Lyme – Lyme Feels Like This

I Didn’t Want This Really Nice Bike

My husband got me a new bike.

He didn’t ask – – not this time. Just said, “I’m getting it.”

He asked the first time, a couple of years ago; took me to a bike shop along our favorite trail, a trail he’d ridden not long ago by himself. I remember that day – – the day of his solo ride – – It was the first time I realized I was angry about being sick.

He came home drenched in sweaty exhilaration, no effort to hide his delight. I wanted to knock the endorphins right out of him but instead, pounded my pillow. I yelled, cried about wanting my old life back; about how could he do it? How could he ride “our” trail without me, knowing my joining him wasn’t even an option?

He tried to hold me, wrapped his arms around from behind – – probably afraid I’d hurt myself. I told him to leave me alone, and he did. He went outside and took up some project I’d begged him to finish, or to weed the flower bed that I couldn’t – – something to make up for abandoning me, for having fun while I was stuck at home, mostly in bed, in a body of pain – or maybe he was just trying to get away from all the emotion.

I felt horrible; couldn’t believe I was treating him this way. I could tell he was panicked, confused by my reaction. But I couldn’t seem to help myself. I wanted out of my body, to be free of the ache that had settled into my skin, muscles, and bones. I wanted to crawl out, to liberate myself from a soul-holder that was crushing my soul. I wanted to ride my bike, to go fast.

But I couldn’t so I settled for getting out of my house.

This was no small feat. It was probably a more horrible idea than riding a bike, but, like a thief bathed suddenly in flashing red light, I snatched my car keys and headed for the door. I still had trouble remembering which side of the road to drive on, how to get home, what a stop sign meant. I still had vertigo. The bottoms of my feet were still too tender to press the pedals without pain, but for the first time in months, I got behind the wheel.

My husband’s panic did not subside.

He’d brought our daughter out to help weed. I still remember her watching, without a word, her mother’s head explode. But I didn’t linger on her face. I was sick of feeling guilty on top of feeling sick. I was sick of being chauffeured; sick of being watched, helped, protected.

So, I drove. Not far but to a place more painful than even our old bike path, another place I could not go anymore to be who I once was. I didn’t have complete sensation in my legs most of the time, and I was weak. I hobbled and trembled toward the closest picnic table where I collapsed, staring at the trailhead. I wanted to hike, but I couldn’t. I wanted to ride, but I couldn’t. I wanted to be a partner to my spouse and a mother to my children, instead of an invalid. But I couldn’t.

I sensed myself trying to harden against the longing, trying to feel nothing, but this was my place and, without a sound, I wept. I’d shared this space with my dog before she died and occasionally with my kids, but mostly, I’d come alone. My exile from here had produced a craving – – not like when you really want candy or a cheeseburger, more like the ache you feel over the absence of the one you love most. It had been so easy to pray here, so simple to set my mind straight. It was a place where I’d put one foot in front of the other, worked my way up hills, learned to feel small at the bottom of ravines, and remembered the big picture from their peaks.

Biking was different.

I’d never considered myself a “cyclist,” had no interest in squeezing into tight uniforms or locking my feet into pedals; was never intent on beating a clock. I just loved to ride my bike.

It was like getting into a swing or slipping down a slide. On my bike, I found my child’s heart. It’s a quiet experience, the hum of skinny tires, birdsong, a breeze streaming past your ears. It was fun to be speedy, to try and run over crunchy leaves, to reach overhead and let my fingers touch the ones on the trees, to stand tall on the pedals, or ride with no hands.

My husband could still do all those things, and I understand now why, many months after my tantrum and my driving rebellion, when I was a little more mobile, he tried to get me to try a “more comfortable” bike.

I wasn’t angry the day he took me to the bike shop, just sad – – as if sad is better or less. He fed me first at a nice local restaurant. We sat outside where I could see all the people on their bikes. I recall that not helping, but I didn’t say anything. After dinner, he spoke a gentle command, something like, “Let’s go. Just try one.” And we went. He was taking me to look at the cruisers — the Townie Electras – the comfortable bikes.

