I know I am dying.
I am aware; cognizant of the microscopic enemies swimming through my blood and crawling through my tissues. I can’t deny the conflict they have created on the inside turning my body against itself. A house divided . . .
From birth, we are all dying, but I have never been so conscious of my shift toward biological retirement as I am now. This wasting away is no longer a secret concealed from me by the trickery of a once busy life.
I can hear it. I hear it in the ringing in my ears – – the horde of spring peepers that seem unable to escape the labyrinth of my cochlea so they call out day and night in despair or panic. I hear it in my breath, heavy and desperate after the shortest flight of stairs, or an inclination to tie my shoe. I force my lungs into submission – – in through the nose, out through the mouth. “Smell the flower, blow out the candle,” I used to tell my patients, when I was a nurse. I hear it in the tympany of heart beats against my eardrums that happen for no apparent reason, and wonder if they might be trying to put an end to those peepers for me – – one way or another.
I can taste my decline in every tablet, capsule, or rancid liquid drop that lands on my tongue. I taste it in the crumbling, unsubstantial, and disappointing squish of gluten free bread; the watery, bitter aftertaste of “milk” made from nuts. I taste it in the memory of all the foods I am doomed to watch others savor.
I can smell death. Oddly, when a body is deteriorating, sometimes it seems to switch to high alert. Sensitive to everything now, I cannot tolerate sounds and lights, and yes, smells. Fragrant anything can make my throat burn, eyes water, stomach turn, and head hurt. I have banished scented lotions, soaps, shampoos. I cannot enter a Croc store, Bath and Body Works, or Yankee Candle. And although, I don’t always smell it, I know in five minutes if mold is present. Some pay thousands and use laboratories to find it, but they could hire me. As soon as the right side of my face draws downward, my right arm and leg go numb, my stomach starts to churn, and my balance slips, I can say decisively that mold lives. I was a thrift store shopper and lover of used books, but no more. They are poison to my over-reactive self.
I can see it. Others say they cannot. They say I look really good, healthy even. One side of my face droops, I walk with a limp, and my color is sort of the shade of wet peanut butter. I see it in the atrophy of muscles previously strong and taut. It is plain in the cobwebs that cover my ceiling, the laundry overflowing, the dirty floors. I see it when I look at my hiking shoes with dusty tops and spotless soles, unused for too long. I see it in my neglected gardens, some so overgrown you would not believe they had been gardens at all. I see it in my new normal; no regular visits with other people, and few spontaneous. No longer pulling on a uniform and going to work. My scrubs are in storage. I don’t go to church, our building has mold. I am mostly alone. When I need to vent or want to offer help, I don’t meet a friend for lunch or coffee, I log in to Facebook or Twitter and rant and cry to other Lymies and don’t know what I would do without their empathy.
And I can feel it. I feel death coming everytime I stand up, sit down, lie down – – in every stiff, slow, painful movement. I feel it when someone touches my skin because it hurts to be touched. I feel it when my foot hits the earth because the soles of my feet are like raw meat; in the pressure in my chest, the freezing then boiling then freezing of my flesh. I feel it my frustration when I cannot remember what happened one second before, when I cannot get letters in the right order, when I mean to say “security” but instead can only say “discovery,” or “ketchup,” or “potato,” or some other nonsensical word. I feel it in my panic, when I cannot remember where I am or where I am supposed to be going, or how to get there if I do recall my destination. I feel it when my mood becomes manic and nervous; when it shifts suddenly to a silent, suffocating misery that is so heavy it holds even my tears captive.
I am aware. I know my invaders and am conscious of their continuing work. So what do I do with this knowledge of death? Matthew 10:28 says “Don’t be afraid of those who want to kill your body; they cannot touch your soul. Fear only God, who can destroy both soul and body in hell.” In context this passage isn’t talking about bacterial, viral, or parasitic infections. It is talking about evil men, but these bugs are no less destructive than the worst of men. The Apostle Paul reminds me in Corinthians of the decay of my “outer self” and says to be encouraged because the “inner self” is being renewed. Admittedly, I struggle to focus on that renewal when the decay is so overwhelming. Sometimes, I blame the illness for what feels like the ruination of my soul, but I can’t rely on my shifting feelings, if I do, I will fall. Instead I rest on the truths I know. I know souls are strengthened in times of trial, and I know I just need to be open to God, to whatever and however He wants to work in and through me.
I am not afraid, really. One day, I believe God will make me glad – – glad that I am not in the dark about my deterioration. Consciousness of my fragility can, by God’s grace, lead to a greater strength, a lasting peace, and a solid, unshakable joy. I do experience moments of buoyancy; times when I feel the goodness and wisdom of His purpose in my suffering, but most days, if I am truthful, I still just want to be well.
I believe these microscopic warriors have lived in my body for a long, long time. They kept to themselves; didn’t bother me. Ignorance was bliss.
I was unaware. I did not know I was dying.
