Sunday, 25 January 2015

Thinking out loud

I didn't think the day would come when I would sit down to write this post. We have been through plenty, and this is another step in our journey.
You may have seen the teamgib status yesterday about how Carl's voice is deteriorating. As always, he wants to keep his sense of humour and he wouldn't have it another way. 
But the true fact of the matter is, MND doesn't just make your voice worse. It takes it away. It literally stops you speaking. A simple yes or no takes effort like you could never imagine. If the word does make it out of your mouth, you are left gasping like you've just conquered a mountain climb.... The conversation may have already moved on, or your response guessed in the time it took your mouth to let the word your brain processed some time ago escape. 
It's with this in mind that this weekend I have wondered - what would you say if you knew your voice was going to disappear forever? Who would you talk to and what would be the lasting impression you wanted them to have of you?
If you knew a voice you loved to hear would disappear and you would have to communicate with your eyes, how would you imprint that voice on your mind? The voice which made the wedding vows, or the voice you hear on the end of the phone at the end of a long day, the voice which asks if you would like a cup of tea, or the voice which tells the funniest joke you have ever heard.... Can you hear it even when it isn't there?
MND doesn't even give you that luxury. It chips away and then steams in and before you know it, you are left praying to hear one simple word. It may cause exhaustion, the conversation may be the slowest you have ever had but when you know there could be an end to the voice, every word is the most important you have ever heard. 
Of course, there's technology. But remember, you can't tap away at what's app or pour your feelings into a blog post because your fingers don't work either. 
We are all guilty of taking many things for granted, but would anybody ever class their own voice as one of these things? I certainly haven't. People talk openly about freedom of speech, but do they ever think about what the removal of this forever could mean? 

Communication can be done in many different forms. Myself and Carl are already proud of ourselves when we can manage a conversation with no words at all..... But at the same time, we are busily fitting a life time of words in to the time we have available.  
It's not just the I love yous that are important. These aren't the words which make a person a person, or the words that gel you together. If you love each other enough you don't always need to say it. It's the jokes, the laughs and the little moments, even the arguments which are important. 
Really, your voice is the thing that makes you you. It's the thing that allows you to express yourself, and to interact with others. 
We all know what our loved ones sound like, and I don't think we would ever sit and think about how the sound of their voice is an amazing thing..... But, once again, MND has made me realise in the most terrible way, that our voice is amazing and I will listen to my husbands every day for as long as I can. No matter how hard, how slow the conversation is or even if it ends with noises rather than words they all now count. And when the words dry up and there are no noises left, we will take the next stepping stone in our journey.



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