Living with Parkinson’s means that a large part of life is affected. That impact may be greater or smaller, come early or late, but it is there.
When I received my diagnosis, it felt like a relief to finally have an explanation for everything that was happening to me. I am thinking of the physical change, with a body that became stiff, slow and clumsy. I am also thinking of cognitive phenomena, such as how it became difficult to take part in conversations because it took a little longer to find words.
Alongside the relief, there is grief over the disease and how it will affect life. That grief came with the diagnosis. I understood that my life would change, and that there was a strong chance that Parkinson’s would put a stop to what I had planned for the future. How quickly it would happen, I did not know, but that it would happen was left in no doubt by the diagnosis. I realised that it would not be an easy journey, and that the struggle Parkinson’s brought with it would continue for the rest of my life.
This summer marks five years since I received my diagnosis. The five years that have passed are the ones often mentioned by neurologists as a period during which tablet treatment works well and life with Parkinson’s is manageable. Yet no one can say at the beginning what those first five years will be like. Perhaps that is why those years become such a significant milestone.
At the same time, it is hard to know how you will react, how it will feel when you realise you are approaching the five-year mark. No one knows, and that is probably a good thing.
For me, these five years have brought quite a lot of change. Five years during which I have, at times, had to struggle with what Parkinson’s has done and continues to do to me. Five years during which I have written on my blog, My life with Parkinson’s, and shared my everyday life, my experiences, thoughts and reflections.
But I have not written, not told very much, about the grief over the loss of what could have been.
That has been, and still is, a conscious choice.
In the same way, it is an active choice that I write when I feel well, when I feel positive, so as not to get stuck in all the negativity that the disease brings. But not every day is a good day, and on those days it is easy for my basically positive outlook on life to disappear. That is one of the consequences when grief over what has been lost makes itself known.
When I reflect on why I do not write about grief in the blog, but only mention it, it has occurred to me that perhaps this makes grief into a word without meaning. That is absolutely not what I intended.
For me, the grief is there, and I think it is important to allow oneself to grieve. But I also believe that one must be careful not to get stuck in it. At the same time, perhaps grief over what one has lost is too personal to share with others?
I think that is how it is for me. I feel that it is okay to say that I grieve what could have been, but how I think, what worries me, what the grief consists of, what triggers it — I want to keep that to myself. But the moments are there, and I let them come. I reflect, but I never allow them to become too long.
When I am in a period of grief, it is difficult for me to share my life, my thoughts and my reflections. Thoughts that can become quite dark, because it is hard to realise what the disease takes away from you. But they are part of what the diagnosis has brought with it, so I place the negative thoughts alongside the grief and allow them to exist. Just as I need to find the positive in life, how I can create opportunities and solutions, and how that gives me life back.
But it is an art to allow oneself to grieve and still manage to leave the dark thoughts behind and move on in life. It is not about shaking it off, or pretending that what you have lost does not exist. It is about living with the conditions life has given you. Refusing to let a disease stop life from continuing.
So when grief over what could have been makes itself known, I would be lying if I said I welcome it, because I do not. But I do allow myself to acknowledge that I am grieving and that I think life is unfair. Because it certainly is.
But I refuse to stay there in the grief and dwell on it, because that does not give me back what I have lost. I shift my focus to what I have, and how I can move forward.
Greetings from the West Coast on a grey, rain-heavy morning in July.
Cecilia