When You’re Stuck With a Fake Disease

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.

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Werewolves of Lymeland

Werewolves of Lymeland

A change comes over me when the moon is full. It wasn’t a curse that caused my affliction, but a bite.

I try to hide myself away during this phase so no one will see my altered state.

This transformation is painful. I may ache to the point of moaning and groaning. Sometimes a cry, unexpected, will escape my lips as sudden electric jolts shoot through my limbs. My muscles may jump and quiver or lock and cramp. I am taking on a different form and do not look or feel the same.

An invisible weight pulls one half of my body toward the earth making my gait asymmetrical and sluggish. Super strength is not a part of my transformation, instead the opposite. The right side of my body weakens, grows weighty, and numb, except the parts that hurt.

My countenance slips on one side. I am a bright, smiling Jekyl on the left; a drooping, dismal, Hyde on the right. I have not reached the point of drooling, but it isn’t far off, I fear.

My senses of hearing and sight become heightened to the point that I take cover against the light and cringe at high frequencies. In church, the music that I loved is now uncomfortable. When the godly lift their voices in praise, I close my ears and wonder if my sin has caused this physical barrier cutting me off from the songs that once gave me joy. I wonder if peace will ever again wash over me when I hear a familiar melody or if I am always to be a shameful creature marked for all to see by the corrupting effects of the fall of man.

My mind moves in a fog, at times my thoughts are almost feral. I am easily angered and the least infraction can antagonize me to the point I must get away by myself or risk giving someone I care about a verbal slashing. It feels like I am lurking in a graveyard, searching for my own burial site. Surely, there is a headstone with my name on it because this person with sagging expression and stumbling pace is not me. I must have passed from this world at some point. But I can’t think straight; can’t remember. In my head it is a dark night, and the moon only serves to highlight and thicken the murk so I cannot find my way.

I know to claim a moonlight metamorphosis sounds mad to those who have never been bitten. But it doesn’t matter. Those of us who have suffered this fate are accustomed to being accused of mental and emotional instability. We are used to being thought of as attention-seekers, knowing well when we mark our calendars and howl our full moon warnings, we sound a bit delusional. But we have each other. We have formed a pack in this dark place and can bear witness to the truth of one another’s claims.

We see the powerful shining a light on the victims of other diseases. “Look!” they shout, and point, and sympathize, and tell everyone that something must be done to set those poor souls free. They work night and day in their labs, sustained by their sense of urgency and desire to cure those who are suffering. But for the werewolves of Lymeland, they reserve a cage in a dark corner and try to keep us hidden. From the shadows, we see them smiling, proclaiming to the world that our ailment is not as bad as we believe. They assure everyone that it is easy to destroy as if it were a simple, scrawny dog and not a powerful, dominant beast. Their dismissal keeps us locked up and feeds us their “facts” that claim we are fiction.

After all, everyone knows werewolves . . . and Lyme disease . . . are not real.

Lyme feels like this.

Sunday Driver

Sunday Driver

To the long line of drivers behind me, I am sorry. Please know that I am likely not even aware I am driving 40 mph in a 55 mph zone. At some point it will dawn on me, and I promise to hit the gas and make my way to at least 45.

If I could only contact each of you and explain; convince you that my snail’s pace is the best thing for all of us. I just need a little extra time. It’s been awhile since I’ve driven.

Maybe if you’d known me before I got sick. Maybe then you wouldn’t sigh, or roll your eyes and ride my bumper. You might even cheer me on if you knew all I’d been through to get back in the driver’s seat.

Maybe if you’d known me when I was a home health nurse, logging more hours in a car than I can count, you would show some grace. Twenty years, I drove from house to house providing treatments and medicine to those unable to transport themselves. I drove on roads that looked like driveways in weather that forced most to stay inside. Maybe you would see me in a more heroic light; be grateful and consider I may have once cared for someone you love. You might even stop shouting things like, “good grief,” or “c’mon lady,” or worse.

