Seven good years?
It is in human nature to try to see patterns in the events that make up our lives. We try to create order in what would otherwise be chaos. I think we need that in order to feel some kind of control.
Parkinson’s disease is, after all, relatively unknown among the general public. The first symptoms are very vague, and there can be many reasons why one feels the way one does. Those of us who have Parkinson’s disease know that the symptoms and the course of the disease also vary greatly between individuals. Vague symptoms or not, most people eventually realise that it is best to ask someone who actually knows. You need to know how things really are. Not live in uncertainty. Away with one’s own explanatory models, more or less credible as they may be. One needs to have one’s fears either confirmed or dismissed.
The big question is what the future will be like. How long will I be able to live the way I do today? Is there anything that can slow it down, or a cure? Am I going to die? Our desire to know how things will turn out — I was about to say — sometimes takes on almost biblical proportions. It is not uncommon to express the future perspective in terms of a number of good years. That was what triggered the biblical reference — the Old Testament’s seven good years and seven bad years.
I received my Parkinson’s diagnosis on 20 August 2006. Being a healthcare professional myself, I had not thought about what the future would be like for me. I knew. I had seen my own future in the form of people with Parkinson’s. Propped up in a wheelchair, hanging limply to one side. About to slide down onto the floor. With drool constantly running from the mouth. Unresponsive. The neurologist who diagnosed me said comfortingly, “But as a rule, you have five good years before you get worse.” Just as she said those words, she caught herself. “Though that is no comfort to a tiger heart,” she added.
During the eighteen years that have passed since I learned that I have Parkinson’s disease, I have understood that the good years have been extended somewhat. Personally, I have not yet reached the “bad years”. The question is whether I ever will. “Yes, but you have a pump and everything else one can imagine,” the “friend of order” objects.
Exactly. I have massive medication. Breakfast consists, among other things, of ten tablets. I receive continuous dosing of L-dopa and Entacapone via a pump directly into the duodenum, where absorption takes place. And I feel well. I have a rich life. There is not much I cannot do that I did before. Because it is not the tablets and the pump that define the good or bad years. We all have good and bad years. Whether we have Parkinson’s or not.
Perhaps it is time to stop speaking in terms of good or bad years. Instead, see the individual and what is best for him or her. So that it is possible to continue living normally, with joy, loving encounters, sorrows and hardships, and perfectly ordinary everyday days.
Bromma, 1 May 2024
Eleonor Högström