Archive of ‘Gauntlet Story Feast’ category

I Hope You Dance. Gauntlet Story Feast

by

MackShoes

There is a small group of us in a much larger community who have walked this road “together” for many years now. We share the same diagnoses, similar timelines, the same neurosurgeon and other specialists and a deep abiding faith in the goodness of God. We believe He is for us in all this suffering. Even on our hardest days we know for sure He is making something beautiful. Mackenzie has been a shining light on my path. She is a glistening trophy of Grace in suffering.

I Hope You Dance
By Mackenzie Spencer

In a few weeks, I will celebrate 6 years from my first surgery, and it is a huge celebration! I had no idea how my life would change after that day. It was the first step in getting my life back. As I walked through my medical journey, my mom and I kept a blog to keep everyone updated. When we decided to start this blog, I did not know it would turn into a record of God’s promises and faithfulness. This has become not only a resource to others, but a reminder of the miracles God has done in my life. I want to share with you some of the blog post I wrote the night before my first surgery, but first I need to share some background information:

At the age of 16, I started having headaches, dizziness, fatigue, memory loss, and a number of neurological symptoms. At first these symptoms were a huge inconvenience for a junior in high school at the top of my class, but they quickly became terrifying when the reality hit that they were not going away. Doctor after doctor told me there was no answer and to stop looking. My symptoms had become tolerable so I went on with my life of dancing 15 hours a week and working towards graduating Valedictorian. Shortly after my senior year began, my symptoms significantly worsened. We added constant wide-spread pain, fainting, absence seizures, and severe arm pain and weakness to the list. Despite these changes, I danced every day.

Four days before my 18th birthday, dancing was no longer an option – I lost the ability to walk. Devastated, we knew that we had to start searching full time for answers. After several more doctors (including one who told my mom I was faking my pain and weakness for attention), we had no answers until we had a divine appointment with a local family who had been through a similar process to find their diagnoses. This family led me to their doctors who diagnosed me with the exact same conditions – Ehlers-Danlos Syndrome, Chiari Malformation, Cranio-Cervical Instability, and Tethered Cord Syndrome.

In a matter of months, I had gone from having no answers to having all of them and scheduling surgery to correct spinal abnormalities. Then the unthinkable happened. Only 12 hours before my surgery, it was canceled with no answers and no hopes of being rescheduled. Devastated does not begin to describe how I felt going home. Over the next several weeks, my health declined exponentially. I could not walk more than a few steps. I could barely eat anything. I could not sleep. I could not remember the order of the alphabet or how to spell my name. This was rock bottom.

My mom persevered and decided it was time to look at other options for surgery. She spoke with my geneticist who had just begun working with a neurosurgeon in the DC area. After reviewing my imaging and test results, he agreed to see me immediately for additional testing. Very reluctantly, I also agreed to see him. At this point, I had no faith in physicians. The only faith I had was in God’s plan for my suffering. I knew this had been a divine appointment once I met this new neurosurgeon. He was one of the very few physicians I saw who listened to everything I said and told me they would do everything they could to help me. After days of testing and conversations, he scheduled the surgery that had been canceled months before – tethered spinal cord release.

This brings me to my blog post the day before surgery. I remember writing this in my room at a very late hour, as I did many blog posts, in a Word document so my mom could proof read it before posting. I had been asked by so many friends and family how I was doing. This was understandable given my physical state and the fact that I had already gotten on a plane to have this surgery done by another physician. My answer was surprising to most – it was peace – all I felt was peace. It was intended to be a quick update to everyone who had been following my story, but as I started writing I realized God had more things for me to say! In reflecting on this post, I noticed how many prayers, written and unwritten, God answered starting with this surgery.

“A family friend came by the other day to pray with my family before we left, and he said something that really stood out to me! The surgeon will be holding the scalpel, but God will be guiding the hands of the surgeon, because He is the ultimate physician! I trust that God will take care of me and that His Will will be done, and not my will or anyone else’s!”

Before my first surgery (and all subsequent surgeries), Dr. Henderson prayed that God would guide his hands so that I could glorify Him. The same words our friend prayed over me was also spoken by the surgeon who God would use to heal my body. Without a doubt, this prayer was answered each time it was prayed.

