The architect, the builder and the saboteur

I try very  hard to explain to people how Aphasia affects me. They think it is just a speech impediment I have or they have met me before and say, 'what's happened to your speech? Why are you talking like that?' It is if I am putting on a silly voice.

I wish it hadn't happened but what has happened could have been so much worse, so I am grateful that a silly voice is all I have to show for my stroke. Well not all. My never ending struggle with background noise doesn't improve and I wear ear plugs now to try and block it out. I can't wear them all the time so something else has to be found but for the moment I am managing, just.

In trying to help myself come to terms with all this, and to support others like me, I started this blog. But out there are people who don't know what Aphasia is, or what it does to people and most of all the affect it has on them.

These are people who probably know someone with Aphasia or even care for someone with it, but the actual problems faced by an Aphasic is lost on them.

I have written this next bit to try and explain what background noise is like to me. I can't say it has the same affect on everyone with the problem as we are all different but I know how I feel and this is how I see it.

All communication comes from ideas gleaned from what goes on around us. We glean these from what we see, what we hear, what we feel and what we taste. The ideas are taken by our architect in the brain who draws up the plan for the builder to assemble into the different modes of communication; words, facial expression, gestures and sign language.


Think then what happens if a saboteur in the form of excessive back ground noise disrupts the work of the architect. As he draws up his plans he is bombarded with overwhelming noise that interrupts the other information that he needs to draw up the plans, so these plans become increasingly flawed.


As the saboteur keeps up his work the builder receives more and more defective plans to work with and increasingly the work starts to fall apart. The architect downs tools and refuses to work under the stressful conditions leaving the builder nothing to work with so, he too, goes on strike.

Only the saboteur is the winner in the power struggle.

 

Please insert she for he as appropriate!

Now if you think I have gone mad, I am sorry but essentially this is what is happening. We learn from a young age that what we see, what we hear, what we touch and what we taste will be the information that we work from and with for ever. We learn that sugar is sweet, so every time we see or taste sugar we know it is sugar. The taste is familiar and the look is familiar so it must be - sugar. Lemons are bitter, they are yellow and they look like a small  rugby ball. So when we taste or see one we know that it is a lemon.

Words are like that. We see them written down, hear them spoken, taste them as we pronounce them and feel them as we visualise them. If I close my eyes and hear the word rain to me it get a picture of wetness on my face and the smells of hot pavements and wet grass. 

If there is a lot of background noise I can't hear the word and I have nothing to imagine. So my architect is slaving away in very unsatisfactory conditions against the saboteur and sending defective words down to the builder who cannot make anything fit together. When the architect goes on strike the poor builder has less and less to construct with until, he too, can go no further and stops. 

That is when I can't talk any more because I have no words to say as they have been sabotaged and as I say I am very fluent in gibberish!

I went to the Trefoil Guild meeting this evening and met some wonderful ladies. They were wonderful in accepting me and helping me. Once only did I get upset because I couldn't make myself understood, but we got there in the end.

Tonight we had a speaker from the charity Canine Partners. These are assistance dogs for the disabled. We met a gorgeous black labrador called Whiskey who helps his owner Karenza at home.

She too uses an  electric wheelchair and has encountered people who do the 'does she take sugar" syndrome. I agreed with her as sometimes I feel I get the virtual pat on the head of there there. Her talk was interesting and an eye opener for us in the amount of time it takes to train the puppies and the length of time a disabled person has to wait for one. The guild are planning a visit to the training centre at Midhurst in Sussex and there is, she says, no opportunity to sneak a puppy home! Damn!

Karenza's situation is different to mine as my Aphasia is different from other Aphasics. But deep down we are basically the same. We all struggle daily, we all have highs and lows, we all want to be accepted in society. She said she has days when very tired that her speech is not as good as other days. My starts from a different starting point and goes down. But we both have architects and builders who are sabotaged by the saboteur. And when we are at our lowest, there is only one winner - the saboteur.