Bedhead Bob: Life and Times

As mentioned in a previous BLOG, I am working on a book. I thought I would share my introduction with my loyal BedHead’s!   I thought I was going to die! Both from what I've been told, and what I've read, I should have. It was September 22, 2021, and I had a massive brain stem stroke.  Which would lead to my being diagnosed with a rare condition, called Locked in Syndrome (LiS). Few people have ever heard of it, even fewer know how it effects the body.  LiS, as it is often referred to, in medical journals and scholarly papers, is a cruel sentence. If you are reading this book. It is highly likely, that you or someone close to you, has been diagnosed with LiS.  A simple search of the Internet, will yield many entries, which will all basically tell you the same information. None will offer my first hand experience.  What you will get from this book, is my nearly one year of living with LiS, 24/7 365 days a year. Well, it will be, by the time I go to press....

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 this bed.  I want to believe that I will return to the man of my dreams. That there is a reason, why when I close my eyes, that my mind refuses to show me as a man with disabilities.  Daily, I wonder if I will again, taste a crunchy apple, stroll through lush green grass in my bare feet, or speak my wife's name again. Oh yeah, I'm one of those weirdos that eats pineapple on their pizza! I would be devastated, if i could never eat pizza ever again. You don't know what you've got until it's gone. No truer words were ever spoken, as far as I am concerned.  My mind often wanders, and I find it triggered by something that is said on the television, a picture I see, or something I read in some book.  ...

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 my liking. Cutaways to scenes of an old diving bell suit, in dark and murky waters, and scenes of icebergs crashing into the ocean, I know their meaning, is supposed to be symbolic, but I could have done without them. .  The movie, did however, bring back memories of my early days in the hospital. There was one scene, which was especially poignant, where two men came into the LiS patients room, and spoke as if he wasn't there. That often happened to me, and it is something that made me really angry. I would hate it, when people would come into my room, and talk about me, as if I wasn't there. Especially, when it involved making some decision, that directly effected me. It happened way to often.  ...

I have several announcements to make: first, I'm going to be writing a book about the 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 have dreamt of doing, all my life. At least since high school.  I'm especially excited, and very honored, that my most respected friend, has agreed to write the forward to my book.  To the regular reader, it may at times seem repetitive. If so, I apologize to you.  My goal is to give the reader an authentic look at what my life is truly like. A lot of what I read, parallels, what I experience in my life. There are, however, things not mentioned in anything I've read, which are true for me.  I'm excited about the prospect, of the next few months. There is much work to be done, I'm aware, but when the time has passed, I'll be able to call myself an aut...

 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 learned to ignore them. I just focus on something else.  2: 37 - I wake to the sound of the dog barking I don't stay awake long. The last I remember thinking, is I hope we don't have a possum or coon, visiting the chicken coop.  5: 49 - My glasses have fallen off. Everything is blurry. I can squint and make out the time. I think to myself that light will soon illuminate the room. Too early for Jonell to be up yet, but soon. I'm still tired, I close my eyes and drift off once again. 7: 28 - I wake up. Jonell is already up. She notices me awake, hey 60% and turns on the news. Lydia walks into the room, apparently, already up too. She walks over to me and takes my glasses from my chest, and puts them on my eyes. My wife walks ...

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.  I believe that life is a mystery. Nobody can tell you when you are going to die. If they do, and they are somehow right, it is the result of a self-fulfilling prophecy. Only God can tell you when your life on this earth is finished. Everything else is just a guess. I choose to live my life as though I'm not leaving anytime soon.  I think that when you stop believing in your future, that is when you die. I fill my days loving, laughing, and learning. I don't do it because I have to, I do it because I want to. And because it is what I would do even if I wasn't confined to this bed. This bed and my condition don't define me. Nor do a room full of doctors! When we are little...

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 Jonell, our young three year old daughter, Lydia, and me. Three people in one 16x20 room, of a 1974 mobile home, for the winter. With wood heat, and a one hundred year old wood stove and no wood stock piled. Although our land was nothing but wood.  We learned as much about what not to do, as we did about what to do that first winter. We burned a lot of green and wet wood. Five miles from the nearest paved road, and about a mile from the nearest neighbors. I had hand picked the spot on our land where our home would be.  Somehow we knew, as the snow showers turned to a cold rain, and the first signs of spring emerged all around us, that surviving the winter, meant that we had passed the test, and the la...

 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 you hold your baby in your arms you will never be the same You might long for the person you were before When you had freedom and time And nothing in particular to worry about You will know tiredness like you never knew it before Days will run into days that are exactly the same Full of feedings and burping Nappy changes and crying Whining and fighting Naps or a lack of naps It might seem like a never-ending cycle But don’t forget… There is a last time for everything There will come a time when you will feed your baby for the very last time They will fall asleep on you after a long day And it will be the last time you ever hold your sleeping child One day you will carry them on you...