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Monday, September 1, 2014

Chiari Awareness Month: Steampunk Butterfly -- A New Chapter in My Chiari Story

Hi All!  Thanks for dropping by.  I'm a Guest Designer today over at SanDee & Amelie's Steampunk Challenge.  This month's theme is Steampunk Stories.  I hope you can play along this month!  My guest designer piece this month is a Steampunk Butterfly.  Butterflies are often associated with “new beginnings”, so I chose a steampunk butterfly (with his cute little goggles) to represent the new chapter in my own Chiari story.  Some of you know that I have been struggling with some pretty serious health issues over the last few years.  In fact, when my dear friend Claudia asked me to be a guest designer for this challenge at the beginning of the year, I had just learned that I was going to need another rather major neurosurgery.  I asked if I could create a piece for September, the month designated to raise awareness for my condition — Chiari Malformation.


Chiari (kee-AR-ee) malformation includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain.  In my case, this condition came about as a result of a congenital defect where the base of my skull was a little smaller than normal.  It can also be caused by an accident.  According to The Chiari Institute,

    Patients with CM1 (Chiari Malformation Type I) may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed.


I was misdiagnosed for 15 years.  After getting conflicting diagnoses by neurosurgeons and neurologists in North Carolina, I was urged by my friends to find the best Chiari expert in the country.  That's when I met Dr Paolo Bolognese, formerly of The Chiari Institute (He now has his own practice called the Chiari Neurosurgical Center at NSPC   It just opened on August 31, 2014 so the website is still a little sparse)   Check out this post from last year on this part of my story.

Dr Bolognese officially diagnosed me with Chiari Malformation in November 2011.  I had brain surgery 2 months later in January 2012 which amputated the cerebellum tonsils that blocked my spinal fluid flow.  No more "migraines" after that surgery!  However, Dr Bolognese also diagnosed me with a secondary condition known as a Retroflexed Odontoid. The Odontoid is a bone on your vertebrae that supports the skull on your neck.  Mine was leaning backwards into my spinal cord.  It caused my skull to sink down toward my shoulders, thus compressing my brain and nerves.  Things really spiraled downhill in the spring.  My brain was unable to send nerve impulses to my left leg and I started having difficulties walking.  My optic nerves were compressed in both eyes and I even lost some of my sight in my left eye.

But I’m thrilled to tell you that my latest surgery (May 20, 2014) has corrected this complication and I feel like I have a new lease on life. So here is my Steampunk butterfly to celebrate this new chapter in my life.




The Steampunk Butterfly Details:



I was inspired by this awesome Chiari artwork that I found on Pinterest.  I love the purple ... purple is the Chiari Awareness color.  And the flourishes on the wings are incredible.

To create one of the wings, I used two different  grungeboard flourishes from one of Tim Holtz's Ideology grungeboard diecut packs.   I used some Glossy Accents to glue them together and then added three screw-head brads to make sure they stayed together..  The tops of the brads were painted with Black Soot Distress Paint (the excess wiped off to leave the paint in the screw crevices).

I wish you could see these wings in real life.  The grungeboard flouishes turned out fantastic.  They really have a dimensional jewel-like quality.  I began by giving the grungeboard flourshes  a base coat of Seedless Preserves Distress Paint.  I gave them a light sanding and the added some Brushed Pewter Distress Paint around the edges and on the sanded places.  After that dried.  I mixed some Glossy Multimedium with Seedless Preserves Distress Stain and gave the flourishes two coats of that mixture and let them naturally.  I then came back and gave the flourshes a fairly thick coat of Rangers Inkssentials Crackle Accents.   I seriously love this finish.  It's my favorite craft experiment that that I have done so far.


