I have tried to write this 15 times… it is really hard to articulate, but it is something I have an overwhelming desire to talk about. It is something I think about so much and want to get it off my chest – you can choose to read, choose to delete, choose to disagree.
It really is broader than PD – I am turning 50 soon and so many of the people I know are grappling with this question. Life is so hard in so many ways – health, emotionally, physically, financially…geopolitically – the list is endless and each of us has their very real challenges, most people far tougher than me.
I am not sure I am at all qualified to answer this question and to be honest my answer isn’t completely consistent – it ebbs and flows. My family will attest to the fact there have been many moments when I have let my positivity drop and almost or actually edged into dangerous territory.
Things, however, were brought home to me when someone said to me words to the effect that “they respect my positivity hugely but that for them they can’t carry on, they simply can’t face it anymore…I have simply had enough” This shocked me to the core.
How do I respond to that? I am NOT a qualified psychologist or a life coach – the only thing I have to share is my personal experience and my lessons learned.
“Be Positive” – The Most Annoying Saying for So Many of Us
There are many moments during the last few years when the phrase ‘Be positive’ has felt like the most annoying possible thing anyone could possibly say to me…truly there are times when I haven’t wanted to hear it and have found that it makes me more upset than before.
It triggers in me, sometimes, a hostile reaction. ‘No, I don’t want to be positive’ and worse…and what I actually want to say is “Don’t you realize that I have a degenerative disease, I am 49, using a walking stick/cane and my prognosis is a life of pain and loss of dignity and control as I age” – I don’t feel like feeling positive.
[I should say in correction to the above that there are actually times when there is something that annoys me more. That is: “It could be worse”…yes… people have said it.]
When last week my freezing and falling suddenly came back, it was very very hard to stay positive and to be honest it is not a fair expectation.
I have, however, through the journey done my best to be positive…and largely I succeed.
The Logic of Course is Clear but That Doesn’t Translate to Feelings…
Logic is important although it does not usually win when it comes across emotion – i.e. how someone feels is how they feel and it is very hard to convince someone otherwise. Nonetheless, let’s briefly look at the logic.
Study after study seems to suggest that positivity is good for a person. Just two of many examples include:
- A study by Johns Hopkins Medicine found that individuals with a positive outlook were one-third less likely to experience heart attacks or other cardiovascular events compared to those with a negative outlook (Lisa R. Yanek, MPH, et al., 2013, American Journal of Cardiology).
- Thinking Positively About Chronic Illness: An Exploration of Optimism, Illness Perceptions, and Well-being in Patients with Parkinson’s Disease (Authors: Mike Samuel, Published: 2014, in the British Journal of Health Psychology). In summary this research explores how optimism and positive illness perceptions can enhance well-being in Parkinson’s patients. It found that those with a more optimistic outlook experienced lower levels of depression and higher quality of life.
But…
That is science, not emotion…of course, it theoretically makes sense and of course, it is the thing to feels the right thing to say to people but how?
At the End of the Day I Rely on Three Things Personally
My Late Professor’s Words…
The first are the words of my late neurologist – Professor Giladi – “Make Parkinson’s part of your life, not your life”. It is easier said than done but I have too much to live for – my wife, my kids, my family, my team…I try to push the pain and the fear off and to box it in (you see I am now using scientific language). Each day is different but I fight to keep it from being front and center.
I can’t put myself in anyone else’s shoes but we all have our dose of bad times, stress, pain – it is different in each of us but it is there.
Self-Fulfilling Prophecy…
I am truly scared of the future – for me personally the idea of losing my dignity and control freaks me to the core. Yes – nappies if I am blunt and honest. In that respect, I can’t think of much worse than a diagnosis of PD…but I know that it will come much faster if I allow it to eat me.
I have limited firepower in my arsenal but I have firepower – I can research, I can work, I can exercise, I can do Yoga, I can focus away from the pain, I can take pills…I have to use the tools… I want to buy time.
Alongside this, I really see the amount of investment being ploughed into PD. It is massively ramping up and four weeks ago I received a huge step change benefit from it through the Produadopa pump. I am now looking actively to address the sleep issue.
If I fight and science fights there is a chance…if I give in there isn’t any…there really is no logical alternative.
Faith
For me (and I only speak for me) this is crucial. I don’t believe life is random – I have been given this challenge for some reason which I don’t understand nor need to understand…if I have been given it I must accept it and square up to it. In that respect, we all have that, each in our area. It is life and everyone has it – this is just my specific challenge. If given the choice I would unselect the checkbox but I don’t have that luxury.
Does this help anyone else…I don’t know. I can’t put myself in anyone else’s shoes and I can’t judge anyone else’s situation but from my perspective this is how I try to see things. I know many people have it far worse than me, genuinely, and in so many ways I am genuinely so blessed.
I hate it when anyone else says it to me…and you probably resent me for saying this. It is, however, my blog and you have the choice to read it or not so I will write it.
3 Responses
Ben
Yes?