What Were You
Doing at 3:23 a.m.?
I wake to find that I’ve been sleeping on my back again, and my lower back screams in protest as I try to shift positions.
I feel as if I’ve spent the last five hours hog-tied (reverse hog-tied?) and dipped in cement, my back arched into a
painful curve and left to harden.
Every fiber of my lower
back is demanding that I roll onto my side and curl my body forward into a fetal position. I know the relief will be immediate,
the forward curl countering the effects of the hours on my back. I’m practically drooling in anticipation of my sweet
deliverance. As it does so often, my mind taunts me with the familiar Nike refrain: Just do it!
Oh, how I hate the team responsible for that ad campaign!
I groan as I gather all my strength and roll 6 millimeters
to my right. Pathetic.
my left arm and place my hand behind me on the bed as near as I can to the middle of my back, gritting my teeth and ignoring
the pain. Pushing with all my might, I try to force my body onto my right side as I pull my right elbow in under me. Straining,
straining, straining, and…
I lunge to the right again, this time scrabbling to grab onto a pillow, the blankets—anything
to anchor myself and yank myself up onto my side. Flailing, flailing, flailing, and…
My mind is still foggy from sleep
as I try to think logically about how to move my unresponsive body. I’ve been here before often enough—what worked
last night? The night before? The night before that?
Just do it! I snort derisively.
Maybe I should try using momentum to propel me up onto my side. It works sometimes
when I’m trying to stand up from our saggy couch. If I just rock a bit I might be able to get enough oomph to get up
onto my hip and shoulder. I heave to the right, huffing and puffing, grunting, struggling mightily to get something going.
Rocking, rocking, rocking, and…
After 8 minutes and many more futile attempts, my forehead is damp and I swear profusely
under my breath. Will it even matter if I get repositioned? At this point, I am fully awake. I savor a particularly nasty
epithet for the Nike advertising executives.
I grab my electronic sudoku off the nightstand and sigh heavily. Which is worse: the pain in my back, or the claustrophobia
of knowing I can’t do a damn thing about it? I turn my attention to the sudoku game. The best option right now is to
get my mind off of both and wait for my limbs and body to come to life.
Wait. Scratch that: the best option right now is to be thankful that my limbs and body will come to
life. It could be worse. It will be worse. It will definitely be worse.
I force myself to consider how fortunate I am that, at this point, my near-paralysis is limited to the wee
hours of the morning. My muscles, so useless right now, will slowly regain some strength, and that strength will build as
the day progresses.
I am lucky.
Later today, I will read the newspaper—snapping the pages, folding them over,
and casting them aside as I finish perusing a section. I will drink some coffee, and if I want a refill,
I’ll pick up the pot and pour it myself. I will hoist myself out of bed and make my way to the bathroom. I’ll
take a shower unassisted, and I’ll dress myself.
I’ll hobble around the house with my cane. I’ll sit on the floor with Zachary and build a train track, and then
I’ll crawl over to the chair and push myself up to standing. I’ll make and eat lunch. When Nick gets home, I’ll
sit at the kitchen table and supervise his homework, writing out examples when he gets stuck on how to approach a tricky math
problem. When Emily gets home, I’ll help her string macaroni for her “100 Day” project.
While none of this will be as easy as it once was, I am fortunate that 3+ years into
my ALS diagnosis, I still have the physical strength and coordination to just do all of this. (Yes, that’s
a grudging nod to the Nike ad execs.)
I won’t deny that it sucks
to be in tremendous pain and unable to roll. We need to rig something to help with that or get a new bed that will roll me
itself. But think about that for a second: Isn’t it wonderful to live in an era where a bed can do the work?
Maybe rolling over on my own has become a thing of the past for me. So what? Toss
it on the pile with running, jumping, giving piggyback rides, taking stairs two at a time, shoveling snow, and hundreds of
other activities that aren’t actually necessary. Life can be—and is—rewarding without them.
Yes, it’s a challenge to find new pursuits to replace the ones that are lost;
and yes, the replacements will, by necessity, become more and more cerebral as time marches on. But the computer-based options
are truly staggering.
I already find myself making
mental notes when I stumble across an idea for how to continue to be productive when more of my muscle groups have succumbed
to ALS. I know that my emotional well-being is and will continue to be contingent on my ability to just do something
Electronic scrapbooking? Awesome!
eBooks? Fantastic! Organizing and editing my random half-finished essays into coherent entries for this website? Fabulous!
Being more involved in ALS forums and advocacy? Absolutely!
In the meantime, there is still much I can just do—through the same fire, grit, and determination shown by
the Nike warriors in that venerated ad campaign.
I am one of the lucky ones, and
I know it. So it’s time to take down the streamers, release the balloons, cancel the pity party. It’s time to
be grateful. Time to shift the focus to what I can do. Time to get busy making the most of the life I have right
Time to—in the words of that illustrious
Nike ad team—just do it.