One word | Search Results | Monica Kaye Snyder

Apr 14
2015

Who Do You Think You Are?

by Monica

It’s late.
My family is asleep, and I am awake.
Nights are the longest.
Nights are the hardest.
There is no one left to convince I am okay.
There is no one waiting for me to say the right and true thing.
There is no one needing me to shine a light on their own version of this difficult life.
I am alone.

I began a new round of plasmapheresis treatments last Tuesday. After Monday’s brutal attempts to get IV access before my catheter placement I was already beaten up. A large hematoma began to form where the doctor, through ultrasound, finally found a vein in the upper part of my right arm. This along with the pain and invasive nature of the plastic tube stuck from my jugular into my heart’s main artery had shaken me. I felt like the first three treatments went as well as expected. I had the usual exhaustion, headaches and nausea, and by Easter Sunday I was wiped out. I knew something wasn’t right beyond the treatment side effects. Dan took the girls to church and to my parent’s for dinner and egg hunting. I stayed in bed. My headache was gaining momentum. When I woke Monday morning I knew I was in trouble. I couldn’t lift my head off the pillow.

Dan drove to the emergency room Monday evening at 5:30 pm.
He dropped me off at the door in the pouring rain.
I was alone.

It seems strange every time I tell it like this, but it is not for us. Dan makes sure the kids are okay. I take care of myself. Something about my demeanor made the ER staff take me back quickly even though many were waiting. The pain was so severe I couldn’t lift my head from my hands. My right eye was twitching. Stinging tears were running down my face. I keep a typed medical history with me and a list of current medication. If I’m too sick to tell my story I hope they can piece it together somehow. If nothing else the long list of operations and insane list of pharmaceuticals give me some credibility. In emergency rooms this is gold. It’s been almost a year since I resorted to going there. I hate the process and the place that much. I will only go if my pain is a 10.5 on a scale from 1-10. I live at a 4 or 5. Every single day I hurt. This was so much worse. This was scary worse.

As I laid on the hard stretcher with no pillow, I waited and tried to pray, but mostly I listened to the stories happening around me. In the holding bay next to me a woman was wailing. She wasn’t in physical pain. She wanted to die. The security guard and nurse kept probing about how many pills she had taken and whether she had any alcohol with them. Did she hear voices? Was she on her way to the crisis center? She was in tortuous pain of a completely different kind. My heart was breaking. I had been that woman before. I could hear the complete loss of identity in her voice. They kept asking the same questions. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

The doctor decided I needed a lumbar puncture to test my cerebral spinal fluid, CSF, for meningitis. After two attempts to take blood and two IV tries I became filled with anxiety. I had been given 1mg of Dilaudid for pain. If you know anything about me or how EDS affects my body’s processing of medication you know this amount of medicine is nearly placebo. I asked for Toradol. I explained this non narcotic worked the best with this kind of headache. They seemed thrown by someone not wanting to get doped up in the ER. They did not want to give me anything with blood thinning properties before an LP. Because I had this small dose of meds they asked I call someone to drive over in the middle of the night and sign a consent. This has never happened before in my long medical life. My dear parents, just back from Spain and tired to the core, answered my call and came quickly to sign the paper. I was taken down to the empty radiology floor and put face down on the freezing cold table. The same doctor who placed my cath was called out of bed to do my LP. It had to be under fluoroscopy because of the unstable nature of my spine and the brain shunt tubing there. A long needle was placed deep into my back and pulled tubes of fluid from my spine. I couldn’t stop my tears. “How long, oh God?”

