Introduction

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, and even fewer know how it affects 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’m not fancy, I offer you a common man’s look at things. That is my background, that is who I am, and how I grew up. 

I still believe that hard work will get you the things you want, at least the things you need. During the past year, those things have changed a great deal for me. Staring death in the face has that effect on you.

The Reality…

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, 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. 

LiS is a cruel condition, in that it reminds you of its presence, every second of every day. You think about it when you go to sleep, you think about it the moment you wake up. It’s not a debilitating pain, but it is enough so, that it makes you aware that it is always there. 

I believe I will beat this. It may take me much longer than I would like, but I have faith that I will prevail. 

In spite of my positive outlook, I will admit to having days, when my self-pity, gets the best of me. There have been more things, that have caused me to cry than have brought me happiness and joy lately. Perhaps, that is due to the things I expose myself to, more than anything after all, my condition intensifies my emotions, and I have no control over it.

Locked in Butterfly

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 patient’s 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 decisions, that directly affected me. It happened way too often. 

The movie, based on a book by the same name, is a true story, about the editor of  Elle magazine, who was diagnosed with LiS, after his stroke in 1996. While there are many aspects of the movie, which I felt paralleled my experience thus far. There were as many that didn’t. He had a complete version of LiS, and was only able to move his left eye. Although I am able to only move my head and neck, and some of my fingers and toes, I feel fortunate that I have this much movement. 

He dictated an entire book, by blinking, as the alphabet was read to him. If anyone could have benefited from the use of one of these machines, it would have been him. 14 months it took him to write the book! 

Regrettably, I must admit, that I too wanted to die, like he did in the movie. I would lie awake in my bed, and pray for God to take me away. Those first months were hard. But eventually, with the help of my wife and daughter, I found a new hope for my life. 

Although I didn’t find this movie, to be all that great. I do recommend that you give it a view, if you want to get a feel, for what this condition can be like. It definitely will do that. And it was only $3 on eBay. 

As I have said on this BLOG before, many of the conditions reported as being common, in traditional cases of LiS are in fact, common for me. However, I do experience additional conditions, which are unique to my case as far as I know. Our two cases are noticeably different, perhaps that is because we have different levels of this condition. 

I suppose I may have liked it better if I spoke French. Unlikely, but I guess there’s a chance. But I’m not going to learn French, just to find out. Celia did say she had read the book, and she thought it was a little slow. I’ve always heard it said, the book is always better than the movie. I guess this is the exception to that rule. Either way, I don’t think I’ll be reading the book anytime soon. I’ll take Celia’s word for it. 

I will keep reading and watching titles that concern LiS until they make a movie about me. That may be a while, so I don’t recommend that you don’t hold your breath! 

Another point made in the movie, which I related to, is when they were giving him a bath, and the inner dialogue, spoke of how much he felt like a big baby. I have often felt the same, when getting a bath, or having my brief changed after soiling myself. Some days I feel like a great big, helpless baby!

A Day of My Life

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. 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 over and kisses me and tells me good morning. I blink, in a manner that indicates I need my eyes wiped, and she gets a warm Washcloth. She removes my glasses, wipes my eyes, then replaces my glasses, to their rightful position. 

7: 39 – All this time, Lydia has been crushing up my medication for my morning concoction, and she starts giving it to me through my feeding tube. She also begins my feeding for the day. I am fed my liquid diet, through an IV bag system, hooked up to a special machine, that regulates the amount I get per hour. 

8: 35 – Jonell checks and fills the water in my humidifier. 

9:  34 -Jonell put my head up for me, so I could sit up. 

10: 19 – Lydia adjusted my glasses for me. 

11: 18 – My nurse, Mary, made her Friday visit. My blood pressure was 103/68 and my pulse was 72. Oxygen saturation was 98. 

12: 08 – PT by Jonell and Lydia. 

12: 24 – given a dose of Baclofen, by Lydia, per my request. Tailbone starting to really hurt. Pain so severe it is causing me to cry. 

