Monica Kaye Snyder

Apr 13
2015

The Peace of Wild Things

by Monica

I know many of you are waiting for a health update after so much prayer and love over the past few weeks. I am slowly recovering and trying to write. Today was the first truly beautiful day this spring. Despite my exhaustion from driving myself to the doctor, waiting, having blood drawn, having a mast cell reaction to the receptionist’s hand lotion, grabbing a few things we needed at the store and driving home in time to pick up Danica at car rider, I felt this deep need to meet God outside. Instead of coming straight home and falling into bed I pushed my body and surprised Danica with a drive to Quail Hollow State Park. I brought my camera. I breathed deep and long, and my heart slowed for the first time in a long time. This is how I feel in the woods, on the trail and by the pond. This is how I feel walking the labyrinth in prayer. This is how I feel with the breeze in my hair and the sun in my face. This is how I feel when I quiet the noise and listen to His voice. I find Peace in these wild things.

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.–Wendell Berry

Apr 9
2015

Beautifully In Over My Head. Gauntlet Story Feast

by Monica

Rachael

Welcome back to our Gauntlet Story Feast Community

This week’s story comes from Rachael. She is an eighteen year old warrior headed into fusion surgery on Tuesday, April 14th. Please pray for her and her family. Please pray for Dr. Henderson. Please pray for healing. Her beautiful heart of faith and courage will bless you. If you would like to donate to Rachael and her family as they bear the cost of this upcoming surgery you may donate here. Every drop makes an ocean.

Beautifully In Over My Head
By Rachael Wilson

“You were young, you were free, and you dared to believe you could be the girl who could change the world…”

Strong. Energetic. Hyper. Adventurous. Crazy. Daring. Random.

As a child, I did simple things, and I loved every moment of it. I was happy, healthy, spunky, and excited about the future.

I danced. I dreamed. I laughed. I lived.

I ran with my friends, and I ran fast. I jumped up and down, and I jumped high. Aside from schoolwork, I spent my spare time doing anything I could to stay active. I played with friends. I made crafts. I rode my bike. I explored nature. I went to church. I traveled places. Basically, I had enough energy to do anything I set my mind to.

“Then your life took a turn, and you fell, and it hurt. But you’re still that girl, and you’re gonna change this world.”

By the time I was in 9th grade, I was a dreamer; excited to serve God, and ready to follow wherever He led me. I began dancing at a Christian studio, and I fell in love with ballet. There was something magical about transforming into a ballerina and worshiping the Lord with movement. I was dedicated, and I became stronger than ever before. I could dance for hours and still have energy to spare. I had the typical dancer lifestyle: Eat. Sleep. Breathe. Dance.

I started noticing a change in the way I felt at dance class. I didn’t have nearly as much energy, and I had confusing symptoms. I blacked out when I turned. I saw stars when I stretched. My heart was pounding when I jumped. My legs felt like bricks when I would leap. My hands were shaking with tremors when I tried to make them graceful. I had scary chest pain. But I kept pushing through. I wanted to dance more than I cared about the odd sensations. Eventually, something was clearly wrong. Long story short, I was diagnosed with POTS syndrome, and put on medication to control it. The struggle to continue dancing was worth it to me. Fast forward a year, and I developed more symptoms. This time, it was pain. I was diagnosed with a genetic condition called Ehlers Danlos Syndrome.

Soon after, I started having relentless headaches. I began seeing flashes, blobs, and lines in my vision all day. I woke up with vision loss. I developed nearly constant vertigo. I started forgetting simple things. My arms began tingling and getting numb. I became exhausted after simply walking up stairs.

I wasn’t sure what God was up to, but I clung to my relationship with Him. I knew He could use my mess…somehow.

A neurosurgeon diagnosed the cause of these symptoms as cranio cervical instability, atlantoaxial instability, and brainstrem/spinal cord compression among other things. At my appointment, after he reviewed my MRIs, we were told surgery was necessary. There is peace in knowing this is what God has provided to get my life back, but fear in knowing what it will take to get there.

“I’m standing knee deep but I’m out where I’ve never been. I feel You coming, and I hear Your voice on the wind…come and do, whatever You want to.”

Having a chronic and often invisible illness presents its daily challenges.

You learn to constantly fight your body to do things that most people take for granted. The desire to be active is there, but it is trapped in a body that won’t allow it.

“Further and further, my heart moves away from the shore. Whatever it looks like, whatever may come I am Yours…”

You watch yourself fade, but you also watch yourself bloom.

You learn that every day God gives you…every moment…every breath…is a miracle as much as it is a blessing. A friends joyful laughter. A bright sunny day. A calming song. A silly joke. A perfectly timed devotional. The smell of the crisp spring air.

“Then You crash over me, and I’ve lost control but I’m free, I’m going under, I’m in over my head. Then You crash over me, and that’s where You want me to be…I’m going under, I’m in over my head…”

As a chronically ill person, you spend a lot of time resting. You have plenty of time to sit and think. You can easily find yourself thinking enough “what if” thoughts to write a novel.

It’s not always sunshine and rainbows. You will wonder why God is allowing this. You will wonder if He is still there. You will wonder why you have to suffer and feel extreme pain. You will wonder if you will ever find relief. The truth is, ALONE we are not able to handle whatever challenges may come our way.

“When my heart is overwhelmed, lead me to the rock that is higher than I.” Psalm 61:2

Alone we are WEAK. With God we are STRONG. Alone we are AFRAID. With God we are BRAVE. Alone we are in PAIN. With God we find COMFORT. Alone we are WORRIED. With God we are HELD. Alone we CANNOT do this. With God we CAN.

