 Those who came also spent a moment visiting with the star of the
evening, Michelle Conrady-Brown. Michelle is Lincoln's face of an
insidious disease called ALS, amyotrophic lateral sclerosis.
ALS, known to many as Lou Gehrig's disease, is a
neurodegenerative disease that usually attacks both upper and lower
motor neurons and causes degeneration throughout the brain and
spinal cord. Currently, ALS has no known cures and those diagnosed
are given only a calendar with a date as to when they will succumb
and die from the disease.
Michelle is still alive and smiling, and the family is filled
with hope since her last treatment. According to family members, she
has shown a small but important improvement in her sense of balance,
hand strength and stamina.
The procedure was done in Monterrey, Mexico, because our
government isn't sure if the treatment is safe or not. "Safe or not"
isn't in the vocabulary of a person who has been told they will die.
There lies just one of the obstacles that people with ALS must face
and try to overcome.
The event on Friday was a prelude to Lincoln's first ALS Walk,
which was held Saturday morning at Kickapoo Creek Park. Over 120
individuals of all ages gathered to walk and to learn more about ALS.
For many, the events were to help their friend Michelle as she
continues her battle with ALS. Others at the walk on Saturday were
there because they are the kind of people who take helping others as
a principal matter in their lives. They don't have the disease. They
don't know anyone who has the disease, including Michelle, but they
do know they want to help.
At Chad's the population was principally adults, with small
children flitting about the beer garden on a night of calm winds and
soft skies. At the walk on Saturday, the crowd was divided almost
equally among adults and young men and women in their upper teens.
Organizers of the walk all remarked how good it was to see so many
youngsters get involved in an era when our youth are too often
discounted as not caring enough to become involved in life issues
outside of their own.
The Mount Pulaski Honor Society led this vanguard of youth. But
there were perhaps 50 young people from Lincoln and other
surrounding towns there as well.
The walkers also heard information about the disease from ALS
Worldwide founders Steve and Barb Byer, who explained what is
currently being done and why efforts need to be increased to rid the
world of ALS.
The Byers talked about ALS and their son Ben, who died of the
disease in July of 2008. The Byers are activists attempting to bring
ALS out into the open to join "more popular" diseases such as
cancer, MS, HIV and others. They are a dedicated and engaging couple
who are on a mission to bring awareness to the country that ALS has
been orphaned of research and pharmaceutical commitment long enough.
Without any jealousy in their voices, they advised the crowd that
there are currently 4,800 clinical studies going on to find a cure
for HIV. In stark contrast, the number of studies dedicated to ALS
is only 112.
In a way, ALS is a victim of numbers. There are approximately
35,000 Americans who have been diagnosed with the disease, with an
additional 5,000-6,000 diagnosed each year. Those numbers aren't
anywhere near as high as many cancers or other diseases, and thus
research and commitment have been minimal. But for someone who is
afflicted or for the family of that person, it isn't about numbers.
With someone afflicted from ALS, the number "one" is a number too
high.
Like Michelle, the Byers' son Ben was diagnosed with the disease
early in his 30s. Like Michelle, their son was a person who reveled
in life and was a fighter who refused to accept ALS as a death
sentence. Ben lost his fight but the Byers have taken up his
struggle by forming the organization that is dedicated to raising
awareness and creating support for families dealing with ALS. And,
they are working for directed efforts to be taken to increase
research into finding a cure.
Michelle reminds Steve and Barb of their son. "Even when Ben was
an infant, we could see how independent he was," Steve said. "If we
had left him in a forest without the bread crumbs to follow, Ben
would have still found his way home." Michelle too is a scrapper.
She too has refused to roll up in a ball at death's door and wait
for it to open. She too is determined to spend her life living and
trying to continue to live.
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The Byers' son enjoyed life and everything there was about it. They
recalled how once, as a youngster, he came back from playing
baseball, picked up his clarinet and started practicing with his
mitt still tucked in his back pocket. They explained how that image
explained perfectly their son's love for all things in life.
In the past year the Byers have become close friends with
Michelle and her family, and that is why they took time out in their
busy schedule of traveling and promoting efforts for research to
come to Lincoln this weekend. They see in Michelle that same love
for life, that same refusal to accept the disease as inevitable
death that they saw in their son.
Michelle, like their son Ben, is a positive person, as positive
as one can be in her condition. Thus, when she is asked how she is
doing, she will answer with that perfect smile of hers that she is
"good." She is a straight-forward young lady and if the conversation
turns to details of how her life is going, she will tell you without
glossing anything over. But as she sits in a wheelchair, hands
unanimated in her lap, you can see that this weekend has been good
for her.
The outpouring of interest, of caring, of genuine love helped
just for a moment in time to confirm for her what she already knows:
that she and her family are not alone in their fight.
The Byers talked about how devastating the effects can be on a
whole family that has a member afflicted with ALS and the potential
for isolation. Some who know the family or the person afflicted,
slowly gravitate away. It is human nature that it is too much to see
what such a disease does to vibrant, active people. For some of us, diseases such as ALS are a part of life
that we wish didn't exist. It isn't because people are cruel or
uncaring. It is because what ALS does to a human being is more truth
than some of us can live with.
This weekend several hundred in our community confirmed that they
are not afraid to be involved. Of all the problems Michelle faces,
isolation will not be one of them. That is because of her spirit, as
well as her family and friends. And it is because the community has
shown they will be there with her. All she has to do is ask.
The Byers talked about how in their forums, they see individuals
afflicted who also choose to become isolated. They work hard to help
those people become as active as their condition allows and to not
have shame about their condition.
Of all her concerns, shame has never been a part of Michelle.
"When I go to a store, I don't see any people like me there. It
would be so easy just to be a number and stay at home, but I'm an
in-your-face type of person. This is what ALS looks like, people,"
she once said.
The Byers' son Ben did a film about his last years and the effect
ALS had on him. But the film is about Ben Byer's life, not his
death. The film, "Indestructible," is about the entire range of
human emotion and how one young man dealt with being told he was
going to wither away and die.
In the movie Ben Byer finds no shame in showing the progression
of the disease and how it devastates his body. He is so busy trying
to show people what ALS is that he doesn't have time for pity or to
be embarrassed about himself. Instead he shows that although the
disease might have taken him, it did not defeat him.
Ben's story is one that will make you hit your knees and thank
God that you or a family member has not been personally introduced
to the disease. And then you will decide to stand up and say, "There
has got to be something we can do about this."
The Byers are trying. The folks who came Friday and Saturday are
as well. They gladly await your involvement.
[By
MIKE FAK]
If you wish to contribute or learn more about how you can become
involved in the fight to find a cure, see
www.alsworldwide.org.
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