Hi. This is a message to my family and also perhaps to yours. Obviously, not everyone has a blog, but perhaps you have recorded your thoughts and feelings in another way. I know after my Mum passed away and probably quite some time later I found I had a box which contained her diaries from the 70’s and 80’s, the time of my infamous teenage years!
I say now, hand on heart that I admit that I read some of the diaries and they were an interesting exercise in understanding at least in part how my Mum viewed her life at the time. I found an entry which talked about how Dad had had to give up work because of some symptoms which shortly after were identified as symptoms of Parkinson’s. My Mum was not given to outward showing of emotion or affection and so not a lot of emotive language was used, but it was interesting to get some sort of insight in her own words. I don’t think we ever openly discussed what my Dad’s diagnosis meant for her and how she felt. We had a difficult relationship in my teenage years and it really never occurred to me to talk about it. I think perhaps because Dad was probably diagnosed reasonably early on, but maybe they chose not to tell us until things became more obvious? My older brothers might know.
Sometimes it is difficult as parents for us to find a place and a space to say to our children how they affected us in their teenage years. I found some entries about myself within the pages of the notebook – I must admit I approached them with much trepidation – I was not an easy teenager to live with!
All credit to Mum she didn’t put down anywhere near the amount of bad behaviour on my part that occurred. Perhaps she knew that one day perhaps one of us would read them? I was a difficult teen. I hold my hand up to that one. I won’t put in any incriminating detail just now! Perhaps that is for my memoirs?? She did talk a bit about my first marriage and talked about my children as they came along, so it was nice that she recorded the good stuff!
So, I never really identified with my Mother, nor she with me. We were so very, very different, that I don’t think either of us really understood the other and I always felt a distance between us. We never – that I can remember – said ‘I love you!’ something I said daily to my children as I had keenly felt the loss of those words. I say these things not to chastise my Mum posthumously, but this was just the way things were.
It is often the case that we don’t think about our parents as people – if that makes sense – until we find ourselves in similar situations. I certainly didn’t appreciate how difficult it would be for my Mum to have me as a teenager, till I had a teenage daughter myself. I had a newfound sympathy for her when I had my own experience. I know when I became an adult and a parent myself it was then that I started asking Mum about how she met my Dad, their ‘courting’ and marriage and generally expressed an interest in their lives prior to becoming our Mum and Dad. Isn’t it often the way, that it is not until we lose someone that we might regret not asking the questions that showed us who they really were and what shaped them?
This topic came about from a chance conversation I had with one of the ladies I have got to know, who comes to the pool to exercise on the same day I do. She said to me that she had been struggling with the reality of getting older and perhaps of time running out. She was looking for a positive way to capture her thoughts and feelings and was looking into writing her memoirs. Not for publication, but for her to look back on her life and explore what that life had been like. Perhaps in this way, she could value the path on the way to where she is now, rather than focussing on what she sees as the few years she may have left. She asked me if I had any ideas on how to go about this and I agreed to put her onto someone I know who may be able to help.
Later today, I started thinking about my own life and what I would want my children and other family members to know. The best way I can think of them getting to know the real me is to read this blog and to listen to my podcasts. To read my poems and understand what life for me has been like since my diagnosis. My family very rarely ask about my Parkinson’s, perhaps because for them they may not see many symptoms that make it more obvious. That much is true. But the symptoms and my reactions to them are written throughout this blog. Over 600 entries and most of them an outlet for my thoughts and feelings.
Obviously at 65 years of age, there are many years prior to my diagnosis which I could dissect and share with them, but I feel I have probably spoken about a lot of my life with them in the past. Just as people talk about the ‘formative years’ when growing up, the ‘formative years’ post diagnosis, has been the past nearly six years. They have shaped and changed me into a very different person than I was prior. My diagnosis has made me want to be a better person. To focus on family and want to spend more time with them. Prior to diagnosis, I think I was more self absorbed than I am now and this blog – it may surprise my family if they are reading this – has helped me immensely to channel my thoughts and feelings into this blog and in doing so I transfer it from my thoughts and let go. Prior to writing my blog, the thoughts – especially if negative – would have whurred round and round in my head with no resolution. This blog has saved my life and my sanity, it gives me purpose and it helps me to process what is happening to me. Then I let it go and get on with my life.
Too often as we get older we find we regret not knowing more about our parents and those that came before them, our family history. When we are younger and going through the teenage years life it seems is more often about us than anyone else in our lives. What we want and what we need. It is perhaps not until we get older and often experience parenthood firsthand that we have any kind of understanding about our parents’ lives. It is as we get older and we start to lose members of the previous generation that we realise we don’t know a lot about those that came before us. No-one who has that knowledge may be left to tell the stories and history of our families.
One thing I have often said to my husband is that I want my children to be proud of me. To see that I try to do good in my life and care about and support others. I hope they realise that in writing this blog, that I am not doing it for the good of my ego in talking about myself. It is an honest attempt to analyse and work through issues relating to my experiences with having this condition. But, more than that, it is an attempt in the honest telling of my story to help others who have Parkinson’s who may find reading my experiences can help them deal with their own issues and know they are not alone.
Perhaps if you haven’t already done so, it might be a good idea to write down some thoughts about your diagnosis, but more than that about your life and your experiences throughout that life. Too many of us come to be in our 40’s or thereabouts and regret that we hadn’t taken the opportunity to know our parents as people and more about our family as a whole.
So, my family I hope will read my blog posts and check out my podcasts on spotify ‘My journey with Parkinson’s’ and also ‘Parkies Patter – a chat about all things Parkinsons’. It may well give them some insight into who I really am.
My journey with Parkinsons 