Rest in knowing that your gauntlet, your struggle, and your fight is the stepping stone into the gift of becoming exactly who God needs you to be to fulfill His plan for you.

“Whether I sink, whether I swim, it makes no difference when… I’m beautifully in over my head.”

About Rachael in her own words:
I am an 18 year old recent high school graduate who is looking forward to pursuing a degree in the medical field or Christian counseling following recovery from my cranio-cervical fusion.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.

Apr 2
2015

Life is a Gift. Gauntlet Story Feast

by Monica

Welcome back to our Gauntlet Story Feast community.

This week’s story is from Pamela Fenner. Pam was my very first hero in this walk. In the initial research stages of writing Gauntlet with a Gift I went back to all the messages between Pam and I on Facebook and in email. As I read through them I realized over the years we had written a beautiful book of our own. She forged the way for me in her own neurosurgeries, and Danica, in many ways, paved the way for her daughter Eden’s surgeries. Through pages and pages of detailed medical research and information about doctors and hospitals, symptoms and diagnoses and medications and therapies there is a beautiful thread of faith and friendship. It is a sturdy life line held in the hands of two women who have intimately shared and grown through the most painful challenges. Pam is perhaps the most giving zebra I know. She is a support to many in their walks while at the same time tirelessly advocating for more research and better understanding of Chiari, Ehlers Danlos and other accompanying disorders among physicians and anyone else who will listen.

Pam will be heading back into surgery this coming Tuesday, April 7th, for fusion of her C5-C7. Please pray for her and for Dr. Henderson. Please pray for her dear husband and children. Please pray for strength and healing.

Life is a Gift
by Pamela Fenner

“Life is a gift. Regard it as such. Return the blessing through each life you touch. Every seed planted springs forth new birth. Allow your bouquet to cover the earth.”–Lorna Jackie Wilson

My world had been rocked to the core. One doesn’t imagine their life can change in the blink of an eye. I never imagined handing my daughter over to a neurosurgeon four times (now I know that number will only increase over the years). I never imagined that I would need a brain surgery, along with a spine surgery, to attach my skull to my neck just to stay alive five years ago. I never imagined more brain surgeries would be in store for my daughter and I. I never imagined more spine surgeries would be in store too.

Living with Chiari and Ehlers Danlos Syndrome teaches you to expect the unexpected. Be prepared when they check your heart they are going to find something major. Be prepared they are going to find something major in most of the other places too. EDS involves a defect in collagen which makes up the entire body so even your blood vessels will be affected. Be prepared to find out these conditions have no cure (surgery is only a bandaid) but worse, these conditions are poorly understood and lack research and funding. Be prepared to have to arm yourself with knowledge so that you can be the best possible advocate for yourself and for your children (you unknowingly passed this onto them) as it will become your job to bring everyone up to speed. You will fight for your lives until you make it to a doctor who understands and can help. There will be plenty of days when you can barely lift your head off of the pillow, but you will have to, because your child is suffering too and needs you. The surgeries, the daily pain, all of the medical appointments, dealing with insurance, the mounds of medical bills . . . they can suck the life right out of you. Just when you might start to see light at the end of the tunnel something else rears its head, and you are thrown right back into the abyss.

At some point in time you accept the hand that you have been dealt. You convince yourself that just because you have these conditions it doesn’t have to mean that they have you. You learn to put on a great game face, become quite good at suffering and smile to hide the pain. You become kinder as you realize that everyone faces battles. Theirs are just different from yours.

I have always had what I thought to be strong faith, but evidently God thought it could stand to be a lot stronger. The storms kept coming over the years and each time I would let worry, fear and stress consume me. I learned to live in “survival mode.” When my daughter’s Chiari symptoms were the worst I would go into her room several times a night to check on her just to make sure that she was still breathing. My son had blood sugar that plummeted (especially during the night), and I would go into his room and check his blood sugar while he was sleeping. I never slept back then. My daughter would have one surgery and start to do well, and then things would go haywire again, and she would develop a new problem. In my son’s case it took nine years to get to the root of his low blood sugar, a rare Carnitine deficiency. His doctor asked me if I was sitting down before she delivered that news to me over the phone. In the midst of things I had my own serious problems that needed attention, but we learned to survive daily by triaging who was worse. I squeezed in my surgeries when an opportunity would present itself, and the light at the end of the tunnel would start to dim again. The stories I could share are unimaginable to most, and unless you lived under our roof you really have no idea. Things never let up and the stress, fear and fatigue were draining. There was no end in sight. This was our life. This is our life.

Surgeries and treatments over the past few years have certainly been miraculous, helping so much, but when you live with chronic conditions, there never is an end in sight. The stories will remain unimaginable. Today, I no longer fear the storms. They have made me stronger and because of them, an indomitable spirit now resides inside of me. The storms have taught me that worry and stress won’t ever change the outcome, but that they will take away the day’s sunshine. I learned that fear doesn’t prevent death, but instead prevents life.

My faith is much larger now. It is impossible to endure difficult times without huge faith. There is no longer a reason to live in “survival mode” once you “let go and let God.” I have been given the opportunity to see life through a different set of eyes. I now see everything I didn’t notice before when I was too busy and too distracted. When you don’t have your health you learn very quickly what a precious gift life really is. You begin to not take one day for granted. You realize that the secret to having it all is already knowing that you do. Perhaps I have been given a gift wrapped up in a daunting medical diagnosis.

