It first showed up in November. I felt exhausted, crippled with aching flu-like pain, and edged with the threat of tears. At some point during the worship service, my fiance leaned forward and whispered, "Do I need to take you someplace more comfortable?"
Torn between my desire to be with the people of God, but aware that I was unable to actually enjoy their presence, at last I acquiesced.
My legs had turned to jelly and the cacophany in my head made sight difficult, so my fiance led me. As soon as he opened the outer door of the church sanctuary, a wall-blast of light assaulted me. My legs crumpled.
Paul picked me up and carried me to the closest couch. For the next hour, my entire body spasmed violently, alternating between tremors, full-body whiplashing, intense contractions forward and backward. It was the first time anything like that had ever happened to me, and yet, as my soon-to-be-husband prayed quietly over me, I felt perfectly calm. Even as a prisoner of my body, my mind felt utterly relaxed.
Months went by--my wedding, my honeymoon, the start of a new job--and the "spasming episode" seemed like a mere accident. With only a few episodes every six weeks or so, it seemed hardly worth noting.
Then I got mono. My candid opinion of mono: If someone turned me into a flea, and put that flea in a box and put that box inside another box, and mailed that box to a sadist, and when it arrived: AHAHAHAHA! They smashed it with a hammer!!!
... That flea would still feel better than I did.
But after the golf-ball sized nodes around my jawline reduced to more breathable levels and the beehives in my ears found new homes, after I could stand upright more than twenty minutes with turning into a blob on the floor, the mono left a parting present.
A Trojan Horse.
Whatever this spasming creature was, it had decided to stay. I felt it like an electrical eel under my skin, or a sandpaper-skinned viper. It forced me into acrobatics that would rival a contortionist. It left me sweating and gasping and huddling next to my husband for some small offering of warmth from his furnace skin. Whatever had arrived as a microbe in November 2017 had returned as a monster in February 2018.
Somehow, even at this stage, I was able to continue normal life. When I felt it coming on, I slammed down my mental portcullis, contained the beast, and went to work or social events or church. Through relaxation and distraction, I could beat this beast back.
Until the weekend. I could count on spending the weekend on the couch writhing, twisting, and contracting. No one could keep their defenses up forever. So instead of savoring the sunshine and the freedom and (deceptive) lack of adult obligations, I spent my weekend shivering on the couch.
There came a time when it became harder and hard to divide the beast from my every day life. My mental portcullis corroded and the beast became part of all aspects of my life. I cancelled social events. I slept instead of attending church. And eventually it became something I couldn't ignore at work.
"Hi, I can't come to work today. I had a giant spasm while I was hooked up to the EEG for this morning's test. I'm completely wiped out."
A few weeks later: "Paul? Come pick up your wife. She's spasming on the office floor and I think she'd appreciate having you here."
Medicines attempted, abandoned. Weeks of work lost. Nights curled up next to my husband praying and crying and praying some more.
What about working? What about having a family? What about just having a day pain-free? What about having the option to travel to bring the gospel to others--the same gospel I needed so desperately every day?
Paul and I began to speak the truth to each other: "If this is in our lives for no other reason than to call us to pray, then it is a good thing. We always need to pray more."
To be honest, sometimes that "praying more" was just Paul holding me while I cried myself to sleep, knowing but unable to verbalize that the Lord was good, good, GOOD even when I couldn't understand His plan. Sometimes that is the only thing you can remember.
The doctors were fantastic--extremely responsive and thoughtful. At the same time, the progression was starkly visible. We weren't talking months of slow downward spiral. We were talking weeks, then days, then hours between episodes. When my husband bought me a cane I legitimately needed it. I was walking like I had cerebral palsy--tight and crooked--when I could walk at all.
The Lord does not leave us without instruction in such cases. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him (James 5:14). When the elders prayed over me, the Lord did not heal me instantaneously. But He did do something. He took my crippling fear away. He made it so, so clear that Paul and I are not forgotten, that there is a distinct purpose in this.
Until you are part of the family of God and you know what it means to have an entire people--your people--praying for you, you can't imagine the comfort of that assurance.
At last, in June 2018, a partial answer. "It's not epilepsy, MS, PTSD, or anything 'normal.' What you've got--it's rare. Yours is the third case I've seen in 30 years. We need more testing to see where it is originating from. Once we know that, we'll have to experiment to find the right medication for you. This is not an overnight cure, but we can work together to find management that will help you recover some quality of life."
A work in progress is good enough for me. But what is even better is this: the goodness of a God who does not leave, change, or give more pain than He equips us to bear. I am not alone.
My Father is with me.
None of my life has gone the way it was "supposed to go," but I don't love my life any less because of the hardships and new directions. I see so much unexpected good in it, and I want others to see the good in theirs.