I met this week’s Gauntlet story writer in the waiting room of our neurosurgeon in Chevy Chase, Maryland. She was strikingly beautiful. She and her husband were waiting for a post operative appointment. I remember their humor and obvious love for one another. I remember the Brooks Brothers bag they carried with a gift for our dear Dr. H who is never without his navy blazer and beautiful silk ties. After our short meeting Sarah and I connected online. We’ve mailed pen and paper notes and small gifts across the pond. We’ve encouraged one another in the ups and downs of this maddening battle between our minds and hearts and all we want to do and be and the limitations of our broken bodies. Sarah is a shining example of the special sorority of suffering that has formed through the years in both our lives. Would I take all this back and not know her? Never.

United We Stand Taller and Braver
By Sarah Fatherly

I ponder my personal gauntlet with chronic illness and the devastating effects this has brought to my quality of life, and the waters are muddied.

One gift stands out.

People.

As humans we are not made to be solitary creatures, but when struck with illness, particularly chronic and rare, we suddenly find ourselves plucked like fish out of water or a flower out of soil feeling lonely and isolated. If we are lucky enough to having a loving and supportive family our pain is eased somewhat. But what happens when the kids go to school, spouses go to work and the time we spend with them is fraught with obstacles and guilt? At this point we have often lost contact with friends as we struggle to keep up with the demands of socializing with any regularity. I spent five years of agonizing isolation and acute loneliness resulting in a depressed and morbid state. When I did feel up to activities with others I never felt like me. Who I used to be and who I wanted to be had slowly been chipped away. We see who we are through the eyes of others and without their reflective gaze we find ourselves in a crisis of identity. It wasn’t until more recently that I found myself on a new voyage of self discovery and ultimately a road back to myself.

Needing neurosurgery is never an enticing prospect. Needing to travel across the Atlantic away from family for an extended period even less so. This was my reality in 2014. It goes without saying that all the doctors, nurses and my surgeon were a great gift, but it is the unsung heroes in my journey who were shining treasure.

Melanie was my first gift. Before I even got to Maryland for surgery she was the person who cared for my most basic needs on a daily basis. I could share my darkest fears about what lay ahead and with her, and I could weep without shame or guilt. Her present to me was laughter, and we laughed a lot. With her help I could cope much better with all the anxiety I felt.

As I blogged about my experiences with EDS, Chiari, CCI and tethered cord, so many people (too many to name) sent messages of love and support which held me high when I was low. On the tide of their words I was carried along. In the surgeon’s waiting room someone recognized my English accent and shouted out support. There was a mother at the hospital whose daughter had just come out of surgery who wished me well. There were three wonderful girls who delivered chocolate mousse to my husband and I while I was enduring a particularly painful recovery. The hotel staff made us feel truly at home for the six weeks we stayed there. These are all gems mined from my painful journey. I have also had the privilege of making some fantastic friends who have ‘virtually’ held my hand and given me strength and determination on a daily basis.

One thing I have learned over the years is enduring the same health issues doesn’t automatically make people compatible as friends. However, if you are lucky, you can find people who not only reflect and understand your burdens but who also reflect the very essence of what makes you an individual. I have been this fortunate with my dearest friend, Lydia, who has given me the greatest gift of true friendship for no other reason than ourselves. I would never have met her had it not been through our shared medical conditions, and she has made it easier to navigate the murky waters of my gauntlet.

With our suffering comes strength.

United we stand taller and braver.

About Sarah:

Sarah lives in the UK with her husband, Will, children, Noah and Nell, and her beloved Jack Russel Terriers, Duchess and Moo. She was diagnosed with EDS, autonomic dysfunction and chronic pain at the age of twenty-seven. She is now thirty-five. She has recovered from multiple neurosurgeries for CCI, Chiari and tethered spinal cord. She is living a better and more hopeful life. She is re-becoming a mother, wife and individual.

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.

I was introduced to this week’s Gauntlet Story Feast writer, Rachel, through Sam Re’s story published two weeks ago. Rachel’s book, The Reality of Chronic Illness is an achingly beautiful account about what it’s like to live in these broken bodies.

I’m Not Sorry
By Rachel Allison

I’ve been sick for three and a half years now. I’ve been through a lot. I’ve endured harder times than I knew were possible. And I’m not out of the woods yet. We believe my worst is behind me, but I’m still chronically ill and the road to recovery is long.

This journey has been emotional and spiritual as much as physical. Perhaps even more so. I’ve come so far from where I started and God has used this illness to grow my heart and faith in amazing ways. I still have scars, I still cry, I still have days where I wish it were over, and I still struggle. But the way that I trust God now is so much greater; the peace that I have is beyond words. The blessings have been just as overwhelming as the pain ever was.

