Aimee's Writing

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Statement to Members of Congress: Why ALS Matters

Last week I met an eight-year-old who knows how to change her dad’s feeding tube.

She’s a dark-haired beauty with wide brown eyes, a typical second-grader who shrieks and laughs as she plays tag with other children.

But when I look in her eyes, I see an old soul: a child who has witnessed the total physical deterioration of a human body. She has seen something most adults haven’t seen—won’t see—in their lifetimes.

She knows how to change a feeding tube because her dad has amyotrophic lateral sclerosis, or ALS. The feeding tube became a necessity when her dad lost his ability to chew and swallow, and it became his only means for maintaining his weight and his life.

It’s a skill most ALS children will eventually learn.


Recently we went to Open House at my son Nick’s school. Lining the walls were autobiographical poems written by Nick and his classmates. Each of them included a line describing the student’s greatest fear.

While some fourth-graders bemoan the challenge of long division and others divulge their arachnophobia or fear of the dark, Nick expresses his fear that I will die before a cure for ALS is found. I wince at the stark contrast between the other kids’ typical childhood fears and my own son’s daily struggle with my life-and-death fight.

While spiders and long division may inspire passing dread, Nick lives with his very real fear every time he watches me shuffle across the room, every time he sees me struggle to hoist myself from a chair, every time he hears my guttural, slurring voice.

There is no cure for ALS. Without a cure, I will die.

That is not fear; that is fact.


The eight-year-old has already been down the path of fear.

She’s watched helplessly as her father has slipped away bit by bit. Her worst fears will soon be realized.

Now her dad is in hospice, the second-to-last stop in the downward progression that is ALS.

She is hard at work crafting a tribute to her father, the words she wants to speak about him at his funeral. She has chosen scriptures and music to celebrate his life and to comfort his mourners.

She is eight years old.


My own daughter, Emily, is seven years old.

Emily barely remembers a time before it entered our lives. Every now and then, she surprises us with a memory, jarred loose by a word, a sight, a sound.

“Remember when you played hide and seek with us at that park?” she asks one afternoon, as I glance out the window of the van and catch a glimpse of the bright red slides.

I remember.

I remember going to the park when I really felt like staying in bed and pulling the covers over my head, curling up in the fetal position, and drowning myself in a puddle of self-pitying tears.

I remember slapping a fake smile on my face for my kids, knowing that ALS would cut their childhood way short and deciding it would not begin on this day.

I remember scaling the climbing wall at the park, looking at my arms and legs as if I’d never seen them before, unable to comprehend that I was running out of time to use them.

I remember huddling in the tunnel slide as Emily conducted her search of the equipment wondering, if I hide well enough, will ALS not be able to find me?

I remember feeling the wood chips shifting under my feet, imagining that at any moment they might open up a gaping hole that would swallow me, as if I’d never been there—thinking that might be a more merciful end than what was in store for me, for all of us.

I remember marveling at the fact that I was showered, dressed and at the park, playing and laughing and chasing a squealing Emily as if nothing were wrong.

I remember praying my kids would remember me like this.

I’m thrilled that here we are, two-and-a-half years later, and Emily remembers.

“I wish we could do that again,” she says softly, longingly.

And suddenly, I find myself wishing she couldn’t remember after all.


What memories of her father will that brave eight-year-old carry with her?

Will the images that flicker to life on the screen of her memory be riddled with telltale signs of ALS, crowding out the images of happier times? Or will she be able to cast her mind farther back to a time when A, L, and S were just letters of the alphabet song, and her dad played and talked and ate and carried her up to bed when she had fallen asleep on the car ride home?

Will she remember his voice? Will she remember him pulling her close and telling her how much he loved her? Will she hear the echo of his voice, his guidance, when she’s searching her heart for advice he’s not there to give?


I wonder these things about my youngest son, three-year-old Zachary.

I run the calculations in my head, trying to figure out the likelihood I will live long enough for him to have some lasting memories of me. Sure there will be photos and video snippets, stories told to him by our family—these may help him manufacture “memories” of a mom he barely knew.

