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.
Tag: Chronic Disease
You Look Great
I look great. That’s what you’re telling me anyway. Oh, I know you don’t mean Beyonce-great. You just mean I don’t look sick. Great. I shrug. “I feel pretty good,” I reply. But, you don’t see the uncivil war inside; can’t know that I am wishing with all my might, to crawl out of my skin and get as far away from my body – – my battlefield – – as possible. Good riddance army of malicious bacteria. Stop assailing my tissues and ruling my life. I can’t strip you of power and end your reign so I settle for dreams of exile.
You are sitting with me in this park, but cannot detect the presence of my enemies, these invisible bacterium invading my realm. I’m not expecting you to. Most blood tests can’t find them. They are masters of the clandestine, concealing themselves from my immune system, antibiotics, laboratories, doctors, researchers; leaving no visual trace when you look at me.
I know their names; Borrelia burgdoferi, Bartonella, Babesia among others – – partners in Lyme. I feel their effects. Right or wrong, they are the most real thing in my world, and even though I cannot see them, they are looming larger than anything else. They are enclosed by my flesh, living and working inside my body – – a whole society of overtakers. Come closer and you might run into them. You might notice some things are off – – these puffy dark pouches beneath my eyes, this slight veer to one side when I walk, this limp, my aimless sort of antihistamine-like stupor. But no . . . you are too far away on the outside.
You’re noticing that I seem tired and acknowledge you’ve heard Lyme disease makes people very fatigued. My hopes rise a bit as I affirm that it does. But then you bring up the weather. You suggest it might be this weather we’re having. After all, this weather makes you feel tired. So, I don’t bother with detail; don’t tell you that all I know of ‘tired’ is what I remember, how much I liked ‘tired’, how good it felt when it followed a long hike or a productive day in my garden. ‘Tired’ meant I had done something. I don’t tell you how it is getting harder to remember myself before this disease. Instead of trying to explain, I nod agreement and blink a lot, trying to stay awake, but I am fading; feeling this sludge of exhaustion coat my limbs, painting me with a weariness heavy enough to keep me still no matter how badly I wish or need to move, stealing first my ability for motion, then my desire.
I am wondering if this weather makes you feel like you are trying to hold up a car with the back of your head. Does it encase your arms and legs in the same iron sleeves I wear? Does it make chopping a vegetable akin to climbing a salmon ladder? I often turn to the Psalms for comfort and find the singer speaking of God as the lifter of his head. I know literally what this means. If God didn’t hold my head up some days, it would just stay plastered against the bed or the back of a chair. And some days He doesn’t.
You are suggesting we walk a bit. Do you see me cringe? It’s there, right under my smile . I am aware I can’t sit forever but really don’t want to bear my weight. One of these bacteria must have thousands of tiny fists whose only job is to pound the soles of my feet day and night. It hasn’t let up in almost a year. I am gritting my teeth as I stand. You are chatting, but I am distracted,. I can’t help it – – thinking about how hamburger might feel if it had feelings – – would it feel like my feet? Maybe the tenderness, but then there’s the burning, buzzing, stinging, tingling. I doubt hamburger would feel that way. A fleeting thought of lying down, of relief, and then I remember my heels can’t touch the mattress; my toes can’t bear the weight of the bed covers.
What did you just say? I was thinking maybe I should stop being stubborn and just get a cane, or a wheelchair and missed your last comment. You are laughing, so I laugh too, but have no idea why. (I can’t imagine I really need to go that far – – a wheelchair? Wasn’t I hiking up and down ravines a few months ago? How could I possibly need to be wheeled on a paved, flat trail or through the grocery store?)
Oh, you were saying something about how you heard Lyme causes arthritis. I think, ah, you believe in my pain. Then you ask if my knees hurt and I say, “Oh . . . yes!”
“Well, honey, at our age what do you expect? It’s time for our joints to hurt.” I know you are only trying to reassure me, letting me know my pain is normal – – for my age.
I feel a strange need to defend myself but fold up inside instead of pointing out that my knees didn’t hurt until I got sick, that turning forty-eight doesn’t mean every joint in my body should suddenly feel full of knives and needles, that my skin should hurt, my muscles should burn and ache, or that lightening bolts of pain should strike in my legs, arms, ribs, ears – – wherever they please. It shouldn’t mean the weight of a book on my lap is more pain than I can bear. A closed-mouth smile is all I muster.
