Playing Footsie with Fate

You can look away, I get it. Scroll on past, I won’t hold it against you. I understand… I mean, that is some pretty ugly stuff. But if you are still here, and if you’re curious, I’ll tell you a little about what’s going on.

As you can see, I recently got a really nice pedi, with my toenails painted a lovely shade of Porsche Red. You love the look, right? 🙂

Alright, I confess, that cute little pedicured foot on the top is not really mine. But the other foot, the one that looks like it belongs to the Incredible Hulk – if he were to change from his trademark green to deep purple (the color, not the band) 🙂 – yeah, that one is mine.

Swollen, frozen, purple feet. Good times. It’s just another example of some of the challenges thrust upon folks dealing with the joys of ALS.

By the way, content alert. I’ve always believed knowledge is power. During this sometimes overwhelming battle, I’ve also come to believe that awareness provides insight. This post is one of those ALS awareness posts I told you about early on in my journey. I’ve talked before about how clueless I was about this relentless disease prior to my own diagnosis; these posts give me a chance to share some of what I’ve learned along the way.

So… what’s with the feet?

Well, I’m glad you asked.

Big picture, my muscles are dying. Day by day, with all the certainty of death and taxes.

As a simple recap, you may recall that Amyotrophic Lateral Sclerosis is a type of motor neuron disease. More specifically, ALS causes motor neurons to degenerate and die, so they stop sending messages to the muscles – which causes the muscles to weaken, start to twitch (fasciculations), and waste away (atrophy).

Like they say, “Use ‘em or lose ‘em…”

Eventually, the brain loses its ability to initiate and control voluntary movements in muscle groups throughout the body, which will ultimately affect the ability to walk, lift, eat, or even breathe. As these muscles atrophy and die, little by little, in a nonstop progression, it seems as every day I awake to yet another physical ability limited or lost.

Well, come to find out, muscles also perform an important part in circulation. The lower leg muscles, specifically, provide substantial assistance to the heart in returning blood from the feet and lower legs. When the lower leg muscles weaken and die as part of the progression of ALS, their ability to provide this function, to help facilitate blood flow, is substantially reduced, and eventually totally eliminated.

Compounding that issue, a lack of physical activity – which I must say is an unfortunate byproduct of having your muscles die – can make it difficult for the blood to reach the legs, feet, arms, and hands, which also leads to poor circulation and swelling.

So there you have it. The outcome of all this medical mumbo jumbo… swollen, frozen, purple feet.

Rumor has it that there will be a pop quiz on this in the near future, I hope you took good notes. 🙂

It’s important to note, I’m not complaining here. Remember, I’m all about the raw realities of this journey. I fear no facts. I simply share a story. It is what it is.

But my hope is that by sharing this story, including the sometimes ugly and inconvenient details, it will allow folks to better understand the myriad of physical and emotional issues surrounding this disease… a brief walk in my shoes if you will – without requiring the purple feet!

Lastly, for another small slice of my perspective on this journey.

When I was a little boy, there was this small sign prominently displayed at my Grandpa and Grandma’s house. It was located in a high traffic spot, where you had to pass by it several times during any visit. As I grew older, I came to believe it was placed with purpose, strategically located with the intent to instill a better understanding of our lot in life. The message:

“I used to complain that I had no shoes, until I met a man who had no feet.”

It was a small sign, but it made a big impact.

Yes, I know I travel what will be an increasingly tortuous path. I understand the seemingly insurmountable challenges that lie ahead. I acknowledge the struggles that I am yet to encounter.

But, much like the man portrayed in that little sign, while I may have lost a shoe or two along the way, at least I have feet – swollen, frozen, and purple as they may be.

That simple, yet timeless message continues to resonate with me to this day, as I maintain a deep appreciation of the reality that such a disparity exists. More importantly, despite my current situation, as I continue to reflect on my life this message further validates my belief that I have indeed been truly blessed.

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