Congenital Bilateral Perisylvian Syndrome

Made by Annapurna Digital

When I Hear Myself Talk, I Understand What I’m Saying

I Understand

I’ve told Max about this blog a few times, and that I write about him and his condition to help educate other parents whose children have CBPS.  I also let him know that when he’s ready, he can write on this blog as well, if he’d like.  He asked me what he should write about.

I said, “Anything buddy, what it feels like to have CBPS, how school is for you, how it’s like to order food at a restaurant, anything that comes to mind!”  He laughed and said, “I just don’t know what I have to tell people about yet.”


I smiled at him, then he said, “You know, what I think I would say… when I hear myself talk, I understand what I’m saying, and it’s funny that no one else understands me.  But when I video record myself [on my cell phone], I see how people don’t understand me; I just don’t think I sound the same as what I hear when I see me talking on video.”

I thought that was interesting.

I suppose that there are times when we are trying to describe something to someone and it makes perfect sense in our heads, but the other person is totally confused.  It’s like when I try to describe what I do for a living.  The conversation usually goes:

“What do you do for a living?”

“SEO (confused look by the other party); um, search engine optimization?”

“What is that?”

“Internet marketing (still confused look)?  Hmm, well, I help get websites to the top of the search engines and make them easier to navigate for users.”

“And people pay you for that?  I thought that just happened naturally.”

“Hmm, yeah, it actually takes a lot of hard work and love – and by that I mean great content, fixing site errors, building awesome links and much more.”

Since I’ve started doing SEO for a living, I’ve learned to just say the latter half of that conversation because the actual term for what I do makes no sense to the majority… could you imagine feeling misunderstood for every word that comes out of your mouth?  It makes sense to you, but you just keep getting that confused look.

I’m so glad that Max has high-spirits though, and doesn’t let what others say (or do in body language) tear him down.  What I would give for that patience!

2 Comments

  1. Great Site. Thank you for sharing your lives with us. I have an Auntie that has had several strokes and hasn’t made it past the drooling stage. Thank you for the information. We will be adding more ginger to her diet. Will you tell me who hosts your beautifully clean and pleasant site? Is this word press?

Join the Discussion