In The Beginning, Babesia

In The Beginning, Babesia

For most, it starts with a symptom. There may have been others before, but they seemed normal: An achy joint, headache, extra tired, a flu-like feeling. And they didn’t last. They came; they went. Eventually though, a sign of sickness, so bold, so brash crashes into our awareness and stops us. It may stop us from walking, remembering, speaking, moving, eating. Lyme embeds itself in every part of the body so it has a lot of choice as to how it will damage us.

This is the way we discover that we are sick. This one loud signal becomes the bellwether, and all the others begin to ring out until they are a cacophony of indicants and any pretense of health is finally done away with.

These symptoms shift and move; take turns. Like a pot of soup, some float to the top, but with a stir those sink, and a different set rises. It’s no wonder it takes so long to put them together; to give them a name. To realize they are Legion.

Lyme patients tend only to recognize the signs by looking back. In the midst of it, doctors try to sort it out. They name a condition to go with each symptom and a drug to go with each name. But when we finally find that one physician whose eyes and mind are open, whose medicine has kept up with the research, we get an answer. We exit his office armed with, and bewildered by, a new truth. We have something. We have Lyme Disease. One thing that’s really many things. Legion.

We climb into our car. Dizzy, exhausted, aching, struggling to recall the way back home. But at least now we know why. On the drive, we say to ourselves, out loud, “Oh, that’s why last year I . . .” or “I remember feeling . . . It must have been the Lyme.”

The harbinger of my decline, I believe was a protozoal parasite called Babesia. Most people don’t realize Lyme disease is caused by a bacteria, let alone that chronic Lyme is a whole army of infectious organisms. Although the symptoms of each do overlap, I look back to my beginnings and believe it was Babesiosis that rose up to conquer me first. I have two strains, but their symptoms are similar.

babesia duncani

My Lyme experience started in a panic. Not anxiousness, nervousness, not fretting, or worrying; a panic. My mother had passed. I thought that was why I was lying awake in my young son’s bed trying to protect him from the people I believed lurked outside his window. I thought her death was why I began blacking out; once, while driving, long enough to take out a mailbox. I thought that was why I was seeing things and people who were not really there. It was stress. It was normal.

It stopped, and I moved on thinking I was over it. But during the next 7 years, these things would come and go along with other warnings.

In my pre-Lyme existence, I avoided doctors, but two weeks of nightly fevers, vomiting, and diarrhea finally forced me to drag my embattled body into my physician’s office. He was surprised to see me. It had been three years, after all. But he managed a whole five minutes with me, ordered a complete blood count, and told me to make sure I was up to date on all my “female things.” I complied, and one pap smear, a vaginal ultrasound, and stool test later, knew I had a benign cyst on one ovary, blood-free stool, and a hemoglobin of 9.6 – – nearly transfusion-worthy.

Sometimes, I imagine the little parasites, like enemy submarines, swimming through my vessels, blowing up red blood cells. Lysis: It means “to loose” or to “unbind”. That’s what Babesia does to a red blood cell. Like a microscopic battering ram, it breaks down the cell wall so all the vital ingredients inside drift away and disintegrate. Other times, it inhabits the erythrocytes; forms them into little groups. “Sludging,” they call it. This clumping against the walls of capillaries, and arteries, blocks roadways built for lifeblood to travel. Red blood cells are transporters, delivering oxygen to every part of the body, and while their at it, dispelling carbon dioxide so we’re not poisoned to death. When I am doubled over sucking in air without relief from the feeling of needing it, when I can’t stop yawning, when my hearts jumps like a cricket in my chest, or pounds like a hammer, Babesia is at work starving my tissues and organs of air.

I know Babesia well by now and am certain it inhabits every area of me, but it has an affinity for the hypothalamus and prefrontal cortex. I don’t know why this is, but I do know the consequences.

