Uncategorized – Lyme Feels Like This

“What If I Get Better?”

We started on solid ground, our footing sure, each step of life’s terrain mapped out in our heads. There would be rough patches, we knew. Our expectation, though, was that we would traverse them all and reach the peak.

But things shifted in ways we didn’t anticipate. A crack formed; a fissure so narrow, at first, we just kept going, stepped over the little aches in our knees. Hopped, while we still could, around that fuzzy feeling in our heads. We ducked under the cover of over-the-counter pain killers and trudged along, our ears ringing so loudly we never heard the avalanche of hurt tumbling our way, intent on knocking our feet from under us.

Then we were dizzy, shaky. We could feel the tremors when we held a pen or slipped a spoon between our lips. Our world became unstable, and we found ourselves grabbing hold of walls, furniture, the person beside us. Our steps became arduous from hoisting our limbs over the obstacles that kept showing up in our path. Things that, a few months prior had been only pebbles, were now boulders, immovable, expansive; blocking the whole trail.

How had we misread the signs of our inevitable cave-in?

At first, it was just loose stones, bits of gravel. They only trickled and sometimes didn’t move at all. If it had been a constant rumble, we’d have recognized the danger, but we had no idea those little bits of tumbling rock were a part of something bigger. No clue they were pieces of our very foundation.

We turned to science, to the detectors and fixers of bodily earthquakes. They attached sensors to our brains, hearts, nerves. They looked diligently for any disruptions inside or out. When they couldn’t find one, they made guesses that they called, “educated”; pulled blood from our veins and ran test after test, all-the-while warning us that a positive result didn’t prove we were sick, and a negative didn’t prove we were well. They promised to look at the whole picture; make a determination, let us know how long before we would fall apart.

But science was stumped, or just ignoring the data. Either way, too late came too soon, the crack became a gaping hole. It sucked us under and our productive, happy lives crumbled.

At first, we braced ourselves. Surely, there would be some room for escape. A simple treatment; the right pill.

When there wasn’t, and the wreckage was so much we couldn’t comprehend, we remained determined to dig our way out; move every stone out of the way. We would not eat gluten. We would not consume dairy. We would not partake of sugar. We’d get enough sleep, do yoga, drink water, meditate. We would eat Keto, Paleo, Autoimmune. We would not, I repeat, not, get stressed.

But it was so confusing. We’d just gotten rid of the pain in our feet, hadn’t we? Just yesterday it was better, but once more, they felt as if they’d been punched all night. And two days prior, wasn’t our thinking clearer? We weren’t sure. We thought it had been, but we can’t remember, not with any clarity. We excavated symptoms only to watch our clear, clean space fill again as they rolled back in or new ones took their places.

We asked our scientists over and over, “When will I get better? When?”

At first, it was scary; dark, lonely, silent. But after a while, our eyes adjusted to the gloom; our mind to the quiet. Finally, we accepted our place in this crumbling heap; stretched out our arms and began to gather the fragments, pulling them close; wrapping them around ourselves like a cold, hard blanket.

What else could we do? We had to hold on to something, and since this disease seemed unshakable, we grabbed on to it and embraced our new “normal.”

“It’s better this way”, we reasoned. Buried under the natural disaster of sickness, no longer would we have to do the things that had become so difficult, like talking, thinking fast, getting jokes, feeling sympathy, sorrow, or joy. Instead of trying to discard the stones, we began stacking them with precision. We built a fortress, and tucked away, relieved no one could see us.

We couldn’t drive. Our road was filled with potholes and rubble. It was too hard to remember what a red light or a stop sign meant; too hard to recall the way home or where we were. So, we got cozy in the passenger seat; leaned back and watched things pass by in a blur.

We tried crawling out each day to go to work, but the weight of our symptoms – – too many to count – – was too much, the load too heavy to add the responsibility of bread-winning. Our brains were filled with dust, no room for thoughts, problem solving, or words. So, we quit or were let go. At least that left time for hobbies – – as long as they weren’t too strenuous or didn’t demand clear thought.