Maybe if you’d seen me on my last day of work; watched me turn in my nursing bag, computer, and name tag; saw me hug, and cry, and say good-bye to my friends and co-workers, maybe then you would find some patience. If you had witnessed my devastation, how helpless I was to save my livelihood in the wake of this microscopic army; if you had seen me when I was a whole person and watched that last piece of my old life crumble, leaving me barely standing – – an isolated ruin. Maybe then your testy fingers would cease tapping the wheel.

If you had watched me grow frustrated when my light switch would not start my dryer, or witnessed my panic when I could not remember the way home, or glimpsed my daughter’s face when she realized I was seeing things that were not really there. Maybe you could find it in your heart, to stop slamming your palms on the wheel, and instead smile and feel happy that some of the cobwebs have been cleared from my mind and, even with an occasional wrong turn, I always find my way home now.

I want to go faster. I do! I long to feel the confidence of a drive at the legal limit of speed. I hate making you wait, being that person who slows everyone down. I want to feel the wind blow my hair and turn up my radio. I want what you want right now while stuck behind me and what you will have as soon as I am out of your way.

I have been forced into the passenger seat for two years, sitting passively saying, “Turn left, now right. Take me to the grocery, then the pharmacy, please. Can we stop at the library?” Or, worse, I ask to be taken, to attend to an errand, and I hear, “Oh, I can drop that off for you!” or “What do you need? I can pick it up and bring it home.”

Being a passenger after having been so capable is like being a very hungry baby, whose mother is distracted and doesn’t bring spoon to mouth quickly enough. And just like that baby wants to grab the spoon and do it herself, so I ache to grab the wheel and deliver myself wherever I need and want to go.

So maybe I will speed up, but then again, maybe I will just pull over and let you pass me by, asking yourself, “What’s wrong with her? Why doesn’t she get off the road?” I won’t get to tell you that there is, in fact, a lot wrong with me but not as much as there used to be. I understand you cannot wait, but the road ahead has been here a long time, and she and I have some reacquainting to do. I am going to look out the window, feel the breeze, listen to NPR, listen to pop music. I am going to choose where to go next. And I am not, nor can I be, in a hurry.

Sorry.

Lyme feels like this.

The Sad Magic of Good Days

The Sad Magic of Good Days

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 was not always diseased.

How, after so long held captive, how 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 of the abused, 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 release 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.

Lyme feels like this.

Surrender and Fall Behind

Surrender and Fall Behind

Somewhere in my brain, from a long time ago, I remember this trail, and I remember this boy, my son who walks beside me. He is fourteen now, but I have in mind the eleven-year-old version. That boy wasn’t so tall, his voice wasn’t so deep. Three years ago we walked here, both of us steady and strong. Both of us captivated by our surroundings. Perhaps it was on one of those hikes that a polluted tick latched on and infected me. I don’t know. I never saw it. I do know that while I was immobilized by pain and fatigue, while I was hallucinating and forgetting how to use my appliances, while my speech became garbled and my hands shook, my son stopped being eleven; I don’t know what happened between then and now. I couldn’t take him anywhere. I couldn’t stay awake for late-night talks anymore. Some nights I couldn’t make it to his room to say goodnight so he came to me – – until he stopped. I was so sick, I wasn’t even aware we were losing touch. But all I could do was surrender and fall behind.

Right now, he is talking rapidly, gesturing, passionate about his subject – – a video game with a complex strategy. I love the sound of his voice, the enthusiasm. Internally, I lean in; focus on those things because no matter how I try, and while I know the meaning of every word he is saying, there is no hope today that I will be able to comprehend them collectively. So I surrender and fall behind.

He is lean and lanky, his legs stretching beyond the reach of my own. We are not long on the trail, and I begin to fade. I want to keep up, keep him by my side, but my steps are stiff and slow. My eyes are locked on the ground directly beneath my feet – – feet that feel more like raw meat with every step. I sense I am in danger of a sway or veer to the left, and pain persists. I concentrate harder, gripping my walking stick. He is still talking, still happy thinking of his game. A man’s voice speaking of a boy’s pastime. I cling to the voice and the boy while I surrender and fall behind.

