Disability – Lyme Feels Like This

Out of Practice

When a Trusted Physician Closes the Door

For those with “invisible” illness, it’s difficult to find someone who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.

These nonbelievers can be siblings, best friends, spouses, children, or acquaintances, but the ones who leave us most helpless are the doctors. Physicians who dismiss our illnesses make us vulnerable to exacerbation of symptoms and sometimes irreparable harm.

Maybe you know what I mean.

You were never sick; always strong, productive, hopeful. Now here you sit in one more exam room. How many has it been? How many white-coats have pressed a stethoscope to your chest, shone a light into your ears, nodded and wrinkled a brow in response to your long, long list of complaints? How many times have you sensed an internal eye roll? How many times have you witnessed one?

But then it happens. You find the doctor who really looks at you. Who nods, not merely to seem attentive, but to acknowledge that she gets it; understands what you’re saying; how you feel.

That happened for me nearly five years ago.

Lyme disease can take its time before finally making a stand. Mine was like that. Symptoms came and went for years. I didn’t have the experience of seeing a long line of physicians, but I should have. I was just too hard-headed to go. As a nurse, I worked with doctors and didn’t wish to be at their mercy any more than I already was. So, I dealt with it.

Okay, I ignored it. I did my level best, anyway. I ignored the joint pain, the panic attacks, the sleeplessness, the flu-like feeling. The soles of my feet were like raw ground meat, so I bought shoes with more cushion and sat down more often. My brain, eyes, and ears didn’t like light or noise, so I wore earplugs and stopped going to movies and malls. I ignored it all until I couldn’t. In my defense, it’s tough to ignore two weeks of vomiting, chills, fever, and diarrhea.

At the time, an intestinal parasite-harboring bagged lettuce was in the news. I told my doctor that was likely my problem. Accepting my diagnosis, he prescribed the antibiotic I requested and seemed happy to spend no more than five minutes with me, order a single lab test, assure me he was impressed I’d managed to stay slim, and remind me to get up-to-date on all my “woman stuff.” Which I did.

Following that intestinal inconvenience, I began to decline until pretending became too much. My mind was going. I couldn’t remember the way home from work, how to get there, or why I was even in my car. I started trying to open doors with my cell phone, turn my dryer on with the light switch. My ears were ringing, my head hurt, the right side of my face was sliding downward. My rib cage burned; my muscles twitched, ached, and jerked. I could barely walk. Everything either hurt, malfunctioned, or both.

But it may have been the fatigue that finally pushed me over the edge. Maybe it was the day I fell asleep in a patient’s home while interviewing her. Or, maybe it was the second time that happened. I’m stubborn and that’s not a symptom of my disease.

Luckily for me, the iron pill prescribed for my nine-point-something hemoglobin made me sick. That tiny, forest-green tablet bullied me into action and through the right door.

My new doctor’s practice had a name – not just doctor so-and-so. I won’t give the name here. I’ll just call it True Health. It was in an old brick building, in a tiny town I’d been to, maybe once in my life, but I had a patient visit there, and afterward saw the sign. I thought it was a health food store and decided to look them up, hoping they’d have an iron supplement I could endure. Turns out they did – and a whole lot more.

I’d never heard of functional medicine. Entrenched in the industry we misguidedly call “healthcare,” “ill-care” was what I actually did for a living – managed peoples’ illnesses; tried with pills and pills to keep symptoms at bay. It’s all I knew. But since functioning had become a problem, I thought I’d give this new approach a try.

Seeing a functional medicine practitioner is something else. Before your first visit, you complete a two-hour questionnaire – much of it consisting of inquiries into your bowel habits. The idea that my first visit was to last an hour and a half was jaw-dropping, but it was the first fifteen minutes that left me stunned. Turned out he was an expert in the disease, I didn’t know I had. When he said, “I think you have Lyme disease.” All I could do was repeat, “Lyme disease?”

Then he handed me another questionnaire – this one, Lyme-specific.

I passed with a very high score. Like most healthcare providers, I knew nothing of Lyme. I’d hobbled across the street and into his office that day, burdened by thoughts of Lupus, Multiple Sclerosis, Alzheimer’s – these were among the possible diagnosis I expected to hear. When I didn’t, I thought I’d gotten off easy. But, as I said, I didn’t know anything about Lyme.

