AP Article: "A
Mother's Gentle Honesty..."
Following is a link to the January 2007 article written
by Martha Irvine of the Associated Press.
A mother's gentle honesty...
“They see me struggle and they worry”
The News Sun (Waukegan, IL)
September 8, 2006
Section: MAIN
Page: 4
By: By
Frank Abderholden
Grayslake woman's brave battle with
ALS fabderholden@scn1.com
This 37-year-old mother of three is forthright about her disease and retains a tight grip on her sense of humor, even though
she cannot grasp the cap on a pen and pull it off.
Probably the hardest part of Aimee Chamernik's life in Grayslake is not the deterioration of her young body,
but explaining to her children that in the not too distant future she is going to pass away because of amyotrophic lateral
sclerosis (ALS), better known as Lou Gehrig's disease.
"They definitely worry about things most 9- and
6-year-olds don't worry about. They see me struggle and they worry," she said of her children, Nicholas, 9, Emily,
6, and Zachary, 2.
"But we keep them a part of the conversation and keep them
informed as to what's going on," she said. Her husband, James, agrees.
"It
may seem counter-intuitive, but often kids are more scared when they think the adults around them are hiding something, and
they feel they can't ask questions and trust the adults to give a straight answer," he said.
Aimee says they have a rule, "There is no question
that is off limits," she said.
"They pick up on so much
emotionally, that's why honesty is so important," she said. And that can mean some hard questions, like the one Nicholas
asked about the survival rate being between two to five years with the onset of the symptoms.
"He
asked, 'Does that mean we have one year left?'" she said.
"We
can't know exactly how much time we have," she answered him.
So she
stays focused on the important things.
"We try to squeeze in as many good
memories as possible. We're here now. I want to use the time we have right now to have as much fun as we can," she
said.
On Saturday the whole family will be joined by friends and former co-workers for the
fifth annual ALS Walk4life at Montrose Harbor in Chicago where her "Ask about Aimee" team has set a goal to raise
$15,000 for the Les Turner ALS Foundation.
"I was diagnosed Sept. 8, 2004...not
that we're going to celebrate or anything," she said dryly about the two-year mark.
The
symptoms started 18 months earlier, the first being slurred speech. "I was reading aloud at night to my children and
my son would correct my enunciation. I chalked it up to be tired," she said.
But
when she mentioned that to her doctor, her doctor didn't think that sounded right and she went through a battery of tests
before the final diagnosis. There is only one drug approved by the Food and Drug Administration for ALS called Rilutek. It
has shown modest effects for slowing down the progression of the disease.
"And
that's really it. Although there are lot of different supplements people are trying," she said.
She can also take medications that help her deal with other symptoms. Strange
effects of the disease are illogical responses to things she experiences. "When a child gets hurt I laugh. It's very,
very frustrating thing, especially for the kids. They rely so much on non-verbal body language. I'm much more likely to
laugh when I'm concerned or angry," she said.
She uses a cane to help her
coordination and balance and she will play catch with the kids in the house because it is safer than the uneven ground outside.
Aimee knows a cure may not be found for her but she hopes medical advances such as stem cell research will get more of a boost.
She was disappointed with President George Bush's recent veto of a stem cell bill.
She
explains that she won't debate the sanctity of life, but "I don't understand how just throw away frozen embryos.
That to me is unforgivable. All types of patients could be helped by the research," she said, citing recent work that
found stem cells helped mice with ALS improve muscle movement.
In the meantime she is concentrating on her family and answering
those darn kid questions, like Nick asking if she was worried that Zach might not remember her when she is gone.
"I told him that I definitely worry about that, and I also worry that he might
not be able to remember me. But all I can do is keep fighting as hard as I can. And I let him know I'm counting on him,
his sister and dad to show Zachary lots of pictures and tell him lots of stories to help him know me," she said.
© 2006- News Sun, The (Waukegan, IL)
Make A Difference!
Following is a letter submitted to the Chicago Tribune's "Voice of the People" section (letters
to the editor) in response to repeated coverage of the Marshall Field's name change to Macy's.
November
24, 2006
A dying woman's message to those lamenting the loss of Marshall
Field's name: Please find something meaningful to do with your time!
I am appalled at the number of letters and inches of column space in my beloved Chicago Tribune
that have been devoted to the Macy's/Marshall Field's name-change "scandal." I'm disturbed at the
intense public outrage--in the form of marches, calls for boycott, and letters, letters and more letters--regarding one company's
exercise of its legal right and execution of a sound business decision.
I implore you folks who are so incensed by Macy's unconscionable audacity to find another cause that truly matters.
A 37-year-old mother of three young children, I spend
as much of my time as possible trying to forge some of those great memories you frequently reference in your letters--knowing
that someday soon, that's all my kids will have of me. In my spare time, I try my hardest to raise awareness of the disease
that will soon take my life: amyotrophic lateral sclerosis (ALS, more commonly known as Lou Gehrig's disease), a disease
that snuffs out the lives of most patients within two to five years of diagnosis.
I've written to members of Congress in support of legislation aimed at better data collection
and sharing. I've written commentary for the Les Turner ALS Foundation's monthly newsletter ALS Today.
I worked hard this summer to field a team for the
foundation's 5th annual ALS Walk4Life--that, in a twist of irony and extreme bad luck, just happened to fall on the same
day as one of your silly protest rallies. (Sadly, the news coverage of your bitterness and self-absorption eclipsed the messages
of hope and optimism of the 5,000+ supporters who worked tirelessly to raise money and raise the profile of this indiscriminate
killer.)
I've overcome my reluctance to becoming
a "poster child" for my disease and created a website (http://www.askaboutaimee.com) that gives voice to the thousands
of ALS patients who are no longer able to speak for themselves. My family has been profiled in several local newspapers in
an effort to further educate the public. Members of my family will join me in Washington, D.C. in May for ALS advocacy days
on Capitol Hill.
All this, and daily I struggle
mightily just to lift my foot high enough to climb into a car or to hoist myself up from a chair, a couch--even the toilet.
My speech has deteriorated to the point where waiters and sales clerks presume drunkenness or mental impairment. But I channel
my meager energy and enormous frustration into trying to make a difference, so that someday no family will have to experience
the devastation mine now knows.
So how about
it, Macy's haters? Aren't you ready to put aside your anger and use your passion and energy to make a real difference
in the world?
We could certainly use voices
such as yours raised in outrage over the fact that 65 years have elapsed since Lou Gehrig's death, and there is still
no cure for ALS. We could use your letter-writing skills to implore folks to care about the 5,600 Americans who lose their
battle with ALS each year (an annual death toll that exceeds that of the September 11 terrorist attacks). We could use your
enthusiasm for effecting change to help in our many fundraising efforts to support the research that will someday lead to
an effective treatment or a cure.
And if
you're not moved to fight on behalf of the ALS community, please find another worthwhile cause to join. Fight poverty
and homelessness. Fight human rights abuses. Fight discrimination in all its forms. Fight drunk driving or teen pregnancy.
Fight cancer or AIDS or diabetes or Parkinson's disease or Alzheimer's disease.
Just, please,
fight for something that will make a real difference in the world!
Aimee Chamernik
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