Now I know. I pray to be thankful that God has let me in on the secret and to use this knowledge well.
Lyme feels like this.
You Look Great
I look great. That’s what you’re telling me anyway. Oh, I know you don’t mean Beyonce-great. You just mean I don’t look sick. Great. I shrug. “I feel pretty good,” I reply. But, you don’t see the uncivil war inside; can’t know that I am wishing with all my might, to crawl out of my skin and get as far away from my body – – my battlefield – – as possible. Good riddance army of malicious bacteria. Stop assailing my tissues and ruling my life. I can’t strip you of power and end your reign so I settle for dreams of exile.
You are sitting with me in this park, but cannot detect the presence of my enemies, these invisible bacterium invading my realm. I’m not expecting you to. Most blood tests can’t find them. They are masters of the clandestine, concealing themselves from my immune system, antibiotics, laboratories, doctors, researchers; leaving no visual trace when you look at me.
I know their names; Borrelia burgdoferi, Bartonella, Babesia among others – – partners in Lyme. I feel their effects. Right or wrong, they are the most real thing in my world, and even though I cannot see them, they are looming larger than anything else. They are enclosed by my flesh, living and working inside my body – – a whole society of overtakers. Come closer and you might run into them. You might notice some things are off – – these puffy dark pouches beneath my eyes, this slight veer to one side when I walk, this limp, my aimless sort of antihistamine-like stupor. But no . . . you are too far away on the outside.
You’re noticing that I seem tired and acknowledge you’ve heard Lyme disease makes people very fatigued. My hopes rise a bit as I affirm that it does. But then you bring up the weather. You suggest it might be this weather we’re having. After all, this weather makes you feel tired. So, I don’t bother with detail; don’t tell you that all I know of ‘tired’ is what I remember, how much I liked ‘tired’, how good it felt when it followed a long hike or a productive day in my garden. ‘Tired’ meant I had done something. I don’t tell you how it is getting harder to remember myself before this disease. Instead of trying to explain, I nod agreement and blink a lot, trying to stay awake, but I am fading; feeling this sludge of exhaustion coat my limbs, painting me with a weariness heavy enough to keep me still no matter how badly I wish or need to move, stealing first my ability for motion, then my desire.
I am wondering if this weather makes you feel like you are trying to hold up a car with the back of your head. Does it encase your arms and legs in the same iron sleeves I wear? Does it make chopping a vegetable akin to climbing a salmon ladder? I often turn to the Psalms for comfort and find the singer speaking of God as the lifter of his head. I know literally what this means. If God didn’t hold my head up some days, it would just stay plastered against the bed or the back of a chair. And some days He doesn’t.
You are suggesting we walk a bit. Do you see me cringe? It’s there, right under my smile . I am aware I can’t sit forever but really don’t want to bear my weight. One of these bacteria must have thousands of tiny fists whose only job is to pound the soles of my feet day and night. It hasn’t let up in almost a year. I am gritting my teeth as I stand. You are chatting, but I am distracted,. I can’t help it – – thinking about how hamburger might feel if it had feelings – – would it feel like my feet? Maybe the tenderness, but then there’s the burning, buzzing, stinging, tingling. I doubt hamburger would feel that way. A fleeting thought of lying down, of relief, and then I remember my heels can’t touch the mattress; my toes can’t bear the weight of the bed covers.
What did you just say? I was thinking maybe I should stop being stubborn and just get a cane, or a wheelchair and missed your last comment. You are laughing, so I laugh too, but have no idea why. (I can’t imagine I really need to go that far – – a wheelchair? Wasn’t I hiking up and down ravines a few months ago? How could I possibly need to be wheeled on a paved, flat trail or through the grocery store?)
Oh, you were saying something about how you heard Lyme causes arthritis. I think, ah, you believe in my pain. Then you ask if my knees hurt and I say, “Oh . . . yes!”
“Well, honey, at our age what do you expect? It’s time for our joints to hurt.” I know you are only trying to reassure me, letting me know my pain is normal – – for my age.
I feel a strange need to defend myself but fold up inside instead of pointing out that my knees didn’t hurt until I got sick, that turning forty-eight doesn’t mean every joint in my body should suddenly feel full of knives and needles, that my skin should hurt, my muscles should burn and ache, or that lightening bolts of pain should strike in my legs, arms, ribs, ears – – wherever they please. It shouldn’t mean the weight of a book on my lap is more pain than I can bear. A closed-mouth smile is all I muster.
We stop walking to stand and talk. Do you see me favoring one foot, then the other, until I finally point out I need to sit? Your side of the conversation never misses a beat, but I’m not hearing much as I am so focused on the bench ahead. Like a marathon runner at mile 26, that 0.2 feels like the longest day of my life only I skipped the 26 – – all I have to do is this 0.2. I am gripping the arm of the bench, knowing my pain shows on my face, in my movements, but you’re showing me your new shoes. “They’re cute,” I say, recalling all the shoes in my closet, unworn for the last year – – dress shoes, boots, tennis shoes, running shoes, all of them like wearing a bed of nails or pounding hammers.
