Wrestling the Mystery - My Story, Part 2

The path from childhood to adulthood in America is a pretty tidy process. Each school year unfolds to another school year up the ladder of knowledge. When college graduation opens the door to adulthood, hopes are high, pockets are shallow, and dreams abound.

From countless discussions with 20-something adults I’ve concluded one of the greatest trip-ups for finding solid footing in adulthood is the stark shift from defined and progressive years to open-ended freedom. In our 16-ish years of education it’s easy to miss the value the progressive education plan serves in our lives. Adulthood heralds a life with no limits… and no pre-defined plan.

In the absence of a plan it often becomes easier to flounder. It often becomes easier to settle. It often becomes easier to lose the momentum in striving.

In this second part of the series on the story of my crazy health mess, I’ll unfold my walk in the wilderness…. A world with no plan. A world with no guardrails. A world with no direction. A world with no known achievable end goal. For those of you who read the Bible, this section of my story may feel like 40 years. The 40 years the Israelites wandered in the wilderness waiting for the promised land, except you nor I are after any promised land.

It felt like 40 years to me. Every single second of 40 years. Thankfully, it was only about three-and-a-half years between coming to terms with my reality and receiving an accurate diagnosis. I’ll share about details. I’ll share about strategies. I’ll share about my growth in grit. In this growth, I learned more than I’d learned in all my life before or after.

I am a different person because of this wilderness. I am so different, in fact, that I am learning a whole new “me” and how that fits into the world I live. This post tries to summarize for you what I learned in the wilderness. The depth and breadth is far beyond what I’ve captured here, but, over time, I’ll thread these nuggets through what I write.

I hope we see with new eyes because of what I lived in this wilderness. I hope we approach circumstances with fresh optimism and vigor because of it. I hope we draw greater strength from our past learnings because of this wilderness. This walk will be deep. Grab a life-jacket and wade in with me, if you wish. We’re a long way from shore.

I came to terms with my reality in spring of 2014, about 6 months after learning I was in over my head. I found myself stumped. Medicine offered no answers. My “push through” mentality fell apart as the symptoms continued to mount. I questioned myself at every turn.

We had been in the process of adopting. In fact, we were prepared and ready to meet our newest son the next morning when we found out the adoption fell through. We had raised money. People had donated in good faith that we’d see this plan through. It all screeched to a halt. I broke one of the biggest promises of my life and haven’t yet made it right. Breaking this promise may well be the cardinal sin to me. God and I continue to wrestle about this one. But, back to this dream in my life…

I had wanted to grow our family through adoption since I was 8 years old. It is one of the deepest and truest parts of my dreams. I wouldn’t date anyone who wouldn’t adopt children. I wouldn’t consider a life without a multi-cultural family. I planned financially for adoption since the moment we married. It was EVERYTHING to me... Then it was nothing. It became nothing because God said “no.” No explanation. No contingency plan. No visibility whether this would ever be possible.

I had crossed the river of coming to terms with my realities and found myself on shore in a new land. I looked into the horizon and didn’t see anything familiar. Upon entering this new reality, I had to shed everything that didn’t serve survival in that wilderness. I sat on shore with my husband, my two kids, Bible verses I had memorized in Awana as a kid, and a severely broken frame (body and mind). I left behind things that defined me. I left behind things that gave me significance. I left behind dreams. I left behind the familiar. I left behind assumptions about life.

So, now what? I had millions of choices to make. Some of the most significant answered these questions… What would I grieve over? What would I hold onto most dearly? What were my priorities? Where would I invest my meager energy? Who would I trust? How would I find a path forward?

There were lots of questions without answers yet … Would I survive? At what cost? How long would this last? What’s on the other side of the wilderness? Would I see the other side of this wilderness in this life or in eternity? How miserable would the wilderness be?

On lots of days I got hung up on the questions without answers. I wrestled with God about these questions. I questioned His goodness. I questioned His choices. I questioned His kindness. I questioned His love for me. I questioned all the dreams and plans I had for my life that I thought He had given me. I questioned what He said about Himself in the Bible. I questioned His “promises” in my life. I questioned how cultural Christianity understood the Bible and God. I questioned which of my beliefs were cultural and which transcended all cultures… because anything that’s really true about the Bible must transcend all cultures.

Battling God was a daily part of my life. I battled Him deep in the night when symptoms raged and I begged for relief, even if it required death. I battled Him as I crawled to the bathroom or dared to put another bite of food in my mouth. I battled Him as I fell asleep with the world spinning and woke with nausea overflowing. I battled Him when I lost vision in my left eye for 6 months. I battled Him when I watched my kids play and grow around me, but felt a million miles away from their life. I battled Him when I resented everything that was happening.  

