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

I Didn’t Want This Really Nice Bike

My Sweet Townie

 

 

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.”

“It’s Cool”

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.

In The Beginning, Babesia

For most, it starts with a symptom. There may have been others before, but they seemed normal: An achy joint, headache, extra tired, a flu-like feeling. And they didn’t last. They came; they went. Eventually though, a sign of sickness, so bold, so brash crashes into our awareness and stops us. It may stop us from walking, remembering, speaking, moving, eating. Lyme embeds itself in every part of the body so it has a lot of choice as to how it will damage us.
This is the way we discover that we are sick. This one loud signal becomes the bellwether, and all the others begin to ring out until they are a cacophony of indicants and any pretense of health is finally done away with.
These symptoms shift and move; take turns. Like a pot of soup, some float to the top, but with a stir those sink, and a different set rises. It’s no wonder it takes so long to put them together; to give them a name. To realize they are Legion.
Lyme patients tend only to recognize the signs by looking back. In the midst of it, doctors try to sort it out. They name a condition to go with each symptom and a drug to go with each name. But when we finally find that one physician whose eyes and mind are open, whose medicine has kept up with the research, we get an answer. We exit his office armed with, and bewildered by, a new truth. We have something. We have Lyme Disease. One thing that’s really many things. Legion.
We climb into our car. Dizzy, exhausted, aching, struggling to recall the way back home. But at least now we know why. On the drive, we say to ourselves, out loud, “Oh, that’s why last year I . . .” or “I remember feeling . . . It must have been the Lyme.”
The harbinger of my decline, I believe was a protozoal parasite called Babesia. Most people don’t realize Lyme disease is caused by a bacteria, let alone that chronic Lyme is a whole army of infectious organisms. Although the symptoms of each do overlap, I look back to my beginnings and believe it was Babesiosis that rose up to conquer me first. I have two strains, but their symptoms are similar.
babesia duncani
My Lyme experience started in a panic. Not anxiousness, nervousness, not fretting, or worrying; a panic. My mother had passed. I thought that was why I was lying awake in my young son’s bed trying to protect him from the people I believed lurked outside his window. I thought her death was why I began blacking out; once, while driving, long enough to take out a mailbox. I thought that was why I was seeing things and people who were not really there. It was stress. It was normal.
It stopped, and I moved on thinking I was over it. But during the next 7 years, these things would come and go along with other warnings.
In my pre-Lyme existence, I avoided doctors, but two weeks of nightly fevers, vomiting, and diarrhea finally forced me to drag my embattled body into my physician’s office. He was surprised to see me. It had been three years, after all. But he managed a whole five minutes with me, ordered a complete blood count, and told me to make sure I was up to date on all my “female things.” I complied, and one pap smear, a vaginal ultrasound, and stool test later, knew I had a benign cyst on one ovary, blood-free stool, and a hemoglobin of 9.6 – – nearly transfusion-worthy.
Sometimes, I imagine the little parasites, like enemy submarines, swimming through my vessels, blowing up red blood cells. Lysis: It means “to loose” or to “unbind”. That’s what Babesia does to a red blood cell. Like a microscopic battering ram, it breaks down the cell wall so all the vital ingredients inside drift away and disintegrate. Other times, it inhabits the erythrocytes; forms them into little groups. “Sludging,” they call it. This clumping against the walls of capillaries, and arteries, blocks roadways built for lifeblood to travel. Red blood cells are transporters, delivering oxygen to every part of the body, and while their at it, dispelling carbon dioxide so we’re not poisoned to death. When I am doubled over sucking in air without relief from the feeling of needing it, when I can’t stop yawning, when my hearts jumps like a cricket in my chest, or pounds like a hammer, Babesia is at work starving my tissues and organs of air.
I know Babesia well by now and am certain it inhabits every area of me, but it has an affinity for the hypothalamus and prefrontal cortex. I don’t know why this is, but I do know the consequences.
