A few months before I turned 40 - the age women begin to worry if they are still attractive and remain eager to receive compliments - I had to listen to some words that were not at all romantic: “You have Parkinson’s”.
I shed many tears asking myself again and again, “Why me? Have I been a bad person that I should be punished in this way?”. My feelings passed from sadness to anger and anxiety, the words “progressive” and “incurable” always before my eyes.
The first big change to my life was when I had to give up my role as an interpreter, a job that I loved. But it’s not only the symptoms, such as rigidity and tremor, that have such an impact on your life and change it so dramatically. Parkinson’s affects every tiny part of your daily life. You have to deal with anxiety, dizziness, blurred vision, constipation or diarrhoea, daily sleepiness and sleeplessness during the night, fatigue ... just to mention a few.
In the beginning, people who were close to me were shocked but tried to encourage me in the best way that they could. But as time passed by and the symptoms became stronger I felt that I didn’t fit any longer in that speedy high-tech-world where the key words are “more”, “faster”, “better”.
But is it really “better”? I found out that our clocks run differently. I have to concentrate now on each and every step if I don’t want to fall down and I cannot follow a TV movie, listen to the news on the radio and talk on the phone at the same time. Everything is done more slowly, with one thing following another. But that doesn’t mean that we’re “out”, that our lives are less worthy. It’s just that everybody has to find his or her way and I prefer quality rather than quantity.
Another example of how Parkinson’s affects what we can and can’t do: because of tremor and rigidity I drop many things. So I had to decide if I wanted to keep my souvenirs and memories in a cupboard where they can’t break, or to use them. I decided the latter and feel happy every time I hold an object in my hand and remember a nice place and a good time I had. But I know it’s just a material thing and that everything has its time.
Recently I celebrated my “half century” and I’m quite satisfied with myself. I have learned not to search for a reason why I have Parkinson’s but to accept it. I’m still using my language skills by helping the EPDA and I’m enjoying making scarves with the Batik printing technique. I also love doing Ikebana, the Japanese tradition of flower arranging. And the hours that I am with other people I’m conscious of and value each spoken word and every feeling we share.