What did you just say? I’m ashamed to ask, ashamed I missed it – – again. I listen, but lose track, certain I am a couple of sentences behind by now. Don’t take it personally – – I am trying, really. And will try until I am exhausted, until panic sets in because the word I need to retrieve from storage is taking too long to locate. I fear I may pick the wrong one, or maybe I already did, because you’re looking at me funny. Words, thoughts, ideas, whether yours or mine, do not flow and connect the way they used to. They are stuck behind a bacterial barricade, piling up into an unmanageable aggregation. Sometimes I get up and wander around, not knowing why, and then I think maybe I’m looking for all the words I’ve lost. I see and hear you but from a rudely awakened state, as if someone dropped and shattered a plate next to my ear while I was in the deepest part of a dream sleep leaving me in a groggy limbo.
I consider explaining that my white matter probably resembles swiss cheese, but I know you would assure me once more that it’s just menopause or old age, and joke about how you’re forgetful too. Something like, “Let me tell you, I have cognitive deficits, and I don’t even have Lyme disease. We’re just getting old.” You would think that was funny.
Does turning 48 mean forgetting how to get home from work? Or struggling to spell words you learned from Dick and Jane? Or recalling your address or phone number? When you reach your midlife, do you really think flipping the light switch will turn on the dryer, or pushing on the rearview mirror will turn off the car radio? Is it really so hard to discern left from right in your late forties?
I am hoping you don’t suggest following me home for a visit. We might not make it. I might not remember how to get there, or I may have to stop and ask you where we are and where we were going in the first place. As we discuss those things, I may see something and comment on it. You would wonder who is crazy, me or you? You may not see what I see, but don’t worry, it’s not you losing it. Sometimes I see things that aren’t really there. Is that normal for my age?
You are hugging me and I realize you must’ve said you were heading home. I’m hugging back and wishing I had been more attentive, more absorbed in your world, your thoughts, your jokes and stories. But your words and their meanings seem to float across a slow moving pool toward me and sink before I can catch them. I have to dive down and by the time I surface, so many more are coming my way. I’m afraid I grew weary today and let many of them drift past.
Waving, you pull away and I sit still in my car, in the quiet. My body hurts. Not a centimeter of my frame is pain-free. I dread turning the wheel, my upper arms ache as if I had ten tetanus shots in each one the day before. My fingers and wrists may snap it seems. My calves, shins, feet, ankles, hips, back, ribs, head, ears, shoulders – – all owned by pain. Which way is home? Right, no wait, that’s left, right is the other way. Isn’t it? I’m not sure, but head out anyway and things look sort of familiar so I keep going.
I am wondering if you think me a fraud; maybe an attention-seeker or hypochondriac. Who has this many symptoms? I must be crazy. You always try and tell me I am just like you – – that you forget things, your joints ache, you feel tired. But, you are going to work tomorrow. I cannot safely work as a nurse. I tried for awhile but procedures I’d done a thousand times were impossible for me to complete in the right order. I’m still not sure if I filled those last few pill boxes right. You mentioned what you were making for dinner tonight – – a new recipe. You will be able to follow a recipe today – – even after a walk in the park and a conversation. I tried to make an egg this morning – – prepared my skillet, cracked the egg, and opened it onto the stove top instead of into the pan. I watched it lying sunny-side up and battled to understand its cold, runny state. Something was wrong, but it was a good minute before I found the answer and formed a plan to clean up the mess.
I’m not like you, and for some reason I can’t quite understand, I really need you to know that – – to cut me some slack, to lower your expectations. Instead, I feel as if I lie in a coffin made of frosted glass. I keep trying to tell you that I am trapped, that I can’t move, that it hurts, that I am losing my way and my mind, but you can’t quite see me. I’m not clear to you. So you keep going, and I give up sometimes and lie still. I stop trying to communicate my suffering and wonder if maybe you’re glad I’m in here – – where you can’t really see or hear me. Maybe that’s why you keep trying to tell me I’m O.K. Are you trying to feel more comfortable with my decline? Maybe you are sad over my failing health, but don’t want to be, so you keep slinging a positive attitude my way – – but it’s just bouncing off this glass lid, not because I don’t want to feel positive, but because this lid is real.
Isolation is worse when other people are present. If I were trapped in this coffin and no one was around, I would not hope for an understanding, empathetic friend. But every time you walk by, I hope. I hope you will be sad with me when I’m sad. I hope you will encourage me, not by denying my illness, but by acknowledging it and knowing that I cannot walk far, or stay awake too long, or always understand your words. I hope you will be in this box with me as best you can so you will know this war is real, my enemy is strong, and that even though I win a battle now and then and have a good day, I have a long way to go before I win this war, and likely, I will never have a clear and final victory; there may be scars. I may have physical pain the rest of my life. My brain my never work as well as before. Even if I hike again, an overgrown path will likely always cause a cold sweat and rapid heart rate. The tiniest tick will swell in my imagination to a giant disease-ridden monster and the uninhibited joy of the trail will never be the same.