The hypothalamus is a stabilizer. Homeostatis is this gland’s job. It controls the body temperature, thirst, and appetite. It lulls us to sleep or drives us to stay awake for sex. Oxytocin, that hormonal hug, is produced by this gland, and helps us feel relaxed, happy, loving, empathetic, and over all more mentally stable. The prefrontal cortex houses the personality, and many forms of complex thought; problem solving, decision making, management of social behavior, concentration in the midst of distraction. It manages our moods.

Living with dysfunction in these areas, as well as with red blood cell killers means sudden shifts in mood and emotions, instant alterations in one’s physical and mental state, disruptions in cognitive capacity, and depletion of energy.

I am on fire. A hot ache inside my chest, swells, then unfurls. It rolls through my torso, filling the length of all limbs; culminating in a stinging tingle to my extremities. I grip the arms of my chair and lean forward, gasping at the onset of this ignition. I want to tear off my skin; find my way out before my body erupts. Night brings fever and drenching sweats; I seek relief in a long, quiet soak, but the bath water is too warm. I feel my last breath coming; my heart will stop. I imagine my family discovering me lifeless; my head, one arm draped over the edge in a failed attempt to find air. Summer’s heat is a thick sludge. It seals me in, and I slog through, heavy and lethargic. It seeps into my brain, and I cannot think or understand.

I am frozen; my toes cold, pale. I know they will snap if I’m not careful. The sounds of shivers and chattering teeth reveal my location under layers of clothes and blankets. I go outside bundled in long underwear, wool, and down only to find myself sobbing because despite the layers, I am unprotected. Glacial air knifes through my skin, my muscles; all the way deep down to the bones. Then I peel it all off like a wild woman trapped in a cage inside a pit of fire; clawing and scratching my way out, fearful once more of an impending detonation.

I am exhausted. The sleep of Babesiosis is a never-sleep. I close my eyes, but don’t rest. My mind is busy, one incohesive dream after another, after another.  My eyes open in the morning, but I have only switched worlds from restless night to bone-weary day.

I am a wreck. A cluster of nervous paranoid anxieties fill my head and sit like a stone in the pit of my stomach. A heavy blanket soaked in despair, defeat, and sadness drapes my whole self and keeps me pinned down, robs me of light and air. I cannot lift it; cannot crawl out from under so I let it hold me until it doesn’t.

I am numb. My personality has vanished. Where are my emotions? There are days, when faced, even with the death of a friend I am unmoved. As I exist in this strange anesthetized pose, I am conscious of it’s oddness; wonder in those moments why I am not crying, why I am making a pretend sad face as I hug loved ones. Why I feel nothing.

I am confused. Oxygen cannot be late to the brain without upsetting the whole operation. I am sick of standing, clueless, in the middle of a room, no idea why, nor what I am meant to do, and often no memory of getting there. I am weary of panicking when my phone calls are answered because I have no idea who I called or why, or can’t remember answers to questions like, “What’s your date of birth, your social security number, your name?” I’m weary of having to change passwords because I can’t get letters in the right order. Babesia inflames the brain, causes it to swell, blocking blood flow. I know when it happens because I become a fountain of tears; leaks sprung by jabs of despair, anger, frustration, happiness, fear. Emotions bundled so tightly together, fighting for control, they rule me until the Babesiosis is, again, muffled.

I am in pain. There are days, Babesia sits in the middle of my forehead and hurts without relief for months. My neck is strained, fatigued. I cannot hold my head upright for long and feel as if I am stopping a locomotive with the back of my skull. At times, I think the little bugs are lodged in my throat because I cough and cough until it’s raw. My muscles spasm and ache, quadriceps unable to bear the weight of a magazine, deltoids feel as if I’d endured ten tetanus shots the day prior.

Like the contents of my red blood cells, I am undone by Babesia. My personality – – who I am – – my emotions, thoughts, understanding have all been let loose. I am drifting away. Comfort and peace, things I once possessed, are now unbound. There do not seem to be any walls to keep me together or keep me safe; no place of rest that cannot be invaded by these creatures. ‘Loosed,’ ‘unbound,’ may conjure ideas of freedom, but this is not that. This is a disorientating, perplexing push from behind into open air with no sense of place, no certain hope of landing.

Lyme feels like Babesiosis.

