Sunday, September 18, 2016

Chiari Awareness Month 2016: The Gift of One Another

First, let me warn you that this will be a long post.  As many of you are aware, I suffered from Chiari Malformation (Type 1) for many years.  Chiari is a condition where the bottom of the brain, called the cerebellum, herniates through the opening at the base of the skull into the spinal canal.  This can cause all sorts of problems!  Most Chiari 1 patients, like myself, have a skull that is too small which causes the herniation.  Accidents have been known to bring on the condition in others.  September is Chiari Awareness month and I dedicate my blog during this month to providing information about this often debilitating and misdiagnosed condition.

This month's first post is incredibly special to me because it's not solely about me :)  If you are interested in my story you can find the details in the following posts: Crafting with a Cause -- Chiari Awareness MonthChiari Awareness Month, and  Chiari Awareness Month: Steampunk Butterfly -- A New Chapter in My Chiari Story. This story is about my friend Elizabeth.  Elizabeth's husband, Nate, is one of my colleagues.  Two years ago, after my second surgery, Nate came and asked me if I had a friend who had Chiari.  I told him that yes I had friends with Chiari, but I also was a Chiarian.  This came as somewhat of a surprise to Nate.  He then told me that his wife had Chiari and her symptoms were getting worse.  He asked if I would mind coming to his house and talking to Elizabeth.  That first meeting led to an amazing friendship.

Elizabeth had Decompression surgery for her Chiari in May of this year.  Before she went to New York for her surgery, she wrote her own Chiari story entitled The Gift of One Another.  The story begins with a photo of an old rusty chair.  I wanted to create a frame for this very special photo and give it to Elizabeth to remind her of our incredible journey together.  I am including her story here and will give you some details about this project at the end of the post.

The Gift of One Another

The story I am sharing begins with a rusty old chair. As a landscape designer, this is not the sort of chair I would give a second look. But the man who used to sit in it, whom I’ve never met, is one of several people who have impacted the course of my life these past couple of years.
I was diagnosed with a Chiari One malformation of the brain in 2007, then Ehlers-Danlos Syndrome in 2015. In laymen’s terms, my brain is too large for my skull. As a result, my brain and spinal cord are being compressed, and spinal fluid is not flowing like it should be. As you might imagine, a lot can go wrong with one’s balance, perception, strength, vision, sense of feeling, etc., when the contents of one’s head are under such pressure. The result: I have a freakish set of symptoms that if a couple of wonderful, compassionate doctors like Dr. Mahmood and Dr. McAdams hadn’t linked together, I still would have no idea what was going on with my body. Nate, my husband, is always baffled when I tell him the latest symptom. He can’t believe so many random things can happen to one person. Fortunately he makes the best of it and provides me with comic relief, which is so important when you don’t understand what is going on with your health. He is also the strong and steady arm that supports me all along the way when my legs aren’t working. I am so thankful for his love and solace through this all.

Around the time that my symptoms began to worsen in 2014, Nate discovered a co-worker, Mary Elizabeth, who had struggled with the same condition for over 15 years before getting a diagnosis and surgeries. While undiagnosed and visiting doctor after doctor as her health deteriorated, Mary Elizabeth experienced enormous daily struggles, including chronic pain. She endured a prolonged time of total uncertainty and physical suffering for many years. While she was still recovering from her most recent surgery, she came along side me. She grabbed me by the hand and helped me navigate all of this, literally every step of the way, and led me to the best neurosurgeon in the country for my condition. Even when she was exhausted from her surgery she would come over in the evenings to offer encouragement and answers to our entire family. I know without her friendship I would have battled constant fear and anxiety over the past two years. She has truly been a God-send. But ironically, she says meeting with me on a regular basis has been God’s greatest gift to her because she says she now knows her physical and emotional struggles were not in vain.
I love Mary Elizabeth. She is my hero. She and her mother have already bought plane tickets to fly up Long Island and support Nate and I prior to the surgery, along side Nate’s entire family. I pinch myself every time I think of her flying up to Long Island for us.

See, Mary Elizabeth had a woman named Stella come alongside of her in a similar manner. Stella instructed Mary Elizabeth to “pay it forward” someday and help someone else.

