This is it. No more coasting. No more allowing life to happen to me. It's time to take the bull by the horns and steer myself in the right direction. In any direction. And to be clear, I am very much calling myself The Bull.
My body has been my one hellish companion my whole life. Uncooperative. Always causing pain. My brain thinks I can do things then my body retaliates with violence. There's a long sordid history and a lot of deep water under the bridge when it comes to me and my body. And that's just the way I've always seen it: there's me, and there's my body. I've never seen us as a match made in heaven. I'm starting to see things differently, though, like maybe we were made very much in heaven, with a purpose. Sure, God tells us that in Psalm 139. But to know something and believe in it are two different things. It all started when I was a teenager. I was always somewhat sickly. Born three weeks early during a blizzard, my mom told me it seemed like I was born with a cold and had one all through my childhood. I was always getting sick. As a young teenager, I started having weird allergic reactions to food. I started getting asthma and terrible hayfever, bronchitis, and sinus infections. Foods kept dropping out of my "safe list". I didn't realize it at the time, but my immune system was acting up against me.
At some point in middle school, I had a very serious illness with a high fever that wouldn't break. I was delirious with fever for over a week. One night, I got up out of my bed in a fever-induced sleep walking episode. I made it two steps out of my room and passed out cold on the hallway floor. Next thing I knew, I was in bed with my parents sitting by me looking worried. My fever had apparently broke. I believe that illness may have been the trigger for what would later be diagnosed as Systemic Lupus Erythematosus (SLE).
Freshman Year of High School, 1993
It's the beginning of my high school experience at a new school. Stress levels are high. I'm insecure and intimidated by the expanse and prestige of the school. My last school was a brand new school that my parents helped to found and it had very small classes because it was still new. I loved middle school. But now, there are so many people. I learn to navigate the halls and figure out where my classes are. My brother was popular and handsome and everyone loved him. He was a senior and here comes his dorky little sister. I have zero sense of fashion in my used clothes and feel completely out of sync with literally everyone. My best friend went to a different school. And we didn't have cell phones to text each other all day.
I'm sitting in class scratching my legs. At first, I think nothing of it. But the more I scratch, the worse it gets. I'm wearing white tights. (It was the early 90s, guys, but also, no sense of fashion, remember?) I look down and can see the hives through the tights. I looked at my hands and arms covered in big red welts and ran out of class. I went straight to the office and asked to call home. I could feel them on my face and neck. There was no way I was staying at school with a hives breakout! It had happened before, periodically, but we couldn't find a reason for it. Doctors knew nothing about the immune system back then.
Senior Year of High School, 1997
I was 18 years old sitting in my messy bedroom. I haven't ever been a particularly neat person when it comes to my room. There are far more interesting things to do than clean. I would get started in one corner and immediately spot something shiny and my task was completely forgotten. My room was my safe place. It was where I spent hours escaping this world into other worlds through books and encyclopedias and kid magazines with stories and fun facts and puzzles. It was where my overactive imagination took hold and I could live another life. It was where I cried and prayed and thought... A lot. Depression became a very real thing in high school and my room was my sanctuary. I'm finally about to graduate high school and had already decided to take a year off from school since schoolwork really never came easy for me and I had no money to pay for it. I loved kids and I loved the school setting. My plan was to be a missionary teacher. I was going to be a missionary and I wanted to teach kids. The plan to get there was to join missionary friends in the Philippines to help them in their school and with their kids. They were ready for me. I was excited to go. But it wasn't to be.
I had a few significant injuries in high school that really messed up plans for me. I was supposed to go to Mexico with my youth group. I went to all the fund-raisers, sent out letters. I had enough to go. I even had a ticket in my name. But a few weeks before the trip, I had a little klutzy accident that punctured my kneecap and ruined any chances of doing anything exciting that summer. My dad came into my bedroom and told me the story of Paul and Barnabus and how they couldn't agree about Mark joining them and in the end, they split. Somehow that led to him telling me that I couldn't go to Mexico on crutches and my sister was going to go in my place. They would change my name on my ticket to hers. And that was that. I was devastated.
My knee took longer to heal than expected and I was in PT for a long time. They tried shockwave therapy on my knee which was cutting edge therapy for the times. I was supposed to go to the Philippines at the end of the summer and things were not looking good. I didn't have my ticket, wasn't sure I would be able to fly to the other side of the planet on my own, and didn't have much money. I didn't need a lot. But my life was taking a drastic nosedive and I didn't have much to grasp onto.
My life continued to plummet for the next couple of years. I basically turned away from all of my previous convictions. If I wasn't good enough to be a missionary (the so-called "parallel" story that my dad thought might bring me comfort about John Mark not being good enough for the Apostle Paul...), I mean, that was two missions trips that I was prevented from, then what good was I in the kingdom of God? I had no direction. My hormones were raging and making me crazy depressed. My immune system was attacking me. I'd never been out in the world before. I'd lived a pretty sheltered life up until that point. I was always hurting, but didn't know why. I'd been to the doctor multiple times complaining of my joints and overall aches and pains. No one knew why. I'm not even sure they even ran blood work at that time.
Finally, when I was 21, after living in five states in the span of three years, my body gave up and I couldn't get out of bed. I had come back to Jesus by this time and was not depressed. I was living my life in the hope and joy of his salvation. But my body wasn't working. I was in terrible pain and so stiff, I could barely make it to the bathroom from my bed. I finally went to a doctor who really checked for everything and discovered the my labs returned as showing that I had lupus. I had no idea what that was or what I was supposed to do with it. I had no medical insurance and was living on my own with very little money. He recommended I see a rheumatologist at Dartmouth Hitchcock who could follow up and tell me more about it. Medical files were not kept in computers at that time. This was 2001 in the sticks of New Hampshire. Nothing was sent via computers or fax. By the time I got in to see the doctor at Dartmouth Hitchcock, I'd had two "flare-ups" that lasted about a month to 6 weeks each. I tried to explain to the medical student they sent in to me what was going on. It was more than obvious that he didn't believe me and thought I was making it all up. He didn't have the time for me. When the attending doctor came in, he discovered after an examination, that I had bursitis in both hips and diagnosed me with fibromyalgia. No labs. I didn't have insurance, so that was the best they could do for me. I felt like I had to fight to be heard, so the question of lupus or my previous labs didn't even come up.
22 years and a lifetime later, I was re-diagnosed with SLE. I have been struggling with it ever since. I am on more medications than I can count trying to keep it under control. I get monthly infusions of a medication that may or may not work. I feel like I'm in my 70s when I'm in my 40s and should be living my best life. But it's hard. It's hard to look past what could be. The "what ifs" get me down.
This past week, I realized that it's time I let go of hope. I know how that sounds, but I'm serious. I have been holding on so tightly to this idea of finding complete healing, that I'm not living at all. Instead of embracing the path I've been given, I have tried with all my might to change course, to jump ship. This isn't the path I wanted. Who wants to be in pain all the time? No one, that's who. But God calls us to something greater than our circumstances. He pulls us into himself and under his wings we will find shelter. He doesn't always remove the hardships, but He will resurrect us to glory within it.