Lyme feels like this.

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I Have a Real Disease

I Have a Real Disease

I have a real disease.

I have five real diseases.

I have five chronic, incurable, infectious, real diseases.

They avoided detection by burrowing, wriggling, turning, twisting, and wrenching their way into the walls of my blood vessels, into my glands, heart, lungs, muscles, and joints. They have wrapped themselves in the very white blood cells meant to destroy them and used them as a cloak of invisibility; have crippled my immune defense by simply switching it off. But like all living things, these bugs have a DNA sequence, and turns out, all I had to do find them – – to break their secret codes – – was pee in a cup. Now my enemies have been laid bare. I have a list of names, and I’m going to call them out one by one; going to wave them like a flag and wear them like a badge of truth.

There is an insatiable craving within the Lyme community. Like a single-minded hive, we don’t need to say it out loud, we all sense it. We understand the dance of sagging shoulders, heavy sighs, clenched jaws, and frustrated tears.

Validation.

Beyond a cure, it feels like the thing we want the most. We are weary of walking away from conversations and questions about our disease feeling like frauds, knowing we’re not, asking ourselves if maybe we are.

At times, we are bitter. Greater in number than victims of HIV/AIDS, breast cancer, or Zika, we watch the concern and compassion with an ache in our chest. Not that we desire less for those victims. After all, we understand suffering and know what it’s like to lose our health. But it is disheartening to reveal our diagnosis to responses like, “Well, did you have a blood test?” or “Did you see a tick?” If we seem to set our shoulders and tighten our jaw; to snap out a short answer, it’s likely because those questions imply doubt. Imagine asking a cancer patient if he’d had a blood test – – if he had proof.

At times we are jealous. Before a single case of Zika had made its way into the United States, a request went out from the White House for 1.8 billion dollars to fund research and education. We, on the other hand, are more than 300,000 thousand strong per year and still struggling to be heard. We cry for help, but it falls on deaf ears because we reside behind an invisible wall of ignorance, greed, and closed minds that continue to deny our existence. We pound our fists and shout our pleas anyway, but this feels like an awful secret that, try as we might, we cannot seem to reveal.

We have an “awareness month” during which we bombard our Facebook and Twitter feed with scary stories of Lyme victims whose hearts have needed replacing, who wake up completely paralyzed, who were institutionalized for psychiatric disorders only to learn they had Lyme on the brain. We plaster the faces of Lyme-infected celebrities on social media in hopes their name recognition will lead to our affliction’s. We blog; typing, deleting, typing in hopes of finding the right words to describe a fatigue that’s more than fatigue, a brain fog that’s more than a fog, and pain that travels from joint to joint, muscle to muscle, and coats are skin. Our special month is May, when most begin to bask in a new spring. But we know it as a dangerous time. Visions of poppy-seed-sized tick nymphs fill our heads while we obsessively check for them, slather our skin in repellent, and our clothes in permethrin.

Like cancer, Lyme disease eats away at our insides, the treatment makes us so much worse initially that it has to be given in stages, and the best we hope for is remission, not cure. Like HIV, it disables our immune systems either to the point that we get sick with everything else, or we get sick with nothing else because our bodies, already overwhelmed, cannot respond. Like Zika, it is vector-borne and can cause birth defects, miscarriage, and still births. Though most cases are transmitted via deer ticks, the bacteria that causes Lyme itself has been identified inside the guts of mosquitoes, gnats, and fleas.

So here are my results, those secret codes revealed.

IMG_20170518_224418606

Five check marks represent what my chronic Lyme truly is. It isn’t really Lyme. Borrelia is the causative agent of Lyme disease, and I have it, but a tick’s belly holds a lot. The chronic version of the illness, is a conglomerate of hideous microscopic organisms, each one, classified by itself, as an infectious disease; each difficult to treat and never completely eradicated from the body. This is chronic Lyme for me. This is chronic Lyme for everyone who has it.