Lately I’ve begun using this journey to bring understanding for those also fighting chronic illness. I’m sharing photos of the reality of my life to shed light on the real, raw facts of what it looks like to live with chronic illness day in and day out. The response has been astounding and I am beyond blessed, but also torn by some responses. The love, support, and sympathy of others means so much to me and I am in no way ungrateful, but I’m continually met with the response, “I feel so bad for you. I’m so sorry.” And that pains me.

I don’t want you to feel sorry for me. I don’t feel sorry for myself. I’m not sorry that I’ve endured this. There’s a fine line here that I need you to understand. Your compassion, understanding, patience, and sympathy means so much to me, whether I know you or not. I want people to understand what I’m going through. It’s hard when people don’t. And I understand that when people hurt it’s only human to hurt for them and with them. I’m not asking that you don’t sympathize with me on the rough days, but please don’t be sorry that this is my life.

My life is so blessed. My heart is so full. I would not trade these past years for the world and I’m not sorry that they’ve happened. I am in a season right now of being astounded by the blessings flowing from my illness. Without this illness I would never love like I do or be loved like I am. Without this illness I couldn’t reach out in such a profound way. Without this illness I wouldn’t know my God like I do. Without this illness I would not have the peace that I do, nor the understanding. Without this illness my faith would be so much weaker, my life so much emptier, and my heart so much darker.

For the longest time I felt cheated of the life I “deserved.” The life everyone else had. The growing up, a driver’s license, a job, moving out, a high school diploma, going to college. To me, that was life. A sign of life. A sort of “rights of passage” to adulthood. I put my identity in my academic standing. I wanted to excel, to be better than average. But chronic illness stepped in and now I’m searching out the easiest ways to complete the required tasks in order to graduate. This isn’t me. I don’t look for the “easy way out.” But the truth is that I’m simply not able to perform in school like I could before chronic illness. In order to get the same grade I did before I have to push myself so much harder than I ever did. And for a while I really struggled until I finally realized that I was putting too much of my identity in that.

Is it wrong to push yourself? No. Is it wrong to strive for excellence? No. It is good character to do your best in all you set your hands to; it’s not only good character, it’s a Christian attitude. And I will finish what I set out to do. I will receive my diploma, but it’s okay if it takes me a little longer or if I don’t do extra credit work or if I have days where school simply isn’t an option. Why? Because I am chronically ill. And that’s my life.

I understand that most people should graduate and go to college, but I’m not most people. I can’t be most people. And I don’t have to say no to those things, I just have to let go of what’s “normal” in that regard. I’ve let go of “normal” and it’s beyond freeing. With God’s help I will graduate and I will go to college, but I don’t have to do it like everyone else does. Most importantly, my identity isn’t found in whether it happens or not.

I want to get better, but I’m at peace with the journey I’m on. This is where God has me and it’s so much richer and more fulfilling than any of my dreams. I haven’t been cheated, I’ve been blessed. I’ve had to lose what I considered to be life to find out what life really is. Because health, momentary happiness, academics, and jobs are not life. You can have those things and not know life. I would rather face this every day and have these blessings than be counted successful by the world’s standards and have no peace. The wealth of God’s goodness flowing through my life outshines any achievement I could ever make and it’s guiding me to achieve things I never thought possible.

So please don’t be sorry I’m enduring this. I know you mean well, but in my ears those words sound as if you’re saying, “I’m sorry you’re so blessed. I’m sorry God is so good. I’m sorry you have to be loved by Him.” Instead, love me with a heart that says, “I know this hurts. It’s okay to cry. Let’s hold on to each other and do life together and watch God make beauty from this pain.”

Because I’m not sorry that my life is more beautiful than I ever could have dreamed.

*Since this post was first written on March 28th, 2014 I have continued in my recovery, graduated high school, and published a book documenting my life with chronic illness. You can order The Reality of Chronic Illness here.

About Rachel:

Rachel Allison is a nineteen year old writer and photographer, living with Adrenal Fatigue (Chronic Fatigue Syndrome) and Dysautonomia since November 2010. She’s a lover of details, creativity, truth, understated elegance, words, and cheesy humor. She lives life with a passion for learning and a deep need for the God who created and cares for her. She blogs about life, faith, and photography at rachelallisonartist.com.

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 Rachel Allison. Used with permission.

Once in awhile in our community of heroes there is a family…a child…a story so similar to your own you feel like you are sharing one heart. LeighAnne’s fight for her daughter Addy mirrors my own battle for Danica in so many ways. Addy’s surgeries, her recovery and her personality are so like my brave girl. Their family’s faith in a good God, overwhelming prayer and financial support from people near and far and their hope for the future remind me “Where there is great love, there are always miracles.” –Willa Cather

Addy’s Army
By LeighAnne Busby

Many people have asked me, “What are Chiari, EDS, and Cranio-Cervical Instability?” I give simple as possible medical definitions. I explain they are a cluster of disorders inflicting great suffering on those diagnosed. In the same breath I also share how they have been the gateway to the unfathomable love, grace, and mercy of our Creator. Before diagnosis I didn’t need God this desperately. I didn’t collapse into my Heavenly Father’s arms this completely. I didn’t fall to my knees and worship Him this fully.