In all of my wrestling with God about the spiritual dimension of my experience, I had to face the physical dimension. I could continue to sleep, eat, and barely survive. Or, I could try to find a path forward. I’ve always been a whole lot scrappy and intolerant of broken circumstances. I’m a fixer. So, I set out to fix.

A diagnosis would have been gold. I would have done all the things one is supposed to do and I would have gotten better or manageable. Or be able to explain why I wasn’t improving. Without a diagnosis, my path forward looked a little like playing hide and seek in a field of land mines.

I read about anything I could find about all of my symptoms. I read about conditions that coincided with my symptoms. I’d take those conditions to doctors and ask about them – they loved that. I read about how to alleviate those symptoms. I read what Mayo Clinic said. I read what blogs said. I read what natural news sources said. I wasn’t discerning; I was desperate. If they said to drink chicken broth, I drank chicken broth. If they said to drink salt water, I drank salt water. If they said to sleep, I slept. If they said to eat organic, I ate organic. If they said to monitor my heart rate, I monitored my heart rate.

Over the years I dumped all plastic in my kitchen, I unloaded all chemicals from my cupboards, I stopped dying my hair, I eliminated wearing makeup, I threw away all beauty products, I ate only organic food, I drank 120 ounces of water each day, I went gluten and sugar free, and I drank plain kefir – yuck. All of these things listed here helped me, noticeably. I tried a million things that didn’t help me… I’ll spare you. There were two things that, together, changed my life. They were hard. They taught me more about myself than I ever wanted to know and gave me my life back. My relationship with these two “things” is deeper than most people-relationships in my life. Let me explain.

The first to be discovered was green juice. Green juice is a general term describing a drink that includes enough green vegetables that its color is green. It could include any combination of ingredients, as long as enough green vegetables kept it green. Attempting this drink was a massive undertaking.

See, through this time in the wilderness, my husband’s income dropped 50% because he got promoted. Yes, because he got promoted. That’s what happens in a sales company that has an ok compensation plan for its people. His income dropped, my healthcare costs were higher than ever, and my expensive master’s degree was nothing more than a memory. Brain damage stole that education from me and I could not help supplement his lost income.

Green juice requires special equipment and, at the time, a person could not buy green juice at a restaurant in our city. Therefore, I couldn’t test this idea before committing. If I was going to try this thing that I nor my family had ever heard of, then I had to go all in. Going all in back then required a huge amount of money. Cheap juicers were cheap. And I needed this thing to work all the way, so we went with high quality machinery. We went big with money we didn’t have while hoping this might change our lives. In a beautiful twist among all the failures surrounding us, our risk paid huge dividends. We won on this gamble and I proceeded to drink green juice every single day for 3 years.

It took a while to discover the exact perfect recipe for my cranky body. Once I figured it out, I never missed. A few times when I missed I lost big ground; the pain was not worth the ease of skipping a day. My husband referred to it as sludge. That sludge transformed my life and I am deeply grateful to kale, spinach, lettuce, cabbage, and a few others for single handedly giving me stories with my kids, playing at the park, and a returned ability to comprehend things happening around me.

This green juice required 30 minutes EVERY.SINGLE.DAY to make and clean up. All ingredients were organic and spoiled quickly. I could never run out of even one ingredient, so the grocery trips were like clockwork (this was long before clicklist). The mental and physical effort required to maintain this activity was enormous, especially for my physical condition at the time. I had a deep love/hate relationship with green juice. It gave me life and yet took so much from me at the same time.

The second “thing” that changed my life was running. Before getting sick, I had never run a mile in my whole life (except those dumb presidential physical fitness tests in school). I have never been athletic and never desired to change my abilities in this area. This fact about me, written in stone, got shattered at the most unlikely time. See, when we find ourselves with our back against a wall and no way out we find things in us we didn’t know existed.

At the time when I decided to start this trek of making myself walk, I could not walk up the stairs more than once a day. If I were to attempt something as preposterous as walking up the stairs a second time in a day my body would declare mutiny and I’d be laid out from denying its commands. My heart would race. My fever would rise. My limbs would go limper. My head would spin uncontrollably in dizziness. If I needed to ascend, I had to crawl. So, I crawled with my baby in my arms. I crawled with bits of laundry in tow. I crawled with a book in a bag on my shoulder.

I finally declared war on my body and pressed it to its limit in the form of walking every single day. The first day I tried this activity I wasn’t sure what to expect. It was tortuous. But, I detected a slight improvement in the nausea and dizziness in spite of the misery. My .03 miles of that first day was monumental. It was the start of a new life for me. That .03 miles changed the course of everything. I walked the next day, then the next. Like the green juice, if I skipped a day my body was back at ground zero. It required a daily commitment to maintain the gains I was starting to build.