I actually had the pleasure of meeting Stella recently. She is one of a kind, and God has gifted her with an amazing amount of resilience and a generous heart. She has been through 23 surgeries, and was even once told by doctors that she would not walk again so she might as well get used to being in a wheelchair for the rest of her life. However, Dr. Bolognese, my neurosurgeon, wouldn’t give up on her. She was up and walking the day we met. She still has struggles from an injury she sustained that undermined her last surgical procedure. Even though she wasn’t feeling well the day we met, she wanted to help me in any way possible. She and Mary Elizabeth instructed me on everything I needed to know about my upcoming surgery, including details like what cab driver to call when we get to Long Island. “Call the Chiari Cab, and here’s his number,” she said. Mary Elizabeth chimed in, “He knows where to take you and he will avoid the potholes!”

It’s surprising to me how people like Stella and Mary Elizabeth, two people with whom I had no former relationship, have tried to help me. People we’ve never met have sent us cards by mail and told us they are praying on our behalf. For example, my mom ran into an acquaintance in the grocery store, and before long they got on the topic of my surgery. As they parted, the woman told my mom that she would pray for me. Weeks later, my mom and a girlfriend were out walking around the town together and decided to peek into a Catholic church in town. (I know this sounds strange, but we like to look at the interior of churches when we get a chance. I blame it on the fact that we’ve spent a lot of time in churches that meet in schools or gymnasiums, so there is something that intrigues about the reverent architectural style of an historic church.) Anyhow, my mom walked to the front of the sanctuary and happened to glance at the open prayer book below the flickering candles. The most recent entry read, “I’m praying that Elizabeth’s brain surgery goes well.” My mom immediately knew that God had led her there.

We’ve also been overwhelmed by the love and care we have received from family members, friends, co-workers, employers, clients, neighbors, and church family. We’ve been fed, chauffeured, babysat for, offered financial assistance, prayed over, prayed for, and encouraged through written messages…all occurring in a perfectly orchestrated manner when we need it the most so that it is evident Who is doing the orchestrating. I’m here to say that my life and my family’s life has been changed by the faithfulness and actions of others.

Anybody has this capability to change another person’s life. For instance, you might be a Mary Elizabeth someday that steps outside of your comfort zone and comes alongside someone in their hour of need saying, “I’ve been through this. Let’s do this together.” You might be the one in need of help who prayerfully takes hold of that hand that is being offered to you, and as a result, experience the depth of God’s love. You might listen to the Holy Spirit leading you to pray for a complete stranger and in turn reveal God’s sovereignty to a mother who is concerned for her daughter. You might be the doctor who never gives up on your patients and gives them the gift of hope and healing. Or you might sit in an old, rusty chair in the woods and ask God to heal your daughter for fifteen years like Mary Elizabeth’s father did….not ever seeing that healing come in your lifetime and not knowing that your prayers would have a domino effect on the lives of people you’ve never met.

In summary, like the big idea we’ve been teaching the kids in our Sunday school class as we’ve followed the journey of the Israelites in the Old Testament, God uses people for His glory and our good. However, similar to the Israelites, I know that the closer I get to having surgery, the more I will forget everything that He has orchestrated. I don’t want to allow fear to creep in and control my thoughts about whether the procedure will be successful or not. That is why I am writing this. This is not just my story…this is me setting down my stone of remembrance; an endless reminder of God’s sovereignty, and that He has given us the gift of one another. 

  -- Elizabeth W.


 So now you know that the photo in the frame is special to me too.  That is the chair that my dad sat and prayed in for the 15 years until Alzheimer's took him from this world.   My dad was in the hospital when I went to New York to meet with and be diagnosed by Dr Bolognese.  The Alzheimer's had progressed to his frontal lobe which caused him to have Epileptic seizures.  I was afraid he wouldn't be alive when I returned to North Carolina.  He was still there when I came back.  He never really understood though that I got my diagnosis and would need brain surgery.  When I told Elizabeth about his prayers and the fact that he died 21 days after I was diagnosed, she just broke down and cried.  She was overwhelmed by the fact that he never gave up on his prayers.  When I asked my Mom to read Elizabeth's story and showed her all the words I could have put in Tim Holtz's shield charm (like hope, courage, strength, etc), Mom immediately was drawn to "faith"  She said my Dad always had faith that God would take care of me.  That's why he kept praying.

