Archive of ‘Art’ category

To Be Changed. Option B


Option B Close
“This is freedom. This is the force of faith. Nobody gets what they want. Never again are you the same. The longing is to be pure. What you get is to be changed.”–Jorie Graham

I’ve logged in to write here dozens of times since my last post. The cursor blinks, but I can’t seem to shape my ongoing heartache into words.

It’s been a month since I drove myself to the doctor to have my staples removed. Each chunk of metal she pulled loosened a deeply embedded piece of sadness. I wept. My dear physician gently reminded me of where I’ve been. She’s seen me worse. We talked about my adrenal crises in the past after surgery and the ways my very real physical symptoms feed my anxiety. We spoke about the trauma and grief of another wounding.

I’d seen my counselor earlier in the week as well. For ten years pieces of the life I thought I’d live have been falling away. I’ve begged God for restoration. Some kind of “magical thinking” has prevailed. I’ve still believed I will heal, and I will be more well. I’ve imagined the surgeries would eventually stop and the progressive nature of my EDS and all the resulting conditions would be slowed. Over and over I’ve visualized my body becoming strong again.

I’ve talked of loosening my grip, surrendering my life and opening my heart to this hard, but I’ve never fully considered that almost everything I hoped and planned for is ‘impossible’ now. In the face of permanent physical disability I have to accept the reality of my limitations.Rebellion

The only gift I wanted for Mother’s Day was Sheryl Sandberg and Adam Grant’s new book Option B: Facing Adversity, Building Resilience and Finding Joy. It’s rocked my world. How did I miss this basic truth for so long?

Option A is no longer available.

I began writing on two sides of my journal. The left side is full of all the things my life used to be and the ones I hoped and prayed for the future. I crossed through almost every goal or dream. On the right side is Option B. I’m still staring at the mostly blank page. I’m sitting in this empty space. I’m waiting quietly. I’m praying the words of Calvin Miller,

“Teach me the wilderness simplicity. Help me to point to You, honestly and joyously, as the threshold of all that really matters.”

This is the force of faith. I get to be changed.

My Hope remains.
Option B

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Star Song



Salvador Dali 1969 Lithograph from the BIBLIA SACRA 33 – SANCTUS RAPHAEL ET TOBIAS

We have been having
epiphanies like stars
all this year long.
And now, at its close,
when the planets
are shining through frost,
light runs like music
in the bones,
and the heart keeps rising
at the sound of any song.
An old magic flows
at the silver calling
of a bell,
high and clear.
Falling. Falling.
Sounding the death knell
of our old year,
telling the new appearing
of Christ, our Morning Star.

Now, burst,
all our bell throats!
every clapper tongue!
Stun the still night.
Jesus himself gleams through
our high heart notes
(it is no fable).
It is he whose light
glistens in each song sung,
and in the true
coming together again
to the stable
of all of us: shepherds,
sages, his women and men,
common and faithful,
or wealthy and wise,
with carillon hearts,
and, suddenly, stars in our eyes.–Luci Shaw

If you’ve read here long or at my old blog you know I love Advent more than any other time of the year. The order of the liturgical season leading up to celebrating Christ’s birth keeps my heart in a circle of never forgetting. It reminds my soul continually how the plan for Redemption was THE only plan. Throughout the Old Testament there are the hints and guesses that grow into clear signs of who would come to save us. I love spending an entire month so mindful of the miracle. Christmas is a big reflection of what God asks us to do with our lives all year long. He wants us to watch and wait. He wants us to draw near to the simple and humble and the human so we can really finally understand what a sacrifice God becoming man was and is. It’s Grace in slow motion, step by step to Bethlehem.

Growing up in Staunton, Virginia our amazing public library had large reproduction art pieces that were framed, and you could check them out to hang in your home for awhile. I was obsessed with decorating and design since I was a young child. I was always wanting to make my space inspiring and beautiful. My mom would let me check out the art from time to time. My favorite was one of irises printed on a grass cloth type canvas framed in gold. We didn’t grow up with much actual art in our home. There were cross stitch samplers of Bible verses and one big watercolor painting of my sister on a carousel hung over our couch. That’s about it. I didn’t have exposure to art through museums or my schoolwork either. It was just something that felt important to me like a good thread count and the right lighting. It was something I was born hungry for like poetry and architecture. It is something we all need and want at some level if we are honest with ourselves. In many ways the place I grew up became the canvas I studied. Watching the seasons change year after year in the Shenandoah Valley shapes your soul for beauty. All art is born from the master artist, our Creator, and I was blessed to live in the bowels of one of His special studios for many years.

