Words Mean Everything – Rise, Relay, Move.

Others don’t understand. To be honest it’s hard to explain. I am surrounded by my wife and daughter and at other times a host of friends and family. Yet I can be with a group of people who have gathered on my account and feel completely all alone. This in no way diminishes the care and attention I am paid. I believe it is a direct result of the limitations of my ability to communicate in a way that is comfortable to people. I have always been one to interject humor into everything. But it’s different now. By the time I get a few words typed out, I can see in the faces how anxious people are for me to finish. The silence is awkward with only the sound of clicking as I search out my letters and the occasional word being spoken in what most agree is an angry voice. It took nearly two minutes to type this eleven-word sentence. (I bet most of you just counted the number of words in that last sentence.) And so I mostly withdraw, reduced to nodding my head yes or shaking it no. Don’t get me wrong, I love my ACC device (Augmentative and Alternative Communications device). It’s amazing technology. I can’t imagine what my life would be like without it. It allows me to express myself through avenues such as my upcoming book and this BLOG of course. It also helps me express my needs and desires. Since this doesn’t happen quickly, I have figured out some ways to speed the process up. It doesn’t always work though. Even with this technology, it’s often just easier to do what I once had no choice but to do. The news will be on and I will see something I would like to comment on. The reality though is by the time I could type out what it is I wish to say, three or more stories have appeared, and nobody has an idea what I’m talking about. Unless I were to include more context, which would take me even longer, it’s pointless. So instead I just say nothing. My thoughts and ideas just stay locked inside my head. I guess that’s why it’s called Locked in Syndrome. When someone is standing and waiting for me to type something, for some reason I will start to laugh uncontrollably. Thus taking it longer to type what I want to say. I have to peer over my eyeglasses while they sit down on my nose. Necessary because the machine will not read my eyes through my glasses. Important to note that I’m blind as a bat. When last I saw an optometrist I was told I have 20 X 600 vision! Without my glasses, I can’t read the eye gaze machine. With them on I can’t control it. Thus my glasses sit perched on my nose in such a way to allow me to go back and forth between peering over the top of them and raising my head to allow me to look through the lenses and see the screen. A work-a-round that permits me to both type and see. It’s not the way I would prefer to do it, but hey, it works and my neck muscles have gotten stronger. I have quite the conundrum here; on the one hand, I have some of the most advanced technology available over the last few years. On the other, it takes me so long to use that oftentimes I don’t. Perhaps there will come a time soon when it will no longer matter.