Friday, 11 February 2011

I Have a Dream

Having woken at 3:00 am in pain with my neck and shoulders, I have found it impossible to get back to sleep, and after an hour of tossing and turning have decided to get up and write about something that has been on my “blog log” (where I keep a record of my ideas) for quite a few weeks. The reason for my inability to get back to sleep is not just pain (although that has a lot to do with it sadly), but also worry over my younger daughter. It has been a really tough week for the Collinge family, as she was physically attacked by another child, for the third time, and we have found it necessary to remove her to another school for her own personal safety. I am only thankful there was no permanent physical injury done. But to say that I am disappointed that we have had to take such action is an understatement and it was something my elder daughter, husband and I could have well done without.

But on to other things……..the title of this blog! And I apologise if I have misled you. I am not going to talk about Martin Luther King on this occasion, but in a future blog I promise I will do and about how he has inspired generations.

I have to admit, my absolute favourite film of all time is “Mamma Mia” – I absolutely and utterly love it! For me, it is complete escapism to a world where the sun shines constantly, the sea looks really inviting and love conquers all! (Apologies for going “overboard” on the superlatives – I really can’t help it!) Whenever I need cheering up, out comes the DVD from its box, on goes the TV, and I spend a very happy couple of hours in another world. As a result we, as in my daughters and I, play Abba in the car whenever we’re on a journey somewhere (I cannot speak for my husband here and I don’t think he would be particularly pleased if I did). One of my favourite songs on that CD by Abba is “I have a Dream”. For me, the first two verses especially strike a chord, and in particular the lines:

I have a dream, a fantasy
To help me through reality
And my destination makes it worth the while
Pushing through the darkness still another mile

I have a dream, as I’m sure anybody with a chronic degenerative illness has. That dream is to wake up and find that it was a dream after all. That dream is to be cured, to not wake up at 3:00 in the morning in pain, to not suffer the indignity of spilling a cup of coffee everywhere in a cafe owing to tremors, to being able to pack away my shopping easily without having to ask for help. That dream is to not having to constantly be aware that I need to know what the time is so that I don’t forget to take the next tranche of meds. That dream is to go back to the career I once had in banking rather than having a discussion I would rather not have had with my consultant about deep brain surgery.

But the reality is that I do have a chronic illness, the reality is that it is degenerative, and the reality is that I did have that discussion with my consultant a few weeks ago I  would rather not have had. I think I have pretty much accepted Parkinson’s in my life and that it may well be here for good, but every once in a while I get pulled up short – and this happened about 10 days ago when during a conversation with my husband about our future plans, I reminded him I was going to be ill for the rest of my life, be it the next 5, 10 or 30 years. It really made me stop and think, and once again I felt the raw edge of the reality that I may never be cured.

But it is also the reality that I may be cured that pushes me on through the darkness of Parkinson’s, through yet another mile. I am a determined person, and Parkinson’s has made me ever more determined to do what I can to raise awareness of this disease, and to raise funds to go towards the destination of finding a cure. I am in training, and I have two goals – one physical, the other mental. 

The physical goal is to walk the Kennet and Avon canal end to end to raise as much money as I can for Parkinson’s research – all 87 miles in just 5 days. (Good grief, I must be mad…...) I would love to take the credit for the idea, but credit has to go totally to one of my book group buddies who was totally inspired by Tom Isaacs book “Shake Well Before Use” (my suggestion for the 2010 read). My friend is keen to raise money for research into another chronic illness, Diabetes, which her husband and son both have. As a result, I find myself in the local gym two to three times a week (I try to get there four times a week, but haven’t succeeded so far), and in between times I am on that Wii Fit, pushing my body through yet another mile, to improve my muscle tone as well as my mental stamina. As you have probably guessed by now, my mental goal with the walk is to tell myself, constantly, that I can do it and I will do it – failure is not an option.

But there is a longer term goal here as well – not only to do what I can to delay the inevitable physically, but to also bolster up my mental stamina to walk the Parkinson’s walk in the future without fear or dread, to face it with determination, to face it with courage, and above all to face it with a sense of humour. As I said, failure is not an option.

On that “note”, I’ll leave you with the end verse of the song I love to sing…….