Thanksgiving and the month of December are a time for looking backward and forward. As I play this long year in my mind one of my deepest blessings has been a friendship that came out of a strange and unexpected place. It has grown into part of my healing so deeply I don’t know if one would have been possible without the other. We are different in many ways and kindred in just as many. This creates an honesty and perfect iron sharpening iron way of communicating that is rare. We found out early on we both have a love for all kinds of art and need beauty around us in our day to day to be okay. Besides a whimsical collection from an Ohio watercolor artist Dan and I bought at the beach in North Carolina in 2006, which we have refused to part with during all our losses, we don’t own much meaningful art anymore. In our one year lived in and cherished home we have large walls with just empty space which is okay with us and especially me. I don’t want to hang things just to have something there. Everything in my life now really should reflect meaning and sometimes the empty space is just good. It’s part of the waiting for restoration and healing.

Not long after my hardware removal surgery, the second of three major surgeries in a row this fall, my new friend showed up on my doorstep holding a large piece of framed art to borrow. She had been in my room and even spent time lying in bed with me when I was too sick to get up. She could see I spent most of my hours turned on my left side facing a large blank wall. This particular piece of art had been in her bedroom and brought her encouragement through pain. It’s a stunningly painted forest with the richest colors creating a depth you have to trudge through. You have to explore it layer by layer until you reach this little patch of yellow, yes, light, at the very end of your journey. She brought it on a day I felt so hopeless, so sick, so lost in the woods I could not imagine making it through. She left the painting here for me to borrow. We hung it on the big empty wall I face when I am in bed the sickest. No matter what I could see the light. I could move towards the light. The painting changes depending on the day and the mood and yes, the light, and it has never looked exactly the same twice. I am still caught off guard when I stop to consider it. I still cry when I tell the story of how a little block of the purest shade of yellow somehow helps me believe it is going to be okay.

Several weeks later my friend showed up with a religious piece to borrow. It is in our living room over the mantel. Dan and I sat enjoying our coffee this morning discussing this particular piece. Beyond the literal meaning we have our own interpretations. The angel and light overshadow the struggle below of man. It is a hopeful piece. It came from an artist whose friend knew he was agnostic so he asked him to study Scripture and paint a series of work depicting Biblical stories in prayer of stirring his heart to come to see the truths he held dear. I think I will need to return this piece after the holidays before I become too attached, but it has illuminated our simple holiday decorating and speaks to the spiritual journey we are on this and every Christmas season.

Pulled by the tinsel and things and expectation of things I see the angel speaking to us glad tidings of great joy. Sit down. Be still. Listen to how this aching and hurting and waiting will unfold now. I know there were days and weeks and even months without a sign. You thought I had left you here without a Savior. Your suffering and your broken bodies and hearts will be healed by His stripes. A baby born of a virgin is just the beginning of the miracle. You will be saved! Do you believe? Can Redemption happen so slowly it begins as a shoot from a stump? Can it be as simple as a scene in a manger?

Light a candle tonight.

Take one step.

He is coming.

We have stars in our eyes.

(This is a repost from my blog last December with some personal narrative removed. Glynn Young wrote on his blog, Faith, Fiction, Friends, about the importance of art in his life. It sent me back to read this entry. The Dali is returned now and a Marc Chagall is my newest piece on loan. The sun is shining. I’m exhausted, and my treatment has been delayed until 3:30pm today. My dear friend and art benefactor will take me. Since I returned from the hospital this morning for blood draws I’ve been staring straight into the light. I’d rather go blind than look away.)

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Nothing is ever black and white. A giveaway for zebra heroes


“Heroes didn’t leap tall buildings or stop bullets with an outstretched hand; they didn’t wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else’s. And maybe that one act could lead someone to rescue you right back.”–Jodi Piccoult, Second Glances


“When you hear the sound of hooves, think horses, not zebras.”

This phrase is taught to medical students throughout their training.

In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.

But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos Syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.

This morning I am keenly feeling my stripes.

My husband says I’ve had “rock star” access to almost every specialist you could find for my complicated Ehlers-Danlos condition. My neurosurgeries have been performed by arguably the most skilled and compassionate leader in the search for the most whole life for EDS patients. I see the best cardiologist. I’ve explored all the other aspects of this DNA mess including genetics, hematology, gastroenterology, mast cells, gynecology and autoimmune disorders. This list is not exhaustive, but it gives a small window into how systemic this disorder can be in some patients, especially those of us with mixed type EDS. Because of Danica’s early Chiari diagnosis and her first brain decompression failing I was thrust into a life of research and battles in a war I would have gladly given my own life for. I call Danica my first angel in this journey, because if it were not for her suffering and her bravery I may have never found my own diagnosis explaining the decades of pain I had already walked. I call YOU my second angels, because you helped my family and I untie impossible knots by listening, loving, praying, supporting financially and always Hoping.

