The lights are off.....

 

Unlike the saying, "The lights are on, but nobody's home.". Is almost exactly the opposite of what it's like living with this condition of SCA (Spinocerebellar Ataxia). I think of it like "The lights are off, but I'm home." I hear you just fine, except when I don't. I understand you just fine, even if I don't get the topic. It doesn't seem like it, I realize that.  Repeating what I say sometimes is part of the gig, as much as I don't like it. I still do the occasional meeting. I don't say much in group settings, it's mostly  my own self conscious issues. It is good to know when I do talk though, most people listen. Noisy environments are hard because so many things overbear my talking. So, most times, I just don't. Sometimes, people just don't understand me. So, I'm much better one on one with no background music, and very few people. Those few that,are hard of hearing, are even more challenging. But we manage. Just don't nod your head in agreement or disagreement when you have no idea what I even said. It usually bites me or you in the ass later. Do I hate repeating myself? Yes. But, dislike the latter more. If I asked you something and you said ok to it and later on I hear you say I never said that,  because you just gave up before, trying to understand me. It's kind of like when Jerry Seinfeld agreed to wear the "Puffy Shirt." on the Today Show. It's probably a little exaggerated but you get the idea? Repeating myself is pretty normal, sometimes, I just repeat myself because I feel like that was probably not very clear. The other thing that drives me a little crazy is talking to me like I'm two years old or a puppy. Last time I checked my hearing is one thing that works pretty good. Know, that if you have done this I'm probably beating you up in my mind. Sorry, not sorry! No, I do not go out often, but I do. If I make a choice of coming to see you, know, that It's important to me and I want to be there and if I cancel on you, something got in the way. It could be in the form of a physical obstacle,  a mental obstacle or maybe I just don't feel good or it's just a bad day.  People cancel on me too, it's just how it goes.  I love it when people tell me they can help me over things, like snow banks and things that sometimes are in my way. You probably could, but the issue is that I need to trust you, and for the record that's not many people. What might seem easy to you is not necessarily easy for me. It's not that I don't think your strong enough, it's that I do not want to put anyone in a situation, where medical assistance is needed.