A couple of months ago, I traveled to Europe with three of my favorite people…where we joined another one of my favorite people, Marcus, for an adventure of a lifetime. Some adventures were awesome…and some…not-so-awesome. But today I want to talk about a day that was a whole LOT of not-so-awesome. Wednesday, May 3rd, 2012. This was the day I took a 2 and a half hour ferry ride across the Adriatic Sea. It was the day I was almost broken by a green monster. It was also the day I learned about my rage…and Abba’s mercy.
By now…if you’ve been reading this blog…most of you know that I was recently diagnosed with a rare digestive disorder called Cyclic Vomiting Syndrome (CVS)…or as I like to call it, Cyclic Bite-Me-You-Mean-Stupid-Life-Stealing-Fun-Killing-Uglyhead Syndrome. (If you want some fun reading, I invite you to google it…of course, you should probably google CVS and not CBMYMSLSFKUS. Cause I just made that one up. Heh.) Needless to say, whenever the Uglyhead comes calling…I morph into a barely-there human. Unrecognizable…as all of my joy, humor, and personality are sucked out of my body…replaced by extreme suffering, dark circles and green skin. Almost like the Hulk…minus the bulging muscles.
The best way to explain CVS is to relate it to a migraine. Researchers think it manifests in the part of the brain where the nausea receptors live. It can strike at any time…with a whole range of triggers. Some of the triggers can be mitigated, others cannot. Over the last year, as the list of triggers gets longer and longer…the list of things I can no longer do gets longer too. I hate this list with all of my being…but it has become my new reality. Here are some of things that turn me into a green monster:
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| No, seriously. Be afraid. |
1. Eating too much. Or eating anything delicious and fun.
2. Eating too little. This one gets me a lot…because eating and nausea are not friends.
3. Being tired. Sometimes even just the normal not-getting-8-hours-of-sleep tired.
4. Being overexcited. I mean, really…have you met me? I get excited about everything.
5. Stress. Not necessarily big stress…but sometimes “oh, hey…I lost my keys” stress.
6. Heat. Which is hard to avoid in the Missouri summers.
7. Aunt Flow (Men, you may need to ask a girl about this one).
8. Breathing. Standing on one leg. Walking across a room. Sitting still.
9. And…my personal favorite…going to Europe.
Fade in…European Dream Vacation…
Anna Banana Feagans and I had been dreaming and planning our European vacation for what seemed like years. Two BFF’s with a dream and a money jar…longing for an adventure. We scraped and saved, forfeiting salon visits and new shoes in the pursuit of a trip of a lifetime. And after several generous donations and a RECORD breaking garage sale…we bought our plane tickets and reserved our hotels. Then…BAM…I got crazy sick. Trip postponed. $700 lost. Curses.
One day, as I was laying on my mother’s couch…40 pounds thinner and still no diagnosis…we passed the time by dreaming about Europe. Bernie, my mom’s BFF, was there…she drove up from Dallas for a week to take care of my caretaker. All four of us were hanging out in the living room, when all of the sudden…I had an idea. What if we ALL went to Europe together? Two generations of BFFs? Well, once that idea took hold…we couldn’t shake it. After I started feeling better (thank you Dr. Schiller), we started round two of dreaming, planning, and fundraising. Hell or high water…I was going to get my dream vacation.
One day, as I was laying on my mother’s couch…40 pounds thinner and still no diagnosis…we passed the time by dreaming about Europe. Bernie, my mom’s BFF, was there…she drove up from Dallas for a week to take care of my caretaker. All four of us were hanging out in the living room, when all of the sudden…I had an idea. What if we ALL went to Europe together? Two generations of BFFs? Well, once that idea took hold…we couldn’t shake it. After I started feeling better (thank you Dr. Schiller), we started round two of dreaming, planning, and fundraising. Hell or high water…I was going to get my dream vacation.
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| Old BFFs |
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Young BFFs
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I am convinced beyond a shadow of a doubt that Abba wanted us to go on this journey together. Even more…all four of us had many Divine encounters that confirmed this. We had several anonymous cash donations. Miraculous healing. Seamless trip planning. Beautiful weather. It was like God was extending His hand to us saying, “Come, Girls…let’s go play together.” We were prayed up and ready to party.
