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.