Advocacy, Access, and Movement for the Silenced.
I try hard to maintain a positive outlook about my situation. Some days are easier than others. I lie in bed, and anxiously wait, returning to the man I once was. I am aware that the odds are against me, but I choose to, instead believe, that my life will not end with me in…
Over the weekend, I watched the movie, “The Diving Bell and the Butterfly”. It is a movie, about a man who has a stroke and wakes up in a hospital, to find that he has been diagnosed with Locked in syndrome (LiS). The movie is French made, and it was a little too artsy for…
I’m going to keep track of a typical day of my life. It will give you some idea of what it is like to be me. I will spare you from the times, when I feel an itch or some random pain, as I do with my caretakers. I feel itches all the time, and…
I have several announcements to make: first, I’m going to be writing a book about Locked in syndrome. Second, I will post the chapters, here on this BLOG, for you to read first. And finally, Celia has graciously agreed to write the forward for my book. I’m pretty excited, that I’m doing something that I…
For those that don’t know, I’m on hospice. In researching it, I found out that in order to go on hospice, you have to be deemed terminally ill, with a life expectancy of fewer than six months. Well, I just passed eight months, and have no intention of proving them right about the terminal part. …
We bought our 15 acres, more or less, around the spring of 2012, and moved onto it, in the fall of 2013. Our home wasn’t anywhere near complete, for that matter, it still isn’t. So we spent our first winter in one room of a single-wide trailer. When I say we, I mean my wife…
From time to time, an inspirational writing makes the rounds on Facebook, well, maybe not the so much inspirational, as a writing that gives you pause, and causes you to really think. Titled ” The Last Time “, I will include it here, in case you’ve never seen it: The Last Time From the moment…
I don’t know why, and I seem to have my medical professionals stumped too, I get a sharp pain in my tailbone, from time to time. No pain medication they have tried works for me. It’s not like something used to work and stopped. Nothing works. Not morphine, not Delotted, or any number of other…
I hate to be the bearer of bad news. But it’s now been 10 months since my stroke. And although I probably have lost nearly 25 pounds. And have been on a Vegan liquid diet the entire time. I still have my gut and thighs. So I don’t know what kind of diet you are…
We grew up poor, but we lived in a poor neighborhood, so we didn’t really notice most of the time. But it was the times when the electricity got turned off, and our house was dark, while the whole neighborhood was ablaze with light. Or when my Sisters and I would have to go to…