Having received several letters by post addressed to a lady who died a few years ago, I made the effort to go to our local post office. Catching the attention of a clerk who was plodding through piles of mail, I explained we continue to receive letters for someone who is no longer here. “No problem, madam” the clerk assured me. Relieved to hear a simple solution, I handed the letter over to the young man, who with an air of authority pressed a large rubber stamp onto an ink pad and with a resounding thump marked the envelope. “What is the forwarding address?” he asked me. “There is no forwarding address” I replied in disbelief. “This lady has passed on.” I said with irritation, thinking I had made it plainly clear from the start. To clarify, I bluntly said “The lady is dead.” The young man stopped in his tracks, looked at me intensely for a moment and then asked, “So there is no forwarding address?” Feeling this conversation had reached a point beyond absurd, as if I were in a Monty Python sketch, I curtly replied “Unless the post office has an address for heaven, then no, there is no forwarding address!” Not amused by my dry British humour he filled in the empty space with ‘deceased’. By Jove, I thought, he’s finally got it!
Making one’s self clear and getting across a simple message can sometimes be painfully difficult. So imagine how hard it is explaining to those who do not suffer from Parkinson’s and Gaucher, or any debilitating disease, that just getting through the day is an achievement. Despite my condition I remain positive and make the best of a bad situation. Having a sense of humour and a smile on my face, is the only way I know how to live. I have to admit, that looking from a stranger’s viewpoint, my façade does not give away much hint of my true condition, and only when I'm caught on a bad day, or when experiencing an “off” time due to Parkinson’s, would a person get a clue how I struggle and battle two diseases. I continue to write and tell my story, as do others in similar circumstances. Emma Rooney, an amazing young woman living with Gaucher disease is also a storyteller and an inspiration.
If you live with Parkinson's disease, you will no doubt understand the harsh realities that accompany it. This week I speak of the isolation one can feel in my article in The Huffington Post.