So take us seriously because we know what we’re talking about. We know of panic attacks in the middle of the night, drenched in sweat, eyes open and bloodshot. We know pain that moves through the body like a rat in a maze; like millions of tiny lightening bolts. We know tired. So tired. The body winding down, every step like climbing the steepest hill; the lift of an arm to massage a constant headache too much effort. We know the loss of a mind. Roads familiar all our lives, to and from work, to and from the grocery, no longer recognizable. We know what it means to feel lost, unable to find the way home. We know racing hearts, the feeling of not having access to enough air.

So don’t be the person who asks about our illness, witnesses sorrow cloud our face, hears the catch in our voice recounting the loss of mind and body, and then casually mentions that you had a tick bite with a rash “a couple weeks ago.” Don’t wave off our warning to get tested and treated immediately. If you do, we’ll inform you that Lyme reaches the central nervous system within hours of a bite. Don’t laugh and say, “Well, too late for me, I guess” then walk away while we are left remembering days when we could not walk, laugh, or speak. Don’t be the mother who tells us your child as been bitten and has a rash, fever, and is vomiting; that your doctor offered antibiotics, but you turned her down because you felt it too “risky” for your child. Don’t tell us you consider a temporary course of antibiotics more dangerous than a lifetime of neurological damage and pain; a lifetime with a disease that has ended our life as we knew it. Don’t leave us perplexed, wondering how you can be so dismissive of all we have endured.

I say ‘we’ and write of ‘us’ because we are a community of sufferers. This is not just one person’s Lyme experience but the experience of millions of people around the globe so don’t think it unlikely you could one day join our group. Lyme has no trouble finding hosts. Know that if you have a multitude of symptoms, there’s a real chance it may already have you.

I have five diseases. They are chronic, incurable, infectious. They are real.

I have a real disease.

Lyme feels like this.

Making Gardens From Ashes

Making Gardens From Ashes

It seems yesterday the grass was brown and brittle, but today it’s a bright, verdant blanket. Spring-green somehow happens overnight, but Ohio’s winters are stalwart so I’m on my back porch blocking the residual chill with a blanket and enjoying every minute because I know soon this air will be thick and hot, forcing me indoors.

For now though, it’s just right for growth to begin. Only three days past, my daffodils unfurled their little, green heads and pushed out from under the soil. Today. those plain shoots wear bold, yellow crowns and are making quite the splash in my winter-weary garden; foretelling brighter days ahead.

My gaze holds steady and straight across our wide backyard, but I am aware of my old herb garden just off to the right. I don’t look because the memory is nicer. I used to sit on the ground in the center of the plot, eye-level with the bees, butterflies, and a myriad of mysterious insects I could not name. tiny bee pollen legs on coneflower fernaldI stare forward at a sea of jade, but in my mind I see clustered spikes of Lavender. I remember purple Oregano, deep green Spearmint, variegated Pineapple Mint; Coneflowers in yellow and purple, and creamy Yarrow mingled with lanky, wispy Tarragon.

Then I look. I see the old bed, three years neglected, and make a decision.

I am going to burn it.

Sound crazy? Like I’m angry or frustrated? I am a little of all three, but this will not be a fire made of anger or despair; it won’t be intended for final destruction. This fire will consume first, swallowing up all evidence of life. A magical inferno, it will create the illusion of total destruction. My garden will be a flat square of scorched, dead earth. It’s situation will appear hopeless.

But not for long. Resurrection will be just around the corner. This coming inferno will damage and maim, but it’s goal will be restoration. As we have established, brown and gray transform briefly to viridescent then onward, in an instant, to emerald.

Controlled burning is a tool of replenishment.

The weeds that have suffocated my herbs and flowers have had three years of unchecked growth, and are powerful now. I was forced to look away and let them take over. I had no energy or strength. I couldn’t lift a shovel or even a spade. I couldn’t push them into the earth. My grip could not hold and extract the relentless invading flora.

Friends offered to help – – to keep it up for me, but I refused and could not explain why. My garden was a part of me. It would have been like someone offering to take care of just my heart or only one lung while the rest of me eroded.