About Pam in her own words:
I spent years trying to figure out the cause of my headaches and other symptoms after my son was born fifteen years ago. I was diagnosed with “Migraines” and “Fibromyalgia” back then. I had gone from living a pretty healthy life to a life full of symptoms that snowballed out of nowhere. My head pain and symptoms became much worse after the birth of my daughter six years later. She had difficulty with crawling and walking and at two years old was sent for a brain and full spine MRI. The radiologist handed me the report before we left the hospital. I will never forget that day. That is when I heard the word Chiari for the first time. I immediately Googled it when I got home. It was at the moment when I realized what I had been suffering from for years, and it was not long after when I learned about Ehlers Danlos Syndrome. In 2009, all three of us were diagnosed with EDS by genetics.

I am so thankful for the amazing support system of the online community that has been created by patients and families living with these conditions. I have met so many wonderful people on this journey who have been there for my family and I even during some of the most difficult days of their own lives. They “get it.” Sometimes no words need to be exchanged. What a beautiful gift, to be carried by others, when life has knocked you down.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

Mar 28
2015

Undone. Treatment Again. And a giveaway

by Monica

I began reading Michele Cushatt’s Undone: A Story of Making Peace With an Unexpected Life at the beginning of a challenging week. You may have noticed quotes from her book on the graphics for recent posts about our new Thursday community called Gauntlet Story Feast. I finished reading it yesterday while waiting at the hospital. Michele’s narrative is full of truth spoken into my mind and heart at a time when the lies seem much louder and more believable.

Her story is completely different from my own. It involves ministry, divorce, remarriage with a blended family, foster children and recurring mouth cancer. Still, there are quotes at the beginning of each chapter that I have woven into my own tapestry of faith over the years. Most of the Scripture she shares are verses and passages I have scribbled on index cards, in journals and highlighted and bookmarked in my tattered Bible. There are moments she bares her soul in such a way I can literally see my own reflecting back at me.

I’m heading back into the trenches of treatment. There are always weeks I dance around what I know is happening in my body, and there is always a moment when it becomes clear intervention is needed again. I get that heart pounding, mind racing, nausea inducing panic. Every time, I begin with a wail similar to Michele’s when the fears of her cancer returning, prompted by some kind of physical manifestation, would cause her to cry she just couldn’t do it again. Another surgery. Another treatment. Not again.

She candidly writes about trying to do all the healthy things she knew may bring some measure healing. I certainly have been dedicating myself to these things as well. Eating well, exercise, mental health counseling, consistent time in the Word and prayer and meaningful relationships with positive people have been my primary focus since my last round of plasmapheresis over Christmas and New Years. All of this is good. But when your DNA is glitched. When your cells have morphed into invaders. When God answers a resounding “No” to the pleading for Him to remove your thorn in the flesh you start to know

. . . the hard way, that sometimes trauma grows beyond a long walk’s ability to cure. The losses, crises, transitions, and upheavals extend beyond the arm’s capacity to hold. At times, even when your belief in and love of God run strong and true, your body just can’t take any more of the trauma.

The first time I had apheresis I was in-patient in Maryland. It was a year ago. Dan and I left our girls on Easter weekend to begin this new chapter in my quest for healing. I had a three pronged nearly foot long “Quinton” catheter placed. It hung from the side of neck and made every movement uncomfortable. I had eighteen surgeries under my belt by then, five in that hospital. Because my venous system is also affected by my EDS I require a PICC line for most things. I knew the interventional radiologist and trusted him and the team implicitly. Still, I had nothing to compare this placement to. Lidocaine doesn’t really numb me. I tell this to everyone who tries to use it. They never quite believe me. I’ve learned to bite my lower lip, hold back curse words and let people take the cut. I think everyone on the outside looking in at my life must somehow think it gets easier or less frightening or even less painful to go through these traumas over and over again. I’m telling you it does not.

When I repeated my treatment locally and out-patient in early September, 2014, we decided to have the line placed at my insurance preferred hospital for financial reasons even though the actual apheresis be at a local out of network hospital. My dad took me for a scheduled 7 am surgical appointment. There was an emergency that required the room, equipment and doctor and nurses I was supposed to have. The hours dragged on while I laid in my cap and gown in holding. Every once in awhile a nurse would poke her head in and tell me it wasn’t going well in there, and it would be a little longer. I had treatment scheduled at the other hospital at 2 pm. Finally they were able to take me back, but the entire room seemed disheveled. The nurses were exhausted from whatever they had just gone through. The doctor came in and said he knew I had to rush over to make my treatment time so he wasn’t going to use any sedation drugs at all, just a shot of lidocaine. I made my “it doesn’t work for me” plea. He brushed it off, and he took the knife to me. It was horrific. The entry for this tunneled cath was different. He kept getting the needle in but couldn’t get the angle right to jam the tube in. He was frustrated and I could literally feel the frustration in his frenetic efforts. I was bleeding. I could see it and feel it. I was freaking out and hot tears were running down both sides of my face into my ears. It was sewn lopsided and pulled and chaffed the entire time I had that particular cath. I developed a huge bruise around the area from the jamming and pushing of the tube. I swore I would never let that doctor work on me again.

My last round of treatment was late December, 2014. I didn’t care what the extra cost I knew I wanted the cath placed at the same hospital I would have treatment. They were so much kinder. They tried to give me some anxiety and sedation type drugs. I think they calmed me a little. I was still fully awake and very aware. The lidocaine was once again like a placebo. The doctor was much gentler with insertion. I still remember crying the entire time. Once of the nurses stood next to me and wiped my face with tissues.