When my daughter Addysen was born she seemed as “normal” as my older 4 children. I now know she is anything but ordinary. Not because of her disorders, but because of how she lives her life. Her strength and determination make me believe God prepared her for for what she would be asked to endure for His glory long before He formed her in my womb and gave her breath.

When we received her diagnosis in October, 2013 I nearly fell to the floor. Her presenting symptom was a seizure which prompted an MRI. I was told by her doctor that the Chiari Malformation we saw was not to blame. I knew in my gut this was not true. I stopped living for the next few months in order to pray and research. God guided my every move. I felt completely powerless, and I still do. It was exactly where God wanted me. He needed to move and to be able to guide my husband and I to the right people at just the right time.

We met the first surgeon in February, 2014. He looked at me and said, “You and all your children need to be scanned.” In the next few months, we discovered that EDS was a genetic factor, and I passed it down to Addy and some of my other children. For just a moment I felt utter devastation, but there was no time for a pity party. A dear friend of mine encouraged me to travel to the best expert we could find. I told her there was no way, because we could not afford it. Her response was, “Whether you decide to travel or not, do NOT ever let it be because of finances. God is bigger than that!” It was the best advice I ever got.

One of the greatest blessings through all of this has been watching God use ordinary people in extraordinary ways. A month before Addy’s first symptom appeared we left our church family due to a painful chain of events. We settled into a new church a couple of months later, but we had no intention of really sharing our struggle. We now realize He placed us right where we needed to be so we could be ministered to in a way that we had never seen before! I don’t even remember ever fully explaining to anyone all we were facing, but God revealed it somehow. Before long Addy had an entire army around her. Even our local police chief heard about Addy’s situation and led the charge of fundraising for her. The teachers, staff, and parents at the elementary school that my children attend all took the “Polar Plunge” for her in order to raise money. Friends, family and strangers alike rallied around us and have never left our side. In our darkest moments we know the prayers and support of others have been the literal arms of God and carried us. We are forever grateful for God’s provision, and we are hopeful that each and every person who has helped us will receive a blessing that cannot be contained.

Addy has now had three major brain and spinal surgeries within seven months and two of those were done over seven hundred miles away from our home. God is faithful.

He led me to other moms and dads who spent countless hours answering questions before I even knew to ask them. He led us to Dr. Rekate in New York who has become almost a grandfather to my children.

There have been many good and bad moments in this fight. I will start by sharing the worst. Following the second and third surgery Addy was unable to swallow, and she was no longer talking at all. The speech therapist and several doctors came into the room and shared in front of her that she may have lost the ability to swallow on her own and would likely need weeks and weeks of therapy if it was to come back at all. Over the next few hours her whole demeanor changed, and she rapidly went downhill. We were very sure she may not make it through the night. I called a mentor of mine late that night, and I screamed into the phone pleading with her, “Please, please tell me what to do to save my baby!” She told me, “You go in there and talk straight into her soul as only a mother can, and you give her all your strength and the encouragement she needs to keep fighting.” It sounded very strange, but I did it. I wrote the words I spoke to her and shared them with the world later that night. I believed. I had nothing else to hold on to. Late in the morning on the next day Addy smiled at me. It worked! God breathed life into my words that night, and that life went straight into my little girl!

When Addy came off the ventilator, she spoke only a few words. “Hi Mommy!” Then she said pointing up in a circular motion, “They were up there. They said you are gonna be okay. Addy, everything will be okay.” She didn’t speak again for days. She didn’t need to. She said it all. They were there! Best. Moment. By. Far.

Addy is healing, but there is much more to fight. If you are on a similar journey my advice is simply this. You must BELIEVE. Believe there is a purpose for your hardship. Believe God is working on your behalf. We cling to Romans 8:28. “And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Without faith and hope these disorders have the power to destroy you. In God they can be grace and gift.

You can continue to follow Addy’s story here: https://www.facebook.com/AddysArmy?fref=ts

About LeighAnne Busby in her own words:

I am a wife to Nick, a mother to five beautiful children, a friend, teacher, and a student of life. I am incredibly impatient, analytical (sometimes to a fault), and greatly flawed, but I am blessed beyond measure. I was born to a gifted, brilliant and spiritual mother who taught me more in the first seventeen years of my life than most people learn in a lifetime. Sometimes I feel that when she went to be with the Lord she poured all of her knowledge and fight into me. Music is an important part of my life. It has the ability to bring me up or make me broken depending on what I need at the time. My favorite pastime is driving alone in my mommy-mobile minivan and listening to Casting Crowns or other uplifting music (although I am known to listen to a little rap/R&B as well.) I am living my life one moment at a time and try to find God in every second of every day.

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.

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.

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.

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.

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.