“Yesterday a friend texted me and said that she was praying Psalm 103 for me. I wasn’t sure what it said, so I looked it up, and I am so glad that I did. It was a great encouragement. I want to share a part of it that really meant a lot to me. ‘Praise the LORD, O my soul, and forget not all his benefits- who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle’s.’“–Psalm 103:2-5

God used this surgery and a subsequent surgery to heal my body tremendously, but we learned over time that the underlying genetic condition would continue to cause degeneration in my spine. As I have watched my health decline and my life slipping away again, I have looked back to the life that God redeemed from the pit. His faithfulness is the only thing that kept me going. I knew that He was not done with me and I would once again be renewed.

In writing the next portion of the blog post, I did not dare write the prayer that I hid very deeply in my heart. While my soul longed for dance, my body told me it was impossible to walk, much less dance again. I knew God was more than capable of returning this to me, but I had completely given dance over to Him. I came to terms with the fact that if this was God’s purpose for my life, I did not have to walk.

“It was 8 months ago today that I lost the ability to dance. I am not going to lie, I was pretty angry about this and I let God know that! I knew God is bigger than my anger and He already knew what I was feeling! I had my life figured out, or so I thought!…I was going to teach dance and share this passion with others as it had been shared with me. I wanted to be able to impact someone’s life the way my amazing dance teacher, and now close friend, impacted mine. I will be forever grateful for the wonderful passion she shared with me. It was not only a passion for dance, but also for God!

It was and still is a daily struggle to wake up and know that I cannot dance. It may seem strange, but I mourn my loss of dance. It was a huge part of my life and my relationship with God. I spent the last 2 summers at school in the dance room. Most kids are so excited for summer so they can be away from school, but not me. I was excited for summer because it meant I could spend countless hours in the dance room. It was not only a place where I could work on my technique, creativity and choreography; it was the place where I felt closest to God! There is a quote by Glade Byron Addams that says, ‘It is of course possible to dance a prayer!’ That statement was definitely true in my life. Some days I would beat prayers into the dance floor for hours.

I miss those days a lot, but I am so thankful for the time that I was able to have that passion for dance. Some days, like today, it is very difficult to be without dance. But I will get through it because I know there is a reason for my struggles. This is my purpose in life. I thought it was to reach others through dance, and maybe I have. But I have another purpose for my life…It is to reach others through my suffering. I had big plans for my life, but God had bigger plans!”

I remember sitting on my bed sobbing as I wrote this, mourning the loss of dance. I was so at peace with God’s plan, yet I had a yearning in my heart and soul to be able to dance one more prayer. I had full faith that God could, but no expectation that He would grant me this desire.

Less than 2 weeks after this surgery, my legs felt different. I was resting in the hotel room I shared with my parents for weeks and slowly noticed it was easier to move my legs. I walked carefully into the bathroom, put my hands on the countertop, and said to God, “I can’t believe I am going to do this, but I trust you.” I slowly lifted my heels off the ground and stood on my toes the same way I did since I was a toddler. In complete disbelief, I took several long steps across the bathroom realizing I could walk normally again. I stepped out of the bathroom and said to my mom, “Don’t tell anyone what I am about to show you because I don’t know how long it is going to last.” I walked back and forth across the room and stood on my toes over and over again. We stared at each other in amazement and continued to test my “new” legs. My leg strength was back and permanently!

For my first surgery, I was wheeled up to the hospital in my hot pink wheelchair. Only 2 weeks later, I walked up a hill and through the hospital for another surgery – Chiari decompression and fusion of my skull to C3. My second surgery resolved my headaches, arm weakness, and neurological symptoms. Four weeks after my first surgery, we invited my dance teacher to our house, so I could show her my renewed strength and tell her I would be starting dance again the following month.

Less than a year after this post, I was able to dance in my senior dance recital and graduate Valedictorian from my high school. Even now reflecting on these events that happened 6 years ago and having told this story countless times, I am awestruck at God’s goodness and faithfulness. He answered prayers that I did not dare speak and granted me the desires of my heart.

I will leave you with the verses included in the end of the blog post. These scriptures carried us through this journey, and I pray that they encourage you wherever you find yourself today.