Monday at noon I will have a catheter for a central line tunneled from a cut in my jugular all the way into my vena cava. This allows for multiple lumens so blood full of bad antibodies can leave my body and theoretically clean plasma in the form of albumin can enter my body all at the same time. Tuesday I will begin the first treatment.

The plan is to have five spread out over ten days. This has typically removed about 98% of my bad antibodies. What we know now through more cases and research is my body is slowly recreating these suckers and around 60-75 days after treatment I am back where I started in terms of the science and symptoms. The new recommendation agreed upon by three of my specialists, including my cardiologist in Toledo who I saw Tuesday, is we clean me out and follow immediately with an old chemotherapy drug. It is well understood. It is easy to administer weekly. It is easy to monitor for side effects and toxicity and would hopefully suppress the bad antibodies from returning. There are three other drugs we can try if this one is not tolerated. The time frame for this treatment would be six months or longer.

My parents are in Spain. My girls are on spring break. The logistics of this treatment are so hard because each day I have to go very early in the morning to get labs drawn and either sit at the hospital for hours waiting for a call from the unit for a time or drive home and wait and then go all the way back. We have Monday worked out with Dan taking off and my sister helping with the girls. Tuesday Dan will leave work and take me whenever they set a time for treatment. Even if the girls have to ride along and they drop me and then pick me up it will work. We had a little family meeting last night. Dan said, “We are just going to do our best. That’s all we can do.” There is no molly coddling our girls anymore about how this sucks. This is another break from school where all the focus is on their mom, and they have to stay still, be quiet, watch movies and wonder how the rest of their friends are having fun.

Thank you for the offers to help with meals. My friend created a Take Them a Meal schedule. The sign in is “Snyder” with the password “Help”. All our other needs are repetitive, and I weary of making them known. More than anything we need prayer. Please pray.

Michele writes at the end of her story,

Making peace with the unexpected life isn’t some trite, Christian cliche. It isn’t a beautiful string of words that look nice and shiny hanging around my neck. The kind of peace that weathers a furious squall by sleeping in the boat is both hard earned and God delivered. One story–and serving of manna–at a time. And by the mercy and grace of the one who walked me through all the storms leading up to this one, I can finally say, even as the rain soaks my face, “I am convinced.” He will not let me go.

Today I feel like I just can’t take any more trauma.
What I believe about God says I can.
I am convinced.

Our Hope remains.

When you are faced with a daunting trial what Scripture do you cling to the most? Will you comment here with a verse so I can feed on truth in the coming weeks? And will you use the share buttons below or quietly ask a friend to pray for my family and I? We are grateful. I am giving away a copy of Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life. Each comment of Scripture will be an entry into a random drawing Friday morning, April 3rd.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

Mar 26
2015

Silent Entrapment. Gauntlet Story Feast Begins

by Monica

Welcome to our first Gauntlet Story Feast.

Suzanne has been posting her beautiful poetry and prose on medical message boards I belong to for some time now. When I stumble across her words I always discover something I have wanted to say and could never quite express. In the piece she shares with us today she captures perfectly the inner dialogue of knowing something is very wrong with your body but trying to argue it away because you, along with so many doctors and your family and friends, don’t want to believe it’s true.

Silent Entrapment
by Suzanne Blackwell Anderson

How could this be? Silent entrapment, what? Out of the blue, unforeseen, from behind, like a slap the night. Can’t they see me, can’t they find me? I don’t understand; it should be plain, right in sight. Why the pain with no answers? Is she crazy? She must be. Whiplash, that’s not real. It can’t entrap, it’s minor, don’t pretend, get a grip. The anger, resentment as the world crumbles down. You’re not hurt, don’t fake it, it resounds oh so loud. Alone in the solitude, so deafening, like a shroud; blankets to settle like lead on the ground. The pain, oh the pain, descends like a cloud; thick, dark, angry as it swirls all around. I’m sorry, you’re crazy it’s all in your head. These tests they don’t reconcile with the pain you have said. The dungeon is dark, I can’t find my way out. It there light, is there hope? I fear not and dread.

Then on the horizon I see far away, a small trickle, a God-send, could this be real? I know I’m not crazy, it’s real, OH SO real. I’m riddled with pain from without and within. Please help me, please help me I cry deep inside, though my voice is small and my hope is so thin. Such gentleness, kindness and strength all in one. Like a knight in the darkness, a beacon, the sun. Yes, hope. Yes, light. Yes, truth will prevail. You’re not crazy, it’s real, see here my dear. Don’t worry, it will pass like the cold winter’s night. Spring time will come, I promise, hold fast. Don’t give up, don’t cave, you’ll make it, I’m sure. Hold tight through the night for the dawn’s early light. It breaks forth, now I see it! It’s there up ahead. I’m gleeful, with joy; I break out of the shell. My hope is restored, and my pain is withheld.

So much I have found in this dark winter’s night. Deep treasure was buried inside the veil that my vision can’t see, so please do not wail. It’s good, it’s good, this treasure inside. The sunshine, the sunshine it’s beauty provides. Unearthing, unearthing cannot be so pleasant, but deep with inside are the true gems of this life. The rarest, most precious they’re there; you will see. Hold on, hold tight don’t give up in the night, your Master the Creator, He created all these. They’re for you, just trust Him, PLEASE trust Him, He’s good, you will see. He’s the Potter, the Painter the Maker of these. The rarest, most precious for those who believe.