I possessed an intimate knowledge of my piece of earth, one that no one else could. To visitors, it was about the blooms and blossoms. But my hands had been in the dark places, deep in the soil. I had cried there more than once; pondered and prayed while my children struggled. When I had to watch them walk through trials, the endurance of the plants comforted me and convinced me my offspring would be alright. I mourned my mother in that garden, letting the sweet, savory fragrances fill me; the steady bombilation of bees calm my racing heart. I sat in the dirt, certain of life’s fragility, but soon rose again, convinced by God’s creation that life was stronger than death and would, in fact, never end.

So my garden and I had to decline together. Nothing else made sense. I let it go; let it fade into the lawn like an old grave while I crawled into bed and endured a take-over by my own invasive enemies. We both succumbed to the slow strangulation; the loss of sunshine and fresh air – – my plants shrouded beneath eager weeds; myself beneath bed clothes and behind curtains.

Now, it’s time to start over, and for that, I need a flame that will burn until nothing appears to be left; a blaze hot enough to kill the marauders. I am not afraid  because I know the good things will come back, that just beneath the surface, the Oregano, Lavender, Tarragon; the die-hard Mints, the Coneflowers and Yarrow, will be on their way up. As soon as they open, I’ll sit in the middle and soak up the colors, inhale the scents, and watch the bees.

I talk to my garden. So I’ll apologize for the fire; explain it was for the good. I’ll offer assurance that I won’t grow an abundance because I can’t take care of too much, but I’ll grow a little and harvest a little. My garden and I will be useful again.

I will bury my seeds, put them to death, and believe with all my heart that God has the power to reach into the dark and bring them back to life; that He will cause them to grow, to open up and reach for all the light they can find.

My garden and I faded away, but with careful tending, lots of light, and air, and the right nutrients, maybe we can grow something this season. Maybe out of the ashes something new and beautiful will emerge. Maybe it’s already there, just beneath the surface.IMG_1150

John 12:24-24 Truly, truly, I say to you, unless a grain of wheat falls into the earth and dies, It remains alone; but if it dies, it bears much fruit. Whoever loves his life loses it and whoever hates his life in this world will keep it for eternal life.

Romans 5:3-4 We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance and endurance develops strength of character. And character strengthens our confident hope of salvation.    

Lyme feels like this.

Almost . . . But Not Yet

Almost . . . But Not Yet

Springtime.

The almost but not yet time.

Encased in tiny shells of varied colors, beneath mother’s feathery breast life’s heart is beating, her lungs preparing to breath.

Tucked under the loose bark of a tree life can feel the breeze warming and maybe today, maybe tomorrow, she’ll leave her winter retreat, settle into a circle of light and hold open her wings til they’re warm enough to fly.

In the pond, life rolls and shifts inside translucent bubbles that cluster in corners on a slick green surface. Life will shed its tail, find its voice and legs, and will croak, chirp, and jump until the sun’s touch cools again.

Three springs ago, inside of me, life began to struggle. Underneath layers of down blanket, thick robe, warm pajamas; below tender skin and aching bones life’s heartbeat was erratic. Breathing no longer felt involuntary but forced. Life was cold – – colder than it had ever been; it seemed to want to snap my toes and fingers like twigs or break my chattering teeth. On the outside, life’s joints were swollen and  painful; its gait stiff.

In my head, life wasn’t thinking straight. Confusion ruled the day and wild exhausting dreams, the night. Things that did not exist were seen clearly and things that did exist escaped notice or didn’t compute.

That first Lyme spring, I reclined on the back porch, stretched out on a cushioned lounge chair, my head on a pillow, cocooned in blankets, only my face visible and turned toward the early spring sun.

Outside life was beginning to hum.The buzz of insects flying overhead lulled me in and out of sleep. Internally, life was buried by an oppressive fatigue that covered me like a thick, slow sludge. From my vantage point beneath the eaves, I saw birds fly over the roof and out of sight and wanted to keep watching. yellow-rump-warbler-in-flight I didn’t want to sleep. Life was waking up, and I wanted to join in, but it was beyond me to stay awake. I tried to hang on by listening hard to the Wrens’ trills, the Towhee’s insistent ‘drink-your-tea’, the buzz of the Red-Winged Blackbird. But I kept letting go; falling into those odd dreams under the frenetic control of the bacteria in my brain.