“Remember Your word to Your servant, for You have given me hope. My comfort in my suffering is this: Your promise preserves my life.”–Psalm 119:49-50

“Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.”–Romans 5:1-5

“I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”–Romans 8:18

“Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed.”–1 Peter 4:12-13

“Cast all your anxiety on Him because He cares for you. Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that your brothers throughout the world are undergoing the same kind of sufferings. And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast. To Him be the power for ever and ever. Amen.”–1 Peter 5:7-11

Grace and Peace to you.

Based on this post: http://mackenziemathis.blogspot.com/2009/06/grace-and-peace-to-you.html

MackenzieGauntlet

About Mackenzie:

Mackenzie Mathis Spencer was diagnosed at the age of 18 with Ehlers-Danlos Syndrome, Chiari Malformation, Cranio-Cervical Instability, and Tethered Cord Syndrome, after searching for a diagnosis for 2 years. After years experiencing the health care industry from the patient side, she decided to devote her career to improving health care and patient experience. Mackenzie is currently working as a health care consultant in the Washington DC area, where she lives with her husband, Nick.

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.

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An Inspiration. A Hero. Broken. Gauntlet Story Feast

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Broken

This week’s Gauntlet Story Feast writer, Sarrah, holds a very special place in my heart. I met her through a local friend who shares an EDS diagnosis and the same neurosurgeon. She attended high school with Sarrah, and they reconnected online while she was in Boston getting her master’s degree. This friend opened her home so Sarrah could have needed surgeries in Maryland and recover here. Sarrah’s bravery to leave her dream job and seek treatment blew me away. Her courage to take her recovery at face value, move by herself to Texas and jump back into her career inspires me even more. This piece shows the achingly honest truth about the brokenness we suffer.

An inspiration. A hero. Broken
By Sarrah Hannon

An inspiration. A hero.

I’ve been called these things many times by family and friends. They have observed the events of my life and the hurdles I’ve overcome. And because all they see is the outward appearance I’ve adopted of humor, self-assurance and smiles, they tell me this is who I am.

My story is not heroic. It is not inspiring. If I am supposed to be an example of how to live when you’re dealt a difficult life you can’t control, I worry for others like me.

“You’re just being modest,” you say. No, I’m just being honest.

What people cannot see is the every single day struggle. I’m not talking about the physical struggle. The physical struggle is impossibly difficult but you develop ways of managing it. And while the pain is unbearable and takes over your life, it is sadly not the most paralyzing obstacle. No, I’m talking about the mental and emotional struggle. The one that you think you have handled at the start of every day until you realize that you’re just lying to yourself. You end up having the same arguments in your head repeatedly, no matter how many times you’ve had them before. And yet each time you come to the same conclusion after arguing both sides of the story; your life has changed, you have changed. That realization feels like a fresh wound every single time.

Just a few years ago I would wake up each morning the minute my alarm sounded. I would bounce out of bed instantaneously and be ready for work in no time. I performed my job with the greatest of energy, producing more work than 4 people in half the time. My mind was moving a million miles a minute while I assessed and analyzed each facet of my job. After work I was going to classes, getting my masters degree. Pushing my mind even further. I loved it. I was invincible. “A force of nature,” as my dad used to call me in high school. My type A personality and OCD served me so very well. My energy was poured into applying my extensive knowledge or, outside of work, pushing my young body to new limits. I handled all of my adult responsibilities with ease; money, taxes, appointments, vacations, cleaning, etc…I had aches, pains, injuries and even serious surgeries, but they didn’t stop me. My spirit was stronger than my body.

Not anymore.

I’m a shell of that person. It takes me a solid twenty minutes after my second alarm goes off to just convince myself to drag my body out of bed every morning; not just because of the pain but because I no longer have that thirst for the day. My type A personality and OCD are now a mortal enemy to me. I struggle to keep up with my adult responsibilities because of the anxiety that grows inside of me. My mind still runs a million miles a minute, but it is filled with worries instead of analyses. I get anxious every time I receive mail from a hospital or doctor, to the point where I simply do not check my mailbox. I get anxious calling doctors to make new appointments, and that anxiety completely freezes me when I actually have to attend the appointment. Cleaning seems like a daunting task, not because it will take me time to do it, but because I know that it will lead to hours upon hours of rest afterwards to recover.