Around 2 am I was taken up to the fourth floor to be admitted. I was utterly exhausted and had no real relief from my head pain. Now I was now suffering from all the needles in my arms and back. Then the process began again. My new nurse came into my room, flipped on the overhead lights and asked me the same litany of questions I just answered hours before. I kept thinking of the woman downstairs. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

One of the overwhelming feelings I get every time I’m admitted is the helplessness and bizarre anonymity that comes with stripping off all your clothes and jewelry and anything that identifies you to put on a hospital gown. You are now just a chart on a computer screen, a case to be discussed, a room whose call bell they hope won’t be rung too often. Even with the best nurses and doctors there is a very real sense of no one knowing you. The longer you are there the feeling of being institutionalized grows. Your legs get hairy. Your hair gets greasy. Your hospital issue footies get filthy as you get out of bed over and over again to unplug your IV pump and drag it into the bathroom to pee which you have to do at least every hour because of the bags of fluid they are giving you. For me this is all compounded by the frustration of being stuck over and over again because my veins are so weak and damaged they will barely give labs and my IVs will hold for only hours. I questioned why they couldn’t use this beautiful access in my chest for blood draws and meds and fluids. Oh no, that port belongs to dialysis. We cannot touch it. Okay, but it is my port, and you are repeatedly hurting me. At this point my arms looked like I was the worst skilled IV drug user ever. They were covered in tracks and bruises. A new IV team finally found a vein in the top of my shoulder that was a virgin and held. I asked for Tylenol. We can give you more Dilaudid they said. It took four hours to get an order for Tylenol from the doctor and the pharmacy to send some to me.

By Tuesday morning I wasn’t any better, but I began to feel frantic and caged. At least once every hour I fantasized about ripping my IV out and escaping. Why in the world did I come here where no one knows who I am? I’m Monica Kaye. I am the wife of a prince. I am a mother to two beautiful daughters. I am chronically ill but refuse to quit fighting. I believe in Jesus, and He is the only reason my Hope remains. I wished I could wear a sign or hand them a copy of Gauntlet With a Gift to tell them my story. I wanted them to know this snapshot of a sick woman getting treatmeant for some weird autoimmune disorder called PANDAS who came in with an unbearable headache didn’t explain me at all. This list of weird disorders called Chiari, Ehlers Danlos Syndrome, Dysautonomia, Mast Cell Activation Disorder and more were not ME.

After being “released” on Thursday I came home to sleep until my final pheresis treatment on Friday. Over the weekend I slowly began to steep myself back in truth. I kept thinking about the woman behind the curtain in the ER. I continued to think about my own identity in all this brokenness. Sunday morning I opened Paul David Tripp’s New Morning Mercies: A Daily Gospel Devotional to find this message in answer to my heartache.

Who in the world do you think you are? I’m serious. Who do you think you are? You and I are always assigning to ourselves some kind of identity. And the things that you and I do are shaped by the identity we have given ourselves. So it’s important to acknowledge God has not just forgiven you (and that is a wonderful thing), but he has also given you a brand-new identity. If you’re God’s child, you are now a son or daughter of the King of kings and the Lord of lords. You are in the family of the Savior, who is your friend and brother, You are the temple where the Spirit of God now lives. Yes, it really is true–you’ve been given a radically new identity.

The problem, sadly, is that many of us live in a constant, or at least a rather regular, state of “identity amnesia.” We forget who we are, and when we do, we begin to give way to doubt, fear and timidity. Identity amnesia makes you feel poor when in fact you are rich. It makes you feel foolish when in fact you are in a personal relationship with the One who is wisdom. It makes you feel unable when in fact you have been blessed with strength. It makes you feel alone when in fact, since the Spirit lives inside of you, it is impossible for you to be alone. . .

So if you’re his child, ward off the fear that knocks on your door by remembering who God is and who you’ve become as his chosen child. And don’t just celebrate his grace; let it reshape the way you live today and the tomorrows that follow.

Our family photographer just sent me the files from an anniversary photo shoot of Dan and I from February 2011. The above picture of me is from that day. Danica was still in her Minerva brace and wheelchair. I had come through my hysterectomy in August, 2010 knowing I needed a bowel resection, but I was literally breathing the 24/7 care my Danica needed not realizing how each day was breaking me just a little bit more in every possible way. Since this photo I have had ten of my nineteen surgeries. My body resembles almost nothing I see there. I barely remember who that beautiful woman was, but I know who I am today.

