THE BLOG

There's No Room at the Inn!

23/12/2014 06:05 | Updated 21 February 2015

I would like to start by wishing everyone celebrating Chanukah or Christmas, seasonal greetings and may you enjoy the holiday season that is upon us once more. With the year 2015 just around the corner, it's at this time of the year, when most people are surrounded by their families, we should pay close attention to those who may be alone and in times of need. Suffering chronic health issues and being by yourself, compounded by the festive spirit that yearly accompanies the month of December, may prove a difficult and painfully lonely time for some people. So have a thought for anyone you know less fortunate than yourself, and extend an invitation. One more around the table won't make any difference, but it could mean the world to a person who hasn't been included and otherwise would be spending this time alone.

As adults we often view loneliness as a sign of failure, and a successful person is surrounded by a multitude of friends. In reality, this is not the case, for generally one has only a small handful of what can be considered loyal good friends, the others are merely acquaintances. Being alone can result from a multitude of circumstances which bear no relevance to a person's character or considered success, such as moving to a new area, being newly divorced or widowed, or becoming seriously ill, to name just a few of life changing situations that can result in one becoming isolated.

Children with few inhibitions, are more open to making new friends. I remember travelling abroad with my parents for a period, where I found myself bored and lonely. However, it didn't take me long to find a girl of my age to play with, although we couldn't talk, for neither of us spoke the same language, but through play, we were able to communicate. It's a shame we lose this skill as we pass from childhood into adulthood.

Some young children have an imaginary invisible friend, who for various reasons emerge, becoming almost part of the family, accompanying the child while they grow up, until the need for this friend diminishes. I didn't have such a friend when I was little, but at the age of five, I was diagnosed with Gaucher disease, although having a rare genetic disorder can hardly be classified as a friend!

I have been living my entire life with Gaucher disease and am now 51 years old. Thankfully a treatment administered by infusion became available some years ago, enabling Gaucher Type 1 patients, to live a pretty normal life. People who are diagnosed early, today are able to begin treatment at a young age, hence preventing the disease from causing any irreversible damage. The enzyme replacement therapy was invented somewhat too late for me, and in particular my bones have deteriorated and cause me constant pain. I am therefore a good example why diagnosis at a young age is so important, for if the treatment begins early on in life, the remarkable difference this can make to one's mobility and quality of life is significant.

When I was further diagnosed with Parkinson's disease at the age of 44, it was just a little too much to take in. News like this, one can well do without and was a hard pill to swallow. It took a while for my family and I to adjust to the life changing situation, but it's surprising what one can adapt to, when given no choice.

Gaucher and I have learnt how to live with each other over the years, but add a third dimension into the equation, and three definitely becomes a crowd! So Gaucher and I decided that Parkinson's is cramping our style, a third wheel who is not welcome. Wouldn't it be a great way to finish the year 2014, if all those suffering Parkinson's received the best present they could ever hope for; a cure to this nasty deteriorating disease. Sorry Parkinson's, but you simply have to go; move on, this is not a hotel or guest house, you are not wanted, there's no room at the Inn!

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