Here I am sitting at my desk, scrolling through Facebook and doing my brain games online. Just an ordinary morning, in an ordinary life. A life that unexpectedly nearly six years ago, changed forever.
Reading the words that someone put together about how Parkinson’s is to them. Most of which I identified with. Words about the hidden things that others don’t see. The hesitation when I step on an escalator, though it is a fraction of a second, there is a lack of confidence, a little voice saying ‘is this safe?’ and so far it is. But, give me a choice would I use the elevator/lift? Some days yes I would, other days I proceed but with more caution than some, because I don’t want Parkinson’s to tell me I can’t do it.
My processing speed is slower, but it doesn’t stop me trying to learn new things, in fact I think it probably spurs me on. So, just because my brain is a bit slower now to process information, it doesn’t mean I am incapable of learning. It just makes me more determined to learn.
I have done a few kindnesses over the past few weeks. Small things like giving some of my swimming gear that I have two of to a person who needed them, didn’t ask but gratefully received them when offered. They kept telling me I was kind, so kind and were so grateful for my small and random act of kindness. I had one of my new friends from my morning swim come round to have coffee and play a game – Rummikub – with me. I recalled just before she came round that she has a very sick friend that she visits regularly. I make crocheted knee rugs, they are brightly coloured and just the right size to cover a lap in a chair or wheelchair. So, I offered one to her for her friend. She chose a bright pink and purple rug and was delighted and sure her friend would love it. She told me I was kind too, so kind. The other friend who also I met at swimming commented that I had done some kind things lately.
Maybe Parkinson’s makes me kinder? I don’t know. But, I feel the need to be kind, to show kindness to others and try to fill myself and my world with positive energy. I have given away some beautiful clothes this past year to another of my swimming friends for her daughter who needed some for work. Sure, I could have sold them, but it gave me pleasure to know I had helped someone who couldn’t afford a new wardrobe of clothes. I have been there and know how hard it can be to try to have a professional look on a very shoestring budget. As I said to one of my friends yesterday, ‘once I have spent the money on something, it doesn’t matter to me anymore. If someone needs something and I have it and don’t want or need it anymore I will often gift it and their receiver’s happiness is my happiness.’ A simple thankyou is all I need or want. Nothing more.
It is not that I am rich – far from it – but I have a richness in my life that money cannot buy. It is in the old friends I have that I see when we are able to get together. The family that I have and the life that I lead with people who care about me. The gifts that I am given every day in sharing my life with people who love me and who I love in return.
I appreciate the things I can do and try not to focus on the things that I can’t.
Parkinson’s has made me appreciate life so much more. There are adjustments to be had along the way, but setting realistic goals and making adjustments I can do more. Using walking poles when walking on a walking track, keeps me straighter and stronger to walk longer. Keeping up my swimming three times a week and socialising at the pool as well fuels my body and my soul. Being with people is as essential to my soul and my heart as food is important to my body. I have a need to be with people and I have become braver about fronting up to people I have met and offering my hand in friendship. I have been delighted that my friendship is welcomed when it is offered and returned in kind. I am building my community around me and it is not just a community that supports me, but a community that I can support with my random acts of kindness when I can.
There was a statement that I read this morning of a person saying to Parkinson’s ‘You’re part of my life – you are not all of me’. There is acceptance in there and for me that acceptance happened quite quickly. Denying it’s existence would never work for me. In accepting my diagnosis, I am able to plan and change and modify aspects of my life so that I continue to function effectively. You will not often find me focussing on what I may have to let go in this Parkinson’s life. I have my moments, but try for the most part to focus instead on the good things in my life. I have a good life, with love shared every day and I know I am valued by those that surround me and that my Parkinson’s mostly doesn’t rate a mention. It hides in the shadows and does not come into the light very often. It is a part of my life not all of my life and I aim for it to continue to be so for as long as I can.
So, today I will not celebrate World Parkinson’s Day as for many it is not a cause for celebration and is hard. It has it’s hard parts for all of us. I will, however, acknowledge its presence in my life with a determination that while it will never go away, it is not all I am about.
Here is a link to my podcast today.
My journey with Parkinsons 