Now, it’s springtime again. The beginning of my fourth year sick, and I am almost, but not yet well. I am on my back porch wrapped in a down blanket; cold, but not freezing, fatigued but not asleep, knees sore, but I am mobile – – no cane, no crutches. I don’t have a pillow because I’m not lying down.

I am sitting up, resting but not idle because I have my camera and am snapping pictures of a Yellow-Rumped Warbler, trying to determine if he is a Myrtle or Audubon’s. He’s just passing through so I know how blessed I am that he stopped to rest in my tree and that I get to watch him fluff, and primp, and stuff himself with insects before he flies away.differnt-angles-yellow-rump-warbler-5

Three springs ago, I was blessed to gain a brighter awareness of life; a more acute sense of how precious it is. I know I may be in a permanent springtime – – always almost and not yet. Nonetheless, life has won a few battles inside me and almost is better than never.

Romans 8:18-25

Lyme feels like this.

 

I Know I Am Dying

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.

You Look Great

You Look Great

I look great. That’s what you’re telling me anyway. Oh, I know you don’t mean Beyonce-great. You just mean I don’t look sick. Great. I shrug. “I feel pretty good,” I reply. But, you don’t see the uncivil war inside; can’t know that I am wishing with all my might, to crawl out of my skin and get as far away from my body – – my battlefield – – as possible. Good riddance army of malicious bacteria. Stop assailing my tissues and ruling my life. I can’t strip you of power and end your reign so I settle for dreams of exile.

You are sitting with me in this park, but cannot detect the presence of my enemies, these invisible bacterium invading my realm. I’m not expecting you to. Most blood tests can’t find them. They are masters of the clandestine, concealing themselves from my immune system, antibiotics, laboratories, doctors, researchers; leaving no visual trace when you look at me.

I know their names; Borrelia burgdoferi, Bartonella, Babesia among others – – partners in Lyme. I feel their effects. Right or wrong, they are the most real thing in my world, and even though I cannot see them, they are looming larger than anything else. They are enclosed by my flesh, living and working inside my body – – a whole society of overtakers. Come closer and you might run into them. You might notice some things are off – – these puffy dark pouches beneath my eyes, this slight veer to one side when I walk, this limp, my aimless sort of antihistamine-like stupor. But no . . . you are too far away on the outside.

You’re noticing that I seem tired and acknowledge you’ve heard Lyme disease makes people very fatigued. My hopes rise a bit as I affirm that it does. But then you bring up the weather. You suggest it might be this weather we’re having. After all, this weather makes you feel tired. So, I don’t bother with detail; don’t tell you that all I know of ‘tired’ is what I remember, how much I liked ‘tired’, how good it felt when it followed a long hike or a productive day in my garden. ‘Tired’ meant I had done something. I don’t tell you how it is getting harder to remember myself before this disease. Instead of trying to explain, I nod agreement and blink a lot, trying to stay awake, but I am fading; feeling this sludge of exhaustion coat my limbs, painting me with a weariness heavy enough to keep me still no matter how badly I wish or need to move, stealing first my ability for motion, then my desire.

I am wondering if this weather makes you feel like you are trying to hold up a car with the back of your head. Does it encase your arms and legs in the same iron sleeves I wear? Does it make chopping a vegetable akin to climbing a salmon ladder? I often turn to the Psalms for comfort and find the singer speaking of God as the lifter of his head. I know literally what this means. If God didn’t hold my head up some days, it would just stay plastered against the bed or the back of a chair. And some days He doesn’t.

