A Monster Unmasked
Learning to hold on to God when faith lets go.
by Stacey Philpot
To a thirty-one-year-old newlywed who ran three miles most days and regularly worked with a personal trainer, stairs were not supposed to be insurmountable. Yet here we stood — all of my 29 sixth grade students and me, eyes fixed upon the staircase in front of us as though all of the secrets to life were held on the other side.
Of course, they thought we were perched in this holding pattern until they stopped talking or fidgeting or whatever it was I’d told them they were doing too much of. And, as such, we’d remain perfectly still, right there, until they got their act together.
The truth was, I couldn’t get up the stairs, and I didn’t know why. I added this to the ever-growing list of symptoms I’d been keeping in my mind and knew one day soon I’d need to tell someone before it was too late.
Fatigue and falling
At first, it had been a pressing, hungry fatigue that could never be satisfied. No matter how much I slept at night, it gnawed at me throughout the day. I stole away for naps and slept in when no one was looking. You’re just adjusting to married life, I knowingly lied to myself.
Then there was the falling, subtly to the left. Maybe it was the heels I was wearing? Except it had happened while I was barefoot, standing in the bathroom, as well. Well, that was embarrassing. But balance has never been your gifting, my inner voice assured me.
Infections and pain
I also dealt with constant infections, one on top of another, that never fully healed and brought considerable pain even when the cultures came back negative. I hadn’t mentioned the strange, shooting pains radiating down my leg to anyone, because who would I tell? Surely I was imagining all of this.
But late at night, when I couldn’t sleep, the thought would come with pulsing intensity: What is happening to me?
When the day came that I was sure someone had erased the right side of my body in the shower and my right hand refused to wrap around the toothbrush, I knew it was time.
And for the first time, I admitted to myself that this was real. Whatever had been creeping its way into my world was now thrusting itself to the forefront, demanding to be seen. Will it kill me? I wondered.
It was my husband I first told about the monster because I needed his calm, rational demeanor. While I’d hoped he would assure me this was a monster easily squashed, he instead turned pale. “I see it,” he said. “What should we do?”
I wasn’t sure. If all this was real, what did it mean for me, for us, for our future? And where was God in all of this? Why would He allow something so terrifying, so potentially life-altering to happen? I’d always considered myself a woman of deep faith. But suddenly my roots were feeling shallow and frail, my faith disconnected and hollow.
With trembling hands and a soft voice, I made an appointment to see a neurologist. He sent us to spend our five-month wedding anniversary in the hospital, where I had a spinal tap and brain MRI to determine if my monster was named MS.
While waiting for results, I was reduced to using a wheelchair for mobility. Unable to return to teaching, I became more and more afraid for the future with each passing moment.
By Monday, the results were in. My monster was not named MS.
So what was it? No one could tell me. For the next four years I was passed from doctor to doctor, none of whom could unmask the monster with any certainty. I couldn’t help but think, Am I crazy? Have I somehow failed God? Is He mad at me? Surely, if someone could determine the problem and fix it, then I could do all the things that made me loveable again, right?
Leaning on God
After a repeated mono reactivation left me at wit’s end, I finally determined to visit a world-renowned infectious disease doctor in another state. Surely he could at least improve my quality of life.
By now, I’d given up on monster hunting and instead focused each day on relying on God’s grace and strength to get me through. I had been surprised to find just how powerful that could be.
Dr. Lerner had a kind and determined face. He asked questions with purpose and ordered tests no one else had ever mentioned. Still, I doubted that anyone would ever get to the bottom of my medical mystery. Hopefully, he’d just be able to get my infections under control.
After running a battery of tests and taking so much blood I thought he might be a vampire, he said, “Come back in two weeks, and I’ll have your diagnosis.” I chuckled.
Two weeks later, the man with eyes that danced and a smile that warmed your soul sat across from me and told me what no one else had: I had Lyme disease, an immunodeficiency disorder and a serious viral disorder, all of which required treatment.
I was in total disbelief. It had been almost five years since I’d stood with my students at the bottom of the staircase, unable to climb them and unsure of why.
One thing I was sure of: God had led me to this man who had unmasked the monster and cared deeply about my journey, who oozed strength and wisdom and loaned me his when I lacked my own to go on.
I spent eight weeks away from my family engaged in a battle royal with Lyme. And while they were some of the hardest days of my life, they were also some of the most beautiful.
During those days, I discovered I was proud of my fight. I saw that my roots were growing deeper. I no longer feared the future. I no longer believed that I must perform in order to gain love.
After I came home, I started monthly IVIG treatments for the immunodeficiency disorder and added a rheumatoid arthritis diagnosis to the list. But by then it didn’t matter how many diagnoses were added. I had decided to obey anyway, that I would be the person God had called me to be and do what He had called me to do.
This year I finally realized that while many might call me chronically ill, God calls me chronically whole. He isn’t mad at me, and He isn’t punishing me. He is madly in love with me just the way I am — chronically whole in Him.
- Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease by Richard Horowit
- International Lyme and Associated Diseases Society (http://www.ilads.org).