It has been a minute. Don’t fret. I am still here. Living the Covid life. Last time you heard from me , we were only a couple of months into the pandemic. It is still a crazy time , but some things are returning to a semblance of normal.
I have been doing my best to keep safe. That equates to being stuck at home for the most part. I have gotten out a handful of times , but I am ready to get back to full normal. It gets old watching TV and surfing the web. Even so , I have been keeping myself busy. Projects at the house , I Am ALS committees , consulting , advocating to Congress… there has been no shortage of work to do. I enjoy it and the community needs it.
Throughout and in spite of all this , my battle with ALS wages on. The disease is really gaining the upper hand these days. I try to balance positivity and reality in my writing. Today you get real. I am pretty much totally dependent , now. I can bear weight on my legs but cannot walk. I can’t stand up straight. I have no use of my arms, core is very weak and I can only hold my head up for a second or two. Speech is basically like a deaf person. The scariest thing is my breathing. I am hooked up to my ventilator for most of the day. It is getting to be more effort , even then. That means one thing… invasive intervention is knocking at the door. Shit is getting real.
I have no problem admitting that this makes me uncomfortable. From the beginning , I knew that a trache was the option that I would choose as long as the circumstances were right. But it was always down the road. I am not afraid of getting it or what it brings for us. It is just the finality of what it means. Think about it. For all intents and purposes , it is the line between me and death. If it were not for a machine capable of providing my breath , I would be dead right now. It also signifies how close I actually am to the end of this disease’s course. That is why I am eternally grateful for each moment that I am given . And I will continue to “live” out every day.