Chapter Fifteen: Nope, No, Negative.

“All these little decisions, these everyday things I surrender, these choices I make daily will one day shine in glory. They will all count.” -Vaneetha Risner.

Nope. No. Negative.

These were the first three words that popped up in my brain the first time my Mom brought up seeing a vascular surgeon at UVA. She had done her research & figured out (quite wisely) this was definitely the best next step for me. I, however, only heard the word “surgeon” & couldn’t figure out why in God’s holy name I needed to see one. Because clearly my issues weren’t the kind where drastic surgical measures needed to be taken…we could just get me some medication or change my diet or something. But I didn’t need surgery.

……& now here we are one year later & I’m preparing for my second major surgery. Ironic, isn’t it?

Yeah….I don’t know what I was thinking. 😛

But more than feeling dubious, I think I was becoming downright weary. At this time, I’d been sick for seven months, & with all the doctor visits, bloodwork, hospital visits, testing, & procedures, I’d only gotten one solid diagnosis. To top it all off, I’d been told I would almost certainly be back to normal after removing my tube, & I was not. We had just gotten home from my last speech & debate qualifier & I was confused, discouraged, emotionally exhausted, & skeptical.

I told my Mom I thought going to another specialist would be a waste of time, energy, & money. We’d checked in with my pediatric gastro specialist & he was skeptical anything was really wrong. We’d accidentally wasted a month in the wrong department (we needed vascular, not cardiology) & after wearing that heart monitor for a month, nothing ultra concerning was found. Deep down I knew I was sick & was going to need to figure out a new plan of action at some point…but my brain just wasn’t there at that time.

You see, I was feeling crazy. & not the fun, sugar high, 2am hyper crazy either. 😉 I was doubting if I really had something wrong or if I was just going mentally insane. Because maybe I’d just gotten used to feeling sick all the time. Maybe I was just pathetically lazy deep down inside. Maybe since no-one could find anything, nothing was actually wrong & this was all in my head. I think all the, “you’re just stressed” lectures, normal test results, & “birth control will heal you” talks just really went to my head & stayed there. Satan can really be oh so convincing when he whispers his lies in your ears…there’s a reason he’s called the king of deceit.

But oh my word, my pain was intense. Over the course of eight weeks, it had spread into my spine, lower back, thighs, left side, ribs, & pelvic region in addition to my right side, epigastric, & head. I also still had very low energy levels & while I was doing a better job eating, it remained an overall struggle. Despite this, I still tried as hard as I possibly could to continue “real life” in typical Grace fashion. But as always, these activities came with very harsh consequences that would land me in the bed in tears with excruciating pain. It was then I realized that my mind was so willing, but my body was so unable, & when I realized that, I instantly felt less crazy.

My Mom did a great job sitting me down & explaining why I should seriously consider seeing Dr. Cherry. In the end, she sold me, & we booked an appointment. After all, if I didn’t like him, I didn’t have to go back.

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On April 12th 2017, Mom & I made our umpteenth trip to the UVA vascular clinic. First, I had what’s called a “Vascular Duplex Exam,” which is “a non-invasive evaluation of blood flow through your arteries and veins. This test provides information to help your vascular surgeon make a sound diagnosis and outline a treatment plan.” Mom & I knew something was up when they impromptu called in a professional running a study on a rare disorder called, “Nutcracker Syndrome,” & asked her to take a look at my test. Shortly after that, she whisked Mom & I down the hall to a newer, high technology machine to check me out further. I heard bits & pieces of the nurses/radiologists conversation…”do you see that?”….”yes, there’s the compression”….but no one would actually confirm they’d found anything.

Next we headed to the clinic. Before meeting Dr. Cherry, I met with two NPs. They were both extremely kind & I instantly liked them. Mom & I felt much more at ease in the vascular department than previous ones. While I didn’t know it then, they would become two of my favorite medical peeps ever. We went over my entire health history in addition to my current symptoms. For the first time in my medical career, they didn’t make me feel crazy.

Then they began to address my vascular duplex exam results. & that was the day I was diagnosed with Nutcracker Syndrome. Nutcracker Syndrome is, “a vascular compression disorder and refers to the compression of the left renal vein (the vein that carries blood purified by the left kidney) between the superior mesenteric artery (SMA) and aorta.” They explained to me that they could select a random group of people off the street & 40% would probably have a slight compression. However, most people have very mild, practically nonexistent cases & don’t experience any symptoms at all. I, however, am in the rare minority. My case of NCS is very severe. Because of the severity of the compression, my blood flow has been compromised which makes the it very weak. Often when it can’t go where it’s supposed to go, the blood finds alternate routes, causing spinal congestion, midline congestion, & pelvic congestion in addition to causing my chronic pain + other symptoms.

Dr. Cherry came in & said his next recommended step was a gastro emptying study to make sure my organs were still functioning properly with the compromised blood-flow & that I didn’t have any gastroparesis (a condition that affects the stomach muscles and prevents proper stomach emptying) from being malnourished/unable to eat for so long. After the study, I would meet with them again to review the results & discuss my treatment options.

Believe it or not, my first emotion was immense relief. I know that probably sounds very weird that I was relieved about having another rare disorder, but I saw it as legit confirmation I wasn’t crazy. I did have a very serious problem going on in my body that was causing these issues & they had actually found it. I felt like I had been holding my breath for a very long time & I could finally let it out. Obviously, as time went on, these feelings would change & become more mixed, but for right now I was okay. I wasn’t crazy. & that’s what mattered to me in that moment.

I didn’t know the complexity & severity of NCS. I didn’t know how truly lucky I was to be under the care of Dr. Cherry…so close to our home no less. I didn’t know how few treatments there are for NCS. I didn’t know he was one of the few who could actually perform one of the rarest surgeries in the USA that I would end up having just a few months later. I didn’t know the craziness this journey would entail over the next year.

But I would soon find out.

 

 

 

 

Chapter Fourteen: Reckless Love.

“To love at all is to be vulnerable. Love anything, & your heart will certainly be wrung & possibly be broken.” -C.S Lewis.

I think I’ve always struggled with being vulnerable. Sometimes, it takes years for me to be completely vulnerable with a person. Because through unfortunate life experiences, I have learned that while it can take years to build trust…it only takes a few minutes for it to be broken. The thing is, I’ve been hurt by people. But let’s get real…who hasn’t? Who hasn’t had someone break your trust? Who hasn’t had their feelings hurt? Who hasn’t had someone let them down at least once in their lives?

I’ve never met someone who said, “I just love being vulnerable.” Ever. It just doesn’t happen. The truth is most of us avoid vulnerability at all costs because it is uncomfortable for us. We put on masks, fake it till we make it on social media, & constantly put on protective armor to avoid getting hurt.

Sound familiar?

Today I got curious to see how the word vulnerable is defined, & I admit, it wasn’t what I was expecting.

Oxford Dictionary defines it as, “exposed to the possibility of being attacked or harmed, either physically or emotionally.” The synonyms include, “helpless, weak, susceptible, impotent, powerless, defenseless…” Even further, the Latin root literally means “to wound.”

Ouch. This sounds like my worst nightmare.

But for all the work we put into shielding ourselves from this phenomenon, love is still our deepest longing, & loving is quite possibly the most vulnerable thing. 

If that girl hadn’t allowed herself to fall for that guy in high school, she would’ve been spared the pain of a wounded heart. If that woman hadn’t said “I do” to the love of her life, she wouldn’t be broken when he betrayed her trust. If that kid hadn’t taken a risk on a budding friendship, he wouldn’t be left hurt & confused after a fight. If that woman hadn’t allowed her parents to fill up most of the space in her heart, she wouldn’t be completely shattered when they died. The list goes on & on.

So why do we love, if it causes so much pain & heartbreak?

“Love the Lord your God with all your heart & with all your soul & with all your mind & with all your strength.’ The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.” (Mark 12:30-31)

I think God knew when He gave this command that by keeping it, it would inevitably produce suffering, but yet He still charged us with it. Sometimes, it seems easier to run away, lock the door of our hearts, & build walls. I know I’ve been tempted a time or ten. If we didn’t have connections, if we were completely detached from everyone/everything, it wouldn’t affect us…but our Father did not design us to be void, emotionless pillars of stone. As He said in the Garden of Eden, “it is not good for man to be alone.” We were made to love & be loved. & love is quite possibly the most beautiful, fulfilling, rewarding thing you’ll ever do.

But maybe we are less likely to suffer for others for the sake of love until we understand how His love made Jesus suffer for us.

Because how much more vulnerable is Jesus when He risks loving us? 

