Monday, 1 July 2013

Dan the Music Man

Dan the Music Man
By Henny Whitsun-Jones [formerly Goillon]

Welcome to Henny’s new blog.  I hope you will want to read my words regularly.  I will always try to entertain you and give you some food for thought at the same time.  There will be a different theme each time.   I like to write about what life is like for me as a wheelchair user with MS.  Not everything that I have to say makes comfortable reading for everybody, but that’s just too bad.

Recently an ’entertainer’ came to the nursing home where I live.  His name was Dan the Music Man.  Tall and thin and about 65 with balding head and glasses he wore a jaunty Hawaiian shirt, and intended to fill the next 1 ½ hours singing Frank Sinatra standards, thanks to his booming backing track.  As he crooned reedily into his microphone and attempted to jig about, I felt he had about as much stage presence as a piece of pipe lagging.  ’Now I know what retired postmen do with their spare time’, I thought.
But then I looked around me.  Did it really matter what I thought of the quality of the ’entertainment’?  The room was packed with wheelchairs containing some of the very ill people that I live with.  Many could not speak or control their limbs at all and yet they were very excited.  The sound of squeaks and cries of pleasure floated over the thump-thump of the music: arms and legs went everywhere.  Everyone was clearly having a great time and the good atmosphere was infectious so that I started to enjoy myself.

Only one young  man in a wheelchair sat motionless and unresponsive as usual.  Terry sits silently in the same spot every day, being fed by a machine through a tube in his stomach.  He cannot speak.  He responds if you call his name though his eyes roll wildly in his head, so no one knows how much he can understand.’ What is he really thinking?’, I asked myself for the umpteenth time.  There are many inscrutable beings in the world around us, many of them with MS, who do not speak or speak very much.  Without communication life becomes very very difficult.

My own speech has deteriorated a lot over the years.  I notice often nowadays that if something seems too difficult to say then I do not bother at all [sometimes too complicated or perhaps too long, or maybe too much background noise to compete with].  On the upside it certainly makes you choose words carefully and think before you speak, something I needed to improve on anyway.  One does not waste words because they become precious.
The speech therapist I was referred to through the MS centre was very helpful: she gave me loads of hints and tips to make communication easier, also exercises which I do to this day, especially before an important phone call or conversation.  Losing the ability to communicate altogether is something I dread but take heart, for it is possible to improve on what MS takes away.  With a positive attitude you can fight back.

July 2013

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