I am more than flesh and bone.
I am a daughter of the King of Kings.
The Spirit of the living God resides in me.
I am not alone.
I will never be alone.

(I am done with my treatments and had my levels tested yesterday. I am waiting to hear if they are low enough to have my catheter removed. I will begin the chemo drug for six months to suppress the antibodies from returning in hopes this invasive treatment can be slowed or avoided altogether. Please pray for my body to respond well to the new drug and for it to work as anticipated without toxicity or drastic side effects. Please be in prayer for a trip to Maryland on April 29th. I will fly alone (there’s that word again) and have a tough day of a flexion and extension MRI and then late appointment with my neurosurgeon. I will stay the night and fly home the next day. Like always the financial aspects of my out of network treatments here and these trips burden us. The emotional and physical toll are an even greater weight. My instability from C4-6 or 7 is causing a great deal of pain. I am wearing my collar more and more and praying the removal of inflammation from the pheresis will help with my symptoms. Thank you to each one of you who has been praying for my family and I, making meals, sending letters and cards, and especially those who mailed care packages to the girls during their spring break with a sick mama in bed. You are God’s hands to us. Bless you. Our Hope remains!)

What in your life causes you to lose sight of your identity? What sign would you wear so others would really see you and know you? When you begin to feel alone what Scriptures or songs bring you back to the truth of who you are in Jesus Christ?

Photo by Grace Designs Photography

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 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 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 3
2015

Drain it. Kingdom Giving. Kingdom Living

by Monica

I do not believe one can settle how much we ought to give [to others and to charity]. I am afraid the only safe rule is to give more than we can spare. In other words, if our expenditures on comforts, luxuries, amusements, etc., is up to the standard common among those with the same income as our own, we are probably giving away too little. If our charities do not at all pinch or hamper us, I should say they are too small. There ought to be things we should like to do and cannot do because our charities expenditure excludes them.–C.S. Lewis

It’s a recurring theme over the past few years and telling the specific stories never gets any easier. No matter how many times I try I can’t seem to write about them eloquently. I want to tell them again and again, because they all point to God and His faithfulness. The acts of “charity” to our family have given us the very manna to stay alive and move forward each day. I want to show my gratitude without using the same overused words. I want to give God ALL the glory, and in my weakness I don’t really know how to shine all this on Him.

This is one of my favorite stories of generosity and provision.

The week before we headed to Maryland for my first brain surgery and fusion we had scraped together enough for a fifth of the down payment my surgeon was asking for through my parents and several other gifts. We had several hundred dollars in our checking account for gas and food while we were gone. I had this crazy peace God was going to come through for us. The week wore on, and I began to pack my bags and get a little nervous. I knew our support system was worn thin from the past couple of years and a woman who always had a headache and could barely walk but looked fine for all intents and purposes was not the most engaging fundraising idea especially compared to Danica’s adorable face.

I was in bed in my oh so dark bedroom curled up in a ball with the weight of the world crushing my brain, head and neck. I wondered if I would even make it to my surgery date. This sounds dramatic unless you really understand how dangerous my situation was. My dad opened the door at the top of the stairs and threw down a letter. It was from a girl who lives in Virginia who I used to work with. I had only met her twice because I telecommuted states away. Over the past months she had begun to faithfully pray for me and encourage me through facebook and email. I opened the card and a check folded in half fell out. I read the note first. She wrote how she couldn’t sleep because she was praying about a way her family could help us. She said in the night she heard God tell her clearly to “DRAIN IT.” She obeyed. I looked at the check. It was a strange number. I found out later it was every penny this family had in their checking account. It was just shy of what we needed to pay the entire deposit. I was shaking. How in the world could someone give like this? This family was not wealthy. This friend works from home with two small children just to make ends meet. I immediately knew God was completely behind my surgery. He had funded it through the most unlikely of places.

