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.