I am constantly running the figures in my head to determine just how much energy I can spend. Arguing with myself about the things I really would like to do versus what my body should actually be handling. I convince myself that my pain is justified, and this is not big scary go to the ER pain. Minutes later I’m in a puddle of tears, because I have also convinced myself I’m being a baby. Suck it up, Sarrah, you’re not that sick. Minutes after that I’m reassuring myself its okay to feel this way. I AM sick.

They tell you that your faulty collagen will cause your bones to be less dense, tendons and ligaments to stretch, digestive tissue to shred, and anything else that uses collagen as glue to fall apart. This breaking happens over time, all at once, and most of the time more than once. They give you surgeries and medicine to temporarily patch these things up. Each break comes with a barrage of doctors who know what to do or can at least come up with a plan.

What they don’t tell you is that it will also break your spirit. And only you can find a way to put those pieces back together. Only you can figure out how to navigate the inner turmoil of re-defining yourself. No doctors can help. There is no plan. Every time your fragile spirit shatters you’re forced to pick up the pieces and define yourself yet again. But how many times can you do this? How many different labels and definitions can you give yourself? How many different people can you try to be?

An inspiration. A hero.

These are labels.
The sign I wear today says

Broken.

About Sarrah:

Sarrah is a 28 year old forensic toxicologist. She has three degrees, in chemistry, forensic chemistry and a masters in forensic science. Sarrah is a self proclaimed gypsy girl, growing up in Ohio, then living in West Virginia, Boston and now Texas. She is living with Ehlers Danlos and a host of other conditions. Recently she had three spinal surgeries. In her free time she’s a fervent pit bull rescuer and advocate. Her boy Orfie is her savior.

Sarrah

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.

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United We Stand Taller and Braver. Gauntlet Story Feast

by

Sarah F

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.

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I’m Not Sorry. Gauntlet Story Feast

by

RachelAllison1

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.

RachelAllison2

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.

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Addy’s Army. Gauntlet Story Feast

by

Addy1

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

Addy3

Addy2

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.

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Walking Through Fire. Gauntlet Story Feast. And a giveaway

by

SamGauntlet

I met his mom in November in the Texas hill country. We came for retreat, and God brought our hearts and lives together over shared diagnoses and Hope in Jesus. This week’s story is so real I have not been able to shake it from my mind.

Walking Through Fire
By Sam Re

A friend recently asked me how I was doing, not, How are you? or How’s life? or What’s been going on lately? but, In all reality, how are you actually?

Imagine if you will, walking up to a cashier at your favorite fast food place. You’re standing in line, awaiting your turn. Suddenly your right knee begins to hurt, almost as if it’s going to stop supporting your weight, not a ton of pain, but you can feel it. Now imagine the pain duplicated in your left knee. Then your right elbow, your shoulders, your left foot, right wrist, your entire left hand, ebbing and flowing, surging, retreating.

Now stomach pain so intense it feels like a pit where your internal organs should be, your body imploding to fill the void.

Next a pain in your throat, a burning pain from acid reflux. Water helps, but doesn’t quench it. Then sudden shooting pains in your chest as a nerve fires. On. Off. On. Off. There. Gone.

Another sudden shooting pain in a different location, randomly, no rhyme or reason, each leaving an ache.

You’ve had a headache all day, a mild one, but you can feel it, pressure in your forehead, pain in your temples.

Your back, shoulders, legs, and arms are now aching. Your whole body is aching. Then the nausea. You feel borderline sick, but you’ve felt this on and off all day and had to eat anyway to keep up your strength and weight.

You are tired; so, so tired.

All you want to do is collapse, right then and there on the restaurant floor. Your body doesn’t want to hold itself up anymore. You fight to keep standing. The pain, nausea and exhaustion are wearing you down. You struggle to keep standing there, acting normal, like you are fine, like everything is fine. But you are so incredibly tired, exhausted beyond belief, weary, and a little voice at the back of your mind is siding with your body, wanting you to give up and sleep.

But you’ve woken up feeling like this every day for the past week. The past month. The past year. The past six years.