That’s why I was convinced…CONVINCED…that I was going to get a pass on my CVS. I just knew…deep down, that I was going to have two weeks of blissful health and “the Hulk list” would be temporarily suspended, so I could delight in all of the things that I’ve been denied. I mean…why would Abba take my hand…fly me across an ocean with my favorite people…and NOT protect me from illness? No, I knew Him to be sovereign. He was going to protect me. Other than 5 tons of medication serving as a constant reminder, I planned to completely forget about my broken body. And then, when I got home, I was going to tell the world about His goodness. It was going to be EPIC.
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| We make plane rides look goooooood. |
The first week in Europe confirmed my unwavering faith. I had boundless energy. Despite several long plane rides and crushing jet lag…I felt amazing. Not even a whiff of nausea (well other than the taxi rides in Rome…but even the stoutest of dispositions can’t survive a Roman taxi ride unscathed). I got to see and taste Italy…Rome, Ancona, and a day of Venice. We laughed, argued, ate, explored, drank wine…and then ate some more. Yep, I was definitely one of Abba’s favorites. This was confirmed by the mind-numbingly BEAUTIFUL Pietro…the Innkeeper who greeted us at the front desk of our Venice hotel. Siiiiiigh. I mean, why would God put Pietro in my path, if He didn’t want me to enjoy His creation? I’m just sayin…
When I woke up the second day in Venice, I knew this day was going to be different. Something wasn’t right. But as I got dressed and ready for a second day of exploring, I doggedly ignored the nausea chewing on my stomach. No. Absolutely not. I was going to will it away. It was only the enemy trying to scare me. Abba was going to protect me. I was convinced. Less than an hour later…on the crowded streets of Venice…I knew I was wrong.
Fade in…present time …
Do you know what I hate the most about the life-stealing-fun-killing-uglyhead? I have to take back every mean thought I’ve ever had about people with chronic illness. This confession isn’t flattering, I know. How could I harbor mean thoughts about someone who is suffering? Pretty easily, actually. I thought that life is what you made of it. All those sick people just needed to buck up and live life! Or better yet, get out of their heads…go sit in the sun…pray for healing…get out of the house…immerse themselves in something useful…DO something to feel better. And, for pete’s sake, stop using it as an excuse to stop living! I know, right? The inside of my head was like a cheesy, motivational poster. I have since stabbed that inner voice repeatedly in the heart. Die motivational poster…DIE!
Above all…I hate my illness because it has stolen my misguided sense of control. You see, I’ve always harbored the secret belief that everything in life is up to ME. And now I’ve been handed a chronic condition that proves just the opposite by ruthlessly morphing me into a woman I barely recognize.
Fade in…Day 2 of Venice, Italy…
I was standing on a crowded cobblestone street when the first wave of nausea smacked me in the face. It was a national holiday in Italy…so, there were droves of people everywhere. Happy people. Laughing. Chatting in rapid Italian. Eating gelato. BAM…another wave of nausea. I remember hurriedly cleaning out one of the shopping bags I was holding in preparation for potential yarfing. I couldn’t breath. No, this couldn’t be happening. The Hulk was back. Father…where are you?
We had checked out of our cute little boutique hotel (Ciao beautiful Pietro!) and planned on spending the day shopping and site-seeing until catching a 5:00 pm ferry to Croatia. There was a Gustav Klimt (one of my favorite artists) exhibit in the Correr Museum on St. Mark’s square. I woke up giddy with anticipation…I couldn’t believe that I was going to be able to see some of my favorite paintings in freaking VENICE, Italy! But as I stood in the middle of a crowded street…clutching a plastic bag …I knew that I wouldn’t get to see Klimt in Venice. I knew I wouldn’t enjoy any more site-seeing. I silently slipped into survival mode as my mom and friends led me back to the hotel.
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| Goodbye Klimt exhibit. |
To be honest, I don’t remember much from the rest of the day. I was forced to take a pretty intense cocktail of drugs to try to keep the nausea at bay (hey, that rhymed). The hotel graciously let me crash in our vacated room for a couple of hours until they had to clean it for the next guests. Then I had to move to the now empty breakfast room where I spent hours sitting in a chair with my head on a table. I was vaguely aware of occasional voices as Anna and my mom took turns watching over me. Apparently, Pietro was very concerned and came to check on me. (Anna was delighted to have the opportunity to chat with him…you’re welcome, friend.) Needless to say, this was NOT how I imagined Venice. Father…where are you?