It took me awhile before I could finally find a few words to call this friend. I was even more blessed by her back story to the giving. She shared her own fear of not having enough and God’s work in her life to put her treasure where she says her heart belongs. She talked about how she had telephoned her husband the morning after her prayer, and he too had to commit this huge gift to the Lord before the check she had already written could go in the mail. (Ladies, can you imagine calling your husband and telling him God told you in the night to empty your checking account?) She told me how over the last two quarters they had paid all their credit card debt off by careful spending and holding back some tithe. When the card balances were at zero they didn’t up their tithe. She later realized what they sent us was almost exactly the amount they had kept back. God already had this provision planned long before either of us knew we would be part of it.

God says in 2 Corinthians 9:6-7, “Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver.”

I’ve had nine surgeries since that extravagant gift in 2011. God has always provided just enough through the kindness and generosity of many who have come along side us in this journey.

I will never look at tithing the same way again.
This is Kingdom giving.
This is Kingdom living.
Soli Deo gloria.

Photography by Cindee Snider Re. Used with permission.

Mar 3
2015

If . . . then I know nothing. Calvary Love. And two more weeks of a giveaway

by Monica

If I ask to be delivered from trial rather than for deliverance out of it, to the praise of His glory; if I forget that the way of the Cross leads to the Cross and not to a bank of flowers; if I regulate my life on these lines, or even unconsciously my thinking, so that I am surprised when the way is rough, and think it strange, though the word is, ‘THINK IT NOT STRANGE . . . COUNT IT ALL JOY,’ then I know nothing of Calvary love.

I am returning to posting If questions from Amy Carmichael’s powerful little book by the same name. I invite to you follow along this journey. I pray you will be drawn to Calvary love.

I am giving away a copy of this book the next two Sundays along with a little olive wood cross donated by my friend Cindee Re. To enter please share one of the daily If posts on social media (Facebook, Twitter or Instagram) with the tags #CalvaryLove and #If. Add a comment here on the blog post you share. Martha Hutcheson and Gina Weeks are the winners from week one and two.

Let’s meet at the foot of the cross together.

Mar 1
2015

What Can I Bring to Your Fire?

by Monica

This blog post was originally published on August 18th, 2013. Friday was Janet’s birthday. I can barely remember what the landscape of my life looked like before knowing and being known by her. I celebrate her every day.

I have seen them in cities, and in my own neighborhood,
nor could I touch them with the magic that they crave
to be unbroken. Then, I myself, lonely,
said hello to good fortune. Someone
came along and lingered and little by little
became everything that makes the difference.
Oh, I wish such good luck
to everyone. How beautiful it is to be unbroken. –Mary Oliver