I truly meant that this journey with Elizabeth over the last couple of years has been a gift to me as well.  For years, I thought I was going crazy.  I was very depressed because it seemed very few people truly believed that I was ill.  Even a neurosurgeon in North Carolina told me that I did not have Chiari and that all I had was carpal tunnel and tension headaches.  You don't argue with neurosurgeons, do you?  Well, I did and I certainly am much better for it!  Finding Dr Bolognese was a miracle.   I was so glad to help Elizabeth get in touch with him and be able to offer what I knew about Chiari and Ehlers-Danlos Syndrome (which I have as well).  I was glad to share tears and laughter.  I was glad to be there and say, "I've been there.  I know how hard this is."  Dr Charles Stanley, the pastor of First Baptist Church in Atlanta, said, "Don't waste your pain."  Pain is allowed in your life for a reason.  My pain has not been wasted.  I've been able to make Elizabeth and Nate's life a little easier.

My mom and I did get to go with Nate and Elizabeth to NY.  I remember not knowing anything about what to expect in regard to brain surgery or recuperating from brain surgery.   I met Stella after my first surgery and she prepped me for what to expect and how to deal with all sorts of issues from getting off of narcotics to dealing with insurance companies.  Stella is my hero!!!  I can't imagine what it would have been like to have navigated all of that alone.  It warmed my heart to share that knowledge with Elizabeth.  It also gave me a different perspective on Chiari.  It is much harder being the one waiting in the waiting room during a 7-hour brain surgery than being the one on the operating table!  Watching someone in pain in ICU is just as rough as being the one in pain.  There are so many things that family members are afraid of doing for you (like brushing or washing your hair) after you have brain surgery :)  Having been through neurosurgery multiple times, I was able to help Elizabeth do these tasks without a lot of pain or getting her incision wet.  (Thanks Mom for helping me with this after my own surgeries!)

Ok ... are you wondering how Elizabeth is doing today?  Absolutely amazing!  She is working 9- hour days and coaching soccer in the evenings.  Here are a list of some of the physical improvements she has had since her surgery:

    1.    My head no longer hurts when I cough
    2.    My mind is so active and I want to learn and read again instead of just vegging out and watching tv in the evenings
    3.    Face lift ... Left side of my face used to droop and has now lifted back up.  Left brow no longer feels heavy.
    4.    My swallowing is greatly improved.
    5.    Shoulder/neck soreness that I can't remember living a day without is completely gone.
    6.    Feeling in extremities, like feet and shins, has returned
    7.    Legs no longer swell.
    8.    My legs move easily
    9.    My balance is WAY better like I can stand on one leg without falling over
    10.    Movement surrounding me already doesn't bother me as much (something as simple as scrolling the screen on my phone used to make me feel bad.)
    11.    My left leg that used to turn in is now straight
    12.    I'm not favoring my left leg anymore... It feels just as strong as my right
    13.    I walk down stairs without my legs buckling
    14.    Persistent nausea is gone
    15.    Have not had the world turn sideways on me with the feeling like I'm going to pass out.

    16.   The headaches that plagued me right before surgery are gone.  
    17.   Unmentionable issues :) have resolved!
Thanks for letting me share this next chapter in my Chiari Journey with you.  New chapters are opening up.  Elizabeth and I are working together to help other Chiari patients now.   I'm looking forward to seeing what happens in the next year.

Now back to some crafting information!

 I wanted to make the chair in this photo stand out, so I used a waterbrush to add Tim Holtz's Walnut Stain Distress Crayon the edges of the chair and background.  It gave the background a great vintage look. 


The frame came from Tim's Artful Fragments Frame Kit.  The "barn wood" covering the frame is actually Grunge Paper.  I cut different sized strips of the paper then painted them with Antique Linen Distress Paint.  While the paint was still "tacky", I pressed Scrapabilities Scratch Texture stamp, non-inked, into the pain.  I added some light strokes of Weathered Wood or Bundled Sage Distress Paint on top of this.

