Let’s talk about Parkinson’s… and life and all that means

I’m feeling in a very reflective mood right now. Not exactly sure why, but maybe that’s my brain getting itself ready for work tomorrow? It has been on light duties for the past nine weeks, so I hope it is up to stepping up several gears and doing some proper thinking and decision making!

One of the things I think I appreciated most in interacting with people on our holiday, is those of our family and friends who took the time to ask me about my Parkinson’s. Some just asked me how I was doing and I responded as best I could. However, others engaged in proper conversations about how I recognised that there was something amiss that lead me to going to my GP to set the wheels in motion for diagnosis. We had some good conversations and I found that I really appreciated them showing an interest. It’s good to see that they had a genuine interest in the condition and perhaps in telling my story and sharing my thoughts and experiences, they may have a better understanding if they come across others with Parkinson’s.

It had been six years since we had seen our family and friends in the UK and a lot has certainly happened for us as a couple and for our family. There were two incredibly significant events that had a particularly difficult impact on our lives. The first was in October 2020 when my oldest son passed away in his sleep. A huge shock to us all and something we will never completely recover from. The second of course was the diagnosis of Parkinson’s in December 2020. Combined with significant lockdowns in the same year and the stress of buying and selling houses, it is a wonder we have made it through at times.

One thing I noticed, was that if I started talking about my son Adam and started to get a bit emotional and a bit teary that people would stop me and say, ‘don’t talk about it if it upsets you!’ I know that they meant well and were thinking of me when they said this, but it does set me thinking. Are we as a society uncomfortable with sharing another person’s grief? Do we not know how to deal with these conversations? I know that I for one will always want to talk about my son and to keep his memory alive. I will in all likelihood always get emotional to varying degrees. I know in my work, I never say to someone when they start crying, ‘Don’t cry!’ as I feel that this almost removes ‘permission’ to do so.

Personally, if I start to talk about my son and start to get emotional, I would prefer for people to acknowledge my grief in the loss of my son, rather than voicing that maybe I shouldn’t talk about it? Why is it that we are comfortable with just about every other human emotion, but not with sadness and grief? There is a thing called ‘disenfranchised grief’ an explanation of which I found as follows:

‘Disenfranchised grief is when your grieving doesn’t fit in with your larger society’s attitude about dealing with death and loss.’

Perhaps the people I spoke to felt it wasn’t the time and place for me to acknowledge my grief in a public setting?

There is also a thing called ‘cumulative grief’ as follows:

‘When you are dealt multiple losses, grieving each one becomes much harder. In an ideal world, you get the chance to heal from one loss before you have to deal with another…’

The year 2020 was one which certainly fits the definition of cumulative grief. With COVID and the losses incurred to personal freedoms, selling our home and moving, losing my son and then my diagnosis, we had situations of grief stacking up one on top of the other. It simmers just below the surface at all times. For me, the worst thing that could happen is for someone to attempt – with the best of intentions – to stop me acknowledging my grief.

Life can be wonderful – and it certainly often is – but amongst the wonderful there will be harder times too. It is important that we acknowledge the tough stuff as well as the good or we create a fantasy world that is unsustainable.