12: 36 – Lydia adjusted my hips. 

12: 38 – Lydia put my boots on. 

1: 24 – Heaven, our household aid, returned from her weekly grocery run. Every Friday, she runs into town for my wife, to pick up food and supplies for us. 

2: 21 – Suctioned by Lydia. 

3: 16 – Glasses adjusted by Heaven. 

3: 57 – Glasses adjusted by Heaven. 

4: 27 – Glasses adjusted by Lydia 

4: 41 – Head back by Lydia. 

5: 31 – Baclofen by Lydia. 

6: 22 – Glasses by Lydia. 

6: 34 – Fan on me by Jonell. 

7: 20 – Suction by Lydia. 

7: 24 – Cleaned up by Jonell and Lydia. I’ll spare you the details, just know that it’s a shitty job… Literally! 

8: 01- Suction by Lydia. 

9: 05 – Nighttime meds by Lydia. 

9: 38 – Final Suction by Lydia 

9: 43 – Nighttime medications by Jonell 

So there you have it. A little later than most nights. But it shows how three people team up, to provide my care. I may have left a few things out. And I didn’t include things like fielding phone calls on my behalf, emptying my catheter, or filling my humidifier. Those things happen behind the scenes and need to be tended to daily. There is also the occasional visitor, that drops by, whether planned or spontaneously. All these things need to be dealt with and take time. There’s also cleaning and dusting, laundry, dishes, and a whole host of other things. All combine for a long day.

Announcement and a Little Extra!

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 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 author! 

Grab hold of your dreams and hold on tight. Like a good friend of mine likes to say, ride or die!

Addendum:

My role has always been as a silent partner. The reality is,  I don’t do much. I mention this because most people don’t realize how much effort it takes for Bob to do the amazing things he has done. 

AAC (Augmentative and Alternative Communication) takes time to master. It can be fatiguing, and frustrating, and technology doesn’t always behave. That being said, Bob has persevered and has been graciously patient with me. 

Both Bob and I are thankful for everyone who has helped support his journey whether it be through donations to obtain his device, following his blog, or buying a T-shirt.

Bob is a very special person in my life. To be honest, I talk to him more than I talk to people I have known for years. We have both shared parts of our lives and are connected on many levels. Two unlikely friends, were brought together by a life-changing event. 

Bob is truly a testament to the importance of not discounting a person’s ability, who has difficulty communicating, in the traditional sense. 

 I am incredibly proud of the accomplishments, attitude, kindness, and grace that he has shown. There is much to be said about a person who is able to find a purpose, a drive when life looks different than you may have pictured. True wisdom is focusing on the things you CAN do…. it’s a productive approach to fulfilling a quest to redefine, quality of life. 

I told Bob I always felt like I didn’t fit in anywhere and that throughout my life I have gravitated toward individuals with that I felt connected. In turn, I have grown to have a loving group of people, a chosen family, I call the misfits. 

Thank you, Bob, for being a fellow misfit. Ride or die for life❤️ – Celia 

Time

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, still under our parent’s thumbs, we can’t wait for the passage of time. To bring us to the next milestone of our lives, and one step closer to what the world considers an adult. Truth is, we never really grow up, we only start acting like what we believe an adult should act like. But when we think Nobody is looking, or when we are drunk, or when we are with certain friends, with whom we feel a certain level of comfort, our immature comes out. 

Our milestones are ones we impose or are imposed by society. There’s our first day of school when we get our first day of separation from the only adults who held sway over our lives. Then there’s turning ten, double digits. When you turn 13, a teenager at last. When you turn 16 now you can drive, or at least you used to be able to, I don’t know how it works now. There’s turning 18, you become an adult, in some respects, but you still have to wait to get all the perks of adulthood. And finally, there’s 21, a full-fledged adult. You have finally earned all the rights and responsibilities of being an adult. Congratulations! It seemed like it was taking forever to get here, next thing you know, you blink, and you find yourself in your sixties. 

