1440 or Bust!

This may come across as a whiny rant, and it is – to a degree. Sorry, not sorry. It’s my journey, so I can do that. But hopefully, you know me well enough to know that’s not where it’ll end up though, right? 🙂 So hear me out…

For what it’s worth, I’m not a morning person, never have been (unless, of course, you count mornings that were a mere continuation of the night before – had many of those, but we won’t go there). 🙂

And now, as I battle a progressive motor neuron disease that transforms every single action and activity into a momentous struggle between good and evil, my mornings have morphed into an entire ‘nother level of suck.

It begins with the battle of the bed, a frustrating exercise that includes a solid 20-minute struggle to sit up (which requires help), then to get up (which requires help), and then get situated for the start of the day (which, you guessed it, requires help).

Of note: had Melanie not already attained certain sainthood just for putting up with me for the past 40 years, her Herculean efforts in providing loving care as I battle this terminal disease would definitely guarantee her such status.

Unfortunately, while the morning suckage is definitely one of the low points in the day, it does not have exclusive rights to being terrible. No, throughout the day I battle inconveniences and frustrations galore. Some are as minor as the inability to hold a fork or a pen, others are as significant as my lungs revolting because I can not complete a simple cough.

To paraphrase Billy Mays, “but wait, there’s more.” 🙂

That says nothing of the myriad of difficulties in moving, or reaching, or holding, or other activities in the daily routine that are a little too TMI for these pages.

Oh, and I loathe to even count how much time I spend taking meds. Pills in the morning, liquid shots before lunch (no, nothing fun, trust me), another liquid cocktail at night (no, again, not the good stuff), and then more pills before bed.

Then, just for good measure, we repeat the morning bed ritual in reverse to end the day. Good times… not.

None of these issues account for the random unforeseen disease-induced anxiety or stress attack that strikes out of nowhere, throwing the body into an unwelcome state of distress – nothing like kicking a guy when he’s already down, but whatever.

All told, I bet there are 150-200 minutes a day that, to one degree or another, just absolutely suck. The quality of life that has evaporated in these minutes is significant. What were simple daily tasks are now anything but simple. They have become inconvenient. Frustrating. Humbling. Discouraging.

At least I sleep halfway decent. Some nights I may wake up a couple of times a night; others I might sleep straight through. On average, I likely get about seven hours of sleep a night – which is a lot more than when I was pulling all-nighters back in the day. 🙂

Then it dawns on me… get it? After a night? Dawn? Tap, tap. Is this thing on? 🙂

Fine, I’ll rephrase… then something occurs to me. I’m no math major, but I can pass for a math lieutenant, and – here’s the pivot you’ve been waiting for – all that negativity just doesn’t add up.

Sure, I may have 160 or so minutes of pure suckage in my day, but let’s do some math.

Correct me if I’m wrong (don’t bother, I’m not) 🙂 but we all start out with 1,440 minutes in our day.

If you assume the 420 minutes (seven hours) of sleep, that leaves me about 1,020 waking minutes each day.

So doing a little long division tells us that our suckage time is approximately 15.686724509804% – again, just approximating there – of the waking moments in our God-given day.

Wait. Not to go off on a tangent here, but this ain’t trigonometry (tangent? trigonometry? c’mon, you have to admit that was some high-level math humor, especially for a guy who graduated in the top 95% of his class). 🙂 No, this is good ol’ basic math. So correct me if I’m wrong (again, don’t bother, I’m not) 🙂 but it seems I have about six (6!) times the decent time compared to that other stuff.

As I am deep in a moment of battle against these life-changing struggles, dealing with these newfound difficulties in what should be a simple daily routine, frustrated with the increasing lack of independence, and angry about the realities of what I can no longer do, I need to bring myself to a dead stop.

Can you even imagine my situation? Can you even believe the hand I’ve been dealt?

Yes! You can if you think about it this way. I’m blessed with 800-900 decent minutes a day. Blessed, I tell you. Sure, I may not be out running marathons (overrated) or taking salsa lessons (the dance, not the food) 🙂 but that’s fine, really.

I can see the beauty of each new day. I can smell the aroma of freshly brewed coffee or freshly cut grass. I can feel the sun or the rain or the breeze on my face.

I can think and wonder and dream. I can reflect on days gone by and pray for days ahead.

With the knowledge that I can still do all that, where should I put my focus?

I assure you, it’s not on that (approximately) 15.686724509804% part of the day.

This is my journey, and it has galvanized the belief that no one is guaranteed tomorrow. Therefore, I am determined to focus on the gifts I have been given and to appreciate the blessings in my life.

God gave me – and you as well – one thousand four hundred forty minutes at the beginning of this glorious day. What are you going to do with yours? Well, this is the day He made, and as for me, despite the challenges I face, I am going to rejoice and be glad in it. (Psalm 118:24).



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