Then I took sandpaper and distressed the painted strips of paper.  Finally I added Ground Espresso Distress Ink over top of everything to bring out all of the distressed textures.  The strips of painted grunge board were glued on to the frame.   I added some Idea-ology Tiny Attachers in places to make it look like my "barn wood" was screwed into the frame.

The letters came from a variety of sources.  The "gift" and "another" letters are chipboard.  I gave each of these a lovely coat of Broken China Distress Paint.  I did some additional stamping on the "gift" letters.  The "one" letters are grungeboard.  They started out painted in Barn Door Distress Paint.  It was too much red.  So I went back over them with Broken China DP.  All of these letters were distressed with sand paper and Ground Espresso Distress Ink.   The "of" letters are Idea-ology Alpha Parts.  After all the letters were adhered to the frame with multi medium, I gave them a soft drop shadow using Black Soot Distress Crayon and a water brush.

I had fun using Tim's Ephemera butterflies and tissue tape to embellish this lovely frame.  I loved the Passport Tissue Tape as the background for my stamped "Chiari" (in Picket Fence Distress Ink).  The frame's border  is from Tim's Dapper collection.

I added this incredible metal piece from my stash.  I aged gave it some "rust" with Walnut Stain Distress Embossing Powder and Walnut Stain Distress crayon.  I added a mix of Festive Berries and Spiced Marmalade Distress Crayons to the "1" for just a small pop of red.

Whew!!  Ok ... I've finally reached the end of this post.  I'm going to enter this project in A Vintage Journey's Create Within A Frame Challenge.  

 Hi -- I'm back with a postscript.  I managed to miss seeing this month's theme for Anything But Cute's latest challenge.  Thanks Anne for letting me know about the Friendship Challenge.  Love the inspiration pieces!!!  They are each amazing and so very  different.  Anyway, I'm going to enter this in Anything But Cute's Challenge #17 -- Friendship.  Yes Anne ... this post and project fits the theme to a T!  I hope you get a chance to check out this Mixed Media Challenge and celebrate you own friendships with an entry this month.

Thanks for letting me share this special project and story with you.  I hope to be back later this month with a couple of other Chiari-related projects.  I promise, the posts won't be this long next time.   Hugs to you all -- Mary Elizabeth


Barbara Schiassi said...

Mary Elizabeth you know I love to read your post! You're a special person and I'm so happy and honoured to be your crafty/web friend! your project is amazing as always! When the artist puts your heart and your soul in his work this is the result!Barbara

Brenda Brown said...

Mary Elizabeth you have deeply touched my heart with this amazing post, firstly for the story of you and your friends journeys through incredible surgeries, battles, emotions and friendships. It is wonderful to read how love for each other and the sharing of experiences can provide so much support and help emotionally and physically and how reaching out can bring such beautiful friendships together. My words cannot express the depth of admiration I have for you all in what you do and the strength and courage you have. Your magnificent frame celebrates the love you have for your Dad, your Mum, your friends and your own strength of character. I love the way you added the wooden panels, the textures and fabulous elements and details and added the word chiari with the journey token. It symbolises the intensity of your faith and the fortitude, resilience and spirit in which you live your life, you are one very amazing lady. Thank you for sharing this with us at A Vintage Journey. Sending you huge hugs and lots of love , Brenda xxx

butterfly said...

I don't think I can put it better than Brenda already has - a truly moving post celebrating courage and friendship in adversity. Your strength and perseverance are so incredible and the generosity of spirit with which you share that strength with others glows from the heart of Elizabeth's story. The connections between all three of you are forged from such difficult circumstances and are all the more beautiful for that.

As to the artwork - simply wonderful... the weathered wood grungepaper looks incredibly real; the colours, the distressing, the detailed thinking behind every element - it all adds up to a very special piece of art.
Alison x

Anita Houston said...

Oh Elizabeth...every year when you do these posts I'm hooked on every word. I cannot imagine the suffering you have gone through and that of your friends. I read each thing that plagued you and tried to put myself there...I cannot. Praise the Lord your surgery worked!!! I hope others can be helped too. Your symbol of the struggles in your work here are wonderful...right down to the charm! I LOVE the frame, and the focal point of the chair...I have no words. Wonderful art, wonderful cause, wonderful person! Thanks for inviting us in for a glimpse.