The Last Supper, when Jesus sat with His disciples & broke the bread & drank the wine–a foretelling of what was to come–it was a marriage covenant solidifying His love for us. “In other words, Jesus says to you with this cup, I love you. I want you. I commit to you. This cup is the covenant in My blood, which I offer to you.” -Voskamp.

Love is a risk, & Jesus risked it all for you & me. In fact, He continues to risk…day after day…time after time. Love is painful, & Jesus endured the ultimate pain so we don’t have to. Love is scary, & Jesus had awe-inspiring courage as He willingly faced the cross.

You see, “there are those big-banner, social media, camera-rolling moments, with some imagined soundtrack building to a thundering crescendo, times when we think we’d all pour out our lives, throw ourselves out of a plane, in front of a train, show no restraint & brave the haul of the hurricane to save our love. But real love doesn’t always look like that kind of heroism. That’s more like Hollywood.” Voskamp.

Real love looks more like a sacrificing Savior. A Father who sent His perfect Son from His majestic throne in Heaven to this flawed, sin-filled world to be born in a dirty barn surrounded by dirty animals & raised by two simple human beings. Real love is a Father knowing–even as He did this–that His Son–who never did a single wrong thing in His entire existence–would be beaten, condemned, mocked, & nailed to a cross as a sacrifice for all who have sinned & all who will sin. Real love is a Savior who knew the very same people He died for would reject Him time & time again, would continue to sin, would run away from Him, would curse His name…& yet He loved anyway.

In the ultimate sacrifice of love, Jesus was broken & given. 

How would you like it if someone you loved fully & completely, someone you risked everything for, someone you died for constantly rejected you? “I can’t spend any time with you today….I’m too busy.” “Sorry, I’m not interested in accepting your love or getting to know you.” “Okay, I only have 10 minutes & then I’m done…& don’t expect me to actually talk to you.”

That would crazy hurt, wouldn’t it? This is what Jesus has experienced & will experience a million times over, but yet He always continues to welcome us back with open arms.

I was recently introduced to the song, “Reckless Love,” by Cody Ashbury, & I love the way He describes the meaning behind the song. “God’s love is reckless. He is not reckless, but the way He loves is. He is utterly unconcerned with the consequences of His actions with regard to His own safety, comfort, & well-being. His love isn’t crafty or slick. Its not cunning or shrewd. In fact, all things considered, its quite childlike & might I even suggest somewhat downright ridiculous. His love bankrupted heaven for you & for me. His love doesn’t consider Himself first. It isn’t selfish or self-serving. He doesn’t wonder what He will gain or lose by putting Himself on the line. He simply puts Himself out there on the off chance that you & I might look back at Him & give him that love in return.  His love isn’t cautious. It is a love that sent His own Son to die a gruesome death on a cross. There is no plan B with the love of God. He gives His heart so completely, so preposterously, that if refused we would think it irreparably broken. Yet He gives Himself away again & again & again & again time & time again. Make no mistake our sins do pain His heart & 70×7 is a lot of times to get your heart broken. & yet He opens up & allows us back in every single time. His love saw you when you hated Him & all logic says they’ll reject me. He said nah I don’t care what it costs me. I lay my life on the line as long as I get their hearts.”

Wow. Just Wow.

So even though love is a risk, I believe the reward is greater. I want to learn to love like Jesus. I want to love selflessly & completely. I want to be broken & given in a thousand different ways & die a thousand little deaths for the sake of loving others. I want to love those who feel unlovable, & forgive those who feel unforgivable. Because maybe love isn’t always feeling “good” about others. Maybe its about ultimately being willing to suffer for others.

I want to believe there is enough love in me, that I am loved enough by Him, to be made enough love to give.

I want to be vulnerable. I want to give love to the hurting. I want to love the beautiful people in the backstreets. I want to love those who hurt me & betray me. I want to be brave & open my heart to new relationships. I want to share His love with everyone I come into contact with. I desperately want to love when it’s the most inconvenient…because loving should never be an intrusion or interruption.

Most of all, I want to participate in a full union with Christ. I want to be fully & completely loved by my Father…fully & completely loving Him in return. I want to remember & praise His sacrifice, His risk, His vulnerability.

In the words of Ann Voskamp, “I will love you like Jesus, because of Jesus & through the strength of Jesus. I will love when I am not loved back. I will love when I am hurt & disappointed & betrayed & inconvenienced & rejected. I will simply love. No expectations, no demands, no conditions. I will fall in love & fail at love & fall in my love. & nothing will stop me from loving. Not time, distance, disappointment, or death. You may not love me back. You may humble me, humiliate me, reject me, shatter my heart, & drive the shards into my soul—but this is not what matters. What matters is that in the act of loving we become more like the givenness of Christ Himself. Nothing will stop me from the risk of vulnerably loving because love like this is not a risk. For love defies logic & keeps on loving when it makes no sense because that is what love does. Because love is a risk that’s never a risk.”

Because love only has logic, only has meaning, when it takes the form of a cross.

 

 

 

 

 

 

 

 

 

 

Chapter Thirteen: Its the Little Things.

“Sometimes, said Pooh, the smallest things take up the most room in your heart.” -Winnie the Pooh.

Last week’s chapter wrapped up the first third of my health story, which means there are only two thirds to go. Today, as I begin the first chapter of the second segment of my health story, I can tell this is going to be a lot harder to remember & write. There are aspects about what I’m about to share in the coming weeks that I haven’t even allowed myself to process yet, but nevertheless I know this is a great first step. I am learning that writing is therapeutic for me. It helps me to finally feel what I need to feel, mourn what I need to mourn, & close some unfinished chapters with finality & acceptance, & for that I am grateful.

In March 2017, I enjoyed the good days, & did my best to accept the bad days that inevitably followed. I was learning that every activity had a harsh consequence, & so I had to really think through each activity & decide if it was worth it. I enjoyed the Spring weather with Luke, did my best to keep up with Chemistry, & saw the long-anticipated “Beauty & the Beast” movie with my best friend. I was learning to notice the little things in life & embrace every single victory, no matter how small.

But my main March priority was attending what would be the last qualifying tournament of my speech & debate career. For those who don’t know me personally, speech & debate was a main highlight of my high school experience. Our family joined the league in 2013, but we had no idea the countless ways it would impact our lives. For example, one of my favorite memories is driving to Minnesota with my Dad for the National Championship & the quality time we spent together. The experience has taught me how to communicate effectively, defend my beliefs respectfully, speak in public environments with confidence & poise, & enhance my writing skills, among other things. As an added bonus, our family has made some of our very closest friends from the league. In fact, 84% of my closest friends I met at tournaments. The experience has grown me as a person & helped shape me into the person I am today.

I have always looked forward to tournaments & given everything I competed in 110%.  So of course, I’d planned to leave the league with a bang my senior year.

When my illness first started, I figured I would be healed waaaay before tournament season began. But as it turned out, I was dangerously worse by then. It was really hard for me to let go of competing. I had just let go of the Guatemala trip, & now I had to say goodbye to another significant part of my life as well. Plus, presenting speeches was one of the things I found my self-worth in at that time. Giving it up felt like losing my very last shred of self-worth. (See Chapter #11)

My parents knew I was having a really hard time letting go, & felt really sympathetic. They really wanted me to have at least one last semi-normal high school experience. I mean, I’d given up my entire senior year. So in an act of pure hope, they registered me for a North Carolina tournament in two events. Somehow…don’t ask me how because I really don’t know…I had written two speeches during the madness. (I tried to convince my Mom to let me do five in my typical overachiever way, but she wouldn’t budge. Looking back, I’m grateful, lol!) We knew it was quite a long shot, but figured it couldn’t hurt to try.

Over the next month, God opened every single necessary door: host housing, childcare for Luke, & health exceptions from the league that provided the exact flexibility we needed. In the weeks leading up to the event I made sure I stayed on complete bedrest & ate high-calorie foods to get my weight up. I knew my health was precarious, but I was determined. So Mom & I set off…skeptical, but hopeful.

I can honestly tell you I did not take one single moment for granted. I soaked up every hug, every conversation, every round, & every experience like I never had before. I wanted to document every moment & embrace the miracle that I could even be here.

I tried so hard that week. I tried to smile through the pain, keep up with everyone, remain perky & fun, & act like I was okay even when I wasn’t. I tried to stay strong, even when I was hurting, because I felt embarrassed. I wanted to pretend my illness didn’t exist. I even joked about my health to keep it from being a serious topic. I craved being normal & healthy like everyone else…I just wanted to blend in.