But at what age will he be able to draw upon his own experiences of life with me?

If I make it two more years, he will be five; three more would make him six. Will that be enough?

And just what, exactly, is “enough” when we’re talking about a mother’s presence in her children’s lives?

I know this: Zachary will never know me—know life—without ALS. My earliest symptoms began during my pregnancy with Zachary.

In fact, his physical growth and development seem to have an inverse relationship with my own. For every milestone we have celebrated with him—standing, cruising along furniture, walking on his own, and finally running full throttle as fast as his chubby, toddler legs would carry him—my steady decline has mirrored his gains. I went from running four miles three times a week, to walking, to walking stiffly with assistance.  And now, just as he has outgrown his stroller, I have begun using a wheelchair.

While Zachary’s language skills are beginning to soar, my inability to enunciate has caused my once-rich vocabulary to plummet. I’m sure my family never thought they’d see a day when I would routinely give one-syllable answers! And now that their wish has been so cruelly granted, I’m sure they would do anything to have the “old me” back.


And while our family bears the brunt of my diagnosis, we are by no means the only ones touched by it. My one ALS case affects hundreds of people, whether they know it or not. Sure, there are the obvious connections—my family, my friends—but there are also more subtle ways this disease is robbing my community.

I used to be active in my children’s schools, serving on the board of directors for my kids’ preschool and my church’s child care center, teaching Sunday School, volunteering for PTA events at the grade schools. When my employer and church signed up for Habitat for Humanity home-building projects, I was thrilled at the chance to participate and to help families in need.

But no more.

Today, I am limited from participating fully in my community by a disease that renders me unable to wield a hammer or hold drywall in place, unable to man a booth at the PTA Fun Fair or help out at book fairs, unable to volunteer to read aloud to my daughter’s class.

Today, instead of devoting my energy and enthusiasm to local leadership roles, more and more I find myself squirming uncomfortably on the sidelines. Worse, I’m increasingly alarmed to find my family on the receiving end of others’ time and resources.

And I am not alone.

My husband, Jim, has abandoned any pretense of community involvement in favor of grocery shopping, doing laundry, and picking up the slack around a home I can no longer maintain.

I realize we are just one family, one ALS diagnosis. But the impact on our family and community is just one story representing the thousands and thousands of families who do their best each day to deal with ALS.


How many people in your district or in the State of Illinois are affected by ALS?

I can’t tell you. Nor can anyone else.

The reason we don’t know that number is that there is no comprehensive database where ALS patients are counted. Currently, we cannot track demographic, geographic, and environmental factors related to ALS patients.

The ALS Registry Act, H. R. 2295, and its companion bill that was introduced Tuesday in the Senate aim to change that.

Please sign on to co-sponsor this important legislation. Not only will a national registry provide better tracking mechanisms so we can measure the true impact of ALS, it will enable researchers to narrow their search for commonalities among ALS patients. And the first step toward finding treatments for ALS is to unlock the mystery of what causes it.

On living with ALS...

"Mommy, why did your muscles stop working?" That's a question Aimee never planned on having to answer.

Following are columns she wrote for the Winter 2005 and Summer 2006 ALS Today newsletters about answering this question and living with ALS.

Today's Entry in my ALS Journal

“Mommy, why did your muscles stop working?” Emily asks, as I spread a glob of jelly on her peanut-butter-and-jelly sandwich. And so begins an impromptu discussion of ALS with a 5-year-old—no warm-up, no lead-in, no warning this explosive question was on today’s agenda: 1) shower; 2) get dressed; 3) go to Target; 4) make lunch; 5) explain to Emily how ALS is killing her mommy? Where did that come from?


Yet here it is, shattering the most ordinary moment, shaking me to the core. Deep breath: it’s show time.


“Wellll…” I begin, shamelessly exploiting my already-sluggish speech to buy more time. Anything to buy more time. We review basic human anatomy, focusing on the brain and muscles first. She nods, and chimes in with what she knows. So far, so good. But how to explain motor neurons to this wide-eyed angel? How do I tell her mine are dying for no apparent reason? How do I protect her from the pain of learning her mom is literally wasting away, yet still keep my promise to always be honest? How do I answer questions of life and death when I don’t understand myself?


