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February 25, 2007

Falling in Public

So Friday night I went to scrapbooking night at my friend Lisa’s house.

Lisa, a Creative Memories consultant has an awesome basement: a large well-lit room with a bunch of huge tables for spreading out to work and a smaller room just off the big one where she stores and displays her product stock. We usually gather in that smaller room at some point during the evening to see and hear what’s new and pass the products around.  

As usual, I was the last to arrive in the room—I’m painfully slow at getting up and getting moving—so I was trying to stay near the back and avoid causing a disruption. Yeah, right…so much for being unobtrusive! 

As I put my hand out to rest it on the handle of a wheelie scrapbooking travel case (CM’s Memory Mate Decorative Tote with Cart, yours for just $110) the handle dropped, startling me just enough to trigger my hyper-reflexivity—in this case, a massive, full-body shudder—and throw me off balance. I fought to keep my feet as a concerned murmur arose amid the gathered women, but in the end gravity won. (Damn Newton and his apple!) Slowly, slowly, my weight shifted too far back, I couldn’t move my right foot back in time, and I toppled back onto the plush carpet. 

As far as falls go, this one was pretty graceful (stop snickering, Amy!) and painless. It was definitely worse for my audience than it was for me.

I looked up into some mortified faces, some not sure where to look, and my instinct to try to put others at ease kicked in. 

“Ta da!” I trilled, with a sheepish grin. 

Not everyone heard or got the joke—as far as I could tell only my friend Amy laughed—but I felt better for trying. I gratefully reached for the folding chair Chris offered and hauled myself up onto it. And the night continued without further mishap…

At 2+ years into my life with ALS, my audience is much more upset when I fall than I am—and I feel a responsibility to alleviate their discomfort. But my motives aren’t purely altruistic: deep down I fear a time will come when people won’t want to be around me because my ALS makes them uneasy, and I’m doing my best to forestall that day. Thus, “ta da” has become a go-to weapon in my comedic arsenal.

Later, back at home, I thought about falling (and all the other ways I can embarrass myself in public: spilling, prolonged choking, laughing too hard or inappropriately, my garbled speech, etc.) and how far I’ve come. 

Initially, as my balance began to fail me, every fall caused a seismic jolt to my psyche. Whether I bled or bruised or not, my mental state was battered by the brutal reminders that ALS is constantly gaining ground. While the throbbing would subside within the hour, the anguished feelings of powerlessness would linger. My mind would take off, churning through the effects of this hideous disease and the horrors yet to come. The fear would consume me, sapping my energy and my will, breaking my spirit.

But no more. This is where I can really recognize the incremental growth in my mental toughness. 

No broken bones? No stitches required?
Bah! If it doesn’t generate an insurance claim, it doesn’t count. 

I’ve come to realize that I simply don’t have time to indulge in sulking; I can’t afford to turn a minor fall into a major meltdown. And my best strategy—for myself and others—is to try to ease the tension by going for a laugh.

J.K. Rowling got it exactly right in Harry Potter and the Prisoner of Azkaban. As Professor Lupin explains to Harry and his Defense Against the Dark Arts classmates, the way to defeat a boggart (a monster that takes the form of your worst fear) is to use the ridikkulus spell (to picture it transformed in some humorous way, laugh at it, and shout the spell).

I reflect on Rowling’s genius often as I choose to laugh at my ALS. Making light of my ALS mishaps reduces my disease’s power over me. My body may crumple to the floor, but my resolve to live each moment fully will not crumble. 

And just to be safe, I’ll be packing my red clown nose for the next scrapbooking night…
5:58 pm cst          Comments

February 15, 2007

What We're Doing Besides Digging Out...
Wow! With the flurry of recent activity, we simply cannot keep up.

First, we are so grateful for the prayers and encouragement we continue to receive on a daily basis. We draw great strength from the messages of support and love.

We are excited about the many links to other ALS patients’ websites, and have begun adding them to the “350,000 Stories” page. We are thankful for the many other suggestions regarding this website and are eager to continue to expand it. The website is still in its infancy (just passed the six-month mark!), and we are still getting the hang of the site-builder software.

Aimee will be adding more of her essays to the site in the coming weeks. She is currently hard at work on articles for Chicago Parent magazine, the MDA’s ALS Newsmagazine, and IWU’s alumni publication, Illinois Wesleyan University Magazine. Please continue to bear with her; she will be writing for this website again soon.

We were inspired by the passion of the organizers and participants in the “War on ALS” Spin-a-Thons held in 17 locations in the U.S. and Canada on February 10. We had a chance to visit the event at the Buehler YMCA in Palatine and couldn’t believe the energy and enthusiasm on display. Thanks to all who participated—on the bikes, behind the scenes or both—to make this event a great success!

The ALS Registry Act will be reintroduced in the coming weeks, and we are intent on doing all we can to spur this Congress to act on it. Please, if you have a few moments (literally 5 minutes—c’mon everybody’s got 5 minutes, right?), visit the ALSA Advocacy Action Center (link on “Your Turn” page) and send an email to your members of Congress asking them to support the ALS Registry Act.

We are officially registered for Advocacy Days May 14-16 in Washington, D.C. We are eager to meet other advocates from across the country and join with them to bring attention to the issues that are important to ALS patients and families.

Okay, now back to the brilliant bloggers at Viva El Birdos…(
12:22 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.]