
The Shittest Dog Ever - Losing my Speech
Ed SlaterShare
You can now listen to me reading my blog posts using my AI voice created using ElevenLabs below.
I would say of all the symptoms I’ve had to endure since my body began to deteriorate nearly four years ago, losing my speech is the most difficult.
It is the vehicle for connection , a quick joke, a genuine concern, telling a story, being silly with the kids, or debating over which takeaway to have. In isolation, these are things we do every day without much thought.
Except now, I think about every interaction. Every missed opportunity to ask questions or share some odd bit of information. Even the intention to politely say or return a greeting is followed by some unintelligible mix of sounds you’d be surprised to hear at an eating competition.
It just isn’t worth the effort for the inevitable blank look that’s returned with a smile. The effort required to get two or three of my “best” attempts at coherent words leaves me more breathless than the Undertaker getting the Stinkface from Rikishi (Google the reference if it doesn’t make sense).
Unfortunately, this is leading to evasive action. Don’t make eye contact with anyone. Keep the wheelchair moving to avoid stopping and possible interaction. If I can’t avoid it, I need my wife to translate a language spoken on this Earth by only two people into something understood by others.
Keep it short though, I can’t tell a good story gargling into my wife’s ear. As you can imagine, the conversation dries up quickly, because communication is more than just words — but nothing without them.
Gestures, expression, enthusiasm, timing, etc. You get the picture. I don’t need to labour on every nuance that makes a good chat, but without the conversation piece, it would just be a comedy sketch.
I thought about how much we love our pets, and they can’t talk back to us. Am I turning into a dog? The worst kind, as well.
Needing attention like a puppy, breathing like a bulldog, unable to grasp the concept of fetch, and refusing any form of exercise but you have to keep watch in case I shit somewhere in the house. The shittest dog ever.
I joke, but it’s close to the bone, isn’t it?
To be straight, I’m finding it really difficult. I just want to be stupid with my kids, or have a chat with my wife about anything else other than “Could you please help me with (insert request)?”
I could join in with the kids’ games when my speech was okay. Even as it weakened, they understood enough for the conversation to flow. But now I realise that I have to repeat things, or use two or three breathlessly slurred words and hope for the best.
I just didn’t anticipate the level of grief and frustration that would come with my speech changing, even if that sounds naïve. I don’t think you can comprehend it until it actually happens.
Try taping your mouth (make sure you can breathe through your nose, and I take no responsibility for this), and see how long you can last without your voice. It’s ridiculously difficult. I haven’t even factored in that you can’t move your arms or legs either.
Mental thought, isn’t it?
Anyway, I’m just trying to offer an insight into the challenge of MND. Unfortunately, there are lots more like me trying to navigate this bastard disease.
Still, we love talking to our pets despite nothing coming back from them verbally. Just please don’t talk to me in a high-pitched, over-the-top nicey voice reserved for babies and pets. Looks can be deceiving but I’m neither.
20 comments
Hi Ed,
That was so powerful…. We hear you.. we understand how devastating it must feel for you and your family..
Ben, my husband was diagnosed 16 months ago.
You’re doing great..take care.
Ben & Hayley
Excellent blog Ed. Informative, moving and funny all at the same time. Keep on keeping on x
As a fellow MND sufferer; I completely agree with this fantastic summary of the pain and frustration which I am experiencing now.
Bless you Ed. Your an absolute inspiration and I have such admiration for the way you’ve coped with this! God bless you and love to Joanna.
This is very powerful indeed, Ed – thank you so much for sharing your situation and your feelings.
This is helping all of us in trying to understand more of what you are going through.
Thank you!