You see, while some people might like extra attention, I definitely don’t. I have never been someone who craves being the center of attention. When I was a kid, I would bawl my eyes out when anyone tried to sing me happy birthday. See proof below. 😛 Actually, a couple people have congratulated me on all the attention I get, but I just have to laugh a little bit when they say that. I mean, the only reason I’m getting attention is because I have chronic illness. Even if I did like attention, I would gladly trade it for a healthy life. IMG_1515

I think I felt this way because my friends hadn’t really seen me sick. They’d heard the stories & listened to me cry as I described it, but to me that was a lot different than actually witnessing it. To this day, the only person who has seen every single gory moment is my Mom. I hated being the sick friend. I hated being the person who couldn’t walk down the hall without assistance, who had special permission to use the elevator, & who had to come late/leave early. I hated needing special treatment & being looked at with pity. To me, it was just really embarrassing on all the levels.

But as much as I tried to hide it, it was a struggle. You see, tournaments are pretty intense even for a healthy person. The car ride is long, (which is very difficult with pain/nausea) it consists of three fourteen hour days with back to back rounds, (which makes getting adequate rest difficult) the nerves make it difficult to eat, (which is not good because it is very important for me to have adequate nourishment) & its a lot of walking everywhere. (which takes energy)

Believe it or not, it was during this week I gained a new appreciation for my heart monitor. You see, in a way, this situation was perfect. If I rested all the time, how would the specialist see the symptoms that occurred when I attempted little bits of activity? We needed something to show proof of an issue, & this was it.

My very first round, right in the middle of my speech, I had my first attack. The room started to spin, I started to shake, I couldn’t stop sweating, the pain hit, & my vision began to blur. Somehow I held my composure & was able to finish the speech, but when I came out I collapsed on the floor, pale, shaky & in tears, & texted for my Mom to come. I think my peers just assumed I’d had a really bad round, but in reality, I was just sick & scared.

We got a call from the hospital checking in later that day because my heart rate had been up past the 200s. They wanted to make sure we’d gotten it down & didn’t need emergency assistance. I couldn’t help but feel panic because I did not come to Cary just to spend time at another unfamiliar hospital. The lights, sounds, & people were overwhelming me, so I excused myself from the busy hangout, found a quiet spot in the hallway with a friend, & just chilled for a few hours. I was learning that I needed to do whatever I needed to do to take care of myself, no matter what people thought.

But Friday night was when everything hit a climax. In the middle of the night, high heart-rate woke me up. My FitBit said it was over the 200s again, & no matter what I did, I couldn’t fall back to sleep. I tried breathing techniques, rehydrating, watching a movie, taking a hot shower…..but nothing helped. Exasperated, I figured there wasn’t anything I could do but press on.

Later that morning I was sitting with two of my best friends waiting for semi-final announcements when suddenly it clicked: this was not good. I needed to stop ignoring it, go find my Mom, & figure out what to do. I got up, walked out of the auditorium, & motioned for my Mom to follow. We sat in two chairs right outside the doors. As I shared what was going on, more symptoms hit hard. My face lost all color, my head started to throb, the room started to spin, my arms/legs felt numb, I felt drained of all energy, my heart rate spiked even more, & there was not one Mom in my line of vision, but three.

Honestly, I don’t remember much of anything after that. It’s all a blur. But this is what I can remember:

  • Really wanting to get out of there to somewhere private because at any second a flood of 200 people was going to come out & see me & that was just more embarrassment that I could possibly handle.
  • Someone telling me congratulations that I’d advanced & the fierce determination that kicked in afterwards to go right then & there across the building to compete. (yeah..I was not of sound mind)

& that’s about it.

Thankfully, the tournament director opened up a private room right down the hall from where I was crumpled & set up screens to provide privacy. Mom recruited two of my friends to help me get down the hall, (which was a lot harder than you would think when you can’t actually move one foot in front of the other & the lights are blinding you) & another friend grabbed Mom’s backpack with all her supplies while I  continued to blabber complete nonsense. Apparently even when I’m only half conscious I’m still a super determined person with slightly warped priorities, lol.

After 15-20 mins of resting & a full bottle of Gatorade, I felt ready to present my very last speech ever. With assistance, I made my way across the building to my competition room, took a deep breath, walked in, & presented my speech as if I had no health issues at all. It was an absolute miracle.

I didn’t realize it in that moment, but that entire week was a miracle. With the diagnosis I would receive just weeks later, I should’ve had to go to the hospital. I should’ve felt a lot worse than I did. I shouldn’t have been able to be there at all, much less compete in that semi-finals round.

There is no explanation for that week except God. I know He touched my body every single day with His healing touch & filled me with the exact amount of His strength I needed to get through. My Father knew what my heart needed & as always, He provided for those needs beyond my imaging.

By the grace of God alone, I finished the tournament in a way that provided me with the closure I so desperately needed. There is no doubt it was challenging physically & emotionally, but it was worth it.

I captured pictures with my friends, shared priceless heart-to-heart conversations, competed to the very best of my ability, shared my health story to provide awareness, & said the necessary goodbyes that needed to be said. I made memories & prayed with people & had one-on-one time with my Mom outside of a hospital.

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I learned that I didn’t need to be embarrassed with my friends because the heart of friendship is being there–loving you as you are–even when the hard times come. Because real friends walk with you during seasons of sunshine & seasons of rain…sticking with you through the good times & bad. God has blessed me with some truly amazing friends that I can be real & raw with…friends that encourage me & are always there for me & pray for me & make me laugh through even the worst times. The fact is, I couldn’t do this without them.

I learned to stop, look around me, & soak up the little moments we so often tend to take for granted…the smiles shared from across the room, the laughter prompted by an inside joke, the precious time spent with friends, the kids squealing, the feel of the sun against your back & plush grass between your toes, the sound of your Mom breathing as she sleeps….because sometimes the smallest moments take up the most room in your heart. 

I think God knew I needed this time before the next leg of my health journey. Because He knew it was going to test me in ways I’d never be tested. He knew it was going to break me like never before. He knew it was far from over.

He knew I would cling to these joyful memories during the hard times.

Each day, each memory, each conversation, each moment was a gift.

& for that I am so thankful.

The tournament was a wake-up call for my family & friends. It showed us how scary my situation remained & that my health journey wasn’t finished yet. So, just a few weeks later, Mom & I embarked on another roadtrip to UVA.

We had no idea what was to come, but we knew God would get us through.

To be continued…..

Chapter Twelve: The Beauty of Lamentation.

“Lamentation is a powerful, & meaningful, form of worship because it places our love for God above even the worst of circumstances in our life.”   – Graham Cooke.

The healing was most definitely not sticking in February 2017. In addition to symptoms past (nausea, lack of appetite, abdominal pain, fatigue, etc) I began to experience a completely new set of symptoms: daily headaches, crippling back pain, swelling, hematuria, dizziness, blurred vision, high heart rate, shakiness, chest pain, & pelvic congestion among other things.

Of course, when I was officially diagnosed with SMAS, we wondered what sister syndromes could be linked to it, what could have caused it, & what other rare things my body could be battling, but by that time, treating SMAS was easily the main priority. I mean, a few times my parents weren’t sure I was going to make it through the night. I needed immediate treatment & SMAS was all we could think about at that moment. But now it was crystal clear I wasn’t better & more action needed to be taken immediately.

Now that we had at least one definite diagnosis, that gave my amazing Mom a solid research starting place. The more she researched, the more possible explanations she found for my flood of symptoms, & the more she knew I needed to get checked out for several possible rare syndromes.

Our main concern at this point was Median Arcuate Ligament Syndrome, which is another compression syndrome. According to Cleveland Clinic, “Median Arcuate Ligament Syndrome (MALS) is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus). In a patient with MALS, the median arcuate ligament essentially acts like a hammer and the celiac axis acts like an anvil, compressing (squeezing) the nerves in between. This causes a number of symptoms, such as pain in the abdomen that can be made worse by eating or activity. It is a very rare condition.”

Well, doesn’t that sound like great fun? 😛

My pediatric gastroenterologist referred us to the best cardiology specialist at UVA to pursue continued medical assistance on February 28th, & it was my least eventful appointment to date. We went over some brief history & niceties before she made her official professional recommendation: a 24/7 heart monitor for the month of March. I would keep it attached to my body, & when I had a symptom, I would click the button & log it into the matching cellphone. If an operator noticed something concerning, they would call & tell us to head to the nearest ER. It would become my constant, closest companion. At the end of the month, I would go back to discuss the results & our next step.