We stop walking to stand and talk. Do you see me favoring one foot, then the other, until I finally point out I need to sit? Your side of the conversation never misses a beat, but I’m not hearing much as I am so focused on the bench ahead. Like a marathon runner at mile 26, that 0.2 feels like the longest day of my life only I skipped the 26 – – all I have to do is this 0.2. I am gripping the arm of the bench, knowing my pain shows on my face, in my movements, but you’re showing me your new shoes. “They’re cute,” I say, recalling all the shoes in my closet, unworn for the last year – – dress shoes, boots, tennis shoes, running shoes, all of them like wearing a bed of nails or pounding hammers.
What did you just say? I’m ashamed to ask, ashamed I missed it – – again. I listen, but lose track, certain I am a couple of sentences behind by now. Don’t take it personally – – I am trying, really. And will try until I am exhausted, until panic sets in because the word I need to retrieve from storage is taking too long to locate. I fear I may pick the wrong one, or maybe I already did, because you’re looking at me funny. Words, thoughts, ideas, whether yours or mine, do not flow and connect the way they used to. They are stuck behind a bacterial barricade, piling up into an unmanageable aggregation. Sometimes I get up and wander around, not knowing why, and then I think maybe I’m looking for all the words I’ve lost. I see and hear you but from a rudely awakened state, as if someone dropped and shattered a plate next to my ear while I was in the deepest part of a dream sleep leaving me in a groggy limbo.
I consider explaining that my white matter probably resembles swiss cheese, but I know you would assure me once more that it’s just menopause or old age, and joke about how you’re forgetful too. Something like, “Let me tell you, I have cognitive deficits, and I don’t even have Lyme disease. We’re just getting old.” You would think that was funny.
Does turning 48 mean forgetting how to get home from work? Or struggling to spell words you learned from Dick and Jane? Or recalling your address or phone number? When you reach your midlife, do you really think flipping the light switch will turn on the dryer, or pushing on the rearview mirror will turn off the car radio? Is it really so hard to discern left from right in your late forties?
I am hoping you don’t suggest following me home for a visit. We might not make it. I might not remember how to get there, or I may have to stop and ask you where we are and where we were going in the first place. As we discuss those things, I may see something and comment on it. You would wonder who is crazy, me or you? You may not see what I see, but don’t worry, it’s not you losing it. Sometimes I see things that aren’t really there. Is that normal for my age?
You are hugging me and I realize you must’ve said you were heading home. I’m hugging back and wishing I had been more attentive, more absorbed in your world, your thoughts, your jokes and stories. But your words and their meanings seem to float across a slow moving pool toward me and sink before I can catch them. I have to dive down and by the time I surface, so many more are coming my way. I’m afraid I grew weary today and let many of them drift past.
Waving, you pull away and I sit still in my car, in the quiet. My body hurts. Not a centimeter of my frame is pain-free. I dread turning the wheel, my upper arms ache as if I had ten tetanus shots in each one the day before. My fingers and wrists may snap it seems. My calves, shins, feet, ankles, hips, back, ribs, head, ears, shoulders – – all owned by pain. Which way is home? Right, no wait, that’s left, right is the other way. Isn’t it? I’m not sure, but head out anyway and things look sort of familiar so I keep going.
I am wondering if you think me a fraud; maybe an attention-seeker or hypochondriac. Who has this many symptoms? I must be crazy. You always try and tell me I am just like you – – that you forget things, your joints ache, you feel tired. But, you are going to work tomorrow. I cannot safely work as a nurse. I tried for awhile but procedures I’d done a thousand times were impossible for me to complete in the right order. I’m still not sure if I filled those last few pill boxes right. You mentioned what you were making for dinner tonight – – a new recipe. You will be able to follow a recipe today – – even after a walk in the park and a conversation. I tried to make an egg this morning – – prepared my skillet, cracked the egg, and opened it onto the stove top instead of into the pan. I watched it lying sunny-side up and battled to understand its cold, runny state. Something was wrong, but it was a good minute before I found the answer and formed a plan to clean up the mess.
I’m not like you, and for some reason I can’t quite understand, I really need you to know that – – to cut me some slack, to lower your expectations. Instead, I feel as if I lie in a coffin made of frosted glass. I keep trying to tell you that I am trapped, that I can’t move, that it hurts, that I am losing my way and my mind, but you can’t quite see me. I’m not clear to you. So you keep going, and I give up sometimes and lie still. I stop trying to communicate my suffering and wonder if maybe you’re glad I’m in here – – where you can’t really see or hear me. Maybe that’s why you keep trying to tell me I’m O.K. Are you trying to feel more comfortable with my decline? Maybe you are sad over my failing health, but don’t want to be, so you keep slinging a positive attitude my way – – but it’s just bouncing off this glass lid, not because I don’t want to feel positive, but because this lid is real.