It’s a quiet morning here because Dan has taken the girls to church. I woke up locked in my room. My neck doesn’t move at first when my eyes open. I remember I had surgery, and I need to heal today. This is what Sunday looks like for me. Healing is my one job. I call out to have Dan bring me coffee. Normally I would go out to my nest chair and drink it while everyone else comes to life around me. Twix will crawl into my lap for snuggles and then Danica takes a turn. Today I can’t seem to move. I call Dan again to please come and get out certain pills for me to take that may raise my cortisol level, help with pain and also loosen up my poor neck. He seems annoyed. He doesn’t ask me how I slept, although I ask him, and he doesn’t ask me if I need something to eat or nibble on before I swallow six super strong pills on an empty stomach. It doesn’t even cross his mind. I don’t ask. Since I’ve been home it is much like other surgeries. I am put into my room with the door shut. I think my family looks at it as doing me a favor. The kids jiggle the bed which hurts my neck. They are loud and silly. Mostly because of the pain and meds too much input sets me off. Still, I have missed them incredibly and being alone hurts in the worst way. As they all leave for church the attitude is negative. I asked Delaney to read me Psalm 37 out loud. It’s one of my favorites. All I can feel is this rope of bad energy tightening around me. The house is a mess. As soon as they leave I cry for ten minutes straight. You know the kind of sobbing where you are just gross snot pillow soaked blotchy face and chest heaving crying? I am given a week in Maryland and that is it. I have to be better. Tomorrow Dan will go to work. I will be here alone with my girls. Delaney starts school Tuesday. Wednesday Danica has kindergarten preview and Thursday they will both be back full time. In between here I am supposed to just be mom. I’m supposed to lift up this neck and do all the things people say are stupid and careless to do following this surgery but there is no one else to do them. I am not supposed to move my neck in flexion or extension for a month. In other words, hold very still. Aside from the surgery where I went away to heal at the lake house this is how it has been. My family can barely scrape together enough time off and energy to do the mom is in the hospital thing. When my ride dropped me off yesterday my dad was waiting with his keys to leave. I asked him to please wait until Dan got home. I haven’t heard from my mom at all. I just can’t be alone yet. Dan does not function without me. He is angry at this situation. I get this. It’s maddening. But I wonder if anyone is thinking about what it must feel like to be in this body and mind and soul. Do you know what incredible shame I feel to be causing all this over and over again? He cannot come and sit with me and talk to me about how I am feeling. Even in the hospital he sat there the entire day after my surgery saying nothing. I felt so insanely alone and guilty and wanting to just let him off the hook for all of this. I always want to say to him, “You can run. It’s okay. I would totally understand.” This surgery is huge. It’s a big deal. For me, even more than the physical, it’s a mental and spiritual choice I made to try to be better. I did this only four weeks after a major abdominal and pelvic surgery. I made this choice because my husband has been given an opportunity to perhaps take on a larger role at work, my girls start school this week and last year I was completely bedridden when school began with another surgery and then another and it hurt Danica’s adjustment greatly, and my mom is completely unavailable in every way this time of year. Her family is the 600+ students entering those doors Tuesday and my dad is preparing to go to China and India for a month and good grief, how much longer can things keep being about me?

Why after all these years of blogging am I saying these things now?

Because something changed me.

Ninety nine out of one hundred of you may feel like this comes across as ungrateful, but if you know me you understand my spirit is only full to overflowing for every ounce of love and support from every corner of the universe, especially the sacrifices my parents have made. Still, what was given to me this time was something I have needed since I was a child. There has been a deep longing for a mother to care for me. Someone to just focus on me and build relationship. I have needed it so badly it is actually part of my sickness. I know this.

There she was.

An angel.

A woman I didn’t know personally until two weeks ago made this crazy offer. I didn’t really even think she was serious at first. She offered to come after my surgery and get me since Dan needed so desperately to work. Everyone who heard of this felt it was very strange. She bravely drove with her own physical limitations from Ohio to Maryland. She fed me. She took me on a hilarious trip around the beltway for prescriptions. She rubbed my neck and shoulders. I don’t think anyone had offered to touch me like that in months. Did you know you need human touch to be okay? I have been like an orphan tied to a crib. Failure to thrive. I need to be touched. She listened to me. I listened to her. Her daughter is sick with the same conditions I have. I think perhaps the windows into one another’s roles in all this was one of the greatest gifts. We talked for hours and hours and only scratched the surface of what our souls could share. I would fall asleep mid sentence and then wake and begin where we left off. She would quietly slip off as if knowing I needed space and then appear just when I was needing her. Gift. Gift. Gift. When everything else falls away WE are gift.

Before Danica’s major surgery in Cincinnati I wrote this post with a link to a song by Christa Wells that is truly my life song. I am amazed when one of the “thousand things” shows up. Christa’s new CD “Feed Your Soul” was released on Tuesday, the day after my surgery. I downloaded all the songs first thing that morning, and they played over and over in my alone time in the hospital. The song Come Close Now describes what Janet did for me.

God, every single step of this arduous journey You have given me Dayenu. It would have been enough. This present of knowing and being known makes me healed in places I thought would be broken until heaven. Even in my sadness today I understand I can only meet people where they are in their own journey. All the rest You will care for perfectly as I burn. Thank you for giving me someone to walk into my fire and just feel the heat of all this without shrinking back.

Do you know someone who is sitting in the burn today? Go close. Sing. Hold them. Be there in the fire. It will make all the difference.

Searching for "One word"