be with a loved one when they die, but I disagree. However, I found it almost impossible to leave the room until the Doctor arrived an hour or so later in case even then I was letting him down on his final journey.
Even in mourning the illness dictates your actions. The first great step was to remember the man before the illness - the stacks of letters we received was a great help with that. It took years before we could look back and think of the amazing man he once was, unclouded my memories of illness - even longer before we had the strength to see him as a human with all his attributes good and bad. He was amazing and he was human and Picks Disease robbed him of all this and kidnapped our memories was we struggled to cope with the devastation of this illness.
I hope that by Robert Plant in some way raising the awareness of this disease, helping families get support and advice to deal with this - support that was so lacking when we were trying to cope.
[Sorry, I'm going to press publish before I edit this post out of existence. He died in 2002 but it still feels very raw trying to write about it]