Adversity can be a very motivating teacher. Unfortunately, experiencing a significant challenge or misfortune in life is normal. Unexpected job loss, the unexpected loss of a loved one, or a sudden health crisis like mine can all have a major impact on the trajectory of our lives and the lives of our family and friends.
Before my stroke, and as I approached the inevitable end to a mostly unremarkable life, I suffered a massive stroke that would drastically alter how I pictured my final years. At 61, I was looking forward to gardening, tinkering in my woodshop, and performing the occasional honey-do project. Nowhere in my wildest dream did I imagine a world where for approaching 4 years now, I would not only be bedridden, but quadriplegic and non-vocal.
Something called Locked-in Syndrome (LiS) was the culprit. While there is no way of knowing the exact number of people with this incurable disease, estimates are somewhere between 330 and 660 new cases are diagnosed in the U.S. each year, with around 1500 to 3000 persons living with LiS at any given time.
How bad did it get? I would ultimately learn that my physicians at one time counseled my wife that it would be more humane to let me go. Fortunately for me, she didn’t follow their advice.
Something that I often lie awake wondering about is whether this was always my fate, or was it the result of something I did or didn’t do.
Due to its rarity and the need for full in-patient care for anyone studied, not many clinical trials occur for Locked-in Syndrome specifically, however, there is growing optimism for spinal cord maladies in general. Despite the bleak outlook for recovery, some have managed to escape its tragic grasp. I hold out hope that one day mine will be one of those inspirational tales.
I have published a blog since April 2021. I will publish both my reworked blogs and new works here on Medium. Few ever read my original writings, a feat likely to repeat itself. With no genre or niche, I guess you could say it’s the Seinfeld of blogs.
I would appreciate your support in this endeavor to utilize this amazing platform, and perhaps someday I will garner a large enough following to help support my family. Thank you for reading and I sincerely hope you will follow and return soon!
I believe I am growing and learning as a writer. If you would like to read any of my BLOGs in their original form, you can find them on WordPress here.