But the most prominent scar, I think, will be the knowledge that I came through a war – – that my whole life was changed, became a fight, that for years I lost much, and you will never know. For you it will be as if nothing happened. A majority of the medical profession, of which I have been a part for 30 years, will not believe me. I fear the isolation I felt in my illness will continue after I am well. I will have a membership in a secret club to which I will never really want to belong. Those unwelcome members – – Borrelia, Bartonella, and Babesia – – they’ll always be lurking in the dark corners, blowing poison smoke, never gone completely, always looking for opportunity to rise again. There will be others like me, my comrades in arms, who will know without words how I feel because they have felt it too – – they will be keeping their eyes on the enemy the rest of their lives, just like me. But not you. We are close; maybe friends, spouses, sisters; maybe you are my child, or parent, but you will never really know. I wish you could know for my sake and for others like me, but I hope, for yours you can remain a pacifist – safe from this chronic, destructive war.
Lyme feels like this.
When You're Stuck With a Fake Disease
When my test results came they were covered with multiple +’s. My doctor assured me that, yes, I was truly sick; that the myriad of symptoms harassing me were not the imagined folly of an attention seeker, or an attempt to get out of work. They were, he said, signs of a real and, while not curable, treatable disease. I hobbled from his office that day on legs stiff with pain, climbed into my vehicle, put my head on the steering wheel, and wept.
Relief.
I was not glad to know I was sick or to be sick, and had no idea the long road ahead of me. I was simply happy to know I was not insane. In my body, I carried a pathogen – – a wiggly, sneaky spirochete that could be identified under a microscope. So now, when people asked what was wrong, I could say definitively, “I have Lyme Disease.”
Little did I know . . . truly little . . . this disease, at least the chronic version, came wrapped so tightly in politics, it had been strangled into a mere syndrome. Just a collection of symptoms and the claim of unknown etiology.
Once again, almost three years later, I am in my car with another laboratory report. This time, a Lupus panel. I requested it because I suffer so many of the symptoms. This page is full of “negatives” and “within ranges,” and I am weeping. Not out of joy as one might assume but frustration, plain and simple. I was hoping for the words, “positive,” “elevated,” or “out of range.”
You may be thinking, I am insane after all. This has to seem crazy and probably offensive to those who have Lupus. I may, indeed, at this point, be a little mental, and I really do not mean to offend. I will try to explain my desire to be diagnosed with a progressive, awful disease.
As a nurse, I knew going in, there was no test to confirm Lupus. A positive on any one of the many tests commonly run does not mean one has the disease, while a negative does not mean one doesn’t. Confirmation involves, as with most autoimmune illnesses, a battery of tests that could all mean something else, and the clinical diagnosis of a physician based on symptoms.
This has to be exasperating for Lupus patients, always leaving them with a hint of doubt, a bit of worry; the possibility they may have something else instead, afraid they may be on the wrong track. They probably feel some days they would give anything for pathogenic proof.
But, as I have learned, a clear etiology doesn’t always hold up in the court of medical or governmental opinion. A wiggly, active, clever spirochete in your blood, muscles, joints, and organs does not, for some reason, necessarily make a convincing argument.
So I wanted a Lupus diagnosis. I wanted it because it is legitimate in the eyes of the world. And if I am going to have the symptoms of a real disease, I would like people to believe I have one. Lupus, MS, ALS, all count. They are not referred to as “post disease syndromes.” They garner, as they should, sympathy, empathy, walk-a-thons, telethons, marathons, ice bucket challenges. Celebrities raise awareness and money for these ailments. And all the governmental agencies that hold the power and the purse strings take them seriously and search for cures.
These afflictions should get attention. They are serious and devastating and treatment needs to continue to advance. But the horror of one disease does not negate the horror of another.
So I am in my car, weary of explaining; of the questioning looks, implications, and innuendos. Did you see a tick? Did you have a rash? Lyme disease makes your knees hurt, right? It’s caused by a bacteria? I didn’t know that. Well, at least it can’t kill you. Just a few weeks of antibiotics and you should be good, right?
I am in my car thinking that I am done; done feeling defensive and trying to prove this is genuine. Just because I am sick, doesn’t mean I have to become an activist, does it? I can just close up and know within myself that I am really ill. Someone else doesn’t have to believe me.
I am in my car thinking maybe I am crazy; maybe this is all in my head, and I do not really have crippling pain, suffocating fatigue, memory loss. What if my sometimes stumbling, drunken-like gait is put-on, but I’m so nuts that I don’t realize I’m doing it. What if some psychosomatic invention is causing the muscle spasms, the shortness of breath, the heart palpitations? It’s been awhile since I have had doubt about the truth of my condition, but somehow this piece of paper takes me back.