So you focus. Steel your mind. Decide what you want. Then you hear something. You’ve been hearing it for awhile. People talking. Not just the words, but the conversations. All of them. Words bouncing around in your skull, pounding, piercing, painful.

A fly buzzing too? No, the sound of the ceiling fan, spinning, squeaking quietly against it’s metal bearings, the wind, people opening doors, moving, shuffling, cell phones ringing, buzzing. Noises, tiny and big. You hear them all, but they’re mixed together, bouncing around inside your skull like pinballs, a cacophony of white noise. But wait. What’s that?

The all too familiar feeling of adrenaline coursing through your system as every sense in your body is amplified. Every noise, every sight, every little thing that dares to touch you, the breeze gently moving your arm hairs. You are in full alert.

Then you realize the cashier has asked you what you would like. You need to order. You force yourself to think. The pain and nausea are getting worse by the second. You are starting to become afraid, but you focus. You start to utter the words of your order and realize you are stuttering, not making sense.

You focus harder, mumbling, “Uhmmm,” to complete what you were saying, focusing on each word. You stumble through the order.

Congratulations. You answered the cashier’s first question. What about the second?

* * * * *

This year is the hardest I’ve ever gone through. And yet, if I had the choice, I wouldn’t go back six years ago and change that I got sick. I wouldn’t remove these diseases I carry, wouldn’t cure myself. And really, I don’t know if I ever want to be cured.

I’ve often heard people say that your diseases don’t define you, and I agree. My diseases are not who I am, not the entirety of my being, but they have melded with my vision of myself. They have become something non-removable from who I am, as much a part of me as the gifts God has given me.

My flaws, my mistakes, my failures, my diseases, I’m not looking to get rid of them or hide from them or pretend they don’t exist. I’ve already lost so much that once was me. What’s left has been thrown with me into the forge, and when I emerge, those things will not be impurities or faults in the metal, but they will become my strength, for I am in the unique position to bridge worlds.

I know what it is be healthy, strong, fast, optimistic, and hopeful, and I know what it is to be unhealthy, slow, worn out, in pain, broken, pessimistic, and afraid.

I am in the flames where the forge burns brightest, being taken out and hammered into shape, thrust back into the flames. It will not always be like this, but my pain is not holding me back. It is not holding me down. It is my anchor point, necessary to forge me into who I need to be when God calls upon me, who I need to be for my part in His plan.

This is who I am now. And I have a voice.

SamRe

About Sam:
Sam Re is a wildly creative twenty-something with an old soul, a quick wit, and a disarmingly loyal cat named Tiger. Six years ago, Sam was diagnosed with Eosinophilic Gastroenteritis after losing 22 lbs in eight weeks and winding up on the critical care floor of Children’s Hospital. The ensuing years added dysautonomia, POTS, Ehlers-Danlos Hypermobility, asthma, eczema, allergies, reflux, and spontaneous pneumothorax to the diagnoses mix.

Sam’s words can be found at: https://freedomfalsified.wordpress.com/category/walking-through-fire/
And his 3D creations at: https://www.etsy.com/shop/PhenixEmporium

Sam has donated his friend Rachel Hoffman’s book The Reality of Chronic Illness, A Photo Documentary, by Rachel Allison Hoffman. It is well-written, beautifully illustrated, poignant, and important. If you or someone you know are living with chronic illness, this is a must read.

Would you take back a diagnosis and erase the way suffering has changed you?
Share this Gauntlet Story somewhere on social media with the links below and using the hashtag #GauntletStoryFeast. Leave a comment to be entered in the giveaway for Rachel’s book and let us know where you shared. The winner will be randomly chosen next Wednesday, April 22nd after midnight and announced with next week’s Gauntlet Story.

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.

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Beautifully In Over My Head. Gauntlet Story Feast

by

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.”

R Wilson

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.

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Life is a Gift. Gauntlet Story Feast

by

UnfathomablePlan

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.

BeautifulPam

Pam scar

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.

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Silent Entrapment. Gauntlet Story Feast Begins

by

Flaws

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.

SuzanneBAnderson

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.

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Gauntlet Story Feast

by

GauntletStoryFeast

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.

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