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If I had a dollar for everytime someone complimented me for handling my situation extremely well, I would be a very rich woman. In fact, around March 2017, I was starting to get really tired of  the pressure to handle everything like a champ. I felt like I had unintentionally placed myself on a pedestal by handling everything so wonderfully, so when I broke or reacted everyone would just expect me to instantly revert to my sunshine attitude. I felt like I couldn’t talk to anyone about how I really felt without judgement. I was surrounded by people, but felt like I had no one. I was confused & angry, but I had taught myself that the only way to handle this whole thing was with 100% cheerful acceptance.

So I pushed every single broken piece of my heart deep down in a box, locked it up tight, & buried it never to be opened. Because good Christians always accept their trials with joyful smiles & exemplary attitudes….they never lament or mourn or scream. But I had never thought that lamenting could strengthen my relationship with my Father. I mean, good grief, there is a literal book of the Bible called, “Lamentations”. 😛

The story of Ruth in the Bible is very well-known, & in it Naomi is commonly known as the grumbling complainer…she has even been considered by some to have had weak faith. But one of my favorite devotionals, “The Scars That Have Shaped Me,” shows the story from the perspective of one who has also suffered.

Naomi definitely endured her fair share of tragedy. She lost her sons, her husband, & was left a widow in a foreign land for crying out loud!! I can completely understand her need to lament & mourn! But if you dig deep into the story & stop to think about it, Naomi’s trust in her Heavenly Father through it all was quite remarkable.

The devotional states, “Naomi’s trust is further evidenced by her determination to travel to Bethlehem alone. If Naomi felt that God had truly abandoned her, she would have never begun that journey. She would have stayed in bed, pulled the covers over her head, & died in Moab, bitter & angry at God. But she doesn’t do that. She acts in faith, trusting that God will provide for her.”

I actually admire what Naomi did next. She arrived back at her hometown & she didn’t plaster on a fake smile & pretend everything was perfect. She didn’t suffocate herself with an exhausting façade. She openly admitted she felt empty, she confessed she’d endured tragedy, & she invited those around her into her vulnerability. Risner expounds, “Naomi’s words were raw, but she speaks truthfully about God. She acknowledges that He is in control of all things, & everything is ultimately from Him. Her theology is profoundly God centered. Underlying Naomi’s lament is a deep trust & understanding of God. She is not resentful of God & has not turned away from Him. Quite the opposite, Naomi is moving towards God with honesty.”

Wow, I can only imagine the courage that must’ve taken. I’ve always been private about my pain & suffering. I have built impenetrable walls with every single person I know. I’ve never felt comfortable being completely vulnerable or honest with anyone in my life due to fear of judgment or condemnation. I’ve become a master in the art of faking a smile & saying, “well, things have been tough, but here’s what God’s been doing!” even when I’m not completely convinced. It never occurred to me that raw authenticity might draw those around us to God more than pseudo cheerfulness does. It invites them to be honest & real too without the fear of rejection/judgment. It shows them their brokenness is welcome here. But most importantly, it shows them Jesus doesn’t condemn us for our human moments. 

& you know, that uncensored honesty might have made some townspeople uncomfortable. There are always those people who ask how you’re doing, but don’t actually want to know. & it’s never comfortable to hear about someone else’s heartbreak, & no-one ever knows exactly how to respond. & you know, maybe some people judged her & questioned her faith. But I think some people–maybe even the majority–held her & accepted her. Maybe they even felt inspired to knock down some of the walls they’d built. Maybe they felt relieved that they had someone they could cry with without her questioning their faith. Maybe it was the proof they needed that they could lament to God without condemnation. Maybe it even drew non-believers to learn more about her loving, patient, merciful God.  

We know it had an effect on Ruth. Ruth was an unbeliever at the beginning of the story, but she had a front row seat to witness a completely different God than the one she believed as she watched Naomi.

What did Ruth see?  She saw a woman who’d lost everything remain loyal to her God & strong in her faith. She saw a woman who believed with every fiber of her being that God saw her tears & heard her prayers & would heal her. She saw a woman who trusted her God enough to be completely free & uncensored. & she saw a God who gave her absolutely no condemnation or judgment for it. So what does Ruth do? She gives up everything & follows her mother-in-law to her homeland, & it is in the midst of Naomi’s pain that Ruth comes to Jesus.

While it may sound strange, there is true beauty in lamenting in suffering. Lamenting is a way to keep us engaged with our Father. Lamenting is a way to invite God into our pain & heartbreak so He can comfort us & work in our hearts.

So you know what? I have a deep respect for Naomi & her honesty & abandon. But even more-so, I have a deep admiration for her trust in our Father. She has taught me some very important life lessons that I know I will cling to in the coming days.

I am learning that, “Godly lament does not repel people from the gospel, but rather draws them to the Lord; it strengthens rather than destroys the faith of others. When we live authentically, we naturally draw others to God’s grace. Naomi’s pain & bitterness could’ve pushed Ruth away from God, as Ruth saw Naomi’s struggle with God’s goodness. But instead, Ruth saw that Naomi’s hope—even through catastrophic loss—was in a sovereign God who was loving enough to hear & respond to her lament.”

& as we see later on, God does respond to Naomi’s lament. He gave her the gift of a faithful daughter-in-law Ruth, a loving son-in-law Boaz, & grandson Obed, who was in the line of Christ. & He gave her Himself…His presence & comfort, which was the greatest gift of all.

& if that doesn’t give hope to a hurting spirit, I don’t know what can.

 

 

 

 

Chapter Eleven: What Do You Do When the Healing Doesn’t Stick?

“Thousands of feet in the air looking over a city lit up with thousands of tiny lights. I could almost hear the cries of suffering ringing out. I asked the Father, “how do You comfort an entire world in so much pain?” & He quickly answered, “with arms stretched wide on a cross.” -@sheiscaptivating

I’m sitting in the consultation room with teal walls & grey furnishings for the fifth time in just over two months. I’m wearing jeans & one of my favorite t-shirts & I finger the edge of the fabric just like I did when I was a little girl & wanted security. I have makeup on for the first time in weeks & my doctor notices & applauds my “pretty eyeshadow colors.” I hear the words coming out of his mouth, but I can’t help feeling skeptical. “After the feeding tube comes out, most people are able to go back to a completely normal life. While there is a very small percentage of people who continue to struggle without the feeds, I truly believe you will be in the percentage that thrive. Everything looks normal. You can exercise, get back to school, & eat ribs to your hearts content. You can get back to normal life!”

Its funny how sometimes something you’ve craved to hear for so long doesn’t always bring the desired effect you thought it would.

I’m thinking about how I don’t even like ribs & doubting everything really looks normal because something inside me still feels like somethings wrong. I can sense Mom’s brain silently running 123 mph, mentally scanning through her extensive research since my diagnosis while smiling politely at the doctor.

I inhale deeply & ask him one of the questions we’d rehearsed on the drive over. “Doctor, what about Nutcracker Syndrome? Can you explain what that is? Is it something I may  currently have?”

I’m not even sure what Nutcracker Syndrome is yet, but I make a mental note to talk with Mom about it later.

The doctor patiently smiles at me & launches into his personal viewpoints about Nutcracker Syndrome & what it is…a viewpoint we would later discover differed from other medical professionals I would encounter. Then he says, “no, no. You likely had Nutcracker Syndrome simultaneously with your SMAS, because it occurs as a result of that compression, but now that the SMAS has been addressed, you are definitely not currently experiencing that.”

He congratulates me & says he’ll see me in a year & we walk out of the office. I don’t think my Mom is convinced I’m okay either, because she’s negotiating for me to come back in six months time instead & somehow that comforts me…that I’m not alone in my feelings. I breathe a silent prayer of thanks heavenward that nothing unexpected occurred. I know I should feel more excited about this visit. I know I should be grateful nothing traumatic occurred. I know I should feel overjoyed this is all over. But I don’t. Something just doesn’t feel right. Something feels wrong. This doesn’t feel over.

We get in the car & I pull out my phone & start to text the news to friends & family who’ve been anxiously awaiting good news. Next I get out my iPod touch & put my headphones in & start composing a social media update to post when we get home. Everyone is congratulating me & praising God & celebrating & I’m playing along but I can’t help feeling hesitant. Because with everything I’ve gone through I just can’t let myself get excited quite yet.

I’d smiled when we got the call confirming my tube could come out a week prior, but also felt apprehensive. I was so nervous the tube would come out & I wouldn’t be able to eat without it. I was nervous that my symptoms would all come back & it would all go downhill & it would be declared the feeding tube absolutely had to go back in & that couldn’t happen because I would never under any circumstance go through that again.