When I was well, I actually wanted a Townie. They’re a charming vehicle; hipster, with cool baskets and shiny fenders. But that was different – – that was a choice for days when I might want to wear a skirt and sunhat to ride my super cute bike to the street market or something. It wasn’t because leaning forward onto my time trial bar or sitting on my skinny racing seat just hurt more than I could tolerate. It wasn’t because I was disabled.

We looked that night but didn’t commit. I ended up in the car with my head on my husband’s shoulder sobbing, not ready for what I referred to as “a sick person’s bike.” It felt like giving in to something that I just wanted to go away.

Back to now.

He bought it, and I keep it in the back of the van so it’s handy whenever I want to stop for a ride. I still don’t ride “our” trail without him. It’s just too lonely, but I’ve found other paths for myself, and we go to ours together, knowing that he’ll go farther and faster, that I’ll need to turn around sooner; take my time, take more breaks.

I don’t zip past people anymore and rarely call out, “On your left!” I have days when I struggle to pass people walking, when the sight of them up ahead makes me cringe at the effort getting by them will demand. My seat is wide and cushy. My back is straight. I have seven gears and use two. I wear a sunhat and am in the market for a basket – – but it has be to wicker, and it has to be darling.

I didn’t want this really nice bike. I didn’t want a chronic, debilitating disease. I now have both. Sometimes, that’s just the way it goes.

On a recent solo ride, I was headed up a hill, amazed that I was doing it. Riding my bike; riding it up. I had on my sunhat, baggy pants, and sandals. (Sandals to ride a bike?) I was working those pedals for all I was worth, stunned that my muscles were still with me, and then I heard it.

“On your left!”

A guy, feet locked in the pedals, body squeezed into a second, endorsement-covered skin, helmet fastened down, flew past me up the hill and beyond, racing to beat the clock fastened to his handlebars and the one ticking away inside his head.

I laughed. No weight-of-the-world sigh, no sorrow or despair. I laughed at the picture of me eking up that small hill on my “sick person bike” while he whizzed onward. The laughing nearly cost me the thrill of reaching the summit – nearly, but I made it. When I got to the top, I could see him far away already. I took a break to look at the river, now below; to watch Herons wade and Kingfishers dive.

My old bike is silver, a smooth, swift ride — quiet and faster than my husband’s touring bike. (Maybe that’s why he wanted to get me another?) I pushed left of a lot of people on that bike. It was great, the speed, the feeling of strength, of dominance.

Odd, how much stronger I felt struggling up that little hill. I felt stronger than that fast guy. It was easy to whiz past when I was healthy; easy to get healthier, when I was healthy. But, the way I see it, I’ve been persistent, diligent, steady in trying to get up a hill for the last four years, or more like a lot of hills, and every tiny summit has been a happy surprise.

I’ve a new moniker for my Townie. Not a “sick person bike,” but a “restorative bike”; a bike that gives me grace to slow down and take in all the sights along the trails I couldn’t visit for so very long; a bike that brings me back to familiar and longed-for places, that restores my child’s heart. She’s a bike that says, “It’s Okay to not be completely healthy, to feel weak, to go slower than I used to. It’s Okay.”

On second thought, look at her, the sweet little hipster. She’s a bike that says, “It’s cool.”

Try And Try And Try Again – – Or Not

Gardens in early spring are broken, dry, and brown, but if you look underneath the leaf litter and last year’s mulch, you’ll find green.

It’s the same every year. I snap off the old dead stems and seed heads and toss them into the compost where they rot themselves into nourishment for the new florae. I try to clear the way and clean the slate. I add new plants, divide the ones too big for their own good, and remove those taken by the cold.

Every year, I start over.

But front to back, and side to side, my plot is filled with stubborn invaders.

Gooseneck loosestrife is lovely, but I didn’t research it, just stuck it in the ground delighted by its drooping cluster of dainty, white blooms. I soon learned it’s not meant for containment but needs its own space and will choke the life out of everything else to get it. An apt name, it is on the loose and causing me immense strife.

There’s also common speedwell – – not native to North America, it’s certainly made itself at home. Every spring, I think I’ll just give in and call it my ground cover. But, every spring, I tug and tug and tug it out, knowing my efforts are futile. It’s long runners will produce new shoots faster than I can say, “shoot.” I apply mulch like a pillow to a face and hope against hope it won’t resurface.

