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November 30, 2008 --
Ed Note: As many of you are probably aware, Chip Vierow, a
Chiari advocate pioneer passed away. I did not know Chip beyond a few
friendly emails so I asked someone who did to write a few words. This
is in place of this issue's Editorial.
A Tribute to Chip Vierow
WACMA.com owner and Support Group “Fearless Leader” – Twelve years of
Service to WACMA, Chiari Community Advocate, Zipperhead, Author of “Chip’s
Excellent Adventure” on Chip’s Chiari Pages, Creator of the Chiari Pillow™,
and friend of Chiarians around the world.
Tribute written by Ann Hood, Chiari Crusader
The Chiari Community honors the passing of Chip Vierow: he became a heavenly
angel on November 6, 2008. Many who knew him said that he already WAS an
angel here on earth, so to think of him now as our Zipperhead Guardian
Angel, watching over all of us as we travel our Chiari journeys, is no big
stretch of the imagination, nor is it too much for our “big brains” to
comprehend….because Chip’s legacy will positively continue on in the Chiari
Community.
Chip will be known for his dedicated and devoted commitment to the World
Arnold Chiari Malformation Association (WACMA), and also as a dedicated
advocate for Zipperheads and Chiarians in all of the Chiari Community. He
was willing to help anyone who asked for help and anyone who was suffering
from Chiari and related conditions. Many members of the WACMA group (“Join
the Worlds #1 Chiari Support Group Right Here,”, Chip invites) first “met”
Chip by reading “Chip’s Chiari Pages”, one of the first sites for positive
information about Chiari Malformations on the web. Chip’s site had the
answers to the top questions that Chiarians were asking:
1. “What is Chiari, or “ACM” ?.... and how do you pronounce it??”
(It’s pronounced Kee-AR’-ee).
2. “What are the symptoms of Chiari?” (he listed them from personal
experience) and,
3. He wrote a popular story; his own “BS” or ‘Brain Surgery’ experience that
he documented; better known to us as “Chip’s Excellent Adventure”. His story
was written to answer the burning question, “What will Brain Surgery be
like?” and “Should I go ahead with it?”
Chip goes on to encourage us by posting the update on his personal and very
successful one-time decompression surgery in 1996 by telling us: “11 years
post-op and all is well” and by posting surgical Success Stories to share
with us and to help alleviate our fears about “Brain Surgery” and Chiari
Decompression.
But, perhaps the next “introduction” was a little too graphic for some….
4. The first ACTUAL photo’s of his Posterior Fossa Decompression Surgery for
a Chiari 1 Malformation of approx. 20mm in length (which were the first ones
of their kind published on the web). He also included “The Lost Photo”, a
spoof that showed his brain being implanted with a computer memory chip,
something that was posted as a joke, but now seems very possible with the
technological advances in brain science.
Chip hardly needed a computer chip implant, his memory was astounding,
recalling phone numbers as far back as you could document, instant
recollection of auto part numbers, the color, part and location in the parts
yard of any part you might need, invoice numbers, amounts, and notes in a
large data base at his jobs, and his mind was packed full of information
about…well, you guessed it ….Chiari.
Chip was a “geeky nerd” Chiarian and had skills with computers and used them
in creating the WACMA site. Before there was Yahoo groups, Chip managed the
group through bulletin boards and mail server programs himself and until
2008 was on a dial up modem! Imagine the “speedy” research in 1996 when you
had to wait overnight if the article had a photo on it that you needed to
download! We are very spoiled today with the awesome technological advances
that we have moved through in the past twelve years!
Chip would also call individuals on the telephone regularly, even in the
middle of the night…..well, he didn’t need much sleep….there was more to be
done! He would personally read every post and he took speed reading once the
group began to grow larger and larger to be able to simply keep up with
everybody and every story. There was a lot of help that was needed and the
group and the WACMA moderators and were there to help him provide it,
particularly Sandi, his fiancé as the “CPA” of the group, or “Chip’s
Personal Assistant”. The dedication I saw in my “little” brother was
unbelievable to me when it came to the group and helping others with Chiari.
He appreciated all the members and those who were there to support him
through the years as well as those in the greater Chiari Community that
worked for “the cause” and shared his mission.