As tempting as it was to leave it in forever, I knew I couldn’t, nor did I actually want to.  So I escaped into the solace of my bedroom & carefully began to pull it out.

As soon as it was out, I couldn’t help but feel a wave of relief. I had forgotten how wonderful it was to live life without that thing! & oh, how sweet freedom was! I caught up on Chemistry homework, took my mid-terms, played roly-poly (an original game invented by Luke) with Luke, attended Chemistry class, had a long-overdue sleepover with my best friend, & embraced the little things.

But something still wasn’t right. Mom knew it & I knew it. I did my best to ignore the heightening symptoms, but they demanded to be acknowledged. I did my best to hide the pain, but it screamed to be seen. & all too soon, just one week after I was declared “okay” illness began to rear its ugly head once again. Suddenly, there I was again, in the thick of what was supposed to be conquered…difficulty eating, debilitating pain, overwhelming fatigue, gut-wrenching nausea. It was deja vu in the scariest form.

Sweet Jesus, that was tough.

One morning I curled up with my legs under me, remembering everything I’d already endured & deciding I was done. I couldn’t comprehend why in God’s holy name this journey couldn’t be over. Geez, hadn’t this all been enough already? Hadn’t I already proven myself as a faithful follower & beyond? I was grateful for the things He had taught me through this, but enough was enough. He could continue teaching me with a healthy, normal life, right? On impulse, I reached over & opened the new journal my bestie had given me for Christmas, grabbed my favorite purple pen, & penned my first entry:

“The past months, weeks, & days have been filled to the brim with difficulties, disappointments, discouragements, & defeats. Yet somehow, they have also been filled with miracles, triumphs, & beauty. But in all honesty my heart is hurting & is torn in two different directions. Part of my heart is filled with pure humanness: confusion, grief, mourning, & pain. The other part is filled with thanksgiving, praise, & joy despite my circumstances, as I know it should be. But lately I’m worried humanness is winning out. Satan is throwing so many things at me & I am being tested more than I ever anticipated or imagined. I’m sorry I feel this way. I’m sorry.”

I’m sitting there & I suddenly realize I am void of emotion. Because I’ve given my all for a long time & suddenly I just need to stop because this is all taking too much energy that I just don’t have. It takes too much energy to cry. It takes too much energy to feel. It takes too much energy to think.

& then I realize in all the craziness I’d forgotten to create a 2017 theme. You see, the past five years I’ve set a theme for the year that I work on with God regarding my heart & my faith. So I’m sitting there & I think He knows I don’t even have it in me to pray because suddenly His voice rings completely clear & unbidden in my heart & mind—Faith Over Fear. “For the Spirit God gave us does not make us timid but gives us power, love, & self-discipline.”  (1st Timothy 1:7) & just like that my theme is decided. I write it down in the top corner of the inside cover, let those three words sink in, stare at them written in flowy purple ink on the silky smooth paper.

I realize I desperately need strength & I need it now so I do the only thing I know to do. I open my Bible & begin to search for any & every verse speaking of healing.

“I have heard your prayers & seen your tears & I will heal you.” (2nd Kings 20:5)

“Heal me Lord & I will be healed. Save me & I will be saved. For You are the One I praise.” (Jeremiah 17:14)

“Surely He took up our pain & bore our suffering, yet we considered Him punished by God, stricken by Him, & afflicted. But He was pierced for our transgressions, He was crushed for our iniquities; the punishment that brought us peace was on him, & by His wounds we are healed.” (Isaiah 53:4-5)

“But I will restore you to health & heal your wounds,’ declares the LORD” (Jeremiah 30:17)

I’m feeling strength seep into my mind, heart, & soul. I’m feeling a smile tug up my lips. I’m feeling my heart begin to lift. I’m feeling the fog turn into mist & sunshine hitting me again.

I’m feeling the miracle only Jesus could perform in my broken heart.

I take a deep breath & savor this moment. & I open my journal again & add to the entry:

“I lift my anxieties to You, knowing You hear each cry. I let the tears fall freely, knowing You are collecting them in Your bottle. I trust You are working in mysterious ways that are beautiful & will bless me beyond my imaginings. I know with impenetrable confidence I can do this now. Because You dwell in me & my strength is not my own, but Yours. A perfect strength. An unbreakable strength. You will never leave me, You never have. I don’t have to worry about breaking, because You make me whole. Come what may. Thy will be done. Because with You, all things are possible. I will have faith over fear.”

I still can’t help but utter some burning questions in a small voice heavenward…..

How can You comfort me when I am feeling shattered into a million pieces? How can You help me through the length & burden of this journey? How can You soothe my hurt & give me peace through the hurricane?

& again, He whispers, “With arms stretched wide on a cross.”

 

Chapter Ten: To The One Who Feels Like Not Enough.

“Society tells us we’re killing it when we’re grinding it out, working out, studying hard, & being incessantly busy & productive. Jesus tells us we’re killing it when we are kind, grateful, & loving. Go out & kill it for the kingdom.” –sheiscaptivating

Perfection is defined as, “the action or process of improving something until it is faultless or as faultless as possible.” Personally, I am very familiar with this particular word & definition because I have worked all my teenage life to be as faultless as possible. I have, in every sense, strove to be the picture of perfection. Actually, I believe that’s still putting it lightly. I’m an ultra-detailed, excessively organized, extremely meticulous overachiever who strives for perfection in every. single. area of her life.

I assure you, this is not an exaggerated statement. I have always fought a (losing) battle for absolute & total perfection in every area of my life. When working on schoolwork, every problem, paper, & sentence had to be written in my best penmanship, with the most thorough answer possible. If I didn’t feel my morning devotions had gone flawlessly, I did them again. When I sent a text or email, I would read it at least two times through before sending it & often tore it apart afterword with harsh condemnation. Everyday was scheduled with precision, & if even one step felt sub-par, the rest of the day felt off. In addition, my bedroom is always spotless & picture-perfect. When one thing is touched or moved out of place, it bugs me until I fix it. & God forbid anyone even touch my closet! 😛

Last month Mom & I were in Ulta smelling perfumes from the Philosophy collection & as we walked I literally paused at each display to straighten the perfumes, lotions & creams in pristine, measured lines.

Yeah…I may have a problem.

But in all seriousness, this chronic craving for perfection has led to a constant battle with self-worth. I found my worth in schoolwork, volunteer-work, glowing interactions with friends, & a busy schedule. Failure became my worst enemy, my worst fear.

My everyday actions began to define me.

Worse, I held myself to impossible standards & punished myself when I fell short of them with verbal abuse. Harsh critique became a habit, a routine.

Satan knew the lies that hurt most, & whispered them daily: “You’re a failure.” “You’re ugly.” “You’ll never be enough.” 

& then I got sick.

One by one, my illness began to strip me of every ounce of “perfection” I had desperately grasped for so long. One by one I watched helplessly as school, babysitting, volunteering, speech, church, & activities slipped away…taking every shred of my self-worth with them.

Defeated, I would lie in bed & believe my worth was completely gone. Who would want to be friends with someone whose life had been reduced to debilitating pain & bedrest? Who would want a daughter who couldn’t graduate with honors on time or go to college or leave home? Who would want a sister who couldn’t play with him or take him places? Who would want to pursue a relationship with someone who barely had enough energy to take a shower & had not one shred of beauty left?

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The other day I was sitting in my room & my mind was whirling with all the ways I had flopped this week & the stress of it all began to choke me. My breath came in wheezy pants, my eyes were wide, the tears were spilling, & my room began to spin. It took me a few minutes before I realized what was happening: I was clinging to anxiety & work & my to-do list like my very life depended on it. There was no outside pressure or urgency regarding these things, yet I was placing the weight of the world on my sick body & brain & for what?! A few minutes of satisfaction before a new task arose?

I took a deep breath, closed my eyes, & began to pray, “Jesus, I am surrendering all my feelings of stress, anxiety, worry, inadequacy, guilt, unworthiness, brokenness, helplessness, fear, & doubt into Your hands & saying NO MORE! Jesus is where I find my peace & hope! Jesus is where I find my identity….for I am HIS!”

& then it hits me…the truth of that last sentence, & I pause. For so long, I placed my identity in all the wrong places, in all the wrong things, & it has suffocated me. Verses wash over my soul & I feel overwhelmingly like a dying woman in the desert receiving precious life-giving sips of water.

“He calls me beautiful one.”

“I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.”

“Fear not, therefore; you are of more value than many sparrows.”

“The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.”