How can I ever thank Him enough? So grateful, SO GRATEFUL, my heart over-flows, like a river in spring time as the snow softly goes. Such compassion, caring and goodness I see. Like none other I’ve known in this journey of life; my good Father in Heaven who sees down below. The entrapment, the whiplash, like a thief in the night. I’ll help her, my princess, and then she will be, forever redeemed from the pain deep within and the pain from without. Like a shawl I’ll remove to uncover true light. My beauty for ashes forever she’ll be.

About Suzanne in her own words:

I began my journey with debilitating chronic illness in my early thirties. I had five young children in tow at the time which made it all the more heart-wrenching. I spent most of that decade attempting to regain my ability to thrive. I was ever so grateful for a small window of reprieve during my early forties, but when I was forty-seven it came to a screeching halt. All the ground I gained came crumbling down with such force I didn’t know if I would ever bottom out. When I finally did it felt as though I was buried in the rubble of an earthquake. I can’t imagine these subsequent years without the support of my online community. Not only do I consider these dear, dear ones my friends, but I consider them my family. They have been my life-line many times over and over again.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

Mar 25
2015

Gauntlet Story Feast

by Monica

I sometimes wonder what it was like to be chronically ill before the internet. It’s really only been in the last fifteen or so 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. In the last ten years 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 Caring Bridge pages to keep family and friends updated during surgeries and treatment and some of us have chronicled our stories with great candor through personal blogs. As 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.

Jodi Piccoult writes in her book Second Glances,

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.

One of my deepest desires wrapped up in writing and publishing Gauntlet With a Gift has been to create a beautiful space where the many heroes who have helped saved me and are untying one another’s knots can also share their own stories. I have already purchased what will be the eventual permanent home of this project but for now I plan to bring our community together here on my blog every Thursday. These posts from my brave friends may be short essays about challenges they are facing now, thoughts on chronic illness in general, hopes for their future, specific needs and fundraising links, a poem they’ve written, a story about love or kindness shown to them, or a narrative about a special physician or nurse who has been an angel in their journey. They will be varied and are meant to show as a collection the many aspects of our struggle. More than anything I want you to see the gifts along our very difficult paths and understand the courage we find in unsuspecting places to keep hoping and fighting for the best life possible.

Tomorrow I will post the first story. I have gathered a small group who are already slated to share for the first few weeks. If you are walking a Gauntlet or are close to someone who is and would like to contribute please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.)

Dan Allender shares this thought in To Be Told: God Invites You to Coauthor Your Future,

We human beings are meant to be celebrated. We are meant to be the subject of tears, struggle, and heartache, of raucous laughter, wonder and joy. We are meant to be birthed into the care of others who know and love our story.

One of the greatest gifts in my own Gauntlet is the caring and knowing of others.

My story matters.
Your story matters.
Alone we cannot manage all this.
Hand in hand we can experience it, walk through it and do the very best we can.
Together our stories can untie impossible knots and rescue one another over and over again.

Our Hope remains.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

Mar 22
2015

Charming Charlies. What I Know Beauty is Not

by Monica

I promised her. I told my Delaney Jayne several weeks ago I would take her shopping for a special mother, daughter date. She’s growing and changing in every way. Her blossoming like spring brings the need to find everything new. I’m sick. I’m getting sicker every day. I know I need more treatment and even see surgery on the horizon again. I’ve let my girl down too many times. Beautiful intentions have been crushed over and over again by the reality of this broken body. I woke yesterday after just a few hours of fitful sleep. I saw the look in her eyes and the carefully drafted list of needs and a few wants in her sweet little notebook. I did the chronic illness math in my head. How far could I drive? How long could I stand? How much clothing dye, perfume and people smells could I be exposed to? How much stimulation could my racing, raging mind handle? How many times could my shoulder pop out of joint from pushing hangers on the racks. How strong could I be when it came to the budget and reality of our family finances? Would I find the wisdom to share conversation with her discussing messages the world shouts to us about our appearance and identity? Could I gently show her the value of finding her own personal style? What kind of joy could come from all this hard? I divided the sum of all these things by the strength and Grace of Jesus, and I pushed.

Even when I was healthy I hated malls. I’ve never been one to shop at department stores with brand names or wander for hours looking for something to strike my fancy or fill up some space in my life. If I must buy I go to Target with a list. If I am looking for inspiration or a perfect gift I love Anthropologie or any shop small enough to be owned by someone I can say hello to when I walk in the door. I do love to putz at TJ Maxx or Marshall’s for a bargain but only for fun and mostly for my home. When I was well and worked I kept to a simple rule of mixing and matching classic, well made clothes. My sense of style allows for a new scarf or beautiful cardigan when the season changes, but what I wear is not something that consumes much of my thought at all. I still own many timeless pieces that I will keep and wear for years. I subscribe to the “cost per use” rule. This justifies a pair of black riding boots I paid several hundred dollars for and have owned eight winters. They’ve been cobbled once, polished every year, and I know they will last me at least eight more and look just as good if not better than the day I bought them. I wear sparse jewelry. Each piece holds some kind of meaning. Very little to nothing is “costume” for me. My weight has fluctuated from a size six when Danica was young to a size twelve at my heaviest through steroids and months in bed. I’ve given away the tailored pieces I know I will never fit in again. Pajama pants and a good hoodie are primarily my wardrobe now.