I am in my car crying, experiencing all the symptoms of multiple real diseases that people believe in and care about; suffering as much as some with MS or Lupus, but stuck with a “fake” disease, just this left over syndrome that is supposedly “cured” by 21 days of antibiotics but has cost me thousands over the last three years.
I fold up the results and tuck them in my purse. I don’t even tell my family they were negative. I think they might be disappointed too that I am not sick with something they won’t have to defend or explain. This paper in my purse, doesn’t mean I don’t have Lupus, but it means I can’t say that I do. Maybe I’ll talk to my doctor about testing for something else, or maybe I’ll pretend I’m well. Maybe, as hard as that is, that would be the easiest.
Lyme feels like this.
Werewolves of Lymeland
A change comes over me when the moon is full. It wasn’t a curse that caused my affliction, but a bite.
I try to hide myself away during this phase so no one will see my altered state.
This transformation is painful. I may ache to the point of moaning and groaning. Sometimes a cry, unexpected, will escape my lips as sudden electric jolts shoot through my limbs. My muscles may jump and quiver or lock and cramp. I am taking on a different form and do not look or feel the same.
An invisible weight pulls one half of my body toward the earth making my gait asymmetrical and sluggish. Super strength is not a part of my transformation, instead the opposite. The right side of my body weakens, grows weighty, and numb, except the parts that hurt.
My countenance slips on one side. I am a bright, smiling Jekyl on the left; a drooping, dismal, Hyde on the right. I have not reached the point of drooling, but it isn’t far off, I fear.
My senses of hearing and sight become heightened to the point that I take cover against the light and cringe at high frequencies. In church, the music that I loved is now uncomfortable. When the godly lift their voices in praise, I close my ears and wonder if my sin has caused this physical barrier cutting me off from the songs that once gave me joy. I wonder if peace will ever again wash over me when I hear a familiar melody or if I am always to be a shameful creature marked for all to see by the corrupting effects of the fall of man.
My mind moves in a fog, at times my thoughts are almost feral. I am easily angered and the least infraction can antagonize me to the point I must get away by myself or risk giving someone I care about a verbal slashing. It feels like I am lurking in a graveyard, searching for my own burial site. Surely, there is a headstone with my name on it because this person with sagging expression and stumbling pace is not me. I must have passed from this world at some point. But I can’t think straight; can’t remember. In my head it is a dark night, and the moon only serves to highlight and thicken the murk so I cannot find my way.
I know to claim a moonlight metamorphosis sounds mad to those who have never been bitten. But it doesn’t matter. Those of us who have suffered this fate are accustomed to being accused of mental and emotional instability. We are used to being thought of as attention-seekers, knowing well when we mark our calendars and howl our full moon warnings, we sound a bit delusional. But we have each other. We have formed a pack in this dark place and can bear witness to the truth of one another’s claims.
We see the powerful shining a light on the victims of other diseases. “Look!” they shout, and point, and sympathize, and tell everyone that something must be done to set those poor souls free. They work night and day in their labs, sustained by their sense of urgency and desire to cure those who are suffering. But for the werewolves of Lymeland, they reserve a cage in a dark corner and try to keep us hidden. From the shadows, we see them smiling, proclaiming to the world that our ailment is not as bad as we believe. They assure everyone that it is easy to destroy as if it were a simple, scrawny dog and not a powerful, dominant beast. Their dismissal keeps us locked up and feeds us their “facts” that claim we are fiction.
After all, everyone knows werewolves . . . and Lyme disease . . . are not real.
Lyme feels like this.
Sunday Driver
To the long line of drivers behind me, I am sorry. Please know that I am likely not even aware I am driving 40 mph in a 55 mph zone. At some point it will dawn on me, and I promise to hit the gas and make my way to at least 45.
If I could only contact each of you and explain; convince you that my snail’s pace is the best thing for all of us. I just need a little extra time. It’s been awhile since I’ve driven.
Maybe if you’d known me before I got sick. Maybe then you wouldn’t sigh, or roll your eyes and ride my bumper. You might even cheer me on if you knew all I’d been through to get back in the driver’s seat.
Maybe if you’d known me when I was a home health nurse, logging more hours in a car than I can count, you would show some grace. Twenty years, I drove from house to house providing treatments and medicine to those unable to transport themselves. I drove on roads that looked like driveways in weather that forced most to stay inside. Maybe you would see me in a more heroic light; be grateful and consider I may have once cared for someone you love. You might even stop shouting things like, “good grief,” or “c’mon lady,” or worse.
Maybe if you’d seen me on my last day of work; watched me turn in my nursing bag, computer, and name tag; saw me hug, and cry, and say good-bye to my friends and co-workers, maybe then you would find some patience. If you had witnessed my devastation, how helpless I was to save my livelihood in the wake of this microscopic army; if you had seen me when I was a whole person and watched that last piece of my old life crumble, leaving me barely standing – – an isolated ruin. Maybe then your testy fingers would cease tapping the wheel.