You are suggesting we walk a bit. Do you see me cringe? It’s there, right under my smile . I am aware I can’t sit forever but really don’t want to bear my weight. One of these bacteria must have thousands of tiny fists whose only job is to pound the soles of my feet day and night. It hasn’t let up in almost a year. I am gritting my teeth as I stand. You are chatting, but I am distracted,. I can’t help it – – thinking about how hamburger might feel if it had feelings – – would it feel like my feet? Maybe the tenderness, but then there’s the burning, buzzing, stinging, tingling. I doubt hamburger would feel that way. A fleeting thought of lying down, of relief, and then I remember my heels can’t touch the mattress; my toes can’t bear the weight of the bed covers.

What did you just say? I was thinking maybe I should stop being stubborn and just get a cane, or a wheelchair and missed your last comment. You are laughing, so I laugh too, but have no idea why. (I can’t imagine I really need to go that far – – a wheelchair? Wasn’t I hiking up and down ravines a few months ago? How could I possibly need to be wheeled on a paved, flat trail or through the grocery store?)

Oh, you were saying something about how you heard Lyme causes arthritis. I think, ah, you believe in my pain. Then you ask if my knees hurt and I say, “Oh . . . yes!”

“Well, honey, at our age what do you expect? It’s time for our joints to hurt.” I know you are only trying to reassure me, letting me know my pain is normal – – for my age.

I feel a strange need to defend myself but fold up inside instead of pointing out that my knees didn’t hurt until I got sick, that turning forty-eight doesn’t mean every joint in my body should suddenly feel full of knives and needles, that my skin should hurt, my muscles should burn and ache, or that lightening bolts of pain should strike in my legs, arms, ribs, ears – – wherever they please. It shouldn’t mean the weight of a book on my lap is more pain than I can bear. A closed-mouth smile is all I muster.

We stop walking to stand and talk. Do you see me favoring one foot, then the other, until I finally point out I need to sit? Your side of the conversation never misses a beat, but I’m not hearing much as I am so focused on the bench ahead. Like a marathon runner at mile 26, that 0.2 feels like the longest day of my life only I skipped the 26 – – all I have to do is this 0.2. I am gripping the arm of the bench, knowing my pain shows on my face, in my movements, but you’re showing me your new shoes. “They’re cute,” I say, recalling all the shoes in my closet, unworn for the last year – – dress shoes, boots, tennis shoes, running shoes, all of them like wearing a bed of nails or pounding hammers.

What did you just say? I’m ashamed to ask, ashamed I missed it – – again. I listen, but lose track, certain I am a couple of sentences behind by now. Don’t take it personally – – I am trying, really. And will try until I am exhausted, until panic sets in because the word I need to retrieve from storage is taking too long to locate. I fear I may pick the wrong one, or maybe I already did, because you’re looking at me funny. Words, thoughts, ideas, whether yours or mine, do not flow and connect the way they used to. They are stuck behind a bacterial barricade, piling up into an unmanageable aggregation. Sometimes I get up and wander around, not knowing why, and then I think maybe I’m looking for all the words I’ve lost. I see and hear you but from a rudely awakened state, as if someone dropped and shattered a plate next to my ear while I was in the deepest part of a dream sleep leaving me in a groggy limbo.

I consider explaining that my white matter probably resembles swiss cheese, but I know you would assure me once more that it’s just menopause or old age, and joke about how you’re forgetful too. Something like, “Let me tell you, I have cognitive deficits, and I don’t even have Lyme disease. We’re just getting old.” You would think that was funny.

Does turning 48 mean forgetting how to get home from work? Or struggling to spell words you learned from Dick and Jane? Or recalling your address or phone number? When you reach your midlife, do you really think flipping the light switch will turn on the dryer, or pushing on the rearview mirror will turn off the car radio? Is it really so hard to discern left from right in your late forties?

I am hoping you don’t suggest following me home for a visit. We might not make it. I might not remember how to get there, or I may have to stop and ask you where we are and where we were going in the first place. As we discuss those things, I may see something and comment on it. You would wonder who is crazy, me or you? You may not see what I see, but don’t worry, it’s not you losing it. Sometimes I see things that aren’t really there. Is that normal for my age?