The hypothalamus is a stabilizer. Homeostatis is this gland’s job. It controls the body temperature, thirst, and appetite. It lulls us to sleep or drives us to stay awake for sex. Oxytocin, that hormonal hug, is produced by this gland, and helps us feel relaxed, happy, loving, empathetic, and over all more mentally stable. The prefrontal cortex houses the personality, and many forms of complex thought; problem solving, decision making, management of social behavior, concentration in the midst of distraction. It manages our moods.
Living with dysfunction in these areas, as well as with red blood cell killers means sudden shifts in mood and emotions, instant alterations in one’s physical and mental state, disruptions in cognitive capacity, and depletion of energy.
I am on fire. A hot ache inside my chest, swells, then unfurls. It rolls through my torso, filling the length of all limbs; culminating in a stinging tingle to my extremities. I grip the arms of my chair and lean forward, gasping at the onset of this ignition. I want to tear off my skin; find my way out before my body erupts. Night brings fever and drenching sweats; I seek relief in a long, quiet soak, but the bath water is too warm. I feel my last breath coming; my heart will stop. I imagine my family discovering me lifeless; my head, one arm draped over the edge in a failed attempt to find air. Summer’s heat is a thick sludge. It seals me in, and I slog through, heavy and lethargic. It seeps into my brain, and I cannot think or understand.
I am frozen; my toes cold, pale. I know they will snap if I’m not careful. The sounds of shivers and chattering teeth reveal my location under layers of clothes and blankets. I go outside bundled in long underwear, wool, and down only to find myself sobbing because despite the layers, I am unprotected. Glacial air knifes through my skin, my muscles; all the way deep down to the bones. Then I peel it all off like a wild woman trapped in a cage inside a pit of fire; clawing and scratching my way out, fearful once more of an impending detonation.
I am exhausted. The sleep of Babesiosis is a never-sleep. I close my eyes, but don’t rest. My mind is busy, one incohesive dream after another, after another.  My eyes open in the morning, but I have only switched worlds from restless night to bone-weary day.
I am a wreck. A cluster of nervous paranoid anxieties fill my head and sit like a stone in the pit of my stomach. A heavy blanket soaked in despair, defeat, and sadness drapes my whole self and keeps me pinned down, robs me of light and air. I cannot lift it; cannot crawl out from under so I let it hold me until it doesn’t.
I am numb. My personality has vanished. Where are my emotions? There are days, when faced, even with the death of a friend I am unmoved. As I exist in this strange anesthetized pose, I am conscious of it’s oddness; wonder in those moments why I am not crying, why I am making a pretend sad face as I hug loved ones. Why I feel nothing.
I am confused. Oxygen cannot be late to the brain without upsetting the whole operation. I am sick of standing, clueless, in the middle of a room, no idea why, nor what I am meant to do, and often no memory of getting there. I am weary of panicking when my phone calls are answered because I have no idea who I called or why, or can’t remember answers to questions like, “What’s your date of birth, your social security number, your name?” I’m weary of having to change passwords because I can’t get letters in the right order. Babesia inflames the brain, causes it to swell, blocking blood flow. I know when it happens because I become a fountain of tears; leaks sprung by jabs of despair, anger, frustration, happiness, fear. Emotions bundled so tightly together, fighting for control, they rule me until the Babesiosis is, again, muffled.
I am in pain. There are days, Babesia sits in the middle of my forehead and hurts without relief for months. My neck is strained, fatigued. I cannot hold my head upright for long and feel as if I am stopping a locomotive with the back of my skull. At times, I think the little bugs are lodged in my throat because I cough and cough until it’s raw. My muscles spasm and ache, quadriceps unable to bear the weight of a magazine, deltoids feel as if I’d endured ten tetanus shots the day prior.
Like the contents of my red blood cells, I am undone by Babesia. My personality – – who I am – – my emotions, thoughts, understanding have all been let loose. I am drifting away. Comfort and peace, things I once possessed, are now unbound. There do not seem to be any walls to keep me together or keep me safe; no place of rest that cannot be invaded by these creatures. ‘Loosed,’ ‘unbound,’ may conjure ideas of freedom, but this is not that. This is a disorientating, perplexing push from behind into open air with no sense of place, no certain hope of landing.
Lyme feels like Babesiosis.
Lyme feels like this.

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.
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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.