So, my gardening season begins in a sort of panic. Pre-Lyme, I was a butterfly – – fluttering from task to task; soaking it all up, productive and happy. But, I’ve become a caterpillar. I inch along, stay low to the ground, always seated. I pull the garden cart – – two steps then rest, two steps, then rest.

I am defeated before I start. It’s a simple fact.

I know gardens are never finished, even for the healthy. That used to make me happy, but now I’m more acutely aware that my growing season is limited and feel pressure to get it done; make it perfect. I want to make the most of what I have, but spring and summer outpace me. I can’t keep up anymore.

Gardens are places of constant change and perpetuation. They’re filled with decay, death, and disease, but they heal, even resurrect. A garden can be suffocated by alien life; its residents killed by ignorant gardeners who don’t bother to learn what their plants need.

But, they endure. They not only withstand fire and freezing but rise new and vibrant from the ash and snow.

Gardens keep trying.

I am also in a perpetual state of succumbing to disease and decay, then standing again in healing and new growth; succumbing, healing – – always starting over. There are days, when dry, brown, and brittle are all I know and days of flourishing, of feeling bright, full of color and hope.

But, this year’s different. After four years of treatment, and at the risk of being overrun, I decided to stop. I told my doctor I was taking some time off, that I didn’t want to spend the warm days as a patient, keeping appointments, and swallowing pills, or worse, those brown, acrimonious tinctures so popular among Lyme-killers. I have had the same symptoms for a long time, without change, so I need to think.

Can I live with some dry twigs? Develop a rapport with these invaders? Can we function as one?

Do I have to keep snapping off the brittle remains of my old self, making room for new shoots only to find them dead again? Must I continue plucking and pulling at invisible bacteria, viruses, parasites only to find them alive because their roots are many and strong? No amount of pruning or pesticide has destroyed my vermin. Can I just call them my cover? Pretend they belong?

Is it possible to simply look away?

I mean, they aren’t unobtrusive.

The fatigue crushes. Pushing a spade into the earth is not always possible. Somedays, I’m too weak and worn-out.

I bend to plant, then raise up gasping for air, heart pounding, hand to chest wondering if it’s a heart attack or just a Lyme-fake. Can I ignore this?

The depression is dark, an immovable mass; the anxiety like pieces of paper in a blender, swirling, coming close, but never hitting the blades. Some days in the garden, I spend in numb defeat, ruled by blight, sitting in slumped surrender. Other days, I cry, knowing it’s too much, and like me, will never be what it was. How do I keep planting hope when I’m buried? How do I take root and find peace, when I’m scattered?

The roaming, restless pain can’t find a place to land. It rears its head without warning, subsides without a hint. It aches, stabs, stings, burns, spasms, pounds, pierces, throbs. Sometimes, my insides are a bug zapper, overrun by bugs, constantly sending useless zings through my neurons; firing without apparent purpose and with miserable aim.

My brain is another world, where the barometric pressure is prone to dramatic shifts. It swells with damp clouds; blooms with a disorienting mist that steals words, thoughts, the ability to spell, converse, or feel things. Can I be fruitful in a stupor?

As I yank speedwell, and ponder what to do, a tiny green butterfly stops for a sip from one of the relentless weeds. I smile. My nemesis, is this little pollinator’s vast spread of sugary nectar. I’ve heard it before and have said it myself – – weeds have purpose. Struggle and suffering feed our character, nourish our souls, and point us to God. I could end this post on this inspirational note; could list the benefits of trials and the hidden blessings of chronic disease. In my writer’s brain, the butterfly is metaphor for mind and heart; for the way they discover sweetness in weeds.

But, that rosy conclusion wouldn’t be an honest picture of how I feel, not right now. From my little stool, in my big garden, in front of me, I see a small circle, cleared of weeds, filled with multi-hued snapdragons. But if I look left, right, in front of, or behind those flowers, I see speedwell. I see gooseneck loosestrife. I see my perennials looking for air, for light, and finding little of either. I see small gain and huge loss. Clearing this circle was costly and painful, and it won’t last. The dragon slayers are waiting to move in.

This ring of frilly, radiant dragons represents a few good days and some small victories, but mostly, treating Lyme has been like pulling weeds with long, stubborn roots that worm through my body, finding and taking everything. Sometimes, it seems treatment only clears the way for a new batch as soon as the medicine stops.