Jenny Marples said...

Mary Elizabeth you've done it again. As I sit here in tears having read your poignant post I can only echo the words from my friends Barbara, Brenda, Alison and Anita. Your determination, resilience, optimism and faith are truly outstanding and the recounting of the stories of Elizabeth and your Dad so touching and uplifting. Your art comes from the heart and the passion shines through in its total beauty. Thank you so much for joining us at A Vintage Journey and for sharing something so personal and precious xx

Redanne said...

Mary Elizabeth, I too, loved reading your story of love and how your support and friendship touched another so beautifully. The above ladies are special friends and they have put it all so much better than I ever could but although very sad, I found your post quite uplifting and your piece of art is so, so beautiful, your love really does shine through - it is a stunning piece of work.

Over at Anything But Cute we are celebrating Friendship this month and this would fit the challenge perfectly. Whilst I am here, I would like to thank you for joining in our Create Within A Frame challenge at A Vintage Journey. Hugs, Anne xx

Redanne said...

Thank you so much for joining in our Friendship challenge at Anything But Cute. Hugs, Anne xx

Julia Aston said...

My goodness - what an inspiring story and creative and inspiring frame project Mary Elizabeth! What strength, stamina and faith you have and inspire in others - your project is a wonderful way to honor your dad's memory with his chair the focus of your project. Thank you for sharing it all with us at AVJ - Julia xx

Sara Barker said...

Oh, my, Mary Elizabeth! I have gone through a pot of coffee reading your touching post, and I have to say it has been a life changer for me! No details on that here...

I haven't even finished the "crafty" portion of this post yet, but it's Sunday, and I must get moving to get to church. I just needed to write this one thing, and I'll be back...YOU are God's witness! Hugs!

Vintagehandmade said...

Oh, I am so touched by your amazing story and I enjoyed reading your post! Your creation is simply a fantastic piece of art and I absolutely love every single inch of it! I am so impressed and totally in love with your stunning piece! Thank you so much for joining in our 'Friendship' challenge at Anything But Cute! Hugs! Branka DT xx

Lucy said...

Mary Elizabeth, I couldn't 't believe your story. I am a pediatric ER doc which is a frustrating job at times. I recently had a 13 or 14 year old patient who had had headaches for 2 weeks that didn't really improve with any therapy. Everybody thought she had intractable migraines. She drove from a nearby city to our pediatric ER for an MRI. It's not easy to get an MRI at times in the ED. I can't remember if we did a head CT scan or were able to get an MRI, but I do remember a view of the back of her skull and c-spine where you could see her cerebellar tonsils down the spine to at least C-2. Whoa. Not what I expected. I called the pediatric neurosurgeon who wanted me to order more specific tests (a cline flow study MRI) and he would see her the next week. We were able to make her feel somewhat better with fluids and some mess and she went home. Probably the best part is that she actually has a diagnosis with a plan for helping the child.

I never realized how debilitating this could be. I am so glad you are doing better and continue to share the information about Chiari malformation. They don't really teach us much about it.

Thank you for sharing and educating.

Lucy said...

I did a couple of typos in my message. The patient needed a cine flow study. And we made her feel better with some fluids and MEDs, not mess.

Thank you again for sharing your story.

Julia S-W said...

Mary Elizabeth, I echo all the sentiments which have been expressed above. You are truly inspirational in the way you cope with everything that's thrown at you. I will remember your words when I'm feeling sorry for myself and know that if you can get by then I should have no trouble whatsoever!!! I also have grunge paper covered frame envy!!! The way you have used the grunge paper, the colours, the distressing is stunning, really stunning. My eyes are green with that envy and I need to rush and try out your technique. A gorgeous project. Utterly. Keep smiling because people like you help the rest of us. Just wish I could return the favour!Thanks so much for joining us at A Vintage Journey for the September Challenge. Julia x

Sara Barker said...

Hi, Mary Elizabeth,
I just swung by to say that a lot of people at Anything But Cute think you and your artwork are awesome! I received your message, and when I can gather some chat time, I will certainly e-mail you! Mine is sled capon at gee male dot com, if you wish to chat! Hugs!