There were LOTS of very sad and moving stories, especially during the early
days of WACMA. It was “routine” to have folks send “just recently diagnosed”
posts after seeking help for 10 to 20 years. Those folks who have been
around Chiari for many years can attest to the progress we all are making
for the benefit of Chiarians all over the world. The most info I could find
in 1996 in the library was a book on rare diseases and conditions of about a
half a paragraph that talked about finding Chiari in cadavers upon autopsy.
Times have certainly changed.
But even in the most serious of times, Chip would find a way to joke, smile,
or to draw upon a big belly laugh to make it better. Like Reader’s Digest
claims: Laughter is the best medicine. If laughter was medication, Chip
would have been an addict. He would inject a joke or a comment at the end of
his posts, and for that moment in time, all was good. His “banter” and rude
remarks to himself or his big sister were enjoyed by the group for many
years. I know that there were times that he and I got to laughing so hard he
had to find his wastebasket and he thought that he actually might die
laughing. Many tears were shed in joy as well as sorrow. It would have been
very appropriate to put on his tombstone “He died laughing.”, and much
preferred to the diagnosis of end stage liver disease that he eventually
died of while waiting for a liver transplant.
Chip believed that knowledge was power and shared any information he had to
help Chiarians, even if it was ‘very real”, he wanted to share the truth.
Chip did not shy away from the realities of dealing with Chiari
Malformations. He just chose to think positive about the circumstances and
he always kept his sense of humor, regardless. He laughed away our pain and
we laughed along with him. He had a positive spirit and a quick laugh. He
had big brains and the WACMA T-Shirts had the motto “Too Much Brain to
Contain” on them. He studied and worked with many in the Chiari Community to
learn what he could about Chiari, and he passed it on to those who asked for
information and help, all on his own time, “just because he could.”
Chip’s legacy was a vision of how to help other Chiarians: to provide a
place to seek support, a great place for information about Chiari, and a
forum to encourage the members to make the same choice daily that he did,
which was to: “Always Think Positive and Never Lose Your Sense of Humor.”
His goal in life was to “Help More People” and he was constantly thinking of
ways to do that. He was a “big thinker”, some would say a “dreamer”, and I
know one of his dreams was to see that Chiarians had information, expert
medical care, and all the support they needed (and maybe a WACMA T-shirt and
a “Heavenly Soft” Chiari Pillow™ to sleep on each night).
We have come a long way, but there is still more to do.
Chip Vierow became the site owner for the WACMA group a short time after his
decompression surgery, and held the high esteem of being a Zipperhead along
with the unofficial title of “Fearless Leader” of the WACMA group. I can do
all things through Christ who strengthens me” was one of Chip’s favorite
inspirational passages from the Bible. Another was Philippians 4:8, or, as
Chip calls it, “the whatever verse”.
Chip felt a very special calling to the mission of helping others and what
he started at WACMA has spread throughout the Chiari Community and around
the world. Prayers for healing and spiritual support were welcome posts and
a routine part of daily life at WACMA. Many WACMA members and other leaders
and doctors in the Chiari Community have shared his vision and have made the
effort to help fight for Chiari Awareness, and to support and assist and
treat others with Chiari who need our help. Together, we all have formed a
big brained circle of Chiari love and support that has spread around the
world.
In 1996 there were very few members of WACMA, but now the group has almost
7,500 members internationally who are passing on Chip’s legacy and volunteer
their help to others. This past year Chip also created the Chiari Pillow™.
Dr. B and Chip designed the Chiari Pillow™ specifically to help Chiari
patients and it has proven fantastically successful in doing just that. Chip
was thrilled to be able to make the pillows available to Chiarians as one
more way to help them deal with symptoms of Chiari, in addition to his
tireless and all voluntary commitment to WACMA over the last twelve years of
his life.
He never accepted a dime for the service he provided at WACMA; he simply
never wanted another person that had been diagnosed with Chiari to have as
grim an introduction to Chiari as he experienced in 1996, when he began
searching for reliable and positive answers about his Chiari Malformation on
the new “information highway” called the internet.
I challenge you to help carry on the mission and legacy of Chip Vierow.
And that is: “To Help More People.”
May you know that Chip is watching over us as he looks down from heaven,
that none of us is ever alone, and that each of us CAN make a big difference
in this earthly world,…………………….. if we choose to.
“Always Think Positive….and Never Lose Your Sense of Humor.”
“Think Bigger”. Chip Vierow
Love the Lord and love your brothers (and sisters) as yourself.
May God Bless you all on your journeys.
-- Ann Hood, Chiari Crusader, Chip’s “BS” (Big Sister)
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