When I was young, I watched the movie Joni. For those who are unfamiliar with Joni Eareckson Tada’s story, she became a quadriplegic at seventeen, due to a diving accident. But, since overcoming expected struggles in the beginning of her journey, has lived her life to God’s ultimate glory, despite her struggles. I always thought—especially after watching the movie—she was strong and undoubtedly inspiring; but I never dreamed I would, personally, live my own saga of severe pitfalls and tiny triumphs, large failures and small victories, extreme despair and enormous hope.
My entire life, I’ve had neurological issues that peaked in my freshman year of college. A friend took me to the ER, where they diagnosed me with Chiari Malformation I: the doctor came in; asked my friend to leave; then told me, in hushed tones, my diagnosis. I didn’t know what it meant, and I didn’t know why it was so secretive, like I had some horrible, incurable disease. In fact, no one I knew had heard of it. Little did I know, I’d just been informed I had a neurological problem that would never be cured.
With this diagnosis came countless neurology appointments and a slew of medications to try to ease the symptoms. I was too afraid to research what Chiari entailed, so my dad did it instead. And what we learned wasn’t encouraging.
Rather quickly, my neurologist sent me to a neurosurgeon, whom I saw a couple times before he determined I needed surgery. He promised me health and wellness after a mere six-week recovery.
At the time, I was at college, so my parents came to meet the surgeon, with my mom planning to stay for my recuperation before heading back home. In February 2009, I had my first ever surgery. The surgeon gave me the full “treatment”: opened my dura to place a patch, shaved down a couple vertebrae, removed some webbing from a brain ventricle, removed part of my skull, and even removed part of my brain. I stayed in the hospital only two nights before going home.
But once I was home, something wasn’t right. The pain was getting worse instead of better. My mom bathed me one day, but my hair never dried. Then something clear and sticky started leaking from my incision. Shortly, it started gushing out. I went to the surgeon’s office, where he stapled my incision (sans numbing med) and sent me home. Back home, I spiked a fever and was in the ER the next day, where they diagnosed me with meningitis, sepsis, and two other infections.
I had emergency surgery the next morning, still alive about ten days after catching meningitis (a miracle in and of itself). After two weeks in ICU, plus time in a regular room, I was sent home but was quickly back in the hospital getting a shunt to drain excess fluid from the Idiopathic Intracranial Hypertension (IIH—excess cerebrospinal fluid on the brain with no known reason) the meningitis had caused. That shunt was revised almost as soon as it was put in. Finally, they removed my gall bladder, since the meningitis had destroyed that, too.
With that, my mom was done. The care was atrocious; plus, I was in an abusive relationship that was getting worse by the day. My dad picked us up, going back with my brother to empty my room and officially move me home soon after.
But for all that was promised, things weren’t getting better. I had a daily headache, and the other symptoms weren’t much better. I was in and out of our local hospital and various neurologists’ offices with zero answers. I even had one doctor outright roll her eyes at me!
At nineteen, my world had been overturned. I had no answers, but I knew I couldn’t give up. People were always wishing me well, telling me I was strong. My faith was complimented plenty of times. I stayed active in church ministries and work (as much as health would allow). Those well-wishes and compliments kept me going. I felt that, even though I was miserable, I was making a difference in people’s lives and that was enough for me.
Finally, in 2015, I met the surgeon who was the answer to so many prayers. He’s operated on me nine times since then, with another surgery scheduled for February of this year.
Looking back over this last decade, I see where my faith has faltered, but also where it’s been a source of great victory. College, my initial diagnosis, surgery, and that abusive relationship tested my faith, often to the limits. But I came home (and got out of that relationship) with hope and faith in my heart. Over the years, my faith waxed and waned, but never completely went away. I was in a short relationship in 2013-14, the end of which basically destroyed my faith. It was at that point that I started giving up on my health journey. I had tried everything from conventional medicine to homeopathic treatment, and nothing was working. I hadn’t been able to continue my education: something that had been my everything, my very identity. Now I’d lost the man I thought I was supposed to marry. I just wanted to die. I didn’t want to kill myself, but I wanted God to kill me. I had little quality of life; and what I did have, I didn’t want anymore. People’s compliments on my strength or faith no longer felt good; they felt empty and hollow.
I felt like I had lost every particle of who I was. I didn’t have my 4.0 education anymore. I no longer held major roles in our church—pianist, Christmas Program director, etc.—because I couldn’t drive myself there and had lost my ride. I felt as if everything in my life was useless and meaningless. Even though I was now getting the help I needed medically, it seemed to be an endless series of surgeries that only minimally helped the problem, which absolutely depressed me.
Then, one day, seemingly randomly, I thought of Jonah, sitting there, asking God to kill him. And God’s saying, “’Is it right for you to be angry?’” (Jonah 4:4, NKJV). After that thought, came thoughts of Paul, asking, three times, for an affliction to be removed and being denied. I thought of his writing God’s statement: “’My grace is sufficient for you, for My strength is made perfect in weakness’” (2 Cor. 12:9, NKJV). I realized that I had become ungrateful and bitter. Even though I’d met my now-husband, gained a step-daughter, and met the surgeon that would make my life worlds better, I let the bitterness about my health grow. It took deep root in my heart, and I’m still working to get it out. But with God, I’m succeeding, most days.
Before my tenth brain surgery, I took to Facebook to explain how I felt about my conditions and place in life:
“I’ve had many people—friends, family—tell me I’m strong. But I’ll tell you what guys: I don’t feel strong. I now wear even more hats: I’m a sister, a daughter, a granddaughter, a niece, a new wife and mother, a friend. I have more on my plate than ever, and I feel like I can’t handle it all. I live every day of my life, yes, even when my shunt isn’t acting up, in some level of pain. I pretty much exist on a four to five level at all times (pain scale). I know a lot of you believe in God; I know a lot of you believe in Him as your personal Savior; and I know a lot of you hold very different beliefs. But I gotta tell you, to all of you that have told me I’m strong, or even thought it, or thought “how does she do it?!”…it’s God.
On those days I hurt too much to even get out of bed; on those days I just wanna cry; on those days I struggle with accepting how many diseases and conditions I’ve been saddled with at such a young age and that I’ve already lived for this many years with them, it’s God’s grace, God’s mercy, and GOD’S strength that gets me by. Not me, not mine. I don’t have the physical ability to wear all the hats I do now, but I do my best because of God. I will be going into this surgery next Friday under general anesthesia, as I’m once again cut open, as they once again fix the problem. I’m thankful for an amazing family; amazing friends; an amazing neurosurgical team; and, most of all, an amazing God.”
Since that post, I’ve had four more brain surgeries; and, at the time of writing this, I’m staring down the date for my fourteenth. But I will hold on to God and His promises. I will hold on, no matter what. Holding on is the only way I can survive.
*(If you’d like to learn more about Chiari, a great resource is https://www.conquerchiari.org/index.html)