A question slams into my mind with undeniable force, “Is anything you’re doing here adding up to anything that matters? In the end, is what you’ve chosen ultimately about Christ & His Kingdom? If not, then no matter what you’ve chosen, it won’t matter at all.”

Society teaches us to constantly strive for perfection, to fear failure above all else. We live in a world that notices & critiques our flaws far more often than noticing & acknowledging our strengths. & as a result we unwittingly put our faith in idols…idols of beauty, money, fame, grades, affirmation, intelligence, etc. We put our time & energy into things that are not ultimately glorifying Christ & His kingdom. We become increasingly aware of other’s strengths in differentiation to our own weaknesses. We begin to play the dangerous game of comparison to others who seemingly have their lives in perfect order. We put on an exhausting facade to hide our feelings of inadequacy & our flaws.

We forget that because of Jesus, we are enough, & worthy, & invaluable. 

I realize it is far more important to embrace priceless moments spent with friends & family than it is to be holed up in your room working on school from dawn til dusk. I realize it is far more important to read the Bible where God leads you, to pray with abandon, & to journal the precious things He taught you that day than it is to simply go through the motions. I realize it is more important to be a present friend than it is to be a perfect one. I realize it is more important to cherish the snuggles from my little brother than it is to stress over my blankets being muddled.

I admit, this is something I still frequently struggle with, but I’m learning. I’m learning not to elevate myself, but to elevate Christ in me: His love, His grace, His mercy, His goodness, His majesty, His power, His strength. I’m learning not to trust social media, to realize it is simply a platform that caters to the perfect facade people so desperately crave. I am learning to bring my vulnerability, flaws, & imperfections to the feet of Jesus who is passionately & perfectly in love with me.

I am learning to let go of masks & fake confidence & the pressure perfection brings. I am learning, in the words of Ann Voskamp, “to remember to put my priorities in all things unseen. I’m trying to slay the idol of seen, break the idol of performance, & believe the state of my house doesn’t reflect the state of my soul. It’s the priorities unseen—the prayers, the relationships, the love while doing the work—that hold the meaning, the merit.”

I am learning to trust that He is enough in me to make me enough.

Chapter Nine: January 9th, 2017

January 9th, 2017.

A day that was scary, stressful, & loathsome.

A day I’ll remember for the rest of my life.

It was on this day Mom & I made another roadtrip to UVA to check on my progress with the tube feeds. Ironically, I had been experiencing a great deal of perturbation leading up to this particular appointment. I felt in my gut this appointment was going to reveal something was wrong. So I guess it wasn’t surprising I was very tense & quiet that morning, lost in my thoughts & worry.

I walked into the familiar testing room & met the kind radiologist who’d be performing my test. I followed her directions & had just started to believe maybe everything would be okay when it happened…what I had already been preparing myself for for days…something was wrong.

My feeding tube had moved. In fact, it wasn’t even remotely near where it was supposed to be. Remember the intense spine pain, abdominal pain, & nausea I described in last week’s blog post? Welp, this explained everything. When the radiology attending saw my scans, she said, “no wonder you were in pain!” The tube was pressing against my spine, & wasn’t passed my SMAS obstruction, which meant liquid was traveling into my stomach….defeating the very point of the tube & hindering my healing process.

The radiologist called in her attending, (which in medical speak is basically the highest level of medical expertise you can get, thank goodness) who explained what needed to happen. To my sheer horror, they needed to reposition the tube. Right here, right now.

I panicked. I went in the bathroom, locked the door, & panicked. As I shared in chapter six, at that time the feeding tube placement was the worst experience I had ever endured, & hearing this was my worst nightmare coming true. I stared at myself in the mirror–face ghostly pale, bottom lip trembling, the stupid tube coming out of my nose–& let my mind run 102384 mph.

I’m not proud of it, but I lied to the attending out of fear. I told her maybe my pain wasn’t as bad as I originally thought. Maybe it was just a four, not a ten, & maybe it only happened every once in a while, not everytime we turned on the feeding tube. After I finished, the attending looked me in the eyes & said something akin to, “Grace, I can tell you right now, even if its ‘only a four’ pain is pain, & you shouldn’t have to endure that. Take a moment, talk with your Mom, & I’ll come back in 5. It is completely up to you, just think for a minute.”

Rats. Sound logic.

I gathered every last ounce of courage I could muster, fought the tears that were rapidly pooling, & climbed back onto the table. But before I did, I looked the attending in the eye, & told her what I had gone through just weeks before.

& then I let the tears come.

Because she needed to see how terrifying this was. She needed to understand this was taking everything I had in me & then some. She needed to do the absolute best she could possibly do.

& she did.

They had to keep reminding me to breathe. I think I was scared that if I took even the tiniest breath, the pain would come. I kept praying & singing hymns in my head. I was unable to stop, couldn’t stop, because if I stopped the fear would engulf me, so I just kept repeating, “in Your name, protect me from pain…protect me from discomfort…give me the exact amount of courage I need to survive this….hold me in Your hand…help me…protect me….”

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You know what I realized last week? I’ve started to blatantly ignore certain Bible verses. I realize just how terrible that sounds, but hear me out. There’s a group of verses that are recited almost every day, are always posted on social media, are the go-tos for basically every difficult situation, & have sadly developed a reputation of being “cliché.” Phil 4:13, Jeremiah 29:11, John 3:16, Romans 8:28, Isaiah 41:10. If I had a dollar for everytime someone recited one of these to me during my health journey, I would be a very rich woman. So, overtime, I’ve simply dismissed them. When I read or received them, my brain would say, “yes, people, I know, I know!!” I thought since I knew them by heart & had heard them so many times, I’d already learned what I needed to learn from them.

Oh, Grace……

Yesterday my phone beeps & someone has just sent me Jeremiah 29:11 & I start to disregard it when suddenly it hits me….almost like the voice of God Himself….Grace, read the verse. So I do. “For I know the plans I have for you, declares the Lord, plans to prosper you & not to harm you, plans to give you a hope & a future.”

I’m sitting in my moonchair with my favorite Costco blanket & for the first time in well, maybe ever, I let the truth & promise of that verse sink deeply into my mind, soul, & spirit. & I think, what if we did this more often? what if I did this more often?

What if, at least every once in awhile, we actually read the power of these words outloud as a reminder of the promises & candor we need so desperately? What if, even though we may feel like we already know them as facts in our minds, we remember to truly believe the words with every fiber of our being? as if we are hearing them for the very first time?

Because maybe, if I had done that to begin with, I wouldn’t have gotten here in the first place

One by one I look up the verses I’ve been so wrong to ignore & read them outloud to myself, slowly & as if for the first time. I let the exquisite, undeniable truth of these words of promise from my Daddy wash over me like a soothing balm to my aching spirit.

“I can do all things through Christ.”

“Plans to prosper you & not to harm you.”

“God so loved the world that He gave His Son.”

“All things God works for good for those who love Him.”

“Do not fear for I am with you always.”

I realize how wrong I’ve been & shame washes over me, but just as quickly I’m reminded that Jesus always forgives & amazingly still loves me despite my daily faults & mistakes. I’m reminded how He loved me so much, He died as a sacrifice for these very mistakes. & it hits me again the true miracle of that. The miracle we tend to forget so quickly. The miracle that despite how undeserving I am, He saved me, & will always save me, no matter how many times I fall.

& I rejoice & I smile & I thank Him again & I remember all the times Jesus kept these promises to me, including January 9th, 2017.

Although I don’t remember her name, the attending who did my tube adjustment was absolutely amazing. She was brilliant, gentle, compassionate, & was able to complete everything with very minimal discomfort. She checked on me every minute, stopped when I needed breaks, cheered me on through the process, & was so very talented at her job. We loved her so much, Mom & I both hugged her at the end! I will never forget how she made it one of my best hospital experiences to date.

We found out despite the setbacks, my tube was helping, & my fat pocket was growing!! Oh how I needed some good news. ❤

Jesus definitely gave me the exact amount of strength I needed to survive that day. I handled the procedure with a truly inexplicable peace & calm. He proved, “I can do all things through Christ who strengthens me.” I don’t know why I always doubt His ability to get me through all things, but He reminds me every single time of His faithfulness, strength, & protection.

January 9th, 2017.

A day that was eye-opening, rewarding, & strengthening.

A day I’ll remember for the rest of my life.

 

 

 

Chapter Eight: Your Consolation Brought Me Joy.

“When anxiety was great within me, Your consolation brought me joy.” Psalm 94:19.

