Friday, August 22, 2014

The ALS Ice Bucket Challenge

ALS has been close to my heart since my beautiful, sweet, hilarious cousin was diagnosed when she was 44 years old and then lost her battle 3 years ago.

I think the Ice Bucket Challenge is awesome, and I took it last week after being nominated by my dad.  I know my cousin was laughing her ass off from Heaven as this horseface sat in the bathtub and allowed my children to slam me with buckets of ice water.

It was great fun--and of course I didn't stop at the challenge.  I also donated because I want to raise awareness AND funds for research.

I can't post my video here because I write anonymously, but I can offer this post about my cousin's plight with ALS.  I wrote it almost exactly a year ago, on a night when my husband was out of town and I was feeling particularly sorry for myself.

I titled it Something a Little Different because instead of my usual irreverant humor, I got serious. But don't worry--I cussed a lot, so you'll still know it's me.

Something a Little Different
Just last night, I caught myself mentally complaining about the things I had to get done: Clean the bathrooms just before heading off to bed, where I’d only have a few hours to sleep before waking up a little before 5 AM to get some freelance work done; knock out a killer workout; get my kids up, fed, dressed and out the door to preschool before heading to my other jobs, after which I’d need to pick up my kids, play with them, cook dinner, give baths, read books, clean up the house, and head to bed before starting it all over again the next day. Oh, and I think one of us had a doctor's appointment somewhere in there.

I found myself sighing with the misery of it all…holy shit, I’m just so busy, I can’t possibly fit one more thing into my day,I never get time to just relax and do what I want to do, I just need a break, when will I ever get a damned break?

I curled up on the couch for about 30 seconds of quiet before my boys began to jump all over me, knees poking me in the stomach, elbows flailing around my head, and squeals and shouts filling my ears.
I heaved myself off the couch with a “Boys, can Mommy just have a second to herself? One second?”

It didn’t hurt their feelings; they’ve heard that before. Although this year will be a bit different because I’m working full-time, over the past 5 years I’ve managed to maintain a part-time work schedule that allowed me to still spend a ton of time with them, and sometimes I do just need a second.

They resumed their playing, sans Mommy.

Suddenly, though, as I began walking toward the kitchen to prepare my boys' lunch boxes for the next day, a thought occurred to me that almost brought me to my knees.

I thought of my cousin, who died from complications of ALS a few years ago. This horrible disease, one of the most horrible diseases imaginable, works on a person’s muscles, rendering a whole body useless—little by little. It starts with a tingling and works its way through a body. A person has no idea how long she will be able to move her body or how long it will be before the simple functions that most people hardly give a second thought to will become impossible for her.

How long will she be able to chew her favorite foods? Swallow sips of coffee or wine? Move her mouth in order to say words?


A person with ALS doesn’t know. All she knows is that every day when she wakes up, another part of her bodily function will be taken from her until, over the course of several months--years?--everything is taken, leaving only her eyes and brain working so that she’s essentially trapped in her own non-functioning body.

How do you think my cousin would have felt if, before she passed away, one morning God said to her—It’s gone. The ALS is gone. Get up and go about your daily business.

What do you think she would have done?

You bet your ass she would have woken up—jumped gladly out of bed before 5 AM if it meant she could move her body freely, without pain, without fatigue. She’d have attacked that online work happily, every second relishing the fact that not only could her fingers fly across the computer keys as she typed, but those same fingers could once again wrap themselves around that coffee mug and she could gulp down sip after delicious sip without worrying when her throat was going to stop working and she’d never get to drink coffee again.

She would laugh at herself that she had ever grumbled or complained about having to get up to do her job. Because holy shit, she CAN do it! And what else matters?

She would’ve signed off when her time was up, popped in that workout DVD, and started squatting, lifting, and jumping with fervor—joyful fervor. Thinking to herself—Oh my God, oh my dear God, THANK YOU for allowing me to move my legs. And my arms—look at them go!

She hasn’t been able to move her arms and legs in a year—much less use them to get a kickass, awesomely horrible, hurts-so-bad-but-oh-my-God-I-can-DO-it-again! workout in.

Jillian Michaels is being a hardass this morning, but she will never, EVER bitch about having to get in a good sweat session again.

She’d have woken her kids up when her workout was successfully completed, watching in awe as her strong arms worked perfectly to pick her 2-year-old up out of his crib. She’d finally had to give up holding him last year when her arms had stopped working; it had been the hardest day of her life when she’d finally realized she just couldn’t do it anymore.

For the past year, “holding” him has consisted of someone reclining her wheelchair so that they could place her sweet son on her chest and hold him there for her while her arms hung stiffly at her side. But now…now she can throw him into the air and catch him, kissing his adorable, fat little face. Or she can just wrap her arms around him, holding him close to her. Because dammit, she hasn’t been able to do that in months, either.

And when her preschooler wakes up, fuzzy-eyed, and demands a cup of milk?

She won’t even think about inwardly moaning and wondering how in the HELL she’s going to have enough time to get it all done this morning before she has to be at work. Because that doesn’t matter.

What suddenly matters to her in this newfound healthy state is that she can walk to him—holy shit, her legs work perfectly; she hadn’t been dreaming!—and she can lean down, still holding her toddler, and plant a fat, sloppy kiss on her preschooler’s cheek before saying, “Do you want some strawberry powder in that milk?” Because dammit, her hands work!

They hadn’t been able to fasten a button on her shirt in two years and now suddenly, not only can she hold her preschooler’s adorable little hand on the way down the hall to the kitchen—oh dear God, feel his little fingers grasping her hand as he looks up at her and beams, so glad that Mommy can do this again!—but she can also stand on her tiptoes, retrieve his cup from the cupboard, TAKE OFF THE LID FROM THE NESQUICK, and make her son some mother fcking strawberry milk.

And oh, how fabulous it feels.

Could you guys remind me of what I had been complaining about?

Seriously, what was I complaining about again?

Because holy shit.

Sometimes I can be so blind.

To donate, head to, or, if you're a hard copy person like I am and prefer to send a donation in the mail, here's the donation address I found on the site:
The ALS Association Gift Processing Center
P.O. Box 6051
Albert Lea, MN

Click here for the original version of this post, first published on Trashy Blog on August 16, 2013.


  1. What a fantastic post, Shay. We all have those 'oh woe is me' moments, and it's things like this that snap us
    back into reality. You're awesome and this post is brilliant.

    1. Aw, Teri, thank you so much! I owe this post to my sweet cousin in Heaven, who brought my attention to this disorder.

  2. Wow... I feel like I'll never take my ability to move freely for granted again! I hope I remember this post for a long time. My little cousin just passed the Ice Bucket Challenge to me today. When I do it tomorrow, I will be thinking of YOUR cousin as well.

  3. I'm so sorry your lost your cousin to this disease, Shay. I love how the Ice Bucket Challenge is raising funds and awareness, but I appreciate your post even more. You put my daily grumblings about minor things into perspective.