Isolation is worse when other people are present. If I were trapped in this coffin and no one was around, I would not hope for an understanding, empathetic friend. But every time you walk by, I hope. I hope you will be sad with me when I’m sad. I hope you will encourage me, not by denying my illness, but by acknowledging it and knowing that I cannot walk far, or stay awake too long, or always understand your words. I hope you will be in this box with me as best you can so you will know this war is real, my enemy is strong, and that even though I win a battle now and then and have a good day, I have a long way to go before I win this war, and likely, I will never have a clear and final victory; there may be scars. I may have physical pain the rest of my life. My brain my never work as well as before. Even if I hike again, an overgrown path will likely always cause a cold sweat and rapid heart rate. The tiniest tick will swell in my imagination to a giant disease-ridden monster and the uninhibited joy of the trail will never be the same.
But the most prominent scar, I think, will be the knowledge that I came through a war – – that my whole life was changed, became a fight, that for years I lost much, and you will never know. For you it will be as if nothing happened. A majority of the medical profession, of which I have been a part for 30 years, will not believe me. I fear the isolation I felt in my illness will continue after I am well. I will have a membership in a secret club to which I will never really want to belong. Those unwelcome members – – Borrelia, Bartonella, and Babesia – – they’ll always be lurking in the dark corners, blowing poison smoke, never gone completely, always looking for opportunity to rise again. There will be others like me, my comrades in arms, who will know without words how I feel because they have felt it too – – they will be keeping their eyes on the enemy the rest of their lives, just like me. But not you. We are close; maybe friends, spouses, sisters; maybe you are my child, or parent, but you will never really know. I wish you could know for my sake and for others like me, but I hope, for yours you can remain a pacifist – safe from this chronic, destructive war.
Lyme feels like this.
Werewolves of Lymeland
A change comes over me when the moon is full. It wasn’t a curse that caused my affliction, but a bite.
I try to hide myself away during this phase so no one will see my altered state.
This transformation is painful. I may ache to the point of moaning and groaning. Sometimes a cry, unexpected, will escape my lips as sudden electric jolts shoot through my limbs. My muscles may jump and quiver or lock and cramp. I am taking on a different form and do not look or feel the same.
An invisible weight pulls one half of my body toward the earth making my gait asymmetrical and sluggish. Super strength is not a part of my transformation, instead the opposite. The right side of my body weakens, grows weighty, and numb, except the parts that hurt.
My countenance slips on one side. I am a bright, smiling Jekyl on the left; a drooping, dismal, Hyde on the right. I have not reached the point of drooling, but it isn’t far off, I fear.
My senses of hearing and sight become heightened to the point that I take cover against the light and cringe at high frequencies. In church, the music that I loved is now uncomfortable. When the godly lift their voices in praise, I close my ears and wonder if my sin has caused this physical barrier cutting me off from the songs that once gave me joy. I wonder if peace will ever again wash over me when I hear a familiar melody or if I am always to be a shameful creature marked for all to see by the corrupting effects of the fall of man.
My mind moves in a fog, at times my thoughts are almost feral. I am easily angered and the least infraction can antagonize me to the point I must get away by myself or risk giving someone I care about a verbal slashing. It feels like I am lurking in a graveyard, searching for my own burial site. Surely, there is a headstone with my name on it because this person with sagging expression and stumbling pace is not me. I must have passed from this world at some point. But I can’t think straight; can’t remember. In my head it is a dark night, and the moon only serves to highlight and thicken the murk so I cannot find my way.
I know to claim a moonlight metamorphosis sounds mad to those who have never been bitten. But it doesn’t matter. Those of us who have suffered this fate are accustomed to being accused of mental and emotional instability. We are used to being thought of as attention-seekers, knowing well when we mark our calendars and howl our full moon warnings, we sound a bit delusional. But we have each other. We have formed a pack in this dark place and can bear witness to the truth of one another’s claims.
We see the powerful shining a light on the victims of other diseases. “Look!” they shout, and point, and sympathize, and tell everyone that something must be done to set those poor souls free. They work night and day in their labs, sustained by their sense of urgency and desire to cure those who are suffering. But for the werewolves of Lymeland, they reserve a cage in a dark corner and try to keep us hidden. From the shadows, we see them smiling, proclaiming to the world that our ailment is not as bad as we believe. They assure everyone that it is easy to destroy as if it were a simple, scrawny dog and not a powerful, dominant beast. Their dismissal keeps us locked up and feeds us their “facts” that claim we are fiction.
After all, everyone knows werewolves . . . and Lyme disease . . . are not real.
Lyme feels like this.
Lyme Feels Like This 