I recall bits and pieces of that day, but his words, as he left the examination room, imprinted on my mind. I have held on to them for all these years, through unspeakably difficult days. His hand on the knob, he turned back and said, “You know, a lot of people want to make you feel crazy for what you’re going through, but we don’t want that for you. We just want you to get better.”

That hope, expressed by someone who had the ability to help me realize it, pulled me out from under the fear. Until that day, I hadn’t told anyone how I was feeling head-to-toe. I’d tossed out phrases like,

“I’m so tired,” or, “I feel achy,” always shaking my head, baffled by my body’s failings. But how could I begin to list the thousand and one complaints in casual conversation? Even I thought I was losing it. Even I wondered if I just wanted attention or to get out of work. Maybe I didn’t want to hear the assurances that these things happened to women of a certain age or to women because they are, well, women.

There were many reasons I kept it to myself, but when he said that, I felt something break open; sorrow and relief rushed in together. I found confusion and clarity, peace and uncertainty. I was a jumble of emotions, but it was the comfort and compassion, the understanding and assurance – all the things a sick person needs, things I hadn’t yet admitted to needing – I found those things in abundance at that place, enough to deal with what lie ahead.

That place will soon be gone. My doctor’s practice closes the end of the year.

*“My doctor was a safety net. I had settled in and expected to stay until I was well.”*

The word I’ve heard most from his other patients has been “devastating,” I concur. It is a blow, a punch in the gut. The day I found out, I sensed a snap, the cord from life raft to ship had been cut. Adrift, unsure, alone, we all panicked; found ourselves floating in a fog with multiple, but untested, paths on all sides.

What’s the big deal? Find another doctor people said; recommendations filled my message boxes and social media feeds. But those of us with Lyme know some things most don’t. Someone with an accepted, well-researched condition might think finding a great doctor isn’t too complicated, but Lyme is, in a way, illegal. Our doctors are few and far between because the risk of giving us as many antibiotics as someone with — say acne — is high. Lyme doctors can be shut down by a complaint from an insurance company or the health department for “over-treating.” They have lost their licenses because of us.

So, we all scrambled. We googled; talked back and forth. “Have you heard of so-and-so in such-and-such town? His he any good? Does she take insurance? Does he treat with antibiotics, herbals, or both? How much is the first visit? My friend saw that doctor. He was horrible – she almost died! Ugh, that’s three hours from me. Bleh, that’s a six-hour drive. First visit is how much?! Yikes!” On and on it went, all of us forced to begin again or give up.

My doctor was a safety net. I had settled in and expected to stay until I was well. When his doors close, I must start over. He won’t be the only one out of practice. It’s been a long time since I’ve had to tell this tale from the beginning; since I’ve had to complete a new patient form or use my GPS to find my healthcare provider.

It’s been four and a half years since I’ve had to feel nervous; uncertain about whether the person sitting across from me had my best in mind. I don’t want to wring my hands and avoid eye contact while I call out my myriad of physical aches and pains, my neurological disturbances. I dread sitting alone in a foreign and sterile room, unable to concentrate on the book in my lap, instead staring at soap dispensers, tissue boxes, sinks, and paper-covered exam tables — anything to look casual and relaxed, to not be caught wide-eyeing the door when my new practitioner walks in. Like a weathered sea captain taking sailing lessons or Jack Niklaus signing up for golf camp at the local YMCA, I don’t want to be a new patient because I am an old, experienced one.

New patient visits cost a lot of money. You have to pay the hefty first-visit price, adopted now, by most Lyme-literate MD’s. Some of them, at rates between five hundred to a thousand dollars, or more. Since there is no established treatment protocol for Lyme, your new doctor will try things — supplements, herbals, compounded capsules, untested intravenous therapies. All of these things will be costly, none will be covered; your doctor will not accept insurance. You’ll pray no one else in your family needs medical care.