A successful garden, free of weeds and pests, starts with healthy soil; invites good soldiers – – ladybugs, toads, spiders – – to stand at the ready and make quick work of those bugs that would do harm. It has just enough hours of sunlight to warm the ground without thieving all moisture. It catches the rain and draws it toward the roots; doesn’t hold it on the surface in pools and puddles that corrode.

My “soil,” my internal bed, isn’t healthy. I’ve been looking for green, digging in, doing the right things – – diet, exercise, sleep, meditation, prayer. Ideally, these actions should feed my defenders – – those good bacteria and antibodies. They should open a path for nutrients, supplements, and tinctures to reach the places where they can do their promised work.

But these things work until they don’t. Sometimes, they just don’t. And that’s the problem.

This disease keeps finding its springtime. It keeps starting over, forcing me to do the same. I just don’t know if I can keep it up, keep pulling internal weeds, when to the left and right and all around I see illness – – a snaking, complex, foreign system – – that has made itself at home and thrives at my expense.

This disease will never be finished. I know this, and I know that means my efforts to vanquish it will never be either. It’s one of the first things I learned about Lyme – – that remission and maintenance are the goals, not cure. But, I feel so weary thinking of a life spent clawing out small circles of open space, a life of choosing, over and over again, to try and get done what I cannot. That choice, repeated many times, is wearing me down.

Of course, I won’t give up my garden – – not yet. I’ll do the best I can and try to be content when my efforts to eliminate speedwell or all that strife fail. I’ll try not to look at them, but instead focus on the plants I choose – – the ones I’ll nurture. I’ll look at butterflies when they show up, if only for a moment.

But, my body . . . I don’t know. I am losing the drive to clear the way and clean the slate and am, perhaps, at a place of surrender to the reality of more weeds than snapdragons, more shade than sun, more gasping than breathing. I am understanding that I may have to dig a little deeper to find the green and that I may not be strong enough to do it.

Lyme Disease keeps trying.

Lyme feels like this.

Psalm 119:49-50 Remember your word to your servant, in which you have made me hope. This is my comfort in my affliction, that your promise gives me life.

Tired (Sick)

“I’m just so tired.”

You’ve heard us say it, if you’re still listening, maybe hundreds of times. We say it with furrowed brow, slumped shoulders, and shaking head as if, after all these years, we’re still bewildered by this level of fatigue.

It is confounding, after all – – this weariness. It doesn’t feel like a part of us – – not a true part. It’s an interloper posing as a piece of our original self; an implant, installed into our being, not by an alien race, but by a tiny tick, or a flea, a mosquito – – where we get it is actually a matter of debate, even though you may have heard differently. But all we know, is that we are succumbing to the invader. We can’t help it. This is not a fatigue that can be soothed by sleep or erased by caffeine. It cannot be swayed by a brisk walk in fresh air.

This lassitude is as thick as tar, coating our limbs, drip, drip, dripping into our brains; sucking at our feet, pulling them toward the ground – – like we’ve been given a super dose of gravity. Sometimes, it’s a dead weight that sits on us. Other times, it’s a quivering mass that quakes until our insides tremble and we are muddled; desperate for sleep yet wired for wakefulness. We may be walking, but we consider crawling – no really, we think we may have to crawl to make it around the next corner, or one more block. But we know if we get that close to the ground, we may give up altogether. Cement, dirt, grass – – it won’t matter. It will all look like a place of rest to us; more appealing than taking another step.

We have lost seconds, minutes, hours, days, weeks of our lives to sleep; to heads full of fog. And still, we are tired and sleepy. We have fallen asleep on the job, in our kitchens with our heads on the hard, cold countertop, in the middle of conversations, in parking lots, or at the side of the road between errands. But oddly, not in our beds at night. We have only quantity, not quality.

Our heads are giant, dead boulders, and our necks can’t hold them up any longer. Our eyes are not seeing what’s right in front of us anymore. Our ears, through all the incessant ringing – – the year-round chorus of spring peepers – – they hear only a muffled, far away version of whatever it is you are saying. Sorry. We have slipped away. A people possessed, we have followed, bleary-eyed, our little intruders into the land of nod; like Dorothy in the poppy field except we our forced to remain. There is no Scarecrow or Tin Man to carry us out.