Each day I’d attempt to walk a few more steps than the day prior. Some days I succeeded and some days I didn’t. But, over time my capacity to walk grew and so did my quality of life. In our financial strain, we bought a double jogging stroller so I could take the kids out and get a little sunshine with them. So, my short walks had the weight of 2 toddlers and the struggle of assembling and de-assembling that monster stroller every day. I felt like I was a beast to accomplish so much. At first it would wipe me out for the whole day. Over time, my strength grew.

As my distance and strength grew through those walks, my spirits lifted. One day I was walking, and then I was running. I don’t really know what happened. I can take you to the exact location this happened. My kids peeked around the sides of the stroller and looked back at me confused. They asked if I was running. I couldn’t answer them because I was so winded. But, I wanted to scream “YES!” I wanted to tell them of their mommy’s accomplishment and how they’d never, ever be able to tell me an excuse for why they couldn’t do something hard. I wanted to hug them for joy that I had crossed this milestone and that I was still their mommy. I felt like I had conquered the world.

You’re probably laughing at me right now. You’ve got this visual of this crazy young woman at a park near your house that looks as fit and normal as any other human being, but she starts crying while she’s jogging pushing these 2 toddlers in a stroller bigger than she is. Go ahead and laugh. This scene was every bit as humorous as you are imagining. If only those people passing me on their leisurely walk knew how life changing that moment was for me. From the day of my first .03 miles to the day I took my first running steps was nearly a year. That trek was long, complicated, and excruciating.

Two miles became my magic number. If I ran more than two miles I felt like death. If I ran under two miles I felt like death. So, I ran two miles a day. EVERY. SINGLE. DAY. For almost three years. With or without a fever, I ran. Puking or not puking, I ran. Dizzy or not dizzy, I ran. Christmas or July 4th, I ran. There was never an excuse worth it.

My relationship with running became love/hate also. It was mentally and emotionally treacherous to face every single morning knowing I must answer the call to don my running shoes. I never got to choose. I was slave. I was slave to the beast living inside me. I was slave to green juice. I was slave to running. I was slave to fighting to stay alive for my babies. For a girl who believed in ideals at one time in her life and lived every day fiercely independent, being slave to these things was nearly my undoing. I would cry while I made green juice. I would cry while I laced my running shoes. I would cry when I missed going to church or an event I wanted to attend because I couldn’t drag myself out of bed early enough to answer my master AND do something I wanted to do. These things owned me. While they gave me life, they took SO MUCH LIFE from me. How is it possible to love and hate the same thing so fiercely?

By the time I had discovered the significance of green juice and running in my life I had discovered I could only safely eat about five things. And drink water. That’s it. No fruit. No meat. No sugar. No coffee. No tea. A few vegetables. A few carbs. And eggs. I lived for 2 years on this diet. To say I hate food would be one of the greatest understatements of all time. I loathe food. I detest food. If I could consume a pill and never have to eat again I would jump on board every day of the rest of my life.

Food is supposed to sustain. It nearly killed me. Food is supposed to be enjoyable. It created enormous misery for me. Food is supposed to be achievable and predictable. It was more complicated and risky than any field of study on the planet. I was a living science experiment. A single bite could change the course of my day, week, or month. I never chose anorexia; I subconsciously thought I probably wouldn’t survive that decision. So, I ate. I faced my nemesis three times a day. To be away from home and eat was almost impossible. To be home and eat could change everything if something went wrong. The unpredictability was scary and maddening. Again, another master to which I was slave.

Eventually, the green juice/running strategy gained significant ground. The meager diet was just enough to keep me alive. I didn’t weigh much. I looked ghastly. But, I could show up for short sessions with my family. And that meant EVERYTHING. So, I pressed on in reliving each day like it was Groundhog Day. You remember this movie, the one where you do the same exact thing every single day until you finally learn the lesson. I was in the wilderness and felt as though I was living the same horrible day every single day. I cried for the lesson I was missing. If only I could just learn that darn lesson.

God’s answer to this madness was manna. If you’re not familiar with manna, it’s the food the Israelites ate in the wilderness. It didn’t taste good. It wasn’t enjoyable. Nobody wanted to eat it. But, it sustained them for 40 years. It rotted overnight and He provided it new every morning. This was my life story for these years. My green juice/running benefit dissolved overnight. If I didn’t do it again the next morning, I’d crash. They were my manna, and they were just enough for today. His strength was my manna; He never gave me enough for more than one day. Some days He provided only enough emotional and mental strength to get through a few minutes at a time and other times enough to get through the day. With my heart swelling in thankfulness, I am willing to shout from the roofs that His manna sustained me. I carried nothing into the next day, and yet He carried me.