You spend the first 21 years of your life, wishing you were older, then the rest of your life, wishing you were younger. A cruel joke really. By the time you think you’ve got life all figured out, it’s almost over. Dad said something to me about it, but I was young and dumb. I know how he felt back then, my kids don’t want to listen to me either. Like me, they think they’ve got it all figured out. They’ll learn like I did, the hard way. 

I saw a picture of my wife and me, dressed in some hideous outfits that I can’t remember owning, much less ever wearing. We looked like we were getting ready to be extras, in some bad eighties-themed music video. Neither my wife, nor I could remember having taken that photo, or why we were dressed that way. My little girl sure got a laugh. But you would think because the outfit and hairdos were so bad, that we would easily recall the moment. Instead, we found ourselves doing our best Sherlock Holmes, and looking for clues that might tell us when the photo had been taken. A lost fragment of time. How many more were there? Photo evidence, yet it was a lost moment.

The Place We Made Home

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 16×20 room, of a 1974 mobile home, for the winter. With wood heat, a one-hundred-year-old wood stove, and no wood stockpiled. 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 land had accepted us. Over the years we would see many driven off their land when faced with a brutal winter or cruel summer. 

There would be many more tests for us in the years to come. But none that would come close to the trials we faced that first winter. Nor would we ever be as close. It showed us how to be a family. How to laugh, live and love. And most importantly, how to survive. 51 years on this earth, and not once had I even held a chainsaw, still, I went to work clearing what we now consider our homestead. I probably did a lot of unorthodox, even what many would consider dangerous things along the way. What doesn’t kill us, makes us stronger, and I’m still standing, so to speak! 

Through the years we have raised goats, pigs, guineas, turkeys and rabbits. We still have chickens, ducks and turkins. I guess you could say we still have pigs, although they are in, what we like to call freezer camp. All have brought us both joy and heartache. And we’ve have learned a good amount along the way. Trial by fire, I guess you could say! 

We’ve worked on this property quite a lot, and have managed to carve ourselves out a nice little place in the woods. It’s not for everyone, but we call it home. Through the years it has grown in size to accommodate our needs. 

100 years from now, when our children’s children are working this land. And we are nothing but a memory they have of bygone days, I only hope they will remember us fondly. And appreciate our struggles, in these early days, the sacrifices made, and the dreams we had. For it is a dream, we hope will be shared by many generations to come!

The Last Time

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 your hip then set them down

And never pick them up that way again

You will scrub their hair in the bath for one last time

And from that day on they will want to bathe alone

They will hold your hand to cross the road

Then will never reach for it again

They will creep into your room at midnight for cuddles

And it will be the last night you ever wake to this

One afternoon you will sing “the wheels on the bus” and do all the actions

Then never sing them that song again

They will kiss you goodbye at the school gate

The next day they will ask to walk to the gate alone

You will read a final bedtime story and wipe your last dirty face

They will run to you with arms raised for the very last time.

The thing is, you won’t even know it’s the last time

Until there are no more times. And even then, it will take you a while to realize.

So while you are living in these times, remember there are only so many of them and when they are gone, you will yearn for just one more day of them.

For one last time.

-AUTHOR UNKNOWN

This writing is significant to me, now more then ever. Because not only does it cause me to reminisce of my life with my children, but it makes me think about my life in general, before my stroke. 

The last time I went to work, the last time I drove a car, the last time I held my wife. Certainly those don’t have to be my last times, but they could be. And so I drive on, maintaining a positive, yet realistic outlook. Like Casey Kasem used to say, ” keep your feet on the ground, and keep reaching for the stars! “

To keep with the poetry vibe, I thought I would share

IN JUST A LITTLE WHILE 

by Bob Layton 

Each  day more precious than the last, 

you wouldn’t understand. 

For soon I’ll leave, 

and won’t return, 

a memory Left to stand. 

I’ll be with you each time you turn, 

you’ll swear you saw me there, 

but I’ll but be a memory, 

a whisper if you dare. 

So close your eyes and think of me, 

my laughter and my smile. 

And know that we will meet again, 

in just a little while.