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Learning to talk again

One of the more frustrating issues with this disease is the ability to communicate.

I love to talk. To talk about anything really. Be it a movie I saw, the book I am writing or just the weather. But when you’re bedridden and closed off from the world, communication is vital.

Now, with this disease, it has a tendency to pick and choose what it wants to play with next. Think of a cat finding a new mouse. It swats it once, let’s it scamper away and then pounces again, just to see the fear it produces. That’s what it’s like with this disease, it finds something new and gives it a wack and then another.

The new mouse that MS has picked is my speech.

When I talk my words start to slur, as if I just had a few pints at the local pub. I mumble and my voice softens as it takes too much strength to be heard. They think I am a drunk, looking for another beer. Little do they know I am screaming in frustration inside.

When I try to explain a book I just read, how excited I am at it’s wonderful conclusion and so we sit down with a cup of coffee to talk. I open my mouth and the words are circulating in my head, the chapters are all coming into place and then nothing..... I cannot go into details, my mind goes dark, an empty room. I scramble and try my hardest but then the words start to collide with each other. I stutter almost. Soon it sounds like I am talking in a different language. I scream in desperation inside.

I find it hard to remember words. Yes, as strange as that sounds as I write books and I have no problems doing so. But when I try to talk, I simply, without a doubt, cannot remember half of the English language. I instead have to rely on simple words, nothing too complex.

Keep it simple, keep it safe.

Now when I talk, I have to talk slower when I need to go into details. As the details of anything will trip me up, it will twist my tongue and over tax my brain.

When I want to talk to my doctor on the phone, I have to write down everything I want to say. As reading from a piece of paper will solve my issues.

I often text people, as I can write and write and write and it lets me fly above my troubles. I grow wings and I never want to touch land again.

This disease is frustrating, it’s never ending hunger will do it’s best to make you cry.

You can’t let it, you have to find your own wings and fly above it. Do what you can, and in time you will win.

One word at a time.

  1. This is nothing short of beautiful Thomas Bellas, I can tell that you're a writer and your words brought me along the journey that you experience.

    The cat and mouse analogy brings to light what the symptoms of m.s. can be like, not to mention the cruelty of the disease. It is truly frustrating and always a guessing game. A game that none of us given the choice, would want to participate in.

    I feel honored that you let us see into this part of your life and how it impacts your speech and words that are so very important and I very much appreciate what you said that: we have to find our own wings and fly above it."

    I hope that we will be reading more from you in the future Thomas. If you should ever want to submit your story I will provide a quick link for you. (Should you choose.) https://multiplesclerosis.net/stories/ ...Janus

    1. Thank you so much for your kind words.

      I just submitted that story, thank you.

      I often write for my support group. I save them all, so yes, if this is an option, I would be more then happy to contribute.

  2. Thomas Bellas, interesting and enjoyable story. I have trouble remembering words and also stopping in the middle of the conversation and wondering what to do next. My pet peeve with MS is that my relapses take away my ability to walk or stand up.

    1. Thanks! Communication is such an issue. Trying to explain things is the most difficult for me. Like if I had to explain the plot of the book.

      I have to use a wheelchair now, my legs just refuse to cooperate, how rude, right? 😁

  3. Thomas Bellas - I'm sure it is frustrating to learn how to talk again. Every time, I have a relapse, I lose my ability to walk. It is very frustrating because I walk everywhere, no car. I'm on my sixth attempt at walking. I'm 71 and it is very hard this time, I pray that I will be able to do so.

    1. I hear you, Thomas! My ability to speak articulately and intelligently is rapidly waning due to MS. My voice is losing its clarity and strength, and I find myself grasping for words, because either my brain has lost its focus on what I wanted to say, or it’s jumped the track and I end up saying a completely different word. Like you, I am still able to write/type correctly, but then I run into issues with the paresthesia in my right hand making both of those tasks difficult! I am starting to feel like multiple sclerosis does not want me to be able to communicate with the world, and it makes me very sad.

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