It’s rare someone has the deep privilege of knowing the nearness of the Lord as closely and as daily as I experienced. His gentleness and steadfastness with me is not lost on my soul. I’m thankful I can share it with you here. I hope you will open your mind to Him a bit more because of how He showed up for me. I hope you will consider His place in your life a bit deeper than before. Back to the journey with green juice and running…

The discipline required to keep this pattern of living put my disciplined soul to the ultimate test.

Before this experience I thought I was gritty. I thought I was disciplined. This pressed me into new spaces. As I cut the vegetables every day, as I laced up my shoes every day, as I ate cucumbers AGAIN, I wondered if I’d still be living this same way in 10 years, 20 years, or more. I couldn’t see an end to this rhythm. I couldn’t see how things could change. My heart faltered. Time and again my heart faltered. I despaired that I’d ever eat another food again. I despaired that I’d ever be free of my running shoes again. I despaired that I’d ever be able to stop cutting green vegetables again.

My husband despaired too. What if he never saw the wife of his wedding day again? What if the dreams he had for our life were now unraveled because he pledged his life to me? What if he had to carry me and the kids for the rest of our lives? What if he had to keep dumping more money than our mortgage into our groceries in order to keep me alive? What if he had to endure my hours each day of silly activities (green juicing/running) for the rest of our lives? What if he had to keep ordering his life around my crazy life forever? He asked all the questions. He wrestled too. This wasn’t just about me. This was about him too.

Could I be trusted? What if I was exaggerating and he had to bear the weight of my foolishness? What if he never saw me smile again? What if I could never stand up for a proper hug again? What if he could never have another adult conversation with me about something enjoyable? Was I worth it? Were his marriage vows worth it? Was our family sticking together worth it? No matter any outcome?

His questions rang loud in his head and heart. He couldn’t bear to talk to me about them at the time. He was afraid it would be too much for me to carry with everything else I was fighting through. Whether his approach was right or wrong is negligible. What matters is that he stuck with me. He served me. He supported me. He loved me. He gave me space to be worthy of his love even if I never produced another meaningful thing in his life. He loved me for my existence. He showed our kids the real meaning of marriage vows. He showed them how a man is a real man for his family by taking responsibility and showing up. He showed our kids how to trust me. He wasn’t perfect, but I can imagine no other man who would have done as beautifully as he did.

This topic of his involvement is an entirely different dimension of our story that I’ll eventually explore deeper. For today, know its existence. Know this will return in a different form in the future. Know that this dimension mattered deeply. It’s hard to stay on the main path with so many good rabbit trails to take. Forgive me. Back to the main path…

When we are in the midst of heartache that carries on and on and on it can be difficult to see how life could get any better. The road appears to stretch forward in a straight and endless path beckoning you to nothing more than this meager and miserable existence. That was a hard place to be. My soul cried wishing for a better life, while my brain screamed at it to be thankful. See, I had come so far. I never thought I’d ever have that much quality of life again while still not knowing what was wrong. I never thought I’d be able to take my kids to the playground at the park. Here I was living the dream. And yet I wanted more.

Have you ever found yourself in a situation like mine? On one hand, you have so much to be thankful for, how could you possibly wish for more. And on the other hand, you are missing so much because things are so broken that your heart wants to melt and your brain wants to just give up. If you’ve never been there, congratulations. I am so deeply happy for you. If you’re like me, then you must face this reality and decide what to do with it.

This was growing in grace. The grit grew in the discipline with running and green juicing. The grit grew with surviving the mental journey. The grit grew with eating food three meals a day in all of its misery and unpredictability. The grace grew in how my soul responded to the circumstances that unfolded. You already know I had a love-hate relationship with green juice and running. I needed to give grace to these companions. I was mostly disconnected from society, so I needed grace for the people that had stayed in my life and those who pulled out. My steps were meager and my advancement was slow. I needed grace for myself on this road of steps backwards and forwards. I wrestled the living God. I needed grace for myself and to receive grace from Him in this fight.

There are SO MANY more events and details I could tell you about life in this wilderness. There are SO MANY more mental and spiritual learnings I could share with you as my path unfolded. I suppose that’s why this blog exists. Over time I’ll get to these learnings. Don’t worry, it won’t be as long as this has been today.

Thank you for staying with me. I appreciate your company. If you’ve made it this far, you are as excited as me to get to the next part – the Diagnosis. The diagnosis starts to put a bow on this unruly story. I’m excited to share with you the miracles in that season of my life.

Before then, we’ll take a break from this long story and chat about other topics that are lighter and shorter. I hope you’ve picked up a few tidbits about growing in grace and grit. If you have, please shoot me a note. I’d love to hear about it. Until next time.

blessings,