We discovered a small, but bright light inside our burrow. A screen held relief from complete isolation. We weren’t exactly alone. Even in the deepest, darkest place, we could find a signal; a connection. There were people like us hunkered in the ruins. We couldn’t see them face to face, but we found friends, a tribe, a community of like-diseased sufferers. From our corner, we could call out and find validation, encouragement, ideas, and ways to feel a little better sometimes. We could say, “Hey, it’s a full moon and I feel like crap.” Or, name weird symptoms like when our ankles feel wet for no reason, or our lips have an imaginary bug crawling on them that won’t go away no matter how hard we rub. We could proclaim these without fear, knowing their voices would echo our own.

All those things were long ago.

Now, this fracture feels permanent; like part of us, or more often like who we are – – a brittle shard, once whole. We still turn to the scientists, but more and more we feel they’ve lost the patience to uncover our past. Maybe they’ve done all the digging, brushing, and cleaning they can. So, we’ve stopped asking ‘when.’

Instead, here in our dark, hushed places, we whisper, afraid to say it out loud, “What if I get better? What if?”

It happens. Sometimes, someone finds a way out. They stand, stretch, and smile, looking at their limbs like they’ve just shown up. Wide-eyed from a suddenly clear mind, they buy work clothes, running shoes, school supplies; get new hairstyles, make plans, make friends.

We peer between the slabs of our bunkers; watch their strong arms reach up until their shadow-self is washed away by light. We watch until they’re gone. They’ll be back now and again to tell us what it’s like out there, give us pointers, share what worked for them, helped them rebuild. On hopeful days we’ll soak in their wisdom, on days of despair, we’ll only hear Charlie Brown’s teacher.

So, what if we get better?

What if one day, we are strong enough to ascend? What if the pain, fatigue, mental fog, numbness, tingling, anxiety, depression all stay underground and we, somehow, rise to the surface? What if we can make it out clean and fresh, no trace of grit clinging to our flesh; no sludge clogging our minds? No second thoughts about going out with friends? No hesitation about volunteering?

It’s hard to imagine. Some of us don’t have the strength to stand, let alone climb out of a tomb. And better isn’t well.

If we find our footing and move forward will we be looking over our shoulders, wiser now, to the threat of falling rock? Our steps will be wary because we won’t want to wake the giant. We know what it’s like to be swallowed whole and will do anything to keep ourselves free; anything to stay out from under.

Our eyes no longer care for the light, our ears, the noise. We’re not sure we can endure the world above ground. Our brains have failed us so many times we don’t trust them; don’t believe they’re up to the challenge of living in the world of wellness. We fantasize about jobs, parties, picnics, or maybe a club. But what if our panic comes with us? What if it never really leaves? It might be impossible to speak the words we need or to listen and understand the words of others.

And what of our friends still living in the throes of a long, long illness? They’ve meant so much to us, how can we leave them behind? No longer share with them the strange communion of affliction?

Remission is a permanent home on a fault line. Always at risk, the cost to keep it standing is high. The hatches are never completely battened down so we reinforce in hopes we’ll never again have to rebuild from the ground up, but this is where we live, and no matter how badly we want to, we can’t choose a disease-free zone.

Standing in a place that’s not disintegrating, where everything is exposed, we will look unstable and unsteady sometimes, but we know how far we’ve come. We remember the initial collapse, the dementia, the hallucinations, the pain. The days of endless sleep and nights of relentless wakefulness are fresh in our minds. Sometimes, those things are still with us in flashes, moments. Some days they spew up from where we’d buried them. To a degree, some of them are always here.

But, we fear those who watch, will only see us as less than we were, unaware of how much more we’ve had to be, in order to keep trying.

Lyme feels like this.

Romans 8:23b “. . . for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us.” (NLT)

