Friday, 2 March 2012

A Fresh Start for People with MS


So why am I writing this article? I was asked to share my personal response to the new building. So here goes...

I remember coming through the swishy doors for the first time: I had already been wowed by the outside appearance of the new building and entrance. I remember looking around the light and airy entrance space, and all the very modern light and glass to be seen whilst looking up to the first floor. I felt tears pricking behind my eyes and a wave of emotion swept over me. I heard a voice in my head which kept repeating the same phrase over and over again and that phrase was, ‘ people with MS DO matter, we DO matter’, and this after years of experiencing the opposite in society in general: feeling ignored and side-lined by health professionals and the general public alike.
                                                                                                                                                  It was a very emotional moment. Yes, of course problems have come to light since I experienced that first heady moment and these will undoubtedly take time to fix. Without a carpet the entrance hall has a rather chilly and unwelcoming feel to it at the moment: the circular meeting table from the old ‘shed’ looks as though it has shrunk in the wash. But it is early days yet and fortunately patience is something that MS patients have in spades, so this needn't faze us too much.

What is more difficult to digest is the sheer enormity of the change that has taken place. For once the genie is out of the bottle, you cannot put it back again. This started me thinking about the nature of change, as there seemed to be parallels here with what is going on in my own life at the moment: I stand on the brink of a huge change myself, being the change from home life to life in a residential care setting. Why is change so flipping difficult? And frightening?

It seemed to me that what occupied my thoughts the most was all the things that I was potentially losing (cosy and familiar home environment, familiar carers, presence of children and family) rather than all the potential gains (better adapted environment, regular carers with no need for onerous management by me, improved family relationships). Fear was masking the opportunities. The known seemed less threatening than the unknown. I think it is probably the same with any change, including the change to the new MS centre building. It is the transition phase that is the most difficult for all concerned, especially because it happens quite slowly. All one can do is mourn how things used to be whilst looking backwards and not celebrate how they could be in future with  new opportunities. I realised that I must apply this learning to my own situation too.  What we all need to cope with the changes are two things: patience and courage. Luckily, from their experience of life, MS patients have these qualities in spades: this is where we can really help our new centre which will need our support here.

Henny Goillon 

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