Growing up, most people who knew me would probably say that I was rather shy. I would tend to agree for the most part. I guess you could say I was a man of few words. Once you got to know me, I could talk your ear off. Joining the military went a long way in breaking me out of my shell. Although, I still tend to lean towards the quieter side.
I have no problem problem talking about almost anything. I’m pretty open to any topic that is brought up. The only thing I will limit myself on is politics. Not because I don’t have my own opinions, but because EVERYONE believes that they have it all figured out. Right , Left. It doesn’t matter. But I digress.
When it comes to ALS, though , anything goes. I am always happy to talk about it so long as someone really wants to listen. That is the problem. Do people really want to hear what we are saying? Honestly, I don’t think most people do. How many times have you gotten the “Oh how are you doing? “, you say good and that is the end of that? It’s like a telemarketer script. We are all guilty.
I hope that I can help open dialogue every chance I get. One of the biggest issues we face is just plain ol’ ignorance. Nobody knows a damn thing about this disease. There has been so many times that we have told someone about it or they have read about me on social media and they come back with “yeah I don’t know what that is “. Seriously? Google it and take 30 seconds to read about it. Sorry for the short tirade but it really irks me.
That being said, I feel that we should always be looking for opportunities to be a voice for our plight. I know that there are people who have questions. I truly enjoy informing those who aren’t afraid to ask questions. I take part in a research study for ALSTDI where I wear accelerometers on my wrists and ankles. I always get looks like I am breaking house arrest! Sometimes people ask about them and I happily explain what they are.
I often wonder what people think when they speak to me nowadays. My speech is slow, slurred and nasally at times. Again, if asked, I would have no qualms telling them. None of us with ALS have anything to be ashamed or embarrassed of. We should welcome the chance to make our voices heard.
My voice is almost completely gone so I use my boogie board a lot for communication, what gets me is I’m not able to talk and I let people know, but then they raise their voice or talk slow so I can read lips, I’m not deaf! I just can’t talk. Lol
Yeah that is a beast all its own. The face can speak for you. lol. Maybe I will address understanding the disease in the future. Thanks for stopping by !