It had been almost two weeks since my feeding tube placement. Even though I was still on complete bedrest, we were seeing some encouraging improvements. I was able to speak without gagging, my dark circles were diminishing, my energy levels were slowly climbing, my cold was clearing up, (I will NEVER take the simple ability to blow my nose for granted ever again!!) & I was finally gaining a few pounds. It was clear this nourishment was long overdue & we were beyond grateful God had provided a way for me to receive it!!

In some ways, my body continued to struggle. As soon as we turned the machine on, overwhelming nausea would hit hard & fast. I also started a brand new symptom: sharp spine pain. I dismissed these symptoms, & told myself I just needed more time to heal & allow my body time to adjust to the nutrients.

But one night, my body began to seize. It would tense & jerk & shake violently. I would get extremely hot & sweaty & thirsty & I had absolutely no control over it. It was not only frightening for me, but for my parents, Luke, & our dear friend Heidi to witness. So, my parents made the executive decision to immediately take me to UVA’s emergency room.

I seized the entire way there. Thankfully, Heidi so generously volunteered to come with us, & drove so my Mom could keep me stable me in the back seat. I don’t remember much of that car ride, except for the fact I called one of my best friends crying. I couldn’t communicate very well, but that didn’t matter at all. She simply prayed with me over the phone…words of truth, encouragement, & strength over me. My Mom said she’ll never forget that I visibly calmed, & that was a gift!

The three of us spent the entire night in the ER. I did not want to be there at all. I didn’t realize my parents were concerned I could be battling a possibly fatal side-effect from the feeding tube involving nutrient shock & electrolyte imbalance. I didn’t realize I could actually be in danger. My brain just wasn’t there. My number one concern was how I was going to survive this. Again. I just wanted to go home.

Heidi & Mom advocated without wavering on my behalf that night. I couldn’t remember the last time I’d seen my Mom in such a “Momma Bear” mode. 😉 It was a good thing, too, considering the only phrase I would say to the doctors was, “how soon can you release me? I don’t wanna be here.”

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Thankfully, the doctors didn’t listen to me, & I was admitted first thing the next morning. We stayed for three nights & two days. During that time, they hooked me up to an electroencephalography, also known as an EEG, to watch what actually happened as I seized. I gotta say, I don’t think I have ever felt so self-conscious! I had wires attached to my head/hair with strong paste, a feeding tube coming out of my nose, no makeup, no shower, a hospital gown, an IV coming out of my arm, & a heart monitor attached to my chest.

By the end of the visit, we had an answer for my “seizure” activity. The doctor explained that I was experiencing what are called pseudo seizures. Basically, they strongly resemble seizures, but don’t cause blacking out, being unaware of surroundings, or any brain damage whatsoever. He told us that when my pain & nausea hit a particular level of unbearable, this was my body’s way of telling me that it was done…it couldn’t handle anymore. This information was able to put us at ease knowing that I wasn’t in any fatal danger, & we were cleared to go home.

That week was the first time I hit my breaking point. I had tried so hard to be strong & unbreakable for so long, but this just felt like too much. I could not go back to the hospital again, & I absolutely could not be admitted. I couldn’t endure another test or another needle. I couldn’t see another doctor. I couldn’t spend another night away from my own bed, my own room, my little brother. I just couldn’t.

I was reading back in my journal today, & found this entry from that week,

“Sometimes everything just seems like too much. Life just gets too overwhelming. You feel like you can’t deal anymore. I’m so exhausted. This whole health thing is so hard. Every minute is a fight. Every second is a raging battle. & it is so hard, God. I feel so alone. Why can’t I be normal? I don’t want to count calories or walk around with a tube coming out of my nose. I am weak, overwhelmed, & lost. I need a break, Jesus. All I can think is ENOUGH. This whole thing feels like an uphill battle that I’m losing. That’s all I can think. I’m losing. I’m broken.”

But what I find even more interesting is what I wrote the very next day,

“When my heart is heavy with hurt & confusion, may I always surrender to You. I have so many internal battles, but I know You will win all of them. When my mind goes 100 mph, may I still rest in You. May I surrender all my anxieties & stress into Your hands. May I trust You are in control & Your perfect timing, even when I am impatient. I come to the fountain of your grace & peace I. Am. Satisfied. I am okay. I can do this, because You will walk with me.”

When I look back at my health journey, it is a gift to see how God was so clearly present. Most days, I couldn’t see Him working amidst the pain & heartache, but that didn’t change the fact He still was. I love to see how broken I was, but how God still worked in that & brought complete emotional healing. When I thought I couldn’t endure another hour, He always, always gave me the exact amount of strength & hope I needed to press on. I know for a fact there is absolutely no way I would still be here today without that…the constant promises of His love & strength.

God has taught me, “He is inviting me to heal, but also to see my most meaningful calling: to be His healing to the hurting. My own brokenness, driving me into Christ, is exactly where I can touch the brokenhearted.” (Ann Voskamp) When I want to give up, when I want to throw in the towel…..that reminder is what helps me keep going. The continual prompting that this journey isn’t ultimately about me. It’s about God using me to be a disciple to those He brings into my path. It’s about pointing everyone around me back to Him over & over again. It’s about being completely & totally sold out & willing to say, “Write my story, God, however You see fit, & I will trust You every second through it. Here I am. Use me.”

& that, is my gift wrapped in black.

 

 

 

Chapter Seven: How in the World Do We Live With a Broken Heart?

“Brokenness happens in a soul so the power of God can happen in a soul.” –Ann Voskamp

Today I want to take a different direction with this blog post. I want to take a break from sharing my health story & instead focus on a topic God has been very clearly teaching me about the past few months. You see, there’s a burning question that has been pressing the very core of my soul with an undeniable weight & force:

How in the world do we live with a broken heart?

More eloquently put by Ann Voskamp, “what in God’s holy name do you do when it feels like you’re broken & cut up, & love has failed, & you’ve failed, & you feel like Somebody’s love has failed you?”

It took me a long time to admit to myself that I am simply broken; to actually say those words out-loud to myself & to others. Why? Because I feel like being broken is one of the most shameful feelings to experience, especially in the Christian world. In fact, we live in a world that sees broken things of no value. The concept of being broken is something that paralyzes me with fear. It is represented as shame & weakness & mediocracy. It is a state Satan tells us, “a good Christian would never be in.”

So what do we do? We hide. We hide in our distractions, our houses, our social media pages. But most of all, we hide from God.

But it shouldn’t have to be this way.

If we are being completely raw & honest, who doesn’t know what it feels like (or will someday) to flash a big, fake smile & utter, “I’m okay,” when you really, truly aren’t. Who doesn’t know what it feels like (or will someday) to act like you don’t have a care in the world…all the while feeling the pain suffocate you.

So how in the world do we live with a broken heart?

I was absently scrolling through Instagram one evening (I know, such a typical young adult) when a quote gave me pause. “The very thing we are afraid of, our brokenness, is the door to our Father’s heart.” –Paul Miller

Um, what? Lol, Paul Miller. You clearly have no idea what you’re talking about here. Brokenness is bad. Brokenness is humiliating. Brokenness is weakness.

Oh, how wrong I was.

I couldn’t get the quote out of my head. It refused to be silenced & demanded to be heard. So, a week after seeing that quote, I got curious & decided to begin reading a book I’d put off for awhile: The Broken Way. I mustered up every ounce of courage I could, opened it up to the first page, & my mouth fell open as I read the opening quote:

“The very thing we are afraid of, our brokenness, is the door to our Father’s heart.”

Alrighty then. God was clearly trying to tell me something. So I began to read, & as I read, God began to answer my question through Ann Voskamp:

“How in the world do we live with a broken heart?”

Ann presented thoughts & ideas completely foreign to me.

What if brokenness isn’t something we should fear? What if it isn’t actually something to be ashamed of? What if brokenness is the beginning to finding healing?

What if….the broken way is a way to allow the abundance of God in?

Intrigued, I went back in my journal & found an entry from about six months ago—another quote by none other than Ann Voskamp:

“Hannah tasted the tears of infertility. Elijah howled for God to take his life. David asked his soul a thousand times why it was so downcast. God does great things through the greatly wounded. God sees the broken as the best & the best in the broken. He calls the wounded to be world changers.”

This makes me think about Jeremiah, Habakkuk, & Job…three of the highly respected followers of God in the Christian realm & the fact they too were broken. They lamented & felt fear & cried out to God in complete abandon.

But God didn’t criticize them for that. It didn’t mean their faith was automatically small. It didn’t mean they had failed. It didn’t make them become permanently weak people. In fact, all of these listed & more came out of their brokenness & trials stronger & more joyful than ever in Christ. They weren’t defined by their weakest moments. They weren’t defined by their brokenness.