As my mind races along I hear a calm voice—is that my voice?—matter-of-factly explaining how motor neurons are like mailmen. And while some of my “mailmen” are still delivering messages from my brain to my muscles, others have parked their mail trucks and are headed off on vacation to Florida without delivering their letters. Nothing scary about Florida, right? Sun, beach, palm trees, Disney World.


Did I just tell my little girl I’m dying with an analogy of mailmen abandoning their routes to go to Disney World?! Yep. I thought so.


And just as suddenly as it began, the conversation is over. She got what she needed, and now she’s moved on—leaving me gasping for breath, my mind a whirl of disjointed thoughts about ALS, what it’s doing to my body, what it’s doing to my family, what the future holds for all of us. I wish this were an isolated event, but at age 36 I find myself in unexpected conversations or situations many times a day:


  • Like when a waitress looks at me strangely as I struggle to place my order—to speak clearly—until finally, meekly, I point out my selection on the menu.

  • Like when I take a sip of my coffee but my throat won’t cooperate and I wear a telltale brown stain down the front of my shirt, a mocking reminder of the fact that swallowing can no longer be taken for granted.

  • Like when my 2-year-old says “More milk!” and I go to the fridge to pull out the nearly-full gallon and my wrist collapses under the weight, spilling all over the kitchen floor as my 2-year-old repeats insistently, “More milk! More milk!” I smile grimly. Don’t cry over spilled milk. Right.

  • Like when we go to school for Open House and we park in a handicapped spot and other parents stare, unable to see the insidious disability robbing me of balance, coordination, strength. I avert my eyes, embarrassed, wishing more than anything I could park a mile away and walk confidently from there to the school entrance.

  • Like when another ALS patient laments the possibility of not reaching his 50th wedding anniversary next year. I know that without a cure, I won’t live to see my 50th anniversary. Or my 40th. Or 30th. Or probably even my 20th. The odds are definitely stacked against us. My mind shifts to Jim, my staunchest supporter, my tireless advocate, my best friend. He might make it to 30 or 40 with his next wife, I muse. After all, he’s so young. We’re so young.

Just recently I found myself flat on my back in the Kohl’s parking lot with three scared, small faces looking down at me, my elbow and hip throbbing from the impact with the pavement. “Are you okay, Mom?” my 8-year-old asks anxiously. Did I just tip over backwards? Is this really happening? Can I just melt into a puddle of tears and disappear like that wicked witch in the Wizard of Oz?


I pause, finding the answers in those faces. Yes, yes, and no, I conclude. This is a teachable moment, an opportunity to show them how you deal with adversity. Be grateful you can still get up! Do it while you can! ALS can defeat your body but not your spirit. You’re a fighter! Show them what you’re made of! Get up!


I smile brightly and scramble around trying to get to my feet. After a couple of false starts, I finally work myself to standing and brush off my jeans. "Let's go get those school clothes!" I chirp, and, reassured, these amazing children—children who are being forced to grow up much too fast, children who worry about whether mom might fall and need help while they're at school, children who know more about motor neurons than most adults—giggle and skip along as we head into the store.

Catch in a Folding Chair

“So, can we? Can we? Please, please, pleasepleasepleasepleaseplease?” Emily drops to her knees, affecting her most anguished look, despite the tiny smirk lurking at the corners of her mouth.


Emily arrived home moments ago, bursting through the front door, dropping her backpack with a thud, announcing that the teacher who leads her bus line told the kids they should play outside today. Is she nuts? It’s 40 degrees out and dropping fast as the sun fades. Officially, spring started yesterday. Unofficially, spring won’t hit the Chicago area for at least two more months.


I know they mean well, encouraging the kids to get some exercise instead of plopping in front of the TV or sitting transfixed by Gameboy for hours after school. But I don’t do well in the cold. My muscles stiffen up even more than usual, and I can hardly move my jaw to speak.


