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. 

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.

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…..