If you had watched me grow frustrated when my light switch would not start my dryer, or witnessed my panic when I could not remember the way home, or glimpsed my daughter’s face when she realized I was seeing things that were not really there. Maybe you could find it in your heart, to stop slamming your palms on the wheel, and instead smile and feel happy that some of the cobwebs have been cleared from my mind and, even with an occasional wrong turn, I always find my way home now.
I want to go faster. I do! I long to feel the confidence of a drive at the legal limit of speed. I hate making you wait, being that person who slows everyone down. I want to feel the wind blow my hair and turn up my radio. I want what you want right now while stuck behind me and what you will have as soon as I am out of your way.
I have been forced into the passenger seat for two years, sitting passively saying, “Turn left, now right. Take me to the grocery, then the pharmacy, please. Can we stop at the library?” Or, worse, I ask to be taken, to attend to an errand, and I hear, “Oh, I can drop that off for you!” or “What do you need? I can pick it up and bring it home.”
Being a passenger after having been so capable is like being a very hungry baby, whose mother is distracted and doesn’t bring spoon to mouth quickly enough. And just like that baby wants to grab the spoon and do it herself, so I ache to grab the wheel and deliver myself wherever I need and want to go.
So maybe I will speed up, but then again, maybe I will just pull over and let you pass me by, asking yourself, “What’s wrong with her? Why doesn’t she get off the road?” I won’t get to tell you that there is, in fact, a lot wrong with me but not as much as there used to be. I understand you cannot wait, but the road ahead has been here a long time, and she and I have some reacquainting to do. I am going to look out the window, feel the breeze, listen to NPR, listen to pop music. I am going to choose where to go next. And I am not, nor can I be, in a hurry.
Sorry.
Lyme feels like this.
The Sad Magic of Good Days
I had two good days. Two in a row. Those days are always a sad kind of magic, like Cinderella’s special night. I could see my future, and the vision brought a sense of urgency; a joyful agony. Lyme can be a tease, offering a lull in the action so there is always the possibility I may wake up pain free with energy, and a clear mind.
On those days, I remind myself to take it easy, but I know the pain, the fatigue, the mental lag are creeping up behind, ready to crawl over me and touch every inch with their gnarled, heavy hands. So I run. I move and do as fast as I can. It’s like finding my old self hanging in the closet, and I just slip into her, pulling her close; relishing the easy familiarity, the comfort. In her skin, I am reminded that I was not always diseased.
How, after so long held captive, how could I not jump again into the light and move my legs and arms, read until late at night, race my fingers across a keyboard, rushing to get all my thoughts down before they dissipated into a fog? How could I not dive into a clean, new day and absorb everything I was able? How could I not make the most of all the hours and minutes while I was endowed with a pseudo-health?
As is achingly typical of the abused, I returned as fast as I could to the likely site of my downfall, the tick-infested forest. I was giddy and sometimes wept in response to the freedom. My Lyme incarceration would resume, the warden was on my trail, but for a little while, I would enjoy my release even if it was spent on the run.
I allowed myself to consider that maybe I had turned a corner. I’d heard this so many times in so many ways. “Looks like you’ve turned a corner. That’s great!” or “You look good! Guess the worst is over!” Others say these things, but I know there is really no “corner” to “turn” with Lyme. I never tell them it’s more like climbing a muddy, slippery slope that allows only a little progress before the inevitable backward slide; before I have to start again.
For two days I fought to advance. I stole into the forest and let the green swallow me. I stood under the tallest, oldest trees. I caressed foliage, devoid of springtime blooms that I knew had been on display only days before and would return next year at just the right time. I savored feeling small and marveled at the persistence of life. I drew strength from my faith in God, that He would in some way, liberate me from sickness.
Then, on the third day, my affliction rose again. It was pain first, probably from my defiant march into the wood. Then fatigue and vertigo latched on pulling me down, and this way and that. My mind slipped back into the mist. As I stumbled and nearly fell walking across a room, as someone reached out to steady me, I remembered the sturdiness of only hours before. As palsy drew the side of my face downward, I thought of the lightness my expression must have held while I stood under the tall trees. As I lost sensation in my limbs, I recalled how good it was to feel the packed earth under my feet. As I limped to my car and climbed in, I thought of how solid my gait had been; how I had ascended every hill with my former ease.
Most days are bad. I am too tired to keep working my way up. I slip backward and get caught in Lyme’s complicated web. But always, I promise myself that I will try not to look back down the slope for too long; that I will try to believe that a summit waits and is within reach. I will try to believe in the magic of good days and will not fail to treasure every one.
Lyme feels like this.