He grows quiet. “Go on ahead,” I say, “just stay within shouting distance.” He moves past but turns to make sure of me. I reach forward, plant my stick, and pull myself toward it. I know how much distance remains, can still picture the curves, streams, and trees that wait; the landmarks that I must pass before this is over. I don’t want to look too far ahead. Right here where I am is enough. I don’t search for birds or look for wildflowers. I only think of the end, and relief, and of surrender. And I fall behind.

I catch a glimpse of my boy through the trees. Such a difference from eleven to fourteen. I made him come today, but when he was eleven, he wanted to come. He thought I was pretty and funny, and he told me things; stories he was dreaming up and ideas for inventions. I was his teacher, his ride, is mother. And then I was just sick. My isolation became his, and his room became a refuge; he lost interest in the wild world. His life turned virtual. My surrender became his and we fell behind.

I try not to feel guilty. Guilt is not a feeling, I remind myself. It is my standing before God. I didn’t afflict myself with Lyme disease. I did not choose to bail on motherhood; did not choose to end my flight in the web of this illness, did not intend for the adhesive of this malady to cling to my son and hold him back. But he was helpless against it and so was I. Lyme pulls me backward demanding submission, enforcing stillness. I cannot allow my child to stay here with me, trapped in this sticky silk; cannot allow him to be drained of life. I surrender. I fall behind. He must not.

So I say to my son, “Go on ahead, just stay within shouting distance.” Turn around, slow down, and come back to me sometimes. Walk with me a bit; tell me things, let me know what you care about, what’s important to you, and I will do my best to hear and understand. But then stretch your legs and take the lead. Love me by living out all my hopes for you. There will be days I can keep up better than others. There will be days when I will have to surrender and fall behind, but not so far behind that I can’t hear you. Not so far behind that I won’t have your back.

Lyme feels like this.

A Fish Out Of Water . . . Toss Me Back

A film has settled over my life. It blurs and conceals. It divides and separates. It sends down off-shoots that hang like curtains between my thoughts so they cannot reach each other, and I am left with disconnects all around; broken wires, their ends shooting out sparks of ideas that fizzle and fry and land nowhere.

Most days I live near the surface, helpless to break through the languid, lazy scum; other days I drift so low – – so far down that the sparks above, appear as harmless lights, like fairy dust or fireflies. Without heat or energy they float aimlessly above my head. And the film is not just a thin coating but seems to me to be the end of everything – – the place where my own personal atmosphere stops.

New treatments have, for a time, fallen like life preservers around me, shooting me through the stagnant ceiling. Under their influence, I have emerged gulping for air, walking out of this moribund pool to stand waist deep, even ankle deep, looking down on my enemies for a time, in awe that what had been a school of sharks was now just a bevy of insignificant minnows. I have stepped over them and entered, once again, my garden, my wooded trails and bike paths, and conversations with friends. But while distracted, busy, and happy and certain I had beaten my illness, the enemy rose again, inching its way up, reasserting its hold until little by little the foggy brain; the painful joints, muscles, bones, and skin; the numbness, stinging, and burning; the weakness, vertigo, and crushing fatigue rolled over my whole self, pulling me under. Clarity is, once more gone, and I wrinkle my brow, confused, struggling to understand what is happening to me.

There are days when I so want to see dry land, to walk where I used to and be who I was that I willingly pay the price. I kick and claw my way out and just let the mess cling to me, hauling it as best I can, but I don’t fit in anymore. I am flabbergasted by simple words, lethargic and weak. The lights, the sounds, the information rushing at me is too much; like a great, angry crowd poking and shoving. So I retreat and submerge. Staying under is easier, more comfortable than trying to navigate a wide, dry land with a fragmented mind and frail, tired body.

I don’t swim here, but I still dream of it. I am tossed, shifting in the direction dictated by my symptoms, different everyday but always present in some form. I roll and drift with the flux like so much wreckage, aimless and helpless to overpower this weighty affliction. I know God sees me. I know He hears, but from where I lie, it is hard to know what He is saying; to understand what He is doing. I squint and cup an ear, but I just can’t make it out.

I catch dull glimpses of people’s faces as they view me through the murk and mire, and I fear I make them uncomfortable when I can’t form words or when I stumble, when I don’t look like me anymore. When I don’t look healthy.