I wanted something translucent for the interior of the wings, so I grabbed some of Wendy Vecchi's Clearly for Art Modeling Film.  This product holds up well to heat tools and you can shape and reshape it by applying heat.  I tried various products (like archival ink, alcohol ink, alcohol markers, etc) to color the modeling film.  I finally ended up stamping Tim's blueprint gears stamp and the gears from Tim's Time Travel stamps with Distress Embossing Ink and some Aqua clear embossing powder.   This actually worked pretty well on the modeling film.  The one helpful hint I will give you is try not to do this on a humid day.  The embossing powder stuck to the film in places it wasn't supposed to because of the humid conditions.  I colored in the blue print stamp with a mixture of Glossy Accents, Seedless Preserves Distress Stain, and Worn Lipstick Distress Stain. After all that was done, I adhered a variety of gears and other metal bits from my stash to the wings. 



My butterfly's body was created with with some amazing pieces from Susan Lenart Kazmer's Industrial Chic jewelry line.  There main part is array of four light bulbs in an metal rectangular box.  I added a small rusty propeller at the bottom and a metal ring piece around the last light bulb.  I also covered the metal box with some of Tim's star Industrious Stickers.  The eyes and "feelers' were another industrial piece from Industrial Chic.  I added the alcohol ink colored pearls for the irises. 


The hinges are by Explorers at Hobby Lobby.  I gave them a coat of Silver Alcohol Ink Mixative and some Black Soot Distress Paint to grunge them up.  I glued them to the grungeboard flourish wings and added some of Tim's tiny screw-head brads.  I finally gave my butterfly some adorable steampunk goggles from Prima Marketing Junkyard Metal Embellishment Findings -- Steampunk Air Collection.  Love these!!!




I used a strip of scrap aluminum metal under both hinges and wings to bend the wings up off the surface.

Here are a few more detail pics: 












And there you have it.  Thanks for taking the time to check in on my SanDee & Amelie's Steampunk Challenge Guest Designer project.  I hope you have time to enter this month.  Also, thanks for allowing me to share with you a little more about Chiari Malformation and its related conditions.  So many people are needlessly suffering from this condition because it is so often misdiagnosed. 

I hope you all have a very blessed week.  -- Mary Elizabeth




















5 comments:

die amelie said...

Thank you so much for sharing your beautiful art and your story with us, Mary Elizabeth!

I can hardly imagine what you have been going through during those last years of intimidating health issues and struggle with being differently- or misdiagnosed (well - at least I know a bit about the last part...and the anxiety it can cause)!

I am so happy to hear that a lot of things have now improved for you and I always like to believe that "knowing the enemy" is already half the battle won!

I admire your will to fight and never give up! And your butterfly is such a brilliant and thoughtful creation! I love it!

Big hugs and all the best wishes,my friend,

Claudia xxx

Anita Houston said...

Please know my prayers are with you! It must have been hard to tell your story, and I can only imagine the pain and discourse you've endured! Sending you a big warm cyber hug, and admiring your gorgeous and colorful steampunk butterfly!

barbarayaya62 said...

Dear friend I came back from vacation a few days ago and just now I saw your post! It's an amazing super creative work, beautiful to see but especially that tells an important part of your life, filled with positive feelings!"Brava" as always, I'm so happy to hear that you're feeling better! Hugs BArbarayaya

Buttons said...

What a beautiful way of highlighting this condition and creating a wonderful piece of art. It has been fascinating to read your post and I hope your journey is positive in the future. Jenny x

Andrea Ockey Parr said...

This is quite an amazing piece of art-- but your story is just as incredible! Wow! I had no idea that Chiari existed and I had to just shake my head in utter sympathy as I read all about what you've been through. I'm so glad that you finally got a proper diagnosis and have been given the help that you need. Our lives would be so very different without medical technology. I am so grateful for all of those researchers and scientists and geniuses in the medical field who have given their lives to finding ways to help the human condition. Kudos to you for hanging in there through so much and for making the world more beautiful through your art. I love this butterfly because it's definitely steampunk-y, but without all the drab colors. This is like steampunk with a happy kick and I really adore it!