Crafting with a Cause -- Chiari Awareness Month

During the month of September, I would like to share with you a little more about myself as I share my art with you.  Please bear with me ... this post may be a little longer than usual.

In January of 2012, I was in a Long Island hospital recovering from brain surgery.  Even as I sit here and look at those words in black and white (ok ... I guess the type is all white on my blog), it still feels a little surreal.   I honestly thought I would probably die without ever knowing what was wrong with me.  I suffered with a variety of debilitating symptoms for over 16 years before I finally had an answer.  In November 2011, I was diagnosed with a Chiari Malformation Type I and a secondary condition called a Retroflexed Odontoid.

The month of September is Chiari Awareness Month.  Many people may suffer with it for years (like me) and never know they have it.  I would like to tell my story over the next few weeks and perhaps help someone else.

My surgery was performed by Dr. Paolo Bolognese, a neurosurgeon at The Chiari Institute (TCI) in NY.  He is one the best Chiari surgeons in the country and I am indebted to him for making my life so much better.  Chiari malformation includes several disorders that are characterized by a herniation of the back of the brain through the large opening at the base of the skull into the spinal canal.  This acts like a stopper in a bottle and blocks the circulation of cerebrospinal fluid.  Most cases, like mine, are congenital.  Although I like to tell everyone that I have "too much brain to contain", I actually have a skull that is too small.

As my canvas indicates, such a condition "puts a spanner in the works" of my brain. Hopefully you can see my token monkey wrench at the base of my skull in the workings of my brain.  According to TCI's website, "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." Yep ... just like me.  And this is why I want to share this with you.  I had so many odd symptoms that my doctor would just treat the symptoms and never put them together as one giant condition.  TCI goes on to say that, "Until recent years, CM1 was regarded as a rare condition. With the increased availability of magnetic resonance imaging, the number of reported cases has risen sharply. Current estimates range from 200,000 to 2 million Americans with the condition. Genetic studies spearheaded by Dr. Milhorat support a hereditary tendency with a transmissibility rate of 12 percent. Women are affected three times more often than men. Approximately 3,500 Chiari operations are performed each year in the United States."




Ok that's enough about that for now.  I'd like to talk a little about my project before I fall asleep at the keyboard.  If you look really carefully at the pictures above, you should be able to see the MRI underneath all of gears, paint and ink.  Yes, that actually is my MRI.  I took a still from my computer and printed it on photo paper.  After adhering it to the gessoed canvas, I started covering it with lots of crafty goodness.

 

 

I began by using Tim Holtz's On the Edge Steampunk die to cut out grungeboard pieces to frame the top and bottom of the canvas.  As I thought about representing my brain and the problems that I have, I immediately thought about using gears.  The Steampunk theme for this piece built from there.  I slathered on some more gesso to the grungeboard border at the top, stamped the word CHIARI (using a "1" as the final "i" in the word), added some Tim Holtz tissue tape and covered it all with Pumice Stone and Walnut Stain Distress Ink.  The die cut gears were painted with Tarnished Brass and Broken China Distress Paint.  I then did some shading with alcohol ink. I did a similar treatment to the bottom frame piece.  I added some small grunged metal gears to the corners on both top and bottom of the piece.

The middle evolved over time.  I started by painting the rest of the canvas and everything on the MRI except my brain (ok -- that's just weird to type), spinal cord and outline of my head with Black Soot Distress Paint.  I then went over the outlines with a Martha Stewart white paint pen.  While I tried arranging my variety of "brain" gears, I found the black to be way overwhelming.  For Simon Says Stamp Monday Challenge, I thought I wanted to use my Tim Holtz "all star" flourish stamp on the edges of the piece; however, I thought it might look interesting on the "inside" of my head. So I got out my Moonlight archival ink and randomly started stamping portions of the stamp (without using a stamp block) around the interior.  I didn't mind going outside of the lines because I knew I could repaint the head's exterior with more black paint after I finished.  I did protect my brain with a paper mask as I stamped :)  Anyway, I pretty much loved the end result.

I used the gears stamp from Tim's Time Traveler stamp set on the left and right edges of the canvas.  I stamped it with Distress Embossing Ink and embossed it with chunky clear embossing powder.  I painted over the embossed image with the black paint and came back to stamp over that with black archival ink to pick up more of the gears' details.  I really liked the tone-on-tone texture.  Finally, I used one more of Tim's stamps on a diecut ticket.   It sort of sums up the way things have been for me over the last couple of years -- "Life is what happens to us while we are making other plans."

My brain gears are both of the metal and grungeboard diecut variety.  I painted them with just about anything that I had in front of me on my workspace.  I added some various rusty and tarnished brads (doesn't look like those gears do a lot of spinning, does it?) and called it a day.

I'll leave you with one more look at the finished project.  I hope the length and subject matter has not been too horrible for you.  Thanks for letting me share this with you.  -- Mary Elizabeth