I don’t want to live here, in this watery cavern where my brain is dull, but it is becoming better than trying to live up there. Maybe I am evolving; adapting to this stale airless place. Maybe I feel safer where I can just be sick and avoid trying to act like I’m not.

Lyme feels like this.

I’ll Cross That Bridge . . . Or Not

When my legs were strong. When my heart was strong. When my lungs were strong. When I was strong, I hiked. I hiked up and down. I pushed through streams, water up to my knees. I loved to think about my muscles; to be conscious of how they contracted, how they worked to move me up those hills. On one of my strong days, I made my way down the side of a steep hill and saw a face I will never forget; one that has come to mind many times since I became ill. I passed the woman as she made her way up. One. Step. At. A. Time. She put one foot on each step and then the next. Then she stopped; stood still, waiting for the breath, the strength to get her feet on the next step. I smiled and said hello on my way past; made a comment about how it was a “tough climb”. She agreed but did not smile. Her face was grim. Grim and determined.

I moved on and rounded the trail, breathing it in – – all the sights I loved, the sounds I savored, the feel of it – – breezes through trees, packed earth underfoot, resting my back against rough bark or smooth rock, feet damp from puddles, sliding my finger across soft flower petals, running it along the edges of found feathers watching the barbs spring back into place. I looked back before I began my ascent up the other side and saw her still taking one step and a rest. That was the first time it ever entered my mind – – that one day, hiking could be hard for me, or even impossible. It became a frequent thought, and whenever it surfaced, so did she. I wondered after that, while I buzzed around the trails, how I would feel about life if I could not come back, if I couldn’t see the old growth forest, or the stream filled with stones whose brush with the living was forever hardened on their ancient surfaces. I wondered if the forest would notice my absence.

It has been over two years since I have been there, in the deep parts of the wood. I think of the woman and wonder if she had Lyme disease, like me. Sometimes I make an attempt. I set out on the trail, but am soon stopped by pain, fatigue, a racing heart, and a voracity for the air that surrounds me but somehow can’t find its way to my lungs. From somewhere a bucket of sludge-like exhaustion oozes down upon my head and slowly coats me, it grips my arms and legs in a weight I cannot overcome and drips into my brain, concealing my once clear thoughts in a dark cloud. Was the grim-faced woman making an attempt that day? Taking a stand? Saying to herself, I will get up this hill, and I will be in this forest among these trees and this life?

I tried yesterday. It was a rare trip out of town, already worn from the drive but in a place filled with trails that led to waterfalls, hidden streams, deep, cool caves I could not resist the pull. The trails were crowded. I have never seen a forest so filled with people. The way was precipitous to the most special places so stairs had been added to aid the hikers. The steps were steep and winding; people moved up and down like the notes of a scale played prestissimo. I gripped the rail and started down all the while uncertain if I could get back up. With people pressing on all sides all of my symptoms gathered for attack. I was near the bottom but stopped on a landing, once again searching for air. The crowd moved quickly past, and I had the sensation of being in a city. They were like me when I was strong, and I was like her – – the woman on the stairs. I froze. Anxiety, pain, weakness, fatigue were the bars of my prison. Did any of the passers-by recognize that I was trapped? Did any of them consider that my fate could one day be theirs? I turned around, never taking my hand from the rail. I inhaled deeply and took a few steps back toward to the top just wanting to be on flat earth with no bodies in my space. Then I stopped. I rested. Another step. Stop. Rest.

The top, the end, it had seemed impossible, but I was there and pulling in every molecule of oxygen I could find. My knees ached, the soles of my feet were tender, daggers kept my legs attached to my body, and I was incredibly tired. There was nothing to end the fatigue. Nothing. My husband was there supporting me, keeping me upright. We sat on a bench and faced a bridge. The bridge offered more forest, more wildflowers, more waterfalls, caves, and streams, birds and butterflies, trees and stones. More trail, more pain, more tired, more reality. My husband asked if I wanted to go on. Tears came suddenly. They were angry. They were sad. With broken heart, I knew I would have to go back to the beginning the way we had come. I would not see what lay ahead, only what had already been. I could not cross that bridge.

Lyme feels like this.