We haven’t done anything to warrant so great an exhaustion. We stand up and feel tired. We sit down with a sigh, as if we’d just completed a long run or a hard day’s work. Of course, we haven’t. Most of us can’t do much, but still, we imagine never getting out of our chair again, just melting into the fabric. Oh, sweet inertia! Sure, someone might sit on us, but at least they won’t ask us to do anything.

“Let’s go for dinner and a movie!” you say. Inside, we cringe. An evening out? After all the hours that came before? After all the hours that have already chipped away at our strength, energy, ability to think or speak, or comprehend? Pay close attention, and you’ll notice a slight widening of our eyes, a hesitation in our response. Our feet shift as we wring our hands. We are panicking. You heard that right. Panicking. We finally manage to utter a, “Sorry-we-can’t-make-it,” then we may try honesty; tell you we don’t feel well. Or maybe we’ll manage to summon a concocted excuse from the murky, sludge we keep calling a brain. You in turn, may smile and continue to plead, “C’mon, it’ll be good for you – – it’ll cheer you up!” People keep telling us what will make us feel better as if we haven’t had this disease for four, ten, twenty years; as if we don’t know what will make us feel worse. But, maybe we’ll get lucky, and you’ll remember that we told you we have difficulty concentrating even in silent spaces, or that we have tinnitus that makes the noise of a theater unbearable. Then you’ll see us as we are and offer an easier option, something without crowds or noise; something that doesn’t last too long.

Please don’t misunderstand, we know you mean well; that you care for us. That’s why we feel torn; terrified we’ll be included, terrified we’ll be left out. Sometimes we go because the latter is our biggest fear, other times we stay because we’re bone-weary and don’t care if we’re ever a part of humanity again.

We just want a real timeout, a rest that revives. We nap and nap and nap to no avail. Our nighttime sleep is so full of vivid and odd dreams that we sit up in the morning wondering how we got into our bed, convinced we were out all night. Maybe we were – – our minds aren’t right, you know. We check our feet for mud, our bed clothes for twigs or grass.

You think you know what we mean, by ‘tired’ or ‘sleepy’. As a matter-of-fact, that’s what you say, “I know what you mean. I’ve been so sleepy before that I just couldn’t keep my eyes open.”

You, thankfully, cannot hear our mental response, “No, I know what you mean.” We could suggest you swallow a box of Unisom to get a clearer idea, but that could be a danger to you, so we just nod in agreement while we disagree.

We want you to know that when we say, “I am so tired,” you would be wise to translate that as, “I am so sick.” We are tired because we are sick. We can’t do the kinds of days anymore that fill the body with satisfaction and lead to a well-earned, healthy exhaustion that, in turn, produces a fruitful sleep. Our weariness doesn’t come to us, it doesn’t grow as the day wears on. It just is. Those invaders I mentioned require energy, and they think nothing of taking ours.

So, we are tired.

Because we are sick.

Lyme feels like this.