A new physician will, and should, run tests. Such a multitude of complaints warrants a broad array of diagnostic procedures. If your previous results are not recent, or this doctor prefers a different lab or method, you’ll be subjected to many needle sticks and scans of things. You may be referred to specialists until every week of every month you are committed to a doctor’s appointment. You’ll find ways to make it bearable – treat yourself — a grown-up version of the proverbial post-doctor lollipop. When I see my primary care, I’ll swing by a favorite upscale thrift store; when I see my neurologist, I’ll get a smoothie, my thyroid doctor, a gluten-free, grain-free, sugar-free, dairy-free lunch that I’ll eat beside a nearby lake.

If you choose a doctor not trained in Lyme disease, you’ll save cash but have a lot of explaining to do. As you relay your symptoms, your new doctor may become alarmed. He may wonder why you haven’t already been to a rheumatologist, neurologist, endocrinologist, allergist, sleep specialist, physical therapist, and on and on. She may be puzzled by your cavalier demeanor, the way you shrug when describing the sudden numbness to the right side of your body, or your occasional loss of vision in one eye. He may attribute your neck stiffness to poor sleep posture instead of a coinfection like Babesia or Bartonella. Same for your night sweats, those will be, most likely, if you’re a woman, due to womanhood. She will not have been taught to consider infectious disease as the root cause. You may have to bring documentation – peer reviewed studies that demonstrate the true nature of Lyme, that explain it as a collection of infections, not just one; the way it persists in the body, an ongoing, active contagion lying in wait. You’d better bring this paper work wrapped in humility and pray he is willing to learn from you.

This process, being sick, has worn away some of my stubbornness. I am giving in, making a list of those after-doctor treats. I know I was spoiled to have stumbled upon the right doctor that day; to have had one provider who understood he couldn’t send me to specialists who didn’t believe in the thing that was making me sick. I was blessed, on my second attempt, to find the help and wisdom I needed to get better. I know that what’s ahead for me is what many with my condition have tolerated their whole lives, and so, I find myself again, breaking open on the inside; once more a jumble of feelings. Hope will show up, but right now grief wins the day. I am succumbing to a path in life I did not and would not have chosen.

We all know the comfort of familiarity, of coming home after a hard day’s work, a funeral, a long trip. We see our favorite chair, our pillow; tune in to the sounds – the ones we don’t always notice because they’re always there, a refrigerator’s hum, a clock’s tick, a dog’s soft snores. A doctor’s office can be a place like that when you’re sick for a long time. After a hard month of pain, memory loss, shortness of breath, exhaustion, a familiar caregiver can be a welcome sight, can release a contented sigh borne of trust. It can be a place where you anticipate, with relief, the opening of an exam room door; where you know you’ll leave encouraged.

Once you know a doctor is listening; that he hears you and cares, you let yourself believe he wants what you want, to see you walking tall and strong, hiking the old trails, pumping the pedals of your bike. And so, you tell him your story. You start at the beginning and each visit you speak to him the middle, all that’s happening in your right-now. You’ve no doubt he will be with you at the end, bringing this affliction to a resolution of wellness.

But his role has ended. He has stepped out of your story, and you’ve no choice but to bring in a replacement; to put on the brakes, slip into reverse, and start over.

We’ve all heard people say it, that they put their lives in the hands of a doctor. I did. Not consciously, but in that room for the first time, I lay down the weight of all I used to be and now was not, could not; all I wished to be and do again. And he had willingly picked it up; lifted my burden. In that place, I had a safe room where someone wanted me to tell what hurt; where I would be validated, find healing — a place I could express my fear that I would forever be unable.

As his practice ends, mine starts over. I’m not sure if this will be the commencement of a whole new marathon, or just a long, steep incline in the middle of the same endless route. But I’m breaking out my equipment: My long list of medications and symptoms, treatments that worked and the ones that failed. I don’t feel ready, but I’ll narrate, once more, the longest story of my life and hope that my new doctor will really, truly just want me to get better.

Lyme feels like this.

(This article was first published here: https://theunchargeables.com/when-a-trusted-physician-closes-the-door/)

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.”

“What If I Get Better?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

All those things were long ago.

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

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

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

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

So, what if we get better?

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

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

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

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

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

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

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

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

Lyme feels like this.

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

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.