Fade in…present time…
I admit. When the Uglyhead comes calling, I spend a lot of time feeling sorry for myself. I’m no Job…that’s for sure. On some days, when I’m lying in my bed…in a medicated stupor…it’s easy to believe that I’ve been handed a really raw deal. Sometimes Abba feels very far away when extreme loneliness claws at my heart… as I’m forced time and time again to escape into the deep oblivion of survival. But I’m not writing this story to invite you to join my pity party. In fact, my intent is just the opposite. Yes, the Uglyhead is my new reality …but it is not my identity. Yes, I don’t have control over my life …but I still have a choice of how I’m going to live it.
Fade in…the Port of San Basilio, Venice, Italy…
After a short and EXPENSIVE private water taxi ride to the port, we stood at the ferry counter, staring in abject horror, as the ticket agent explained to us that the Ferry wouldn’t be running that evening. What was to be a quick 2.5 hour trip across the Adriatic Sea to Rovinj, Croatia…would now be a 4 hour trip around the coast in a cramped minivan with strangers. Given my state of misery, this felt like a worst case scenario. I swallowed more pills and my mom handed me an empty pretzel bag. I escaped to the deepest recesses of my mind as I prepared, once again, to survive.
The rest of the week is somewhat foggy. I remember thinking that Rovinj was an enchanted village right out of the pages of a fairy tale. I didn’t realize places like that still existed in the world today. Narrow cobblestone streets, fishing boats, an open air market, fresh bakeries at every corner, and the most majestic sunsets I’ve ever seen. But, I only caught glimpses of these things as I faded in and out of misery. I spent most of the week in bed.
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| A beautiful Rovinj sunset |
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| This place really exists. |
Finally, May 3rd arrived…the day we were going to leave Rovinj and catch the ferry back to Venice. It was running that day, thank the Lord. We dragged our ten tons of luggage to the porter…and climbed to the second floor VIP section of the boat where there was a picture of the Pope who had once sat in the very place we now found ourselves. Ahhhhhhh. We’re going home.
Fade in…present time…
I’ve been a Christian for a long time. I actually celebrated my 30th re-birthday this week…because on July 2, 1982, with the tender acceptance of a five year old …I invited Jesus to come live in my heart. You would think by now I would be able recognize God’s mercy. Granted, even as a five-year-old, I understood the profound mercy of Christ’s sacrifice on the cross. But until this year, I don’t think I’ve really understood how that looks in day to day living.
Fade in…Wednesday, May 3rd…on a Ferry somewhere on the Adriatic Sea…
About 15 minutes after we hit the open waters of the sea, I knew that even after a week of suffering…I had yet to reach the pinnacle of my misery. I can’t really put words to that Ferry ride. Other than one day last year when my mom rushed me to the emergency room…I have never been that profoundly nauseated. About an hour and half into the trip, I remember contemplating jumping overboard. Anna handed me one of the barf bags stashed in the seats of the Ferry. I swallowed more pills and literally begged God to take away the misery. I’d been here before…and I knew if I started to vomit, I wouldn’t stop…for a very, very long time. Once again, I closed out everything around me and chanted over and over in my head “Please, God. Please. Please, God. Please.” Where are you?
Eventually, we landed at the port of San Basilio. But, unfortunately, we found ourselves on a floating city…with the prospect of yet more water transportation ahead of us. After we made our way through customs, Anna overheard a little Italian man asking if anyone needed a taxi. A real taxi. With tires. A minivan…big enough to fit our luggage. So, after a short 15 minute ride to our mainland hotel, I crawled into bed and sank into a deep sleep. I hadn’t vomited…the pills finally kicked in.