When Lyme Turns Blue

Sometimes we stop writing blog posts. We stop answering calls or text messages. We don’t go outside. We avoid social media. Sometimes, we avoid social. So many things we wish you knew about our disease; the faltering of our mental health is not low on that long list.
Sometimes, Lyme makes us sad. It pulls, and paws, and drags us under until we are so disoriented by the darkness, we just stop moving and welcome the rest.
Depression is not a powerful force; not a fierce warrior. It is not strategic and doesn’t attack. It is, instead, a slow sluggish thing. A blob that slithers and slips and lumbers onto our backs when we aren’t looking. It’s only super power? Sheer weight.
The heaviness presses until tears fall and angry, fearful, frustrated words squeeze out. We want to, but cannot contain them. The burden is too much. We cry, talk to ourselves, our God, friends who know. We are prickly, easily irritated in ways we don’t understand. Thoughts, that should maybe remain private, tumble out like pebbles before an avalanche. But the crumbling of the load, the torrent we were expecting, that may have let in some light and air, doesn’t happen. The last of the tears and the words skid to a feckless stop at rock bottom, but the weight remains and pins us to the precipice, trapping everything inside. This sad parasite has cut off our emotion. No more crying. No more words. The relentless pressure smothers all sensation.
That’s when we go away; when we welcome the dark cloak our unwanted passenger has thrown over us. We’re too tired to look for anymore light.
Lyme disease causes depression. Like so much about Lyme, the mechanism is not clear.
Is it the bugs themselves? The little corkscrews twisting into our brains, throwing us off balance, making us see things that aren’t there, and forget things that are? Is it because they are making warm little nests in our heads that shove aside rational thought, knowledge of recent events, the way home from work? They pervert our perspective. Along with their infectious co-infectors, they take over, invading the limbic system wreaking havoc with our feelings and ability to remember. They hijack the pre-frontal cortex until we cannot make decisions, plans, or follow a recipe; until our personality is unrecognizable. They both dull and heighten our senses and do whichever, whenever they please. Captivity can lead to depression and hopelessness. And we are prisoners, no exit left unguarded by those that have conquered our domain.
Maybe the depression comes from loss. We have lost jobs, mobility, cognition, money, goals, and marriages. We keep looking but cannot find our old selves, and we miss them. In the beginning, we were buoyed by our stubbornness – – back when we had no idea what we were really in for. We thought it a matter of determination, that we could will ourselves better, climb into the ring and go as many rounds as needed to beat this disease to a bloody, lifeless pulp. We frustrated loved ones who wanted to help because we continued to insist we could do it ourselves. But now that slovenly despicable weight of gloom wears us down and we give in, and sometimes, on and off, we give up. Some of us once dreamed of hiking the Appalachian Trail, or traveling the world. Some of us just wanted to go to work everyday and take care of our kids, garden, pets. But most of us have had to come to terms with new limitations. We’ve had to lower the bar. Once the worst of the pain subsides, and some of the fog clears from our brains, we can mostly, despite all that’s missing, find contentment but not always. Losing can cause depression and hopelessness, and we have lost much.
Maybe the depression comes from so many unbelievers. They are the majority – – some are physicians, some researchers, nurses, family, friends. They speak to us with condescension, even if they don’t mean to. Imagine losing the ability to walk, being struck with a sudden dementia, having seizures, falling, hallucinating. Imagine a sudden debility or a debility that creeps up slowly so that you don’t know how much you’re about to lose until it’s too late. Imagine having lab tests that prove your body full of infectious disease. Imagine being treated for four years, or ten, or twenty and still your tests return positive. Then someone laughs at you, maybe even your doctor, and tells you Lyme disease is not a chronic infection or that it can’t be contracted in Ohio, or California, or Flordia – – or wherever you live that’s not the Northeastern United States. They dismiss the evidence before them because, they say, ten days, or thirty of antibiotics – – if you’re lucky enough to get that much – – will “cure” you. Think about that. Years of treatment doesn’t erase the disease and you can prove it – – can prove it’s thriving inside, but the person in front of you says not to worry because you don’t have it anymore as if their magical unbelief is all it takes to eradicate your affliction. Denial of personal, undeniable truth can make you feel crazy. It can lead to depression and hopelessness. We have been denied.
Maybe it’s all the pretending. The pretending is so draining. Maybe that’s what makes us depressed. It’s been a few years that we’ve been sick now, and it seems there’s a time limit for lifelong illness that is, surprisingly, not the end of life. We’ve been making excuses well past the time allotted us by the healthy people. It might be different if we were in wheelchairs, or our hair had all fallen out, or our skin were covered in boils and we were clawing ourselves raw with shards of pottery trying to find relief, but most of us look okay. Inside we tremble with fatigue, our hearts are skipping beats, our brains are working overtime to think of the simplest words. When we feel like there’s not enough air, don’t worry, we’ll turn around so you can’t see us gasp. When our joints throb and our skin hurts and our bones ache and our muscles spasm – – it’s alright – – we’ll make sure you don’t know. We’ll keep our anxiety and depression to ourselves and if we can’t, we’ll find a reason to stay away until we can put our “good” face back on. Pretending is exhausting and can lead to depression and hopelessness. We are pretenders, afraid to be “that person” – – the one who’s always sick, who doesn’t feel well, who can’t go, who can’t stay.
We don’t want to be sad. We don’t like being depressed but sometimes, Lyme feels like this.

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.

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.

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

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.

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.