You are hugging me and I realize you must’ve said you were heading home. I’m hugging back and wishing I had been more attentive, more absorbed in your world, your thoughts, your jokes and stories. But your words and their meanings seem to float across a slow moving pool toward me and sink before I can catch them. I have to dive down and by the time I surface, so many more are coming my way. I’m afraid I grew weary today and let many of them drift past.

Waving, you pull away and I sit still in my car, in the quiet. My body hurts. Not a centimeter of my frame is pain-free. I dread turning the wheel, my upper arms ache as if I had ten tetanus shots in each one the day before. My fingers and wrists may snap it seems. My calves, shins, feet, ankles, hips, back, ribs, head, ears, shoulders – – all owned by pain. Which way is home? Right, no wait, that’s left, right is the other way. Isn’t it? I’m not sure, but head out anyway and things look sort of familiar so I keep going.

I am wondering if you think me a fraud; maybe an attention-seeker or hypochondriac. Who has this many symptoms? I must be crazy. You always try and tell me I am just like you – – that you forget things, your joints ache, you feel tired. But, you are going to work tomorrow. I cannot safely work as a nurse. I tried for awhile but procedures I’d done a thousand times were impossible for me to complete in the right order. I’m still not sure if I filled those last few pill boxes right. You mentioned what you were making for dinner tonight – – a new recipe. You will be able to follow a recipe today – – even after a walk in the park and a conversation. I tried to make an egg this morning – – prepared my skillet, cracked the egg, and opened it onto the stove top instead of into the pan. I watched it lying sunny-side up and battled to understand its cold, runny state. Something was wrong, but it was a good minute before I found the answer and formed a plan to clean up the mess.

I’m not like you, and for some reason I can’t quite understand, I really need you to know that – – to cut me some slack, to lower your expectations. Instead, I feel as if I lie in a coffin made of frosted glass. I keep trying to tell you that I am trapped, that I can’t move, that it hurts, that I am losing my way and my mind, but you can’t quite see me. I’m not clear to you. So you keep going, and I give up sometimes and lie still. I stop trying to communicate my suffering and wonder if maybe you’re glad I’m in here – – where you can’t really see or hear me. Maybe that’s why you keep trying to tell me I’m O.K. Are you trying to feel more comfortable with my decline? Maybe you are sad over my failing health, but don’t want to be, so you keep slinging a positive attitude my way – – but it’s just bouncing off this glass lid, not because I don’t want to feel positive, but because this lid is real.

Isolation is worse when other people are present. If I were trapped in this coffin and no one was around, I would not hope for an understanding, empathetic friend. But every time you walk by, I hope. I hope you will be sad with me when I’m sad. I hope you will encourage me, not by denying my illness, but by acknowledging it and knowing that I cannot walk far, or stay awake too long, or always understand your words. I hope you will be in this box with me as best you can so you will know this war is real, my enemy is strong, and that even though I win a battle now and then and have a good day, I have a long way to go before I win this war, and likely, I will never have a clear and final victory; there may be scars. I may have physical pain the rest of my life. My brain my never work as well as before. Even if I hike again, an overgrown path will likely always cause a cold sweat and rapid heart rate. The tiniest tick will swell in my imagination to a giant disease-ridden monster and the uninhibited joy of the trail will never be the same.

But the most prominent scar, I think, will be the knowledge that I came through a war – – that my whole life was changed, became a fight, that for years I lost much, and you will never know. For you it will be as if nothing happened. A majority of the medical profession, of which I have been a part for 30 years, will not believe me. I fear the isolation I felt in my illness will continue after I am well. I will have a membership in a secret club to which I will never really want to belong. Those unwelcome members – – Borrelia, Bartonella, and Babesia – – they’ll always be lurking in the dark corners, blowing poison smoke, never gone completely, always looking for opportunity to rise again. There will be others like me, my comrades in arms, who will know without words how I feel because they have felt it too – – they will be keeping their eyes on the enemy the rest of their lives, just like me. But not you. We are close; maybe friends, spouses, sisters; maybe you are my child, or parent, but you will never really know. I wish you could know for my sake and for others like me, but I hope, for yours you can remain a pacifist – safe from this chronic, destructive war.

Lyme feels like this.

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.