So why was I calling myself all these things? Why did I believe my situation was so much drastically different than theirs? Why didn’t I feel the victory applied to me? Why was I holding myself to a literally impossible standard?

What if bad brokenness is healed by good brokenness? What if only the wounds of God can heal our wounds? Our suffering healed by His?

For by His wounds we are healed.

Just when I think it can’t get any more life-changing than this, Ann puts another, even more profound thought into my head: “We are made in the image of God & wasn’t His heart made to be broken to?”

In fact, isn’t brokenness the very heart of the gospel? Jesus’s body was broken on the cross for our sins. Jesus’s heart was broken as He cried out, “My God, My God why have You have forsaken me?” (Matt 27:46)

But what did Jesus do?? Jesus doesn’t defend Himself or hide His brokenness with distractions or cower in shame….He accepts His breaking as abundance. Through His very breaking, He gives us life.

In fact, the very heart of Christianity, communion, is the very result of His breaking. “& He took bread, gave thanks & broke it, & gave it to them, saying, “This is my body given for you; do this in remembrance of me. This cup is the new covenant in my blood, which is poured out for you.” (Luke 22:19-20)

He took the bread, His body, & broke it. He took the cup, His blood, & poured it out.

Bad brokenness is healed by His good brokenness.

“Somehow the miracle of communion…oneness, wholeness, abundance…it happens in the exact opposite…in the breaking & the giving. Somehow, the miracle, the intimacy of communion comes through brokenness.” -Voskamp

The miracle happens in the breaking.

So today, I’m just going to say it: I am broken & I am okay with that. God has shown me brokenness isn’t shameful, it isn’t a mark of weakness; it isn’t an automatic stamp of failure in your Christian walk. Brokenness is surrender, it is a shattering of my will, it is humility, it is abundance. God is breaking me so the power of Christ may be seen through me. He is breaking me to bring me closer to His heart. He is breaking me to make all things new.

“Because Jesus, with His pierced side, is always on the side of the broken. Jesus always moves into places moved with grief. Jesus always seeks out where the suffering is & that’s where Jesus stays. The wound in His side proves that Jesus is always on the side of the busted, broken, suffering, & wounded.”

So how in the world do we live with a broken heart?

I think I still have a little ways to go before I have all the answers. 😉 Who knows, I probably won’t get the answer in its entirety until I get to heaven someday. But for now, He has granted me the perfect response. He has shown me the miracle happens in the breaking.

So I am going to embrace the privilege of walking with Him in the Broken Way.

Psalm 51:7, “The sacrifices of God are a broken spirit; A broken and a contrite heart, O God, You will not despise.”

 

Chapter Six: Jesus is My Source of Strength

“A greater joy is preceded by a greater suffering.” -Charles Spurgeon

We finally had our diagnosis. I wasn’t crazy. God had opened doors & showed us His ultimate provision.

But where did we go from here?

Treating SMAS is very tricky. The main way to resolve it is by gaining weight to rebuild the protective fat pad. First, doctors will encourage the patient to gain weight on their own. Usually, as was my case, this is impossible, because by the time of diagnosis the intestine is chiefly blocked. Even though I received my diagnosis within a couple months, I was extremely malnourished, had lost almost 20 pounds, & could barely eat 450 calories on a good day. I had also developed a fear of both eating & not eating. I knew not eating was unhealthy, but I also knew the terrifying consequences of eating involved critical pain, nausea, & throwing up. But I knew the alternative was an NJ feeding tube, & I was going to do everything in my power to prevent needing one.

In the days after my appointment, I tried Pediasure & set a goal of 1000 calories a day…but the Pediasure made me more nauseated then ever & I barely made a dent in the calorie count. I tried & I tried as hard as I could but it was seemingly hopeless. #frustrating

One particularly alarming morning I woke up worse than ever. I didn’t move a muscle. I didn’t speak to anyone. I didn’t watch Netflix. I didn’t drink liquids. I didn’t make facial expressions or attempt to communicate. I simply laid in my bed. It was like my body was incapable of functioning at all.

I grew increasingly lethargic throughout the hour, so shortly thereafter I was admitted to UVA to implement step two: a nasogastric feeding tube.

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My parents & I had already talked about the looming possibility of a NJ tube. Honestly everything about it caused a lot of anxiety for me. I knew it was anything but attractive. I knew it would be unpleasant. I knew it meant acknowledging I was really, truly sick. I knew it meant admitting personal defeat & weakness. I knew it meant losing control. & I simply wasn’t ready for that.

Even with everything I’ve been through, the feeding tube placement was probably the absolute worst experience I’ve had to endure. I was told it would be uncomfortable, but not painful. I was told it would be quick…ten minutes or less. I was told it would be simple. But it was not.

A NJ tube goes in the nose, down the throat & esophagus, through the stomach, & into the small intestine. The reason why feeding tubes work as opposed to food is because they have the unique ability to deliver nutrients to the body past the blockage.

They wheeled me into a scary looking procedure room filled with scary tools & unfamiliar people. I laid down on the table & braced myself for the worst while praying for the best. I was shaking & terrified & extremely relieved they’d allowed my Mom to be with me.

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The procedure itself was extremely painful. I wasn’t given numbing or put to sleep. I was completely awake & alert & aware of every single unpleasant feeling & abnormality. I felt the long wire go into my nose & down my throat. I felt their fingers roughly forcing it down into my body. I felt my stomach awaken & acknowledge something very wrong & very foreign was entering it & try to reject it frantically. I felt panic arise fast & strong as I began to choke on my own vomit. I heard Mom frantically urging the doctors to roll me over so I could breathe. I felt SO frustrated everytime I vomited because it meant prolonging the torture. I heard the doctors wondering why it wouldn’t go through the opening & I remember wanting to scream at them to hurry up & figure it out. I felt guilty for thinking that, too. I remember breathing hard & praying to lose consciousness. I felt Mom trying to find ways to bring me comfort…touching my hair or arm & whispering loving things. I remember thinking how hard it must be for her to watch this. I felt the thick tube slide over the wire & wondered when it would all be over.

The procedure ended up taking about 45 mins. I think it was the longest 45 mins of both Mom & I’s life. I was exhausted by the end & just wanted to go home. I wanted to go back in time to before I was sick & before everything was crashing all around me. I wanted it all to be over.

I wanted to give up.

But thankfully, I couldn’t give up. My body tried its very hardest to reject the tube. I couldn’t talk because the tube rested on my gag reflex. I was very dehydrated & in a lot of pain. My heart rate spiked frequently & randomly & I twitched a lot in my sleep. I was too busy fighting every second to survive…to make it through each minute. That alone was taking all my energy & effort & there was no time to give up.

When I look back on that week & the events surrounding it, I remember darkness, fear, & pain.

Yet God was still so faithful to equip me with strength & joy while providing for my needs.

-Because I was paralyzed by the knowledge of what was to come, I focused my energy on being Christ’s light to the doctors & nurses. I tried to have a heart of gratitude for the mundane. I thanked them for performing their medical tasks & always tried to greet them with a smile. It helped I was blessed with an incredible medical team & quickly bonded with my nurses. They told me constantly I was their favorite patient & that alone brightened my heart.

-After the tube placement, I realized there is no better way to learn the valuable lesson of humility than with an unattractive tube coming out of your nostril & tried to laugh about it as much as I could.

-Due to those spreading the word to pray for me, I ended up making some of my current closest friends from a simple, “nice to meet you, I’m praying for you,” text message.

-Another family friend put together a surprise card shower & brought me baskets of encouraging cards written by sweet friends.

-Even though my feeding tube was my most hated nemesis, my family saw a drastically positive difference after just the first feeding. Edgar (aka Edgrrrrrr ;-)) was truly my lifeline & a critical part of my healing journey. I couldn’t have done it without him!

But one memory definitely stands out above all.

Our first morning home from the hospital I woke up & instantly knew something was very wrong. My throat was closing rapidly & I was unable to talk or even breathe. I was immediately seized with panic & froze in fear. My Mom was just about to call 911 when suddenly God stepped in.

I instantly felt all the prayers storming heaven on my behalf fill me & an inexplicable peace engulfed me. My throat opened, my breathing regulated, & I was comforted by Jesus’s faithful reminder that He had never left me & never would. He was walking by my side & would equip me with exactly what I needed to not just survive…but thrive. I knew in that moment it didn’t matter if I was strong enough…because Jesus is my source of strength & He is always strong enough.

& thank the Lord for that!

To be continued.