Alone In The Storm

I feel very isolated, very alone much of the time. The only real break from this feeling is when people come to visit, when someone walks through my front door to day hello. I'm not sure why I feel this way so much. I have my phone. I have text messages. I have Facebook. I have Facebook messages. I have e-mail. Yet with all this technology, I am alone.

Part of it has to be the inhumanity of technological communication. The art of conversation is lost in all this clicking and clacking of keys. The warmth of human touch, the messages of body language; none of this comes through, be it over the phone or through the computers. Emojis are a poor attempt at communicating feeling; they don't, they are just another bit of technological clutter on the screen. In the end, even a computer visual contact, such as Skype, lacks the sense of reality inherent in a human visit.

Another part has to be the disease itself, with the many limitations it places on me these days. I can't get out as much, or as easily, as I once did. Therefore I cannot drive this human contact process. It's exhausting, tiring, for me to even go to a movie, let alone to a loud social event. One day out is equal to two days of recovery. So I just stay home, hoping, passively, that someone comes a'calling.

Finally, I think the nature of this illness drives this sense of aloneness, the inability to grasp it in its entirity, the way people who are not PALS can only understand ALS in bits and pieces. There are so many elements within the body impacted by this disease that once you get a handle on one of them, another pops up and steals the focus. That has to be hard for anyone, even PALS, to deal with.

Perhaps the worst thing of all is when a PALS loses his or her ability to speak. Then they are stuck with eye-gaze or other text to speach solutions. Steven Hawkings "voice" became famous, but it was not his voice at all. Voice banking makes a difference by allowing technologically derived speach to be delivered in the original voice. Yet even so, it is not you, it is not your real voice. It is a pale, lonely imitation of what you once might have been, now gone, lost in the storm of ALS.