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Saturday, October 17, 2015

Inept Dr Frankenstein ... Chiari Awareness Month -- A Little Late

I cannot believe it is mid-October already.  I've been swamped with work after recovering from a pretty terrible cold.  So please forgive me for not visiting your blogs.  It has taken everything I have had lately to get through all of my classes.  Fortunately, I have a day off for mid-semester break and I want to share a project that I intended to show in September.  As some of you know, I try to craft something each year for Chiari Awareness Month (which is September).  As you can see, I didn't quite make that deadline, but better late than never!  Actually, I think my Inept Dr Frankenstein Project really fits better in October with its Halloween overtones.


ConquerChiari.org
This is somewhat of an art journal/ mixed media piece to give you a little more detail about my life's journey and raise awareness of Chiari Malformation.  In the fall of 2011, I was diagnosed with a Complex Chiari Syndrome.  This syndrome is made up of a Chiari Malformation and some other complicating disorders.  The slogan "Too much brain to contain" is one that you often see associated with Chiari Malformation.  A Chiari Malformation Type I is when the cerebellar tonsils (The tonsils on bottom of your brain's cerebellum ... yeah ... I didn't know our brains had tonsils either until a surgeon said he need to cut mine!)  herniate through the hole at the bottom of the skull into the spinal column.  Basically this acts as a "stopper" in a flask and keeps your spinal fluid from flowing as it should from your spine to your brain.  This can cause a great many unpleasant symptoms ... primarily major headaches.  For more about the symptoms of Chiari, check out the One Page Chiari Malformation Fact Sheet put out by the Chiari & Syringomyelia Foundation.

When I saw Tim Holtz's Monster die, I immediately envisioned this piece.  Seriously, I know that Tim really wants to inspire us to create ... but I don't think he could have even imagined someone being inspired in this manner :)  Oh well.   I created my monster with some grunged Co'ordinations cardstock in greens and grays.  I gave it some dimension by adhering it to some thick cardboard and putting some cardstock around the edges.  I added my own grunged "bolts" made of screw-top brads and nuts. Some Glossy Accents were added to the eyes and "stitching" on his neck.   As you can see below, my Inept Dr Frankenstein has found a brain that was too big for the Monster's head.  So back to the drawing board Dr Frankenstein.  You should always measure twice and cut once!  Since my Dr Frankenstein is a bit on the bungling side, I added a "This Side Up" Remnant Rub to remind Dr F of which side was up when he replaced the top back on his Monster.


The brain  ...  is actually mine.  I do believe I have more images of my lovely brain than I have photos of me.  This is a clipped image from one of my MRI's.  I printed it out, added some color (to give a bit of that "gray matter" look), and fussy cut it to adhere to my Monster's head.  Hopefully you've noticed the stamped skull in the collaged background.  Chiari Malformation isn't really a brain disorder.  It's a skull disorder that manifests in a brain problem.   The bottom of my skull is too small.  My brain is actually normal size, but my poor too-small skull just could not contain it all.  (Alas ... not a problem of too big of a brain :) )


I used the back of a burlap canvas to do my collage. I cut away the corners of the collage to reveal the edges of the burlap there.  The collage was created out of several of Tim's Idea-ology papers, tissue tape, more Remnant Rubs and an "Electrical Shock Hazard" warning label from my dehumidifier (It's above the "i" in "contain".  I thought this would be appropriate for an Inept Dr Frankenstein).  Paper edges for pieces in my collage were given a vintage feel by inking them with various shades of gray, black and brown.  The entire collage was given a wash of watered down white acrylic paint.  I grunged the side panel edges with Walnut Stain Distress Ink and matte multi medium.  The top and bottom got a coat of Black Soot Distress Paint.  I used some black archival pens and Black Soot paint to create the "rips" and "tears" around the panel edges.

Before I adhered my letters and Monster to the collage, I used Wild Honey, Scattered Straw, Spiced Marmalade and Vintage Photo Distress Stains with Matte Multi Medium to create a lightening bolt (which powers Dr. Frankenstein's life-giving machine).  However, this lightning bolt is right under the letters that spell "CHIARI" and it really represents the way Chiari struck my life like a bolt of lightning.  Seriously, I went 29 years with no symptoms.  I was healthy and having a great time in graduate school.  I was getting ready to start my dissertation.  Then from out of the blue, while running up 6 flights of stairs, a pain in my head stopped me dead in my tracks.  It was the worst headache I had ever had.  No matter how much over-the-counter pain meds I through at it, I could not get it to stop.  I don't remember much from the class that I went to.  I do remember that I could not drive myself home after that class.  Many thanks to my officemate, Alan, who drove me home safely that day!   The next day, the student health clinic doctor diagnosed me with migraines.  I spent the next 15 years looking for answers as I added new and bizarre symptoms to a list of seemingly unrelated illnesses.  Joint aches, ringing ears, stomach ailments, respiratory problems, heart-related problems, weak muscles ... it went on and on.  That was a very long time to go undiagnosed.  Looking back now, I can see how every single one of these symptoms were neurologically linked to the squeezed spinal cord, compressed brain and cranial nerves, and limited cerebral spinal fluid flow of my Complex Chiari Syndrome.

