Before being diagnosed, I don’t think I ever asked myself the question – “Am I hopeful? Am I optimistic?”
Despite being a person of faith, I think I just sort of lived without really entertaining the question. I guess I probably would have answered that I was broadly optimistic about the future. I was a practical person who was positive about life and who just got on with it. I was no philosopher.
This, however, is a question I have considered many times since I was diagnosed, and I think about it a lot. One critical thing I have learned is that hope and optimism are not the same things, and it is a very important distinction.
As the famous Irish poet Seamus Heaney said, “Hope is not optimism, which expects things to turn out well, but something rooted in the conviction that there is good worth working for.”
In a similar vein, a person I hugely respected – the late Chief Rabbi of the UK, Lord Jonathan Sacks – said it beautifully when he said:
“Optimism and hope are not the same. Optimism is the belief that the world is changing for the better; hope is the belief that, together, we can make the world better. Optimism is a passive virtue, hope an active one. It needs no courage to be an optimist, but it takes a great deal of courage to hope.”
Am I optimistic about the future? Not especially. Will a wonderful future be gifted to me on a silver plate? NO. And I am not sure anyone with a degenerative disease with truly awful and ever-growing symptoms can be optimistic. Do I still have hopes? YES.
What do I hope for?
Seeing my children flourish and develop as I believe they are already doing, spending time enjoying life with my wife, having fun moments with friends and family, eventually (I am not rushing my kids on this…) walking them down the aisle and having the privilege of grandchildren, etc., and having the chance to give back to society and to make a difference in a meaningful way.
Interestingly, I don’t dream of fast cars (I have driven a Ferrari at ridiculous speeds and ticked that one off), travel (I have done more than enough of that) and material things like that.
What does HOPE mean to me?
I am not betting on a silver bullet cure coming along, but I have seen three important things in my brief fight with PD.
The advance of medicine – I am one of the very blessed, early adopters of the Produadopa/Vyalev pump, and it has made a simply huge difference to my life. Has it healed me? No. Has it prevented PD from rearing its ugly head? No. Has it made a huge difference to the quality of my life? Yes. I can see the advance of science, and it does give me hope, but we have to keep pushing for and driving change in this area to help make it happen.
The ability to live with PD and have meaning – It is not easy, but in the almost 5 years of PD, I have had on reflection a good life. A lot of pain and discomfort from PD (and Covid and the truly terrible tragedy of war), but I have seen my kids advance beautifully, I have had fun times with my wife and family, I have enjoyed living with albeit some negative periods, I have had satisfaction from my working career, and I have discovered new skills and experiences (yoga, writing, and by way of example, my 15-year-old daughter and I went for a 4k run together – something I never thought I would have been able to). I won’t pretend all is roses – and the world is harsh beyond belief – but meaning yes!
Faith – This is not in any way meant to preach to other people, not is it my place to do so, but personally (and it is my blog :-)) I have seen my faith reinforced and see meaning in what I do. Of course, I am not overly pleased that God gifted me this PD present, but I do understand that for some reason, He believes it is the challenge I must and can face, and I will do my best to step up to it.
Alongside my hopes, I obviously have fears – plenty of them, as I guess you can imagine – for me, my family, my country, the world – the list is endless. These are real and as I wrote yesterday life will always be a House of Cards with PD.
As Rabbi Sacks said – hope is an active virtue – it means hard, hard work – physically and emotionally – but I do hope. The pains and challenges are ever-present, but the things I hope for more than outweigh them.
I don’t doubt I will have periods where this does not hold true or is at least masked/bruised, but as I sit here at 1:40 am (having taken a while to collect my thoughts on the matter), this is my viewpoint. YES to Hope.
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