I Know I Am Dying

I know I am dying.
I am aware; cognizant of the microscopic enemies swimming through my blood and crawling through my tissues. I can’t deny the conflict they have created on the inside turning my body against itself. A house divided . . .
From birth, we are all dying, but I have never been so conscious of my shift toward biological retirement as I am now. This wasting away is no longer a secret concealed from me by the trickery of a once busy life.
I can hear it. I hear it in the ringing in my ears – – the horde of spring peepers that seem unable to escape the labyrinth of my cochlea so they call out day and night in despair or panic. I hear it in my breath, heavy and desperate after the shortest flight of stairs, or an inclination to tie my shoe. I force my lungs into submission – – in through the nose, out through the mouth. “Smell the flower, blow out the candle,” I used to tell my patients, when I was a nurse. I hear it in the tympany of heart beats against my eardrums that happen for no apparent reason, and wonder if they might be trying to put an end to those peepers for me – – one way or another.
I can taste my decline in every tablet, capsule, or rancid liquid drop that lands on my tongue. I taste it in the crumbling, unsubstantial, and disappointing squish of gluten free bread; the watery, bitter aftertaste of “milk” made from nuts. I taste it in the memory of all the foods I am doomed to watch others savor.
I can smell death. Oddly, when a body is deteriorating, sometimes it seems to switch to high alert. Sensitive to everything now, I cannot tolerate sounds and lights, and yes, smells. Fragrant anything can make my throat burn, eyes water, stomach turn, and head hurt. I have banished scented lotions, soaps, shampoos. I cannot enter a Croc store, Bath and Body Works, or Yankee Candle. And although, I don’t always smell it, I know in five minutes if mold is present. Some pay thousands and use laboratories to find it, but they could hire me. As soon as the right side of my face draws downward, my right arm and leg go numb, my stomach starts to churn, and my balance slips, I can say decisively that mold lives. I was a thrift store shopper and lover of used books, but no more. They are poison to my over-reactive self.
I can see it. Others say they cannot. They say I look really good, healthy even. One side of my face droops, I walk with a limp, and my color is sort of the shade of wet peanut butter. I see it in the atrophy of muscles previously strong and taut. It is plain in the cobwebs that cover my ceiling, the laundry overflowing, the dirty floors. I see it when I look at my hiking shoes with dusty tops and spotless soles, unused for too long. I see it in my neglected gardens, some so overgrown you would not believe they had been gardens at all. I see it in my new normal; no regular visits with other people, and few spontaneous. No longer pulling on a uniform and going to work. My scrubs are in storage. I don’t go to church, our building has mold. I am mostly alone. When I need to vent or want to offer help, I don’t meet a friend for lunch or coffee, I log in to Facebook or Twitter and rant and cry to other Lymies and don’t know what I would do without their empathy.
And I can feel it. I feel death coming everytime I stand up, sit down, lie down – – in every stiff, slow, painful movement. I feel it when someone touches my skin because it hurts to be touched. I feel it when my foot hits the earth because the soles of my feet are like raw meat; in the pressure in my chest, the freezing then boiling then freezing of my flesh. I feel it my frustration when I cannot remember what happened one second before, when I cannot get letters in the right order, when I mean to say “security” but instead can only say “discovery,” or “ketchup,” or “potato,” or some other nonsensical word. I feel it in my panic, when I cannot remember where I am or where I am supposed to be going, or how to get there if I do recall my destination. I feel it when my mood becomes manic and nervous; when it shifts suddenly to a silent, suffocating misery that is so heavy it holds even my tears captive.
I am aware. I know my invaders and am conscious of their continuing work. So what do I do with this knowledge of death? Matthew 10:28 says “Don’t be afraid of those who want to kill your body; they cannot touch your soul. Fear only God, who can destroy both soul and body in hell.” In context this passage isn’t talking about bacterial, viral, or parasitic infections. It is talking about evil men, but these bugs are no less destructive than the worst of men. The Apostle Paul reminds me in Corinthians of the decay of my “outer self” and says to be encouraged because the “inner self” is being renewed. Admittedly, I struggle to focus on that renewal when the decay is so overwhelming. Sometimes, I blame the illness for what feels like the ruination of my soul, but I can’t rely on my shifting feelings, if I do, I will fall. Instead I rest on the truths I know. I know souls are strengthened in times of trial, and I know I just need to be open to God, to whatever and however He wants to work in and through me.
I am not afraid, really. One day, I believe God will make me glad – – glad that I am not in the dark about my deterioration. Consciousness of my fragility can, by God’s grace, lead to a greater strength, a lasting peace, and a solid, unshakable joy. I do experience moments of buoyancy; times when I feel the goodness and wisdom of His purpose in my suffering, but most days, if I am truthful, I still just want to be well.
I believe these microscopic warriors have lived in my body for a long, long time. They kept to themselves; didn’t bother me. Ignorance was bliss.
I was unaware. I did not know I was dying.
Now I know. I pray to be thankful that God has let me in on the secret and to use this knowledge well.

Lyme feels like this.

