Unexplainable Loss

The other evening I was talking to Adam on the settee, not a big deep conversation just the normal chatter sparked by the TV programs. I’m so used to not being able to find the next word, that that has just become the way I talk, stutter, silence, words, stutter, words, silence, but on this occasion the words didn’t just vanish so there was a pause, all words vanished, I sat there totally lost not sure what to do or what was happening. I know it was only seconds but the first thing I said, well actually shouted, was “AHHH, I’m never going to talk again”, as I slammed my head down towards my knees, failing to even manage that as my head stopped a couple of inches above them. I was trying to remember the name of the rehab hospital for the forces not far from Glasgow, a place I have been, and I have raised money for in the past, but I could find nothing to even help the word appear. If that had been it and the word or others appeared, it would have been fine, but I was aware of searching madly in a total blank and suddenly that search stopped, there was totally nothing not even words in my mind circling to get there, nothing, a total void. It lasted seconds but I know it happened, and I know I have never had that happen before. The words that came out were the actual first words I found and they came from deep inside as a scream of fear. For seconds or even less that was my heart felt fear, that no words would appear and no voice would be able to get them out.

MS and many other illnesses effects the brain and speech is a normal thing to be attacked and to become difficult to impossible form or be understood. The closest I have seen to the way I feel is those who have had mild strokes, I recognise the look in their eyes, as they try to be understood, searching and trying desperately to push the words out of their mouths. I can empathise as I live there with them a lot of the time. My speech is very varied through out the day, the more tired I get the worse it gets. I hear in Adams voice a frequent frustration with me when I am at my worst and if he is tired to the snaps and jump-ins increase until I have to stop him as he winds me up more and more resulting in everything getting harder. We all forget words when talking from time to time and I am sure you know yourself that you do it to. I remember that annoying feeling from years ago myself, but this is so much more and so much more frustrating. I know, and I can prove it is a speech center problem as I can sit here and type endlessly without the same issues, the words spill out one after another with just the odd pause to think or correct.

We all take speech as an automatic process and a something that will be with us for life but that isn’t the truth for all of us. There is no hard or fast rule it could happen that I am the one talking if badly, to my end and you with normal health now, could be the one unable to form words, but the likely hood is the opposite. Being a progressive condition my speech will progressively worse, I fear that the seconds of the other evening will grow to minutes or even to forever.

Looking into myself and explaining to you or anyone else is hard if you have no near experience, the closest I can get is probably to say that it is a little like when you are in a deep sleep and someone is trying to wake you. In your head you hear their words, part of you is trying to answer and part pulls it into your sleep, desperately trying to fit it into your dream, so you can ignore it and muddling it up in your mind, reality and dream fighting each other. If you have understood that part, now add into it that the first part which is answering is distracted by the dream and it can’t get the words out. Now add frustration, then suddenly the dream disappears, what you are hearing makes sense but what is happening has turned to nothing, even the confusion vanishes because you know you are in a void, unable to go back to the dream and also unable to respond to the words you still hear.

I don’t know if it will ever be as bad as that again but the odds are it will and it will get worse. I hope that what I have written make sense to most of you as I feel I am writing about the unexplainable, but I have tried as I always do.

7 thoughts on “Unexplainable Loss

  1. You are an excellent writer. I found this post as you would expect upsetting as i can imagine ( or think I can what life is like for you However I know I can never grasp a full realisation. Thankyou for your post,I makes me feel that bit nearer to the truth

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  2. Another well-written and hard-hitting post.
    It must be very frightening for you to experience these things.
    Interestingly enough I heard something on the news today about an american who is trying to monitor the brainwaves of Stephen Hawking so that should he entirely lose the movement in his cheeks (this is how his speech machine interprets his speech now), then it could be reproduced by tapping into his brainwaves. I do hope that they are successful so that anybody who might need this technology can benefit from it in the future.
    Thanks once again for an articulate insight into your daily life and your trails and tribulations. xxx

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  3. That is my constant goal, understand of not just MS but I also believe an insight into other conditions with similar outcomes. None of us ever want to go through any of these things but the sad truth is we will in our life time meet many who will. I lucky have the ability to put it into written words and I feel I owe others, not just myself a voice, as long as I can translate it into descriptive images.

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  4. I won’t lie yes they can be frighting but I have been through so many things for the first time, that I expect first times to happen. My response to new things is to analysis and work out why if I can, once the panic settles. All technology advances are more than just welcome, but as you said it is making them available to those that need them in the future, unfortunately that means affordable, the one thing that new technology never is. They need to find a commercial spin off before that is possible, but fingers crossed for the future.

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  5. Yes, many believe that speech is automatic, but it’s a learned behavior. Because I am bilingual, I find that I/we use different parts of the brain when making utterances/sounds. Speaking requires feeling, logic, focus and physical movement – with the physical movement I feel being the last part in that process. Often I find myself completely silent for long stretches of ‘time’ as we humans perceive it. Being (a) silent (observer) helps me to drop into to my heart and not occupy my “head so much of the time. ~Many blessings…wishing you the best as we journey onward.

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  6. Yes! Yes! And yes! Being a sufferer of progressive Dysautonomias (dysregulation of the autonomic [automatic!] nervous system) what you speak of is typical of what we dysautonomics go through. Spot on!

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