I admit I am completely sheltered and nearly oblivious to the consumption going on around me. I have been ignorant to the pressures my daughter faces daily when it comes to the kind of clothes and shoes she owns and wears. I don’t hear the constant yelling about how appearance is one of the most important statements you can make to let others know who you are, because I’ve had the volume down for a very long time. I didn’t grow up with any of these influences. I looked into the mirror every day with a cross stitch of I Peter 3:3-4 reflecting behind me. “Do not let your beauty be merely outward—arranging the hair, wearing gold, or putting on fine apparel—rather let it be the hidden person of the heart, with the incorruptible beauty of a gentle and quiet spirit, which is very precious in the sight of God.”

We climbed into the car in our garage, and I said, “Let’s pray.” I asked God to keep us safe, give us a good time together and guide our buying. I do this because my grandma always prayed before we pulled out of their driveway. I do this because my mom still says, “Let’s pray,” when she picks me up for anything. I know it makes Delaney uncomfortable, just like it did me for so many years, thinking this ritual might somehow keep us from a car accident or bring us to a sale we otherwise would miss. Now I do it because I acknowledge His blessing on our coming and going. I do it to acknowledge Him.

We’d gone to Target first for basics like camis and jeans and a simple dress for a choir competition this week. Walking into our local mall created an emotional response in me I could not have prepared for. My head snapped back as I smelled a rank contagion opening wounds with every swipe of a plastic card. The crowds wandered like zombies. I couldn’t see real faces. I felt sad and afraid. Was this my social anxiety or something more? I braved a store with clothing tailored to a young audience. The music, the square footage stuffed to overflowing with racks and racks of cheaply made formaldehyde smelling garments only good for a season at best, the cheap perfume, the too short shorts, the graphic messages on the shirts and the sheer number of girls pressing in to grab something made me dizzy. My legs were like jello. The burning in between my shoulder blades and the pain clawing up my back into the base of my skull forced me to find a stool in a dressing room. Delaney found some things she liked that could be basics for the season. I sat while she tried them on. I tried to do the real math in my head adding up the price of each item. I wished I had my mom’s old red plastic clicker she used to tally up our groceries. We always knew if we went over and had to put something back. My arithmetic was not so good.

We did that one awful store at the mall, and I told her I couldn’t do anymore. She could see it in my eyes. She didn’t argue. As we walked toward the exit we saw a Las Vegas type mecca of baubles called Charming Charlies. I limped and grimaced trying to think of a way to save this date. I offered to go into this store and let her pick out a few accessories to add color and style to her new clothes. She smiled. In we went. I felt like I was in the worst carnival fun house ever. All that fake metal and in no way precious stones and plastic and pleather made my stomach turn. The entire place was arranged by colors. I pushed her to the scarves in the two hues we had decided on. The ones she chose were pretty. I let her grab a necklace to go with her dress for the program. I waited in line and paid for these things with my mind swirling from what I’d just seen. We burst out the mall doors and I gulped fresh air. Inside the car I felt my vertebrae snapping into their places for the drive home. My eyes were burning and my face was bright red and on fire. Delaney seemed strangely happy if only because I had been able to do this with her. Whatever it looked like I was there, and this made it good. As we rode home I asked her where she thought all that stuff people bought in one day at that one mall would end up in the next year or two. She didn’t quite understand what I meant. I told her I think it will all end up in a yard sale or a donate bin or a basement tote. All that money and time and effort used up or stored up for nothing that really counts. We got smoothies. I began to instruct her about cutting the tags off so she didn’t make any holes in her new things. For good measure I reminded her to pick up any little plastic tag pieces off the floor. Oh God, my OCD is so bad. I can’t help myself even when I want to with all my heart.

Back at home I collapsed into bed for the rest of the day and night. Delaney came in later to hug me and thank me for taking her. I tried to apologize for my serious commentary on what was supposed to be fun. She said she understood. She asked if she could go through my scarves and pick a few I owned to borrow or even have. We laughed as I told her the stories behind some of them and how long I had owned them. I felt peace knowing God had allowed her heart to open to my experience. She went through my jewelry and asked if she could maybe have my old tarnished cameo ring. She said she would like to begin collecting lockets and could I gift the special gold one my dad gave me on my thirteenth birthday to her when she turns thirteen? My heart smiled.

Yes, daughter. Classic beauty. Accent your Jesus face. Don’t distract. Fine linen and purple will last. Dear girl, store up wisdom. Fill your mind and heart with kindness. Simplify. Less things that break or moth or burn. More hidden treasures of the heart. Charm is deceitful, my child. Most beauty is vain. Let Him make you gentle, quiet and full of God’s Spirit. Precious in His sight. Forever. And ever.

Mar 16
2015

Personal Retreat as Spiritual Discipline

by Monica

“But Zion said, “The LORD has forsaken me, the Lord has forgotten me.” Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands; your walls are ever before me.”–Isaiah 49:14-16

It was January, 2011, and my first resolution was to discipline myself to make time alone. My Danica had been through two major brain surgeries and a fusion that kept her in a body brace and a wheelchair. Our journey began in May, 2009, when her little eighteen month old neck went crooked. Every moment of my life became about finding her diagnosis, taking her to therapy, seeking treatment, scheduling surgery, fighting for resources, keeping her safe and soothing her pain. I was with her twenty-four hours a day, seven days a week.

