The Scroll - Part 1

I got preached to last night. A traveling missionary got all in my business when he started listing off the reasons people don’t like to share their personal testimony. He named three things. Check. Check. Check. I thought, "Yeah, those are my reasons, and I could write him a longer list than that..."

I had these posts written out already, but if I follow my own list of reasons I'll never publish it. I got the message. I need to be more concerned with this list:

1. I owe God a public thanks for blessing me.

2. Maybe my story can help someone.

This story starts with my embryo. But first, jump ahead to a time in my life when I didn't care about my embryo or anyone else's. I was thirteen, and perfectly healthy as far as I knew. Life was good. Then suddenly one day I was sitting in shock across from my family doctor as he explained to my mom and I that I had advanced scoliosis.

Scoliosis means your spine isn't straight. In my case, it was both thoracic and lumbar, double-curved in the shape of an S. S for scoliosis. I began to hate that word.

I had no pain. No other symptoms. No problems of any kind. And before you judge my parents for not knowing, multiple doctors told us that my scenario was totally normal, especially if you are the type to stay fully dressed all the time. Scoliosis is sneaky because it can happen quickly and painlessly during a growth spurt.

This wasn’t the monster of disability or even a terminal diagnosis. It wasn’t cancer. The big word was deformity. I was majorly deformed.

An extremely scientific diagram of scoliosis

And so began a barrage of doctor visits to multiple specialists. I answered the same questions over and over about pain levels. I was in no pain. We listened to speculations about braces and bone age, and strategies depending on their extrapolations of the progression. They repeated the same neurological reflex tests again and again. I stood through x-rays and more x-rays. It’s all a cloudy mess in my memory. My life had been hijacked and all I wanted was to go back to normal.

I was immersed in a world that isn’t supposed to be – one I didn’t know existed, and one I didn’t want to be associated with at all. We spent hours in waiting rooms with so many others who were facing horrible medical problems, from babies to teenagers. They had shrunken bodies, missing limbs, twisted torsos, even broken minds. We watched toddlers learning to walk on prosthetics; others struggled with tiny walkers. Tender little skulls were scarred from surgery. Because I was walking upright, I felt out of place. You couldn’t please me.

We didn’t know what was coming in terms of treatments. It sounded like months of braces and a spinal fusion. In other words, they were offering me a massively invasive surgery when I felt absolutely nothing wrong. I wasn’t sick. It was unreal.

And then, my medical case got weirder when an MRI revealed more neurological deformities. Evidently the crew was intrigued with the rarity of it all, and my family doctor got slammed with phone calls from his colleagues wondering how he caught my unusual case. Way to make a teenage girl feel special.

At the time, the inside of my head was the center of my universe, and I couldn’t begin to understand the effect this diagnosis had on my parents. Our family and church community responded with exactly what we needed: care, concern, and prayer.

Inside I was full of questions. We didn’t know what anything meant. Were these problems devastating? Were they progressing? Were they fixable? Would the solutions be worse than the deformity? This was before the Internet could be any help. All we knew was a whole new set of scary words. I’m not listing them here because Googling them would scare you too.

At the same time as being afraid, the flip side of my reaction was, ‘It’s a good thing I go to a church that believes in miracles.’ I thought a profound miracle must have been what we needed, and I was more than willing to be the object of it. I imagined how I would tell my story if God would just heal me. I made Him a deal, something like, Fix everything, and I will be your mouthpiece. This was a win-win, because it would correct all that was wrong with my body while showing the world God’s awesome power. I saw this as the perfect outcome. As much as I hated needing it, I welcomed the special prayers, and hoped that one day I would have a perfect X-ray to show beside the old ugly one.

My youth group prayed and even fasted for me. The verdict after a few months of evaluation was that I would have surgery to correct a tethered spinal cord. Though unwanted, it was a simple neurosurgery and way less serious than orthopedic surgery. It is basically cutting loose a section of tissue around the spinal cord that is stiff like scar tissue instead of stretchy. I was still free of neurological symptoms, but they were hoping to release tension on my whole spine.

I had the surgery in early December of 1998. They drugged me subtly so I remember nothing past lying in bed while my parents and pastor waited with me in a holding room. I was relaxed, listening to Adventures in Odyssey through foam headphones plugged in to a Walkman. I woke up from anesthetic feeling the impossible sensation of an elephant standing on my back. Thankfully, I got all the happy benefits of narcotics with none of the bad side effects. They kept me nearly pain free, and I went home the next day with an inch-long incision taped shut on my spine. A week later I was told everything looked good at post-op, and I think I even made a short appearance at a Christmas party later that night.

In the next few months they kept a close watch on my progress. Finally, the day came when they could determine that my spine was definitely not worsening anymore. After so much disruption in life, it came as a huge relief that I needed no further treatment.*

Finally, a new season began where we could look back tentatively and hope that the worst was over. I remember the song “The Storm is Over Now” by TD Jakes summing up those feelings. Finally, the doctor appointments were spaced out to three months, then six months, then a year, and our worries also spread thinner until it wasn’t even a daily thought anymore.

Click HERE for Part 2.

*Fine print: Why didn’t they fix it? Protocol! Spinal fusion is a surgery of serious consequence, and multiple specialists agreed that a fusion was not worth the risk. As one doctor pointed out, if I need surgery later, maybe by then they will have developed a better method than screwing metal rods to your spine. Let’s hope!