I sometimes wonder what it was like to be chronically ill before the internet. It has really only been in the last ten to fifteen years we have been able to search our symptoms before a doctor’s appointment or run to WebMD after a diagnosis and then find a support group immediately of people who have the same illness we have. We have access to medical research and journals that were only available in print and to a select few prior to the information age. We’ve become experts in ways even our best doctors cannot. More recently social media emerged. In addition to the wealth of knowledge we also have countless facebook groups, public and private, to ask questions about our diagnoses, share information on the best physicians and our experiences with them, post imaging and swap medical articles related to our illnesses. We have hashtags for our conditions. We create YouTube videos to raise awareness and give others outside our sick community a window into what day to day life is like. We create fundraising pages to share and be shared in an effort to pay some of the exorbitant price of continuing our fight for the most whole life. We have caringbridge pages to keep family and friends updated during surgeries and treatment and some of us have chronicled our journey with great candor through personal blogs. Just when HIPAA is cracking down even more harshly in medical settings, we, as patients, are going further and further down the road of willingness to open up about our personal health information with anyone and everyone who will listen.

I was one of the early ones in some of these groups. There were just a few zebras who had gone before me. Now, there are thousands and more are being diagnosed every day. The awareness is working. One by one our general practitioners are learning through us we do not just have fibromyalgia, migraines and psych issues. We are fundamentally broken at the cellular level in a way that affects every part of our bodies.

My old blog Team Danica had thousands and thousands of visitors because I was writing faithfully about our journey diagnosis by diagnosis in a narrative that explained this life in the reality of the pain but also through the lens of Hope. It documented the progression of comorbid conditions and the fight to see specialists who believed in their connection to EDS. Google search engines brought almost anyone typing in key words related to Chiari or EDS. People began emailing me and finding me on facebook and asking for help. I will admit in times when I was most ill I could not support all the people who needed help. I felt guilt but also sadness there was no place for them to go. A dear fellow Zebra created a private place on facebook called “Beyond the Measurement. Chiari, EDS, & Chiari w/EDS.” When I joined I know we had under 100 members. Today there are 2,609 members and exploding. It is a place of heroes rescuing heroes. I am proud of Robin Armstrong Griffin, her vision and the countless hours she donates to keep this safe and nurturing place going.

My book, Gauntlet with a Gift, will be the first book in narrative form taking a newly diagnosed person through the journey in medical diagnoses and specialists but also through the mental, emotional, relational and financial struggles we fight daily. It is a beautiful and sometimes unbelievable story meant first for my fellow warriors, second for the people who walk along side us trying to understand, and lastly for anyone wanting to be inspired by hidden gifts in a gauntlet of suffering that truly has no end in sight.

When I was in Texas on retreat one of the first people I met was a dear mom who has four children in the early stages of diagnosis and treatment. I was praying for affirmation from God about the direction of Gauntlet with a Gift. One of the reasons I wanted to attend this retreat was knowing Marilyn McEntyre was leading sessions. Her background in medical humanities made her a perfect resource for this work of love. Once again God answered exceeding, abundantly above all I could have asked or thought through this connection. The last day of the retreat, after we had spent rich time together on Saturday, she brought me her book Patient Poets. Illness from the Inside Out as a gift. She did not know I purchased this book from the Laity bookstore and had been pouring over it. I have already bought copies for friends and am giving one away here today. It explores the emotion behind our lives of pain and our fight for being just a little more well.

The past week I’ve spent time on many phone calls with people all over the United States looking for the wisdom I’ve gained because I am steps before them in this fight. I have directed two local woman referred to me from friends who are very sick and desperate for a real reason. I know they have connective tissue disorders. Last night I logically walked a friend through the next thing she needs to do. She is a woman who knows all I do but has less support and different circumstances making her battle more fierce. When you can’t lift your head off the pillow it’s so hard to do the next thing. I am also watching my younger sister finally realize she has many of the same conditions. Months ago I bought her an Aspen collar. She is waiting for a May appointment with my neurosurgeon. Every time I see her I feel a form of post traumatic stress, because I want to give her all the access I’ve had. Her story may look very different than mine. Knowing all I know I just want to hand her any relief I can.

