On September 22, 2021 my world ended abruptly. I suffered a massive brainstem stroke that resulted in my being diagnosed with an extremely rare neurologic disorder known as Locked-in Syndrome (LiS). This was the first blog I wrote following that tragic event.
Imagine if you will it’s almost bedtime, and you start to think about all the things you need to get done tomorrow. Of course, there’s work, tomorrow I need to be there at 1:00. The car is due for an oil change, if I leave early for work, I should be able to get it done. Finally,I still have to get registered with some companies for AEP (Insurance Term), which is not far off. I might have time to do that during my lunch break. Oh yeah, you also told your son you’d swing by his place to take a look at his jeep, it’s making a strange noise. You can leave even earlier for work, hopefully, it won’t take too long.
Sound familiar? Although the list of things to be done will be different; we each go through a similar thought process daily. Planning a day so full that we don’t leave ourselves much room for error. Ten something goes wrong, it causes us stress, and that stress causes those around us to get stressed as well.
Not a healthy way to live. All of this is going through your head as you relax in your recliner, half-watching some TV show. If you can call that relaxing.
Then suddenly you start to get dizzy from all the relaxing, and you realize it’s not going away. Something’s wrong and even your wife and little girl struggle to get you to your feet.
I had a heart attack seven years ago now, but this didn’t feel like that. “This has all the telltale signs of a stroke,” I remember thinking. 911 was called, but it would be an hour before they got there, one of the disadvantages of living deep in the woods.
So there I sat in my recliner, getting increasingly worse. My wife stroked my face and fought back her tears, and my little girl, clinging to one arm and quietly sobbing. All we could do was wait.
At about the one-hour mark, just as expected, the ambulance arrived, and by that time I had slipped into some sort of jelly-like state, my wife was literally holding me in my recliner.
Speech, I recall, was something I understood clearly, but I could not form a sentence or answer in understandable words. Nonetheless, questions were asked of me, but the answers came out as complete gibberish. Finally, I was no longer asked any questions, and the paramedics and my wife started speaking about me instead of to me.
Eventually, the two female paramedics struggled to hoist me onto the stretcher and into the back of the ambulance. There they played a version of Guess My Weight because I heard one of them ask, “What do you think, about 250?”
“250 sounds about right,” I heard one of them respond.
I was appalled, I was 183. I had weighed myself that morning..
I tried but was unable to offer a protest.
Those would be the last words I remember hearing. I
I woke up in the hospital, two days later, to the sound of my dad’s voice in the room. This was strange as he lived two states away.
That was more than three years ago. Three years in bed changes you.
Believe ir or not, I was considered one of the lucky ones. Most die from the type of stroke I had. The ones that live, die in under four months. Well, I’ve surpassed four months, and at three years I am still going strong!
I’ve been diagnosed with Locked-in Syndrome (LiS). Not much is really known about this condition. It is a neurologic having to do with the brains ability to communicate with the spinal cord. Ask 6 different doctors questions about it and you’ll get 6 different answers, that is IF they know what it is.
When the Experts don’t know, where are we to turn for the answers?
I’m not the man I was before my stroke… obviously. Three years in bed will do that to you. In a lot of ways I have grown
I do believe that I’m going to recover. Much to the surprise of my Physical Therapist, I am able to perform task he thought would not be possible for me.I will continue to learn about myself and grow in ways, I think we were meant to grow.
Come along on my journey and discover things about you that are hiding and waiting to be discovered!
