As a long-time partner of one of the big firms, it is fair to say that I am fairly goal-oriented in some aspects of life and fairly driven. So…this fight I am in against Parkinson’s – what are my goals? What does a good outcome look like? Dare I say it – what is victory? Until last night, in the five years since I got diagnosed, I have not asked myself that question – and the truth is I didn’t ever ask myself that question before Parkinson’s either. So it is not that I have a measurement to compare it to. Two things happened last night that changed this….
Firstly, I happened to find myself in a meeting I was invited to at short notice. It is not important why or what at this moment in time, but I was with some of the most inspiring people I have ever met. People with PD, most older than me, with quite simply huge amounts of energy, positivity, determination, and desire to achieve. It pushed my thinking and made me think a radical thought which I will set out in a minute. I am not yet sure I am totally in agreement with everything I heard people say but that is also not relevant.
Secondly, I got an awesome answer to a question I asked someone on LinkedIn. When I started blogging, it was purely and totally for my own sake – for my mental state of mind. It was a huge release, a form of therapy. In the last few days, I have started to notice that people are reading it. The partner of a big firm started to kick in and say – what are the KPIs, the statistics, and I downloaded Google Analytics. I asked a fellow PD connection who has a marketing background for some thoughts on the data and she said to me – STOP! Think very carefully before you pursue this path. I did. I was starting to recreate my consulting world in the blog and was starting to head down exactly the path I shouldn’t (although it is one thing to say that and another thing to avoid it).
The radical thought
Although I consider myself a person of faith – I truly believe, I chose to be religious, I pray three times a day, I keep the Sabbath, I totally subscribe to the ethical values of ‘love your neighbor, ‘we are ALL created in His image’ etc, yet, I hadn’t reflected on this question of what good looks like. And then it dawned on me…literally now.
I guess I had assumed that my goal in life was to achieve x% of what I would have achieved before. For example – had I intended to live to see my grandchildren marry now it is to make it to my kids’ wedding and walk them down the aisle, had I planned to retire at age x now it is x minus 10, had I planned to retire with $x now it is $x minus y, Most importantly selfishly – if it was to get to ZERO years wearing a nappy and being spoon-fed, now it is x. That was my mindset.
And then I put the two incidents together. Why do I need to measure my goals against the original ones? I can have new goals. For sure in the old goals I will come in worse than before – no doubt. But what about other things? What about writing – I never wrote for pleasure in my life before PD – now I simply love it. It is a new skill (some would say massive annoyance). What about running – I never ran before now I have done 10k – it is a new skill.
It goes further – what if this new path that I was given to me (which I clearly did not nor do want to be going down) is actually to achieve something different – do something I couldn’t have done before – then my goals don’t need to be ‘x minus’, they can be new ones.
BUT…slow down….don’t get me wrong. The original goals are probably all there. I want to work for as long as I can, I desperately want to walk my kids down the aisle, I want to avoid nappies for as long as possible.
And…let me be clear, I am not for a single second EVER saying having Parkinson’s is a good thing (I started this blog before 2am and that is a good having recorded a good (for me) sleep length on my Garmin of 3h 35min and a pretty standard, understated comment from the watch saying “Your sleep was too short”). The reality however is that I have Parkinson’s and it is what it is. My goal now has to be to do as much as I possibly can with the life experience it has added to my life. My goals don’t need to be the same. I am a different person now.
Then I reflect on the people in the room – high energy, committed, driven, passionate. I have no doubt that each has their demons, their negative moments, their pain and I have learned never to judge a book by its cover. They however, showed me in the one hour that I can and must use the new experiences I have to try to push the barriers but in a slightly and possibly very different direction. I can achieve new things – this blog, the Produadopa/Vyalev WhatsApp group and hopefully many more.
I can also hopefully show my kids a different kind of strength and moral path – one of determination to do my best with what I have.
Yesterday – before the meeting – happened to be a particularly dark day for me. I was very down, and I look at my blog on vultures and parasites and I can see it. The meeting really raised me.
So, what is Victory? I don’t know, but for me it is not simply ‘x’ minus. On that scale I am always losing the fight. It is not a percentage of what I had thought I would do…it is maybe something different, possibly better in some dimensions.