I am feeling compassion fatigue. God is showing me the best and most beautiful way I can help is finish this book. This is why I stopped writing at Team Danica and moved here. It is also why at the beginning of the year I will have to turn off notifications from the support groups, silence my phone and do the very hard work of retelling our story along with detailed medical information and vignettes of the caring physicians and other patients who have saved us, all heroes untying our knots.

I was blown away by the nominations posted in the comments of my Big Box Giveaway. If you haven’t read them take a stroll over there. I know I said no more giving this year, but I was inspired to do one more after all the talks I had last week.

Included is a beautiful piece of Kelly Rae Roberts art framed and behind glass with the message “I choose hope.” A copy of Marilyn Chandler McEntyre’s book Patient Poets, mentioned above. A Zebra mug like the one my sister recently gifted me. It has a zebra on the front and our motto on the back, “Nothing is ever black and white.” Also my favorite Tazo tea, Joy. a perfect blend of black and white tea and a little zebra ornament for the tree. Oh how difficult the holidays are for us!

Here’s how to enter for the special zebra gifts you see here to be mailed to one of your own heroes.

1. Comment below on this post about an EDS or Chiari hero who has inspired you and helped untie your impossible knots. I will be randomly choosing a winner after midnight Thursday so I can mail this care package on Friday.

2. Many of you are personal friends on my Monica Roberts Snyder facebook page or followed Team Danica. Click on the facebook link at the top right of this blog and “like” my new writer page. This is where you will get updates on the progression and publication of Gauntlet with a Gift. Subscribe to receive new blog posts by email on the right side of this post.

3. Share this with your zebra friends! Our Hope remains!

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Giving Tuesday . . . A Big Box Giveaway


“Christmas, my child, is love in action. Every time we love, every time we give, it’s Christmas.”–Dale Evans Rogers

Giveaway - Copy

It’s no secret, following close behind words of affirmation, giving gifts is my love language.

I often think of those who may not have someone shopping for them during this season. Maybe it is a single mom who is scraping together enough to buy her children a little something that will never compete with the other parent’s gift giving ability. Her children are small, her friends are few, her parent’s gone or estranged, and there is no Christmas magic waiting for her beneath the tree.

I think of the married mom who manages the budget. She tells her husband there is nothing extra for him to shop for her. She still squeezes out enough to surprise him, but she sacrifices to keep the bills paid and not to add debt to their already difficult finances. (This is me!)

Or the woman whose husband is just a little clueless. No matter how she hints she’d like something else, a small kitchen appliance or, even worse, a Victoria’s Secret bag appears beneath the tree.

Maybe it is a single woman with no husband or children spending the day far from family because it is too expensive to travel or she must work. She wakes Christmas morning alone with maybe a few gifts mailed from home.

If you are a guy reading this maybe you have no idea how to pull together a surprise Christmas for your wife or girlfriend, and you could be the hero this year!

I want you to think of someone in your life who could use a Christmas surprise.

For Giving Tuesday I am mailing a box of some of my favorite things to you or a friend you nominate. Included is a beautiful milk glass vase from BHLDN. There is a grown up coloring book and a set of metallic coloring pens I loved so much when my friend Sarah sent them to me I ordered another set off Amazon just for this giveaway. There is a Smash book and extras along with a copy of my favorite magazine, Darling. If you can bear to cut it up after you enjoy it, this magazine is perfect for collaging in your Smash book. (I will have a post in January about collage as art. If you’ve never done it you must.) There is my favorite mint EOS lip balm and cuddly “Life is Good” socks. There is a Kelly Rae Roberts photo album and cloth banner. There are a few more goodies not pictured so they remain true surprises. Also not pictured is a special piece of my own Kelly Rae Roberts art. I will give you a peek tomorrow.

To enter:

1. Comment on this post by nominating someone you would love this package to go to. Share a little bit about why they would be so thrilled to receive a box of love. Just using their first name is fine. If your nomination is chosen I will contact you for their address.

2. Share this giveaway with your friends in hopes they will nominate you!

3. If you already know you are probably getting a small appliance go ahead and nominate yourself!

This is my last giveaway this year. The winner is chosen with a nifty random app and will be chosen midnight Friday so I can get this box in the mail. Let’s have some fun!


. . . Added today as promised, the beautiful and very meaningful piece of Kelly Rae Roberts art that will be included in my Big box giveaway. When Danica had surgery she called me mama bird, and I called her baby bird. God called us both to be fearless in many things. I love reading the comments so far! Share with your friends. This giveaway is open until Friday at midnight.

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