Surrender and Fall Behind
Somewhere in my brain, from a long time ago, I remember this trail, and I remember this boy, my son who walks beside me. He is fourteen now, but I have in mind the eleven-year-old version. That boy wasn’t so tall, his voice wasn’t so deep. Three years ago we walked here, both of us steady and strong. Both of us captivated by our surroundings. Perhaps it was on one of those hikes that a polluted tick latched on and infected me. I don’t know. I never saw it. I do know that while I was immobilized by pain and fatigue, while I was hallucinating and forgetting how to use my appliances, while my speech became garbled and my hands shook, my son stopped being eleven; I don’t know what happened between then and now. I couldn’t take him anywhere. I couldn’t stay awake for late-night talks anymore. Some nights I couldn’t make it to his room to say goodnight so he came to me – – until he stopped. I was so sick, I wasn’t even aware we were losing touch. But all I could do was surrender and fall behind.
Right now, he is talking rapidly, gesturing, passionate about his subject – – a video game with a complex strategy. I love the sound of his voice, the enthusiasm. Internally, I lean in; focus on those things because no matter how I try, and while I know the meaning of every word he is saying, there is no hope today that I will be able to comprehend them collectively. So I surrender and fall behind.
He is lean and lanky, his legs stretching beyond the reach of my own. We are not long on the trail, and I begin to fade. I want to keep up, keep him by my side, but my steps are stiff and slow. My eyes are locked on the ground directly beneath my feet – – feet that feel more like raw meat with every step. I sense I am in danger of a sway or veer to the left, and pain persists. I concentrate harder, gripping my walking stick. He is still talking, still happy thinking of his game. A man’s voice speaking of a boy’s pastime. I cling to the voice and the boy while I surrender and fall behind.
He grows quiet. “Go on ahead,” I say, “just stay within shouting distance.” He moves past but turns to make sure of me. I reach forward, plant my stick, and pull myself toward it. I know how much distance remains, can still picture the curves, streams, and trees that wait; the landmarks that I must pass before this is over. I don’t want to look too far ahead. Right here where I am is enough. I don’t search for birds or look for wildflowers. I only think of the end, and relief, and of surrender. And I fall behind.
I catch a glimpse of my boy through the trees. Such a difference from eleven to fourteen. I made him come today, but when he was eleven, he wanted to come. He thought I was pretty and funny, and he told me things; stories he was dreaming up and ideas for inventions. I was his teacher, his ride, is mother. And then I was just sick. My isolation became his, and his room became a refuge; he lost interest in the wild world. His life turned virtual. My surrender became his and we fell behind.
I try not to feel guilty. Guilt is not a feeling, I remind myself. It is my standing before God. I didn’t afflict myself with Lyme disease. I did not choose to bail on motherhood; did not choose to end my flight in the web of this illness, did not intend for the adhesive of this malady to cling to my son and hold him back. But he was helpless against it and so was I. Lyme pulls me backward demanding submission, enforcing stillness. I cannot allow my child to stay here with me, trapped in this sticky silk; cannot allow him to be drained of life. I surrender. I fall behind. He must not.
So I say to my son, “Go on ahead, just stay within shouting distance.” Turn around, slow down, and come back to me sometimes. Walk with me a bit; tell me things, let me know what you care about, what’s important to you, and I will do my best to hear and understand. But then stretch your legs and take the lead. Love me by living out all my hopes for you. There will be days I can keep up better than others. There will be days when I will have to surrender and fall behind, but not so far behind that I can’t hear you. Not so far behind that I won’t have your back.
Lyme feels like this.
A Fish Out Of Water . . . Toss Me Back
A film has settled over my life. It blurs and conceals. It divides and separates. It sends down off-shoots that hang like curtains between my thoughts so they cannot reach each other, and I am left with disconnects all around; broken wires, their ends shooting out sparks of ideas that fizzle and fry and land nowhere.
Most days I live near the surface, helpless to break through the languid, lazy scum; other days I drift so low – – so far down that the sparks above, appear as harmless lights, like fairy dust or fireflies. Without heat or energy they float aimlessly above my head. And the film is not just a thin coating but seems to me to be the end of everything – – the place where my own personal atmosphere stops.
New treatments have, for a time, fallen like life preservers around me, shooting me through the stagnant ceiling. Under their influence, I have emerged gulping for air, walking out of this moribund pool to stand waist deep, even ankle deep, looking down on my enemies for a time, in awe that what had been a school of sharks was now just a bevy of insignificant minnows. I have stepped over them and entered, once again, my garden, my wooded trails and bike paths, and conversations with friends. But while distracted, busy, and happy and certain I had beaten my illness, the enemy rose again, inching its way up, reasserting its hold until little by little the foggy brain; the painful joints, muscles, bones, and skin; the numbness, stinging, and burning; the weakness, vertigo, and crushing fatigue rolled over my whole self, pulling me under. Clarity is, once more gone, and I wrinkle my brow, confused, struggling to understand what is happening to me.
There are days when I so want to see dry land, to walk where I used to and be who I was that I willingly pay the price. I kick and claw my way out and just let the mess cling to me, hauling it as best I can, but I don’t fit in anymore. I am flabbergasted by simple words, lethargic and weak. The lights, the sounds, the information rushing at me is too much; like a great, angry crowd poking and shoving. So I retreat and submerge. Staying under is easier, more comfortable than trying to navigate a wide, dry land with a fragmented mind and frail, tired body.