I have always been one of those people who needs regular periods of being alone to be okay. The constant input of my children, my husband, friends, family, the internet, TV, social media and my blog swirl together and muffle the cry of my soul to be still and know God. The hairs on the back of my neck stand up when I hear the catch phrases about putting myself on the list and taking care of me first so I’m there for others. This all seems to point to selfishness of some kind, and I’m pretty steeped in the martyr life by this point. While working through Adele Calhoun’s Spiritual Disciplines Handbook I have come to realize the desire of my heart to retreat and be near God is not rooted in selfishness at all. It is a necessary spiritual exercise to strengthen my faith and remind me who I am in Christ. I am not just a wife, a mother, a daughter, a sister, a friend . . . I am a child of God.

Adele writes in her chapter on Solitude,

Solitude opens a space where we can bring our empty and compulsive selves to God. And no matter how well we ‘do’ silence, God is there to accept, receive, and love us. In solitude we see how little we embrace our true identity in Christ. And we find the truth of who we are in Christ. We are the beloved, and God is pleased with us. This identity is given; it is not earned. Many other voices pull at us, seeking to own and name us, but in solitude we learn what it is to distinguish between the voice of God and the voices of the world.

My identity was slowly stripped away from me in new ways when I became even more ill than my girl. I couldn’t work in gainful employment. I couldn’t care for my children without help. I couldn’t be a true helpmate to my husband. I couldn’t participate in corporate worship. I couldn’t be a good sister or daughter or friend. When I woke up from my first brain surgery and fusion without the vice grip on the back of my neck one of my first thoughts was, “Who am I going to be if God chooses to remove this thorn in the flesh for good?” The answer is simple. I am a child of God. This identity never changed because of my ability to perform any duties. I am His beloved. There is no guilt here. There is no shame. I don’t have to produce anything or be recognized by anyone else. My name is written on His hands!

I left my family last Saturday. I checked into a local hotel for forty-eight hours. No one besides my husband and girls knew I was there. No one needed me. The world was moving on without my thought or action. I didn’t turn the TV on. I didn’t listen to music. I was very still. I inhaled and exhaled prayer like air. This is one of many times since New Year’s 2011 I have packed my bags and gone away to be alone with God.

In practicing personal retreat I am reminded I am “Preapproved.” I realize how much God delights in my drawing near to Him. The verses above are my dad’s “go to” verses when he visits the sick and people headed into surgery. Dan and I joke he needs to find some new material for repeat customers like us who seem to find someone in our family on a stretcher in a hospital several times a year. The truth is I find great comfort in these words. God paints a picture we can all understand and relate to. Tonight I kissed my fingers and touched the picture of my girls and I. Beside it is the sweetest picture my Danica Jean drew of her and I. I was thinking about how impossible it would be for me to ever forget my children. I breathe them no matter what else I am doing. This is how God feels about me but perfectly. I ran to get a Sharpie and wrote my name on my hand. No matter what I do it’s there. He never forgets me. Not just my name but my likeness. I am never off His mind or away from His sight or out of His care.

I trace the scars in the hands of my Savior and see my name embedded there.

Mar 12
2015

Taking up My Cross in the Valley of Vision

by Monica

When I was young I was completely infatuated with my dad’s library of Banner of Truth books. One of my favorite books he owned was The Valley of Vision: A Collection of Puritan Prayers and Devotions. He has a beautiful leather bound copy now, and I own his tattered and worn copy published November 1, 1975, the month and year of my birth. The top, bottom and side pages are stamped with his name in elegant script. All his books were marked in this way. The Valley of Vision was my first introduction to prayer as poetry which has become a very important part of my spiritual walk. I now have an entire shelf of books that are written prayers. Many of my personal journal entries and very old blog posts end with my own heart cries. Even during the years I spent far from God I kept this book with me. Imagine the prodigal daughter moving from place to place with whatever I could fit in my powder blue, two door, 1992 Chevy Cavalier with dancing bears on the back windshield and a pack of Camels in the center console. In a milk crate of books on the passenger side, in between Sylvia Plath’s The Bell Jar and Elizabeth Wurtzel’s Prozac Nation, was this touchstone of faith. After the Bible it is the single most influential book in my life.

On Ash Wednesday I began my Lenten journey by reading the prayer titled “The Grace of the Cross” from page 172. I copied it and put it in my Bible to pray through daily during these 40 days. Monday I didn’t look at it at all as I forced my way through the motions of devotions and prayer. Yesterday I didn’t even open my Bible. This morning, after my family left for work and school, I sat here in my nest chair with my coffee and reached for the photocopy sticking out of my Bible. I only had words of lament in my mind and heart, but I knew it was time for this prayer:

O MY SAVIOUR,

I thank thee from the depths of my being
for thy wondrous grace and love
in bearing my sin in thine own body on the tree.
May thy cross be to me
as the tree that sweetens my bitter Marahs,
as the rod that blossoms with life and beauty,
as the brazen serpent that calls forth
the look of faith.
By thy cross crucify my every sin;
Use it to increase my intimacy with thyself;
Make it the ground of all my comfort,
the liveliness of all my duties,
the sum of all thy gospel promises,
the comfort of all my afflictions,
the vigour of my love, thankfulness, graces,
the very essence of my religion;
And by it give me that rest without rest,
the rest of ceaseless praise.

O MY LORD AND SAVIOUR,

Thou hast also appointed a cross for me
to take up and carry,
a cross before thou givest me a crown.
Thou hast appointed it to be my portion,
but self-love hates it,
carnal reason is unreconciled to it;
without the grace of patience I cannot bear it,
walk with it, profit by it.
O blessed cross, what mercies dost thou bring with thee!
Thou art only esteemed hateful by my rebel will,
heavy because I shirk thy load.
Teach me, gracious Lord and Saviour,
that with my cross thou sendest promised grace
so that I may bear it patiently,
that my cross is thy yoke which is easy,
and thy burden which is light.

