Thursday, 25 February 2016
HOW I COPE
When something like Polio (which I had when I was seven) or Parkinson's Disease (which was diagnosed at the age 54 but which, looking back, I am sure I had when I was 48) comes along, how does one cope? Not only physically but most important, mentally?
In many ways, as a Parkinson's "sufferer" (and I use that word guardedly), I was fortunate to have had Polio because, to a certain extent, it prepared me for Parkinson's. When I was seven, my knowledge of life was very limited; it was based on my existence at home and at school. I had little or no concept of the world at large and so, when I lost the use of my right hand (temporarily as it turned out), I did not think to myself "Oh my God, I shall never be a great sportsman, I shall never be attractive to girls, I shall never be able to pick things up from the ground between my finger and thumb, I shall never be able to throw a cricket ball, wipe my bum, masturbate, play the piano or hold my pen like other people do". I was too young to make those comparisons. Of course, I may have been a very phlegmatic, accepting and calm person and so, if it had happened at say the age of 33 , I might have been more affected and depressed by these sudden limitations. But, overall, I think that having had Polio, I was given a taste of a life without which made it easier to adapt to PD later in life.
Nevertheless, I still had to cope with PD on top of the limitations already imposed by Polio. How did I cope? I was realistic. I knew that, in time, I would end up in a wheelchair and that I would be incontinent and possibly suffer from Dementia as a direct cause of the illness. I was reminded each day, each hour, each minute and each second that I had a debilitating illness by my inability to do even the most seemingly simple tasks such as doing up the buttons of my shirt, cleaning my teeth, tying my shoelaces, speaking to people, eating food (especially spaghetti or meat that needed cutting). Potentially, this was a miserable state of affairs. However, I did not sit down and say to myself "Right, let's devise a plan of action to cope with all this - one, start photographic project, two, make Zorro films, three, wear incontinence pants". But I was lucky for the second time in my life. Having PD mean that I was able to retire and being able to retire meant that I could do all the things I wanted to do but never had the the time i.e. watch cricket, go to the cinema and go out and have a coffee and do the crossword. As it happened, these things were not enough as they were all solitary experiences and I missed the daily, hourly contact with other human beings. So, when my photographic project came along, off I went into to the stratosphere. In the middle of all this, I had a very significant meeting. I had been seeing a speech therapist for some weeks and one day, she asked me how I had been and I said "Ok but I have just joined a local cinema club and when I walked in and bought my plastic glass of wine, I felt very conscious as I walked to my seat, that I was shaking and I thought all my friends were looking at me thinking there's poor Tim with his Parkinson's" The speech therapist said immediately "Tim, you're not the Tim you were, you are Tim with Parkinson's and the sooner you accept that fact the better" It changed my life almost immediately.
Now, I know that everyone is different and has had different experiences in their life and may not have had the good fortune to have been born with a positive outlook on life or to have had Polio at the age of seven but I do feel that, if any ailment should befall you such as PD or any other permanent debilitating condition, if you can accept that fact and yet, at the same time, carry on creating things to do, it will keep any possible depression at bay. It is a vicious circle - if you are depressed about your condition, you will not be able to be creative. Equally, if you are aware of your condition but don't allow it to dominate your thoughts or your intercourse with friends and acquaintances, you will become more positive and open your mind to more creative thoughts and pursuits.
I was lucky. I fully accept that. But I do believe that others not so lucky can make a life for themselves if they manage not to allow negative thoughts about their condition to dominate but instead to run alongside positivity. Those negative thoughts will never disappear, I know that. Just don't let them win.