I think the worst symptom of Chiari Malformation and the related disorders that I have is that it is an "unseen" illness.  You look fine!  You tell people about all the problems you are having, but there really is no indication that anything is wrong.  I've literally had doctors, friends, and family members say that they thought it was all in my head.  When you are in so much pain and people don't believe you, you get very depressed.  I am thankful for amazing parents who supported me when no one else would.  I am also thankful for good friends who encouraged me to keep searching for answers and helped me make sense of everything when I finally did find what was behind all of the problems.  More than anything, I owe the fact that I have my life back right now to a brilliant neurosurgeon in NY, Dr Paolo Bolognese of the Chiari Neurosurgical Center, who doesn't accept the status quo of Chiari treatment and keeps looking for ways to make Chiari sufferers' lives better.  He performed both of my surgeries and I'm amazed at the quality of life I have now!!


Ok ... back to the art :)  After I adhered my 3-dimensional Monster to my canvas, I knew I needed some letters to stand up to the presence of the monster.  So I started with Tim's Grungeboard letters to spell CHIARI.  I painted them with Brushed Pewter Distress Paint and then covered them with a seriously thick layer of Crackled Accents that I mixed with Seedless Preserves Distress Stain (my favorite purple of all times ... and purple is the color for Chiari Awareness).  When the crackled mixture dried on the Distress Paint, it had some great cracks in it and OH what a yummy color!!!  It looks like candy!   But I wanted more texture, so I bent the grungeboard letters and made the cracks bigger.  Then I flaked off some of the purple crackle mixture altogether to expose the metallic paint underneath.  I used some alcohol ink to tarnish the exposed silver paint.  I got another layer of unpainted grunge letters and layered them under the crackled letters to give them more height on the canvas.  Then I used a Black Soot paint and silver pen to give some shadows and make them pop on top of my lightning bolt.


The other letters are also some of Tim's grungeboard letters that I had in my stash.  I colored them with Distress Paints (you might notice the gorgeous Twisted Citron on the word BRAIN!) and grunged them with sandpaper and Walnut Stain Distress Ink.   I again used a double layer of letters for the word BRAIN to make them pop.  The number 2 is one of Tim's Idea-ology metal numbers that I treated with alcohol inks.



I so very much enjoyed making this.  Love the Monster die Tim!!  I'm going to enter it in a few challenges:

Simon Says Stamps Wednesday Challenge:  Color Inspiration (You need to check out the gorgeous fall color board given for inspiration!)

Country View Challenges October - #32 - ADD some texture

A Vintage Journey:  Art Journaling with Tim (I know this is a bit of a different format than my art journal.  I hope that's ok.)

Frilly and Funkie's Autumn Splendor Challenge (More gorgeous fall inspiration!!)

Well ... that brings me to the end of another long post. At last count, there are approximately 2 million Chiari patients in just the US alone.  It's becoming much easier to diagnose due the use MRIs; yet, so many people still are suffering without a diagnosis.  Even if you get a diagnosis, your journey is only beginning.   I want to dedicate this post to a friend of mine, Stella, who is suffering from this same illness.  I met Stella in a NY hospital in 2012 as we both recovered from Chiari-related surgeries.  Stella has had a much longer and harder journey to walk than I and is currently in a halo while her bones get strong enough to mend from her last surgery.  Her bones were so soft that a screw from her halo came out while she was sleeping ... twice!  This is for you Stella ... I'm praying for you!

Thanks for dropping by everyone and letting me share my story.  I honestly hope to get back to visiting crafty blogland soon.  I miss you all.   --  Mary Elizabeth

12 comments:

Mimi said...

Wow! I thoroughly enjoyed reading your post... Very interesting, and I so appreciated your openness in your interpretation of Frankenstein's (YOUR) brain! How creative to use your MRI... Love it. That's probably the best alternative use of an MRI image ever! Clever, fabulous. Keep up the good work.

Barbara Schiassi said...

Mary !!! I'm so happy to see your project! it's wonderful and so creative and original! Amazing work! Barbarayaya

Valerie-Jael said...

Wonderful 'Monster' post. Hope you feel well, hugs, Valerie

Craft Addicts - Tracy Evans said...

Hi Mary,brilliant use of the Tim Holtz die , love how you emphasised the brain and the text us fantastic. Very creative . Thanks so much for joining in with A Vintage Journey Challenge, lovely to see you joining in . Tracy x

Sandy said...

I love Halloween and I love humor and you have combined both. Bravo!
Sandy xx

Anna-Karin said...

This is so clever! What a great idea and the monster die was perfect for this. Fabulous background and details too. Love it!

Anita Houston said...

What a way to showcase this, and the slogan for the disease is perfect with this die! You inspire me! LOVE all the meaning behind it, and it just makes you chuckle to see the brain! I LOVE it so!!! You are amazing! I wish you wellness always!

butterfly said...

A brilliant piece and a brilliant post, Mary Elizabeth - what a powerful element to include your own brain in the work! Your crackled letters to a fantastic job of drawing the attention to Chiari - a great awareness-raiser, and a hauntingly potent piece of artwork.

Thank you so much for sharing it with us at Country View Challenges and at A Vintage Journey too.
Alison xx

Buttons said...

LOVE your thought provoking piece and that incredibly clever way of using the mask with your brain. Thank you for joining us at Frilly and Funkie with this. Jenny x

Jingle said...

This is so super fun! Very nice work! Thanks so much for playing along with us over at the Simon Says Stamp Wednesday Challenge!

Annie said...

This is a fascinating post and a stunning project/interpretation. So many wonderful details very cleverly put together. Great to have you on board here at AVJ this month for Alison's journal challenge.

Best wishes
Annie x

Julia Aston said...

I love the changes you made to the monster - with his skull open and the bolts in his neck - thanks for sharing your story - how awful to go undiagnosed for so long - glad you are now getting relief - and thanks for playing with the AVJ challenge - what a wonderful design! Julia xx