Why My Good Days With Lyme Disease Are a Struggle

I had two good days. Two in a row. Those days are always a sad kind of magic, like Cinderella’s special night. I could see my future and the vision brought a sense of urgency, a joyful agony. Lyme can be a tease, offering a lull in the action so there is always the possibility I may wake up pain free with energy and a clear mind.

On those days, I remind myself to take it easy, but I know the pain, the fatigue, the mental lag are creeping up behind, ready to crawl over me and touch every inch with their gnarled, heavy hands. So I run. I move and do as fast as I can. It’s like finding my old self hanging in the closet, and I just slip into her, pulling her close – relishing the easy familiarity, the comfort. In her skin, I am reminded that I did not always have a disease.

How, after so long held captive, could I not jump again into the light and move my legs and arms, read until late at night, race my fingers across a keyboard, rushing to get all my thoughts down before they dissipated into a fog? How could I not dive into a clean new day and absorb everything I was able? How could I not make the most of all the hours and minutes while I was endowed with a pseudo-health?

As is achingly typical, I returned as fast as I could to the likely site of my downfall, the tick-infested forest. I was giddy and sometimes wept in response to the freedom. My Lyme incarceration would resume, the warden was on my trail. But, for a little while, I would enjoy my escape even if it was spent on the run.

I allowed myself to consider that maybe I had turned a corner. I’d heard this so many times in so many ways, “Looks like you’ve turned a corner. That’s great!” or “You look good! Guess the worst is over!” Others say these things, but I know there is really no “corner” to “turn” with Lyme. I never tell them it’s more like climbing a muddy, slippery slope that allows only a little progress before the inevitable backward slide, before I have to start again.

For two days I fought to advance. I stole into the forest and let the green swallow me. I stood under the tallest, oldest trees. I caressed foliage, devoid of springtime blooms that I knew had been on display only days before and would return next year at just the right time. I savored feeling small and marveled at the persistence of life. I drew strength from my faith in God, that He would, in some way, liberate me from sickness.

Then, on the third day, my affliction rose again. It was pain first, probably from my defiant march into the wood. Then fatigue and vertigo latched on pulling me down and this way and that. My mind slipped back into the mist. As I stumbled and nearly fell walking across a room, as someone reached out to steady me, I remembered the sturdiness of only hours before. As palsy drew the side of my face downward, I thought of the lightness my expression must have held while I stood under the tall trees. As I lost sensation in my limbs, I recalled how good it was to feel the packed earth under my feet. As I limped to my car and climbed in, I thought of how solid my gait had been, how I had ascended every hill with my former ease.

Most days are bad. I am too tired to keep working my way up. I slip backward and get caught in Lyme’s complicated web. But always, I promise myself that I will try not to look back down the slope for too long. That I will try to believe that a summit waits and is within reach. I will try to believe in the magic of good days and will not fail to treasure every one.

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