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January 31, 2008

What Were You Doing at 3:23 a.m.?

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.

I lift 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 worthwhile.

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 now.

Time to—in the words of that illustrious Nike ad team—just do it.

11:54 am cst          Comments

January 9, 2008

There and Back Again


Well, my stylist and I have finally returned from our grand quest to destroy evil forever. Sorry we weren't able to keep you updated on our progress: Rivendell and Lothlorien still don't have high-speed internet access, and Isengard and Mordor...well, not even the scurvy curs at Comcast will service those areas. The good news is the orcs were lulled into thinking I was harmless by my flowered cane and slow gait. The bad news is I did not get to meet Viggo Mortensen.

I ran into a spot of trouble and was held captive these last three months by a traitorous wizard and his sniveling sidekick. I thought I'd purchased my freedom with 500 exquisitely decorated homemade cut-out sugar cookies (Halloween, Thanksgiving, and Christmas--as well as bowling balls for a sweet maiden named Emily's birthday) and an assortment of birthday cakes and cupcakes; however, my captors reneged on the deal and forced me into slave labor wrapping presents and leading the children of Rohan in craft projects designed to hide explosives that would destroy their lands. I wrapped and crafted 'til my fingers bled and my neck could barely support my head. I tended to their sick and succumbed to illness myself.  In a moment of fevered delirium, I ordered Christmas cards--fully believing I would be released in time to send them out. Though I bided my time and patiently awaited an opportunity to slip away, my optimism gradually gave way to despair.

When all hope was lost and I had resigned myself to a life of servitude, a blinding flash of light sent my tormentors and their minions scattering with much cursing and gnashing of teeth: the dazzling light revealed my wise, worldly, and fashionable stylist Amy, complete with perfectly coifed hair and fantastic jewelry. She had carefully plotted my escape by arranging for us to go underground masquerading as members of a scrapbooking cult. We checked into the Marriott Lincolnshire under assumed names, greeted fellow cult members with the appropriate scrapbookers' handshake, and immersed ourselves in their language, bandying about terms like "power palette" with reckless abandon.

Alas, the cult leaders weren't fooled--our meager supplies and inferior work products marked us as novices and attracted their attention right away. They put us through 48 hours of hotel-ballroom-chair torture; to make matters worse, they cruelly positioned a cult member with a High School Musical ringtone in close proximity and arranged for her to receive calls every three minutes.

But they could not break us, and in the confusion of the end of the weekend's gathering, we were able to sneak away. With Sauron's attention focused squarely on the Marriott and the Ringwraiths circling overhead, we lobbed the Ring of Power into the fire from whence it came and were home in time for supper.

Hunched and bloodied but with spirits unbowed, we return to the warmth and comfort of hearth and home with high hopes for the new year.
2:58 pm cst          Comments

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Welcome to Aimee's Blah, Blah, Blog...
With great trepidation, we introduce the latest feature on a blog.

We acknowledge the pathetically long gaps between new entries to the website, and we appreciate the gentle prodding from visitors who would like to see more frequent updates about what's keeping us busy. 

So, in an attempt to dispel the notion that Aimee lounges at home all day in her World Series Champions gear (okay, that part is true) with her feet up (never!), eating bon-bons (often) and catching up on the latest trade rumors and spring-training reportswhile Jim is out saving the world in his S-emblazoned red cape, of course—we are experimenting with a blog to provide (weekly? biweekly? monthly?) updates on our activities.

However, come Opening Day, we're not promising anything...

[Note: Aimee is the author of the blog. All first-person accounts are hers unless otherwise noted. Any pro-Cubs entries are obviously the unauthorized work of Jim and should be reported to the proper authorities immediately.]