I don’t swim here, but I still dream of it. I am tossed, shifting in the direction dictated by my symptoms, different everyday but always present in some form. I roll and drift with the flux like so much wreckage, aimless and helpless to overpower this weighty affliction. I know God sees me. I know He hears, but from where I lie, it is hard to know what He is saying; to understand what He is doing. I squint and cup an ear, but I just can’t make it out.
I catch dull glimpses of people’s faces as they view me through the murk and mire, and I fear I make them uncomfortable when I can’t form words or when I stumble, when I don’t look like me anymore. When I don’t look healthy.
I don’t want to live here, in this watery cavern where my brain is dull, but it is becoming better than trying to live up there. Maybe I am evolving; adapting to this stale airless place. Maybe I feel safer where I can just be sick and avoid trying to act like I’m not.
Lyme feels like this.
I'll Cross That Bridge . . . Or Not
When my legs were strong. When my heart was strong. When my lungs were strong. When I was strong, I hiked. I hiked up and down. I pushed through streams, water up to my knees. I loved to think about my muscles; to be conscious of how they contracted, how they worked to move me up those hills. On one of my strong days, I made my way down the side of a steep hill and saw a face I will never forget; one that has come to mind many times since I became ill. I passed the woman as she made her way up. One. Step. At. A. Time. She put one foot on each step and then the next. Then she stopped; stood still, waiting for the breath, the strength to get her feet on the next step. I smiled and said hello on my way past; made a comment about how it was a “tough climb”. She agreed but did not smile. Her face was grim. Grim and determined.
I moved on and rounded the trail, breathing it in – – all the sights I loved, the sounds I savored, the feel of it – – breezes through trees, packed earth underfoot, resting my back against rough bark or smooth rock, feet damp from puddles, sliding my finger across soft flower petals, running it along the edges of found feathers watching the barbs spring back into place. I looked back before I began my ascent up the other side and saw her still taking one step and a rest. That was the first time it ever entered my mind – – that one day, hiking could be hard for me, or even impossible. It became a frequent thought, and whenever it surfaced, so did she. I wondered after that, while I buzzed around the trails, how I would feel about life if I could not come back, if I couldn’t see the old growth forest, or the stream filled with stones whose brush with the living was forever hardened on their ancient surfaces. I wondered if the forest would notice my absence.
It has been over two years since I have been there, in the deep parts of the wood. I think of the woman and wonder if she had Lyme disease, like me. Sometimes I make an attempt. I set out on the trail, but am soon stopped by pain, fatigue, a racing heart, and a voracity for the air that surrounds me but somehow can’t find its way to my lungs. From somewhere a bucket of sludge-like exhaustion oozes down upon my head and slowly coats me, it grips my arms and legs in a weight I cannot overcome and drips into my brain, concealing my once clear thoughts in a dark cloud. Was the grim-faced woman making an attempt that day? Taking a stand? Saying to herself, I will get up this hill, and I will be in this forest among these trees and this life?
I tried yesterday. It was a rare trip out of town, already worn from the drive but in a place filled with trails that led to waterfalls, hidden streams, deep, cool caves I could not resist the pull. The trails were crowded. I have never seen a forest so filled with people. The way was precipitous to the most special places so stairs had been added to aid the hikers. The steps were steep and winding; people moved up and down like the notes of a scale played prestissimo. I gripped the rail and started down all the while uncertain if I could get back up. With people pressing on all sides all of my symptoms gathered for attack. I was near the bottom but stopped on a landing, once again searching for air. The crowd moved quickly past, and I had the sensation of being in a city. They were like me when I was strong, and I was like her – – the woman on the stairs. I froze. Anxiety, pain, weakness, fatigue were the bars of my prison. Did any of the passers-by recognize that I was trapped? Did any of them consider that my fate could one day be theirs? I turned around, never taking my hand from the rail. I inhaled deeply and took a few steps back toward to the top just wanting to be on flat earth with no bodies in my space. Then I stopped. I rested. Another step. Stop. Rest.
The top, the end, it had seemed impossible, but I was there and pulling in every molecule of oxygen I could find. My knees ached, the soles of my feet were tender, daggers kept my legs attached to my body, and I was incredibly tired. There was nothing to end the fatigue. Nothing. My husband was there supporting me, keeping me upright. We sat on a bench and faced a bridge. The bridge offered more forest, more wildflowers, more waterfalls, caves, and streams, birds and butterflies, trees and stones. More trail, more pain, more tired, more reality. My husband asked if I wanted to go on. Tears came suddenly. They were angry. They were sad. With broken heart, I knew I would have to go back to the beginning the way we had come. I would not see what lay ahead, only what had already been. I could not cross that bridge.
Lyme feels like this.
Lyme Feels Like This 