The past two days I have been buried in the self love and the carnal reason. I have turned my mind and heart away from the Grace that brings the patience to bear this pain, walk this pain and even profit from this pain again. Knowing what He suffered for me how can I shirk this load?

Today I am taking up my cross, my appointed portion in this life, and carrying it through His amazing love and sacrifice for me. This is easy. This is light. This is GRACE. This is the essence of my “religion.”

May I rest in ceaseless praise for the minutes, the hours, the days and even weeks God gave me a higher view, a healing view, a hopeful view of where I’d been living.

May I rest in ceaseless praise for this return to the “Valley of Vision.”

(If you’ve never heard Sovereign Grace’s album of songs taken from this book you must find time to download it and add it to your playlists. This is the beautiful song taken from the title prayer. It is on repeat today.)

Photography by Cindee Snider Re. Used with permission.

Mar 11
2015

Broken in Aspen. Again

by Monica

One hundred thirty-nine days since my last surgery.

Seventy-two days since my last plasmapheresis treatment.

Just like that. It happens. I fall in love with life again. I make plans. I start to reclaim lost pieces of being the wife and mother I want to be. I slowly fill my calendar with seeing friends and family. I make appointments for normal things I’ve neglected like taking Twix to the vet and getting the girls and I to the dentist. I reschedule overdue things I’ve cancelled again and again like my bone scan and mammogram. I push off appointments that might throw gasoline on even an ember of the need for more medical intervention. I move my Dr. Henderson appointment to check fusion to the end of April. I call Danica’s orthopedic surgeon and get permission to move her big scan and evaluation from this month until October which will be her five year mark. I book a beach house for the last week of May, because we haven’t been since 2009, and it matters more than just about anything to our family. I buy summer concert tickets on the lawn at Blossom for Dan and I. I book a hotel and make plans with my girlfriends to go to The Country Living Fair in September.

Two years ago I made a list of 40 things I wanted to do before I turn 40 in November.

This is the year. I’m sure of it.

I’ve been waiting for today. The temperatures are rising. The snow is melting enough I can see patches of earth. The sun is shining. I made it through a brutal winter without a shunt revision. I’ve had the most days out of bed and without a headache. I’ve allowed myself to dream. I have fourteen chapters of the book written. I’ve let little inklings of what God might have me do after “Gauntlet” sneak out to people I trust with my hopes. I’ve let my girls and my husband hear me talking about possibilities again.

This is definitely the year.

Without warning something snaps.

I should be used to it by now. The surgery or treatment that eases some kind of pain or symptoms lulls me into thinking maybe this will be the one that changes my body for good. Everything I know about Ehlers-Danlos and all the other conditions it drags along with it flies in the face of this ludicrous optimism. Still, without it I would have given up long ago.

When the popping and neck pain began in Tucson I explained it away as plane rides, hotel pillows and the strain of showering, shaving my legs and styling my hair every day. I returned to insanely cold weather and pressure systems. It was crushing me, but some kind of high from our vacation kept nudging me out of bed and moving forward. My inner voice told me to lay off the treadmill, let someone else clean my house and have Dan carry the groceries. I naively thought if I didn’t do anything stupid I would get through this.

It’s not just my spine slipping. It’s everything all at once. My mast cell reactions are getting closer together and more severe. I went to a friend’s birthday party Friday night and the candles made me so ill I spent all Saturday in the bathroom like I had the stomach flu. My cardiac symptoms and POTS, so controlled in Arizona I actually had days I did not take my medications, are flared again. When I stand up I get dizzy and feel my blood pressure drop and my feet turn dark purple. My heart literally hurts. My joints are screaming and the pulling between my shoulder blades is like the craziest tug of war burn. My headaches are from all over. The ones from my neck and base of my skull buzz all the way to the top of my head. The pressure is like someone is blowing into a balloon that will explode with one more puff. My hearing goes out if I move my head to the right or left or bend over. I am twitching again. It’s like little electrical impulses randomly shocking me. It is all a vicious cycle.

I’ve been faking it some. I’ve been hinting to those closest to me something is definitely wrong, but the tan is a little deceiving, and I love people who have invested so much in my fight to be more well actually thinking I really am more well. I have been driving even though it hurts me more than almost anything else. I also spent almost twenty-four hours this past weekend on my laptop working on the book. I was sick, and I could not sleep so I kept working. The emotions I uncovered during the chapters I wrote were overwhelming. When I returned home Monday I broke down. I told Dan the truth. I cried. I raged. When it was all said and done Dan rolled over into the fetal position, and I tried to pray.

Last night Dan came home, and I was already in bed. By eight o’clock he was beside me. I pitched another fit. I cried. I raged. Dan reached out his hand to hold my snotty one. We prayed. “God, please, just make it stop. We know You could make this stop.”

Today I cancelled my counseling appointment so I wouldn’t have to drive. I stayed off the computer except to go back and read the chapters I wrote over the weekend. I took Valium for my spasms. (I refuse to take a pain pill, because that is one step down a road I can’t admit we are on yet.) I prayed in fits and starts. How could I have so much faith and so much hope through so many years of suffering and then dig my heels in at this new development?

I’m not speaking much truth tonight.
I’m in stage one.
I’m sad.
I’m mad.
I’m desperate.

I put on my Aspen collar this morning to try and stabilize my neck.
I passed myself in the mirror, and it took my breath away.
I am broken.
Again.