That evening, on our last night in Europe, we all sat around in the living room of our hotel room talking about the Sabbath. Mom and Bernie had prepared some fun things to do to celebrate the Sabbath while in Rovinj, but because of illness…we never got around to it. As mom talked about the faithfulness of God, I felt a deep rage boiling within me. It had been there for months…but this felt like the last straw. It felt like I had been betrayed by the God who I had trusted with my deepest desires. I couldn’t keep it inside anymore…and as my mom and friends sat next to me, I wept. And then I wept some more. Why would the God that I’ve served since I was five…deny me the ability to enjoy His creation? Why would He tease me with a feast of Klimt exhibits and sunsets…if He knew I was going to get sick? Two weeks…that’s all I’d asked for. But, I had not gotten a pass. I didn’t get to forget about my broken body. He had not protected me. Once again, I was forced just to survive. I was weary of surviving. My heart was broken.
Fade in…present time…
I have read the Psalms many times. To be honest, I always thought David was a wee bit melodramatic. Flood your bed with weeping? Your couch drenched in tears? Your tears are your food day and night? Really? Come on, David…suck it up. But today Psalm 42 resonates in a painfully familiar way. It reads almost word-for-word like the inner voice that has been on repeat in my head since I got my diagnosis:
I say to God my Rock, "Why have you forgotten me? Why must I go about mourning, oppressed by the enemy?” My bones suffer mortal agony as my foes taunt
me, saying to me all day long, "Where is your God?”
After a 24 hour day of mind-numbing airplane rides and layovers…I eventually made it back to my bed. And my dog. Since getting home, I’ve been visited by the stupid-uglyhead several times. There has been no magic cure. There is no storybook ending. But as the days pass, and I get further and further away from the misery of my European dream vacation…something significant has floated to the surface. Something life-altering, in fact.
On May 3rd, 2012…on the ferry ride from hell…I didn’t throw up. The barf bag…never got used. I didn’t throw up.
To some, this may seem like a small detail in a story rife with misery. But for me…it brings tears to my eyes. I didn’t throw up. He heard my cries. Despite a petulant daughter’s heart full of rage…He faithfully carried me across the Adriatic Sea. It means even as I was accusing Him of betrayal, He didn’t abandon me. It’s a small, significant moment in time that proves beyond a shadow of a doubt…that the God who feels so far away, was holding me through my suffering.
You know, I may never know why the Father didn’t give me a pass in Europe. I may never know why He hasn’t cured me from a vicious chronic illness. I would be lying if I claimed that I wasn’t still a little bit angry about both of those things. No, I still struggle…almost every day. But now when I look back at the story of Europe…this is what I remember:
He gave me one week of unfettered health to explore a new country with some of my favorite people. He provided a kind innkeeper who let me rest away from the chaos. He knew I couldn’t handle a ferry ride across the sea on the first day of the Uglyhead, so He provided a minivan to drive me to Croatia. He knew I was going to be sick, so He held off the worst of the nausea until I could rest in a cozy little apartment. He gave me a little Italian man to drive me in a taxi…because He knew I couldn’t survive another boat ride. He gave me my mom and best friends to watch over of me. And, most of all, He carried me across the Adriatic as I clutched a barf bag and cried out for mercy.
Why do I tell you this story? Heh…I’ve asked myself that question many times. The truth is…it took me a really, really long time to work up the nerve to post this blog. You see, I’ve spent most of my life cultivating a reputation of carefree independence. When people look at my life…I’d prefer they see an image of a spiritual Zena Princess Warrior. But now the gig is up…as you can see, I’m just raging green monster who clings to faith with a gallon of desperation…and a thimble of hope.
No, I finally got up the kahunas to write this blog because I know I don’t have exclusive rights to suffering. I imagine there are many of you out there who feel like you've been set adrift…buffeted by life…begging for mercy from a God who feels far away. My hope is that by telling my story you’ll be able to catch glimpses of mercy in the midst of your struggle. Because the moral of my story is…even though my couch is often drenched in tears…even though I’m sometimes forced into a dark place of survival…even though I didn’t have the European vacation of my dreams…He hears my cry for mercy. Despite my unbelief…Abba is near.
Which is why that unused barf bag is one of my most treasured keepsakes. It is now displayed in a shadow box…hung on my wall…with a verse to remind me that I am not forgotten:
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| The Barf Bag of Mercy |
I love the Lord, for he heard my voice; he heard my cry for mercy.
Because he turned his ear to me, I will call on him as long as I live.
Because he turned his ear to me, I will call on him as long as I live.
Huh. What do you know…I ended up telling the world about His goodness after all. High five, Rock of Ages…high five.