I believe in angels
Something good in everything I see
I believe in angels
When I know the time is right for me
I'll cross the stream - I have a dream
I'll cross the stream - I have a dream

Saturday, 5 February 2011

Banking, Politics and Me

I did toy with the idea of calling this blog “The Importance of Being Earnest”, but then thought better of it, as the subject matter is not a trivial comedy for serious people, unlike the stage play of the same name by Oscar Wilde. It is instead a very serious subject that concerns a lot of people in the UK at present. It is more to do with a world that is alien to me, that being the world of Politics. Even as I type this it feels strange to be discussing this. I am the archetypal floating voter – seriously – I never ever decide who I am going to vote for in general and local elections until the very last minute. In fact I have even been known to get to the ballot box on one or two occasions and still be undecided. I always consider who I am going to vote for, read all the literature, discount those candidates who cannot be bothered with even putting anything through my door and then side with the party I think has got the best deal on the table. Interestingly, my vote invariably ends up the same party! That said, I annoyed my elder daughter in the last round of the general elections, as I never ever tell anybody who I vote for, and my refusal last  time to go public seriously annoyed my first born. Even after 25 years of marriage my husband doesn’t know who I vote for. That’s my constitutional right, and I’m sticking with it!

Apart from a brief “flirtation” with politics when I was 18, canvassing for my brother when he stood in local elections as a Labour party candidate in a traditionally Conservative ward, I have never really taken much interest in the subject. I remember I really enjoyed the canvassing, Ant did well all things considered (a small swing in his favour), but my best friend at the time, a staunch Conservative, refused to talk to me for about 2 weeks, until I told her not to be so silly.

And that was the last time I took an active interest in politics, until about 2 weeks ago that is. The last few weeks have been momentous for me, as officially, at 2:30 pm UK time on Monday 31st January, I left forever the hallowed halls of banking (namely the one with the black horse running amok on a beach somewhere) and officially entered the world of the retiree. A little earlier than planned, I must admit, but my mate Parkie had a lot to do with that decision. But it was also momentous for another reason. It marked my sojourn into the world of politics again, not just once, but twice, to lobby politicians about the proposed changes to the Disability Living Allowance (DLA). Lobbying is something I have never ever done before, never thought I would find interesting, and I hate to admit it, but I think I have got completely and utterly hooked!

Had someone told me two years ago that I would be doing such a thing I would have told them to get lost. “What me, talking to politicians – nah!” But, that is what I have been doing. I was asked by Parkinson’s UK to join them as a patient representative of the charity, as they are concerned, as are many others, about the changes to the DLA and I agreed to go with them to Portcullis House on two seperate occasions, to speak to members of the Liberal Democrats and Labour parties. I even took the opportunity to speak to my own MP whilst there. Before the meetings, I did my research, and read up on the proposed changes and very quickly realised that whilst the DLA needs a radical overhaul, the radical overhaul in itself was a potential minefield and was going to result in a lot of disabled people, who rely on this payment, being seriously disadvantaged. I also came to the conclusion that it was going to seriously disadvantage the Government, as the changes were going to cost a great deal of money to not only implement, but also administer going forward, money which could be better diverted elsewhere. It wasn’t right, so with my business analyst hat on, I spoke out and put forward my views.

I am not going to say what those views are in detail – that is between me and those I spoke to. I even had the temerity to put forward some proposals of my own. In my opinion as a new kid on the block of politics I thought the proposals I put forward were sensible, considered and justified (well, sort of!).

What I would like to say is a huge thank you to those Members of Parliament from the Liberal Democrats and Labour parties who took the time out to speak to me (and others) and listen to our views and the impact it will have on us as living, breathing, disabled human beings. But most of all, I would like to thank my own Member of Parliament , Claire Perry (Cons) who saw me at extremely short notice. I had met her once before, when she was canvassing during the general elections last Spring. It was the first time a candidate in my constituency had actually knocked on my door during the run up to an election, so I took time out to talk to Claire and listen to her views. I was impressed by what she said then, and I was impressed when I met her again earlier this week.

This time though, the tables were turned, as it was I who wanted to speak to Claire to put forward my concerns, as a member of her constituency rather than a lobbyist on behalf of Parkinson’s UK, about how I will be personally impacted by the proposed changes to the DLA, and she took the time to listen to what I had to say. We didn’t just discuss the DLA, we talked about other things as well such as the local secondary schools (a subject close to my heart as my elder daughter is soon to move on up to “big school”), my career in banking and also how the diagnosis of Parkinson’s affected me, and my life as a busy (and now full-time) Mom.

As for my brief sojourn in to the world of politics, who knows if I will do any more canvassing or lobbying in the future? What I will say with certainty though, is that whilst I will miss the world of Banking, what ever my retirement has in store for me I don’t think I’m going to be bored!