This month it is 12 years ago since I was diagnosed with Parkinson’s.
For most illnesses there is a better outlook – that of healing. For most illnesses there is light at the end of the tunnel. Not for Parkinson’s. It slowly gets worse and worse. The day I got diagnosed with this nasty disease I though, “This is no joke.” It turned out not to be one. Everything physical I do is difficult. Everything. From putting on my jeans to putting on my shoes. From something as simple as making my bed or washing the dishes.
This is a downhill journey all the way. With the side effects of the medication at times more troubling then the disease.
I do not complain and I seldom talk about it. I feel very private about it, even a bit ashamed. Why ashamed? Because all of my life I have been healthy and strong. I hardly ever had to see a doctor. Now they virtually run my life.
But my gait is becoming more and more weird and soon I won’t be able hide the fact anymore. Thus I thought I would explain it to my readers why this shuffling instead of walking. So, this is not a feeling sorry for myself rant; this is a window into the home of Parkinson’s and its happenings.
A while ago I decided to call my Parkinson’s disease my Parkinson’s gift. This immediately changed the story because a disease makes you a victim while with a gift something can be done. It holds a promise somehow. I know I am kidding myself but on the other hand, positive thought is a powerful tool.
In this case I see the gift as the learning which is offered. I know one can learn from almost any situation, but this one is important since it holds the most intense of all learnings – the learning of letting go. Lately I had to let go of some of my skills as a ceramicist with which I have sustained myself for the largest part of my life. This one really got to me. But I battle on and remember the saying: “this moment is alright”. Plus, there is always something to express my creative spirit which always creates a feeling of achievement and of satisfaction. The creative spirit without which it wouldn’t be worth living.
In the beginning of my journey with the nasty PD, I thought since we as a culture are able to fly a spacecraft around Mars, they surely are able to find a cure for Parkinson’s. However so far this has eluded the scientists. They don’t even know where it comes from, nor why you get it.
The doctors have divided the gift of Parkinson’s into three parts.
Stage one. Easy to manage with drugs. Drugs? Cool!
Stage two. The timing and dose and managing the medication becomes of great importance.
Stage three. Problems that do not respond to medication, e.g. autonomic function of bowels, bladder, blood pressure and swallowing.
Then there is this – balance and falls start to play a big and annoying role. These are no dancing steps. This is no tango or romantic waltz. There is nothing romantic about Parkinson’s. But there are two ways to this balance and falling number. The action of moving from the state of upright into another state, bending down for instance, creates the probability of a fall. Then we have the freezing of the gait, which is like a stutter. You momentarily can’t move, it feels as though your feet are stuck to the floor. This behaviour also promotes falls.
It is the same with language and speech – they become less fluid, as does my memory. Hence whereas I could present a speech with ease, now I have to read it. That is also why I have to read instead of recite the slam short stories. Then related to that is my writing. To write a story I have a terrible problem with my writing skills, everything needs the keyboard and even that presents problems in that I all the time hit the wrong keys.
Stress increases the problem. Stress is poison. So my biggest and most important activity is to reduce stress.
In the meantime I continue to work in my studio, where I work on another ceramic exhibition, with simple skills. I have also been working on a public sculpture at the short listed stage. I could not let it go by. I’m giving it one more shot and clinging onto the ability to stay at home. I couldn’t think of leaving my house and studio.
A strange thing is that my writing is getting smaller and smaller. I feel occasionally that I am disappearing into the full stop at the end of one my sentences.