Friday, September 6, 2013

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


butterfly said...

Well, what an extraordinary post and project, Mary Elizabeth. Chiari Awareness Month is certainly necessary - I'd never heard of it. I found all the information very interesting... and your development of this canvas, so deeply considered and creatively realised, was absolutely fascinating to follow.

Thank you so much for sharing your knowledge, some of your personal journey and your art with us.
Alison x

Marjie Kemper said...

Wow, Mary Elizabeth, what a trial you've overcome. I'm so glad they figured out what was happening to you. Your canvas is amazing... love the gears as brain matter!

barbarayaya62 said...

Mary, reading your post made ​​me understand a lot of the reason why I feel so many affinities with you! I too have been touched by the life and big problems relating to health and I understand how you feel! I'm glad you've solved through an Italian doctor! It 's true? Another strange coincidence: the surname of my mother is the same as the name of the disease where you have suffered:Chiari! It 's amazing destiny! Beautiful work and really full of emotion! My English is horrible, I know! I'm sorry! BArbarayaya

Suzanne C said...

This is just a thoughtful and inspiring post. I love that you took something that was so difficult and trying and turned it into a piece of art that speaks of your journey and difficulties. Inspiring art! Thanks for sharing your story with us at Simon Says Stamp Monday Challenge.

Martha said...

Mary Elizabeth what a heartfelt post, & a FABULOUS work-of-art! Beautifully done!

Thanks for your comment on my Pocket-Tag card.

Candy C said...

Mary Elizabeth...I totally love your canvas and your post about your unbelievable medical condition! I'd never heard of it but you've definitely educated me through your art and your blog post. Thanks for sharing such a personal story. Very inspirational and your canvas is just amazing! It makes so much sense after reading your post and what a perfect way to put into art what you were going through. I also wanted to thank you for your always uplifting and sweet comments you leave on my blog. I always enjoy hearing from you as you are such a delightful person. I loved reading your story about going to London and how my little challenge envelope reminded you of that experience with your mother! That made me feel so good! <3 Candy

Anna-Karin said...

What a special post and canvas Mary Elizabeth. I am sorry you had to wait to long until you got a diagnosis. I too had never heard of this condition. I am so glad you are better now. Your canvas is wonderful, all the details are so through through and I love how you used the flourish stamp and of course all those gears. Thank you for sharing with us at Simon Says Stamp Monday Challenge Blog!

Anita Houston said...

Holy creative cow! Love this guy's brain! COOLEST thing ever!

barbarayaya62 said...

Congrats MAry Elizabeth! I'm happy for your win on Simon says! YUppy!!!!!Your work is absolutely fantastic!!!!! BArbarayaya

Laura Turcotte said...

WOW--your canvas is gorgeous and very inspiring! My son was diagnosed with CM1 many years ago, and underwent surgery. He has an excellent surgeon, whom we see every 2 nd year, with an MRI, to make sure he is progressing well, as he is. He is now 15, and had the surgery at 3. We found out what he had thru MRI, because he also has scoliosis. My heart goes out to you, as you suffered through all those years without knowing. I wish you well!

butterfly said...

So thrilled that this amazing piece of work got featured at SSS - congratulations! And I hope it will help to spread the awareness too...
Alison xx

Paper Profusion said...

I'm blown away Mary Elizabeth by both your post and creation! Have snooped back a little - your work is stunning!!

Firstly the piece itself is mesmerising and so so clever. Brilliant use of techniques, tools and embellies. Talk about amazing illustration of a condition.

Secondly, I had never heard of Chiari but find this v interesting. (I have had M.E. for last 13 years).

You were in my head to visit as I know you have visited me and kindly followed. I then saw your name on the SSS email - congrats on very well deserved spotlight.

I'm so glad to have discovered you and to follow back as your work is incredible! Really!!

Nicola x

Candy C said...

Mary Elizabeth...I am head over heels that your piece for last week's challenge is being honored in our Designer Spotlight. This is such a well deserved honor for you, my friend! I have to agree with Anna-Karin's statement. Your piece not only was beautifully done but it had so much meaning behind it. I am so happy that you are being honored for your work! Huge congratulations! <3 Candy

Anonymous said...

I thought this was an amazingly detailed piece even before I saw it on your blog. I saw it on pinterest. I clicked over here to tell you how much I liked it. The story behind your creation makes it so much more special. Thank You for sharing. =^_^=

Chiari-Life said...

Very cool. I saw this floating around on pinterest thought I'd comment. <3

Shasta Langenbacher said...

I saw this blog post making the rounds on Facebook, and I just had to say I love it.

I have Chiari, too, and had the brain surgery in Hershey, PA, and I relate to this piece so much. I love how you captured the back story on your blog and how each piece in the art has meaning.

Thank you for sharing!