Reflexively, I start to make the “it’s too cold” argument. But confronted with Emily’s adorable face—which has registered a whole range of expressions from mournful to hopeful, as she searches my face for a hint of my answer—I find I can’t. How many days of playing outside are left in this body of mine? I can’t know. But there’s no sense letting this one escape without at least trying.


“Okay, let me grab my coat and shoes,” I smile.


“Yesss!” she exults, with a fist-pump to rival Tiger Woods. How can I pass that up?


Out in the garage, she rustles up her baseball glove, a ball, and a selection of gloves for me. “Do you think we could play catch?” she asks.


Hmmm. A true game of catch isn’t really feasible with my limitations. I know that if I try to stumble around the yard retrieving errant throws, I’ll lose my footing within the first few steps, ending the fun almost before it begins. But let’s see what we can do. I grab a folding chair and set it up about ten feet from her.


“How about if I sit here, so I don’t fall down trying to catch the ball?” I suggest.


“Okay!” She’s wriggling with excitement at just being outside after a long stretch of cold and rainy weather, not caring if I needed to play catch from a gurney.


And this is what I need to remember: She’s just happy to be playing with me. Period. She doesn’t have any of the hang-ups I have about what a game of catch is supposed to be. While I sit heavily on the chair, lamenting my loss of mobility, balance and coordination, she skips around delighted that she has my undivided attention.


I wish I could move that freely. I close my eyes and try to remember what it feels like to skip. In my imagination, I skip effortlessly around the yard, left-left, right-right, left-left, right-right, my quads pumping, my feet pounding out the repeating pattern. But when I open my eyes, my reality hits me squarely between them.


The sad thing is, I briefly consider it: Is there a way I could skip with a cane? I grimace at the mental image. Nope, who am I kidding…I can’t skip, not even close.  Part of me marvels at the physical dysfunction; I’m continually amazed that no matter how hard I try, sheer force of will is not enough to make my body cooperate.


But, this isn’t the time to focus on what I can’t do. Emily’s winding up, ready to give me her best delivery.


“Ready, Mom?” she grins as she flings the ball in my direction. I reach for it, and it snuggles deeply into my glove. I can still catch. It feels good, and I pause to soak it in—the weight of the ball, the smell of the leather, Emily’s eager face, the moment. I flip it back to her, and she gloves it easily.


“I have an idea—let’s keep track of how many catches we can make, okay?” she suggests. She starts counting with confidence as the ball zigzags between us. She pauses briefly at 23 when the ball pops loose from my glove and again at 41, when I fail to snag a low throw that bounces past my chair. Before I can get to my feet, Emily’s already retrieved it. She bounds back to her position, and I drop gratefully back into the chair.


We continue tossing the ball back and forth, occasionally giggling at a particularly wild throw or dazzling catch. A few more skip past me, but she chases them down before they even roll to a stop. It doesn’t bother her for a moment that she’s having to back me up. I try not to let it bother me.


As the numbers climb, we’re laughing more and more. Emily breaks into a joyful scream, jumping up and down when we hit 100, her eyes wild with excitement. She grows even more animated with each new milestone, adding a questioning inflection as she reaches the unfamiliar territory of the 120s, 130s, 140s.


“Whoa! I’ve never counted this high!” my six-year-old shrieks at 150. Her enthusiasm is contagious, and as I admire her pink cheeks and glistening eyes, I can’t help but be caught up in the fun. My spirits raise higher and higher as our catch count climbs, and her squeals soar into the stratosphere.


Finally, when we reach 180, she’s had enough. I’m surprised her attention span for baseball lasted this long. My fingers are stiff, and my jaw will hardly move but I’m glowing. I love my daughter, I love baseball, and I’m glad to have had the opportunity to play catch with her. My sappy mind wanders to the closing frames of “Field of Dreams” when Kevin Costner’s character finally plays catch with his father. I must have the same goofy grin on my face, even as my eyes well with tears.


I’m so glad we came out. As we pack up our gloves and return the folding chair to the garage, I say a silent “thank you” to the teacher who suggested playing outside.