When You're Stuck With a Fake Disease

When my test results came they were covered with multiple +’s. My doctor assured me that, yes, I was truly sick; that the myriad of symptoms harassing me were not the imagined folly of an attention seeker, or an attempt to get out of work. They were, he said, signs of a real and, while not curable, treatable disease. I hobbled from his office that day on legs stiff with pain, climbed into my vehicle, put my head on the steering wheel, and wept.
Relief.
I was not glad to know I was sick or to be sick, and had no idea the long road ahead of me. I was simply happy to know I was not insane. In my body, I carried a pathogen – – a wiggly, sneaky spirochete that could be identified under a microscope. So now, when people asked what was wrong, I could say definitively, “I have Lyme Disease.”
Little did I know . . . truly little . . . this disease, at least the chronic version, came wrapped so tightly in politics, it had been strangled into a mere syndrome. Just a collection of symptoms and the claim of unknown etiology.
Once again, almost three years later, I am in my car with another laboratory report. This time, a Lupus panel. I requested it because I suffer so many of the symptoms. This page is full of “negatives” and “within ranges,” and I am weeping. Not out of joy as one might assume but frustration, plain and simple. I was hoping for the words, “positive,” “elevated,” or “out of range.”
You may be thinking, I am insane after all. This has to seem crazy and probably offensive to those who have Lupus. I may, indeed, at this point, be a little mental, and I really do not mean to offend. I will try to explain my desire to be diagnosed with a progressive, awful disease.
As a nurse, I knew going in, there was no test to confirm Lupus. A positive on any one of the many tests commonly run does not mean one has the disease, while a negative does not mean one doesn’t. Confirmation involves, as with most autoimmune illnesses, a battery of tests that could all mean something else, and the clinical diagnosis of a physician based on symptoms.
This has to be exasperating for Lupus patients, always leaving them with a hint of doubt, a bit of worry; the possibility they may have something else instead, afraid they may be on the wrong track. They probably feel some days they would give anything for pathogenic proof.
But, as I have learned, a clear etiology doesn’t always hold up in the court of medical or governmental opinion. A wiggly, active, clever spirochete in your blood, muscles, joints, and organs does not, for some reason, necessarily make a convincing argument.
So I wanted a Lupus diagnosis. I wanted it because it is legitimate in the eyes of the world. And if I am going to have the symptoms of a real disease, I would like people to believe I have one. Lupus, MS, ALS, all count. They are not referred to as “post disease syndromes.” They garner, as they should, sympathy, empathy, walk-a-thons, telethons, marathons, ice bucket challenges. Celebrities raise awareness and money for these ailments. And all the governmental agencies that hold the power and the purse strings take them seriously and search for cures.
These afflictions should get attention. They are serious and devastating and treatment needs to continue to advance. But the horror of one disease does not negate the horror of another.
So I am in my car, weary of explaining; of the questioning looks, implications, and innuendos. Did you see a tick? Did you have a rash? Lyme disease makes your knees hurt, right? It’s caused by a bacteria? I didn’t know that. Well, at least it can’t kill you. Just a few weeks of antibiotics and you should be good, right?
I am in my car thinking that I am done; done feeling defensive and trying to prove this is genuine. Just because I am sick, doesn’t mean I have to become an activist, does it? I can just close up and know within myself that I am really ill. Someone else doesn’t have to believe me.
I am in my car thinking maybe I am crazy; maybe this is all in my head, and I do not really have crippling pain, suffocating fatigue, memory loss. What if my sometimes stumbling, drunken-like gait is put-on, but I’m so nuts that I don’t realize I’m doing it. What if some psychosomatic invention is causing the muscle spasms, the shortness of breath, the heart palpitations? It’s been awhile since I have had doubt about the truth of my condition, but somehow this piece of paper takes me back.
I am in my car crying, experiencing all the symptoms of multiple real diseases that people believe in and care about; suffering as much as some with MS or Lupus, but stuck with a “fake” disease, just this left over syndrome that is supposedly “cured” by 21 days of antibiotics but has cost me thousands over the last three years.
I fold up the results and tuck them in my purse. I don’t even tell my family they were negative. I think they might be disappointed too that I am not sick with something they won’t have to defend or explain. This paper in my purse, doesn’t mean I don’t have Lupus, but it means I can’t say that I do. Maybe I’ll talk to my doctor about testing for something else, or maybe I’ll pretend I’m well. Maybe, as hard as that is, that would be the easiest.
Lyme feels like this.