It is the 7-year anniversary of the tick bite, the end of my “Sabbath year” from Chronic Lyme Disease, when I reached remission and “went free” to discover my life and livelihood. It was a good year. I went on a road trip, spent three months abroad, kayaked, bicycled, planed, trained, and automobiled. I meditated, transcended, learned, healed, lived, laughed, and loved. And now it is over.
I was wrestling with the winter holiday season, trying to navigate what roles I want tradition, culture, personal growth, natural rhythms, and quite frankly, capitalism, to have in my new life. Hesitant on my direction, I literally failed to put my best foot forward, and sprained my ankle with a severe grade 3 audible snap of ligaments. I haven’t been able to walk in 4 months (just graduated from crutches to a well-padded boot). The first two months were utterly draining on both me and my husband. First he had to serve me hand and foot, do the shopping, cooking, cleaning, laundry, and driving, then he acquired one of the nasty respiratory viruses going around; then I – still on crutches in a 3-story house – had to nurse him hand and foot, do the grocery orders, cooking, cleaning, and nursing, while keeping myself from catching his germs. We ended up having quite a winter hibernation, when we’d planned to be packing for Europe.
Predictably, the extra stress, heartache of watching each other suffer, and shattering of our 6-month goals tanked my immune system, and the Lyme symptoms crept back in. My doctor reported I was going into a relapse, and put me back on a heavy-duty herbal protocol. And sure enough, following the 63-day rule of neuroplasticity, my brain pretty much stayed in survival denial for two months.
Lyme relapse? Okay. I got this. I knew it was coming eventually; I had a preview in Europe, when all my systems went haywire adjusting to a new environment. I promptly reasoned myself out of panic: it is physically impossible to “go through that again.” I will never be in the dark like I was the first time. I have resources I didn’t have the first time, knowledge I didn’t have, tools I didn’t have, and a freedom I didn’t have – it took years to let go of my expectations of life, and accept the unknown, which set me back a great deal. This time, I knew better and would surrender immediately. Self-care was my full-time job now. I got this.
In true Lyme and gray-matter fashion, my body actually let me believe that for almost a solid two months. I grieved, I cried, I slept, I learned, we pulled together, fought, made up, lived, laughed, and loved. And just when the light at the end of the tunnel shone like the springtime sun, WHAM. It was the headlights of an oncoming train.
I crashed with that life-defying fatigue a Lymie will never forget. The utter exhaustion that tells every bone in your body you will never leave the house again. The feed-sleep-poop existence that makes you feel 90 days old. That ache in every joint that makes you feel 90 years old. The brain fog. The Lyme.
Someday, in 50 years when they gather my diaries for a collection titled “Writings of a Whack-a-Doodle,” I hope they might reconsider naming it after a phrase they will find often in my journal: “I’ve Been Here Before.” The brain is very fickle about what it selects to remember and learn from experiences in life, and mine was a terrible textbook (I blame the drugs). I had an utter meltdown in my doctor’s office when she acupunctured me right in the feelings, and I spent twenty minutes sobbing “I’m right back where I started! How could I go nowhere in 10 years?!?!” She had to remind me how much I’ve grown.
My diaries do the same thing. They tell the whole truth, in my own words. When I go back and look at my own thoughts and feelings, I invariably think, “Wow! I’ve been here before! This is not the first time I’ve been in this situation/felt this way/feared this thing.” My first response is “WHY TF DIDN’T I LEARN MY LESSON?!?!?” Then finally I realize this is the lesson, and I see that everything worked out, I knew the truth, and I just didn’t have the right environment to encourage it into a new mindset. I forgot. So I become my own right environment. I become my own advocate, my own witness, my own support system, my own reminder that I am capable of learning from my mistakes and knowing the right path. And I’m on it. My present moment transforms. My situation and solution becomes clear. It’s magic.
So while I kept my positive vibes as a mantra to get me through flu season, tax season, allergy season, and oh-dear-god-how-is-it-already election season, vibes can only do so much for so long. My body said, “Enough vibes. What are you even vibing?” The vibes are reminding my brain that I have resources to make it through. But at the core, I have to identify and use those resources. All of them, not just the fun tasty ones. The kick-in-the-ass and go-back-to-bed, get-the-F-off-social-media ones. Faithful Lyme is there to let me know when it’s time to to quit vibing, be still, and know. Listen and know. Back to the Monastery of St. Borrelia.
There is no shortage of people who would tell me I am relapsing, I have pathogens, I have inflammatory markers, I have PTSD, I have ADHD, I have bipolar disorder, I have depression, I have any number of ICD/DSM codes. But see, I'm really not into diagnoses anymore, seeing as I've had enough for a lifetime, there were no solutions offered, and I've fought for so long to feel human, that I refuse to participate in any system that reduces me to a number.
I finally got my hands on "The Myth of Normal" by Gábor Máté, who reinforces the point I've been driving for years: "disease ain't a thing." Not to say that Chronic Lyme or Long COVID isn't real, that there aren't pathogens, that it's all in your head, that you aren't sick. Oh yes, we're sick. For real. But amazing healing things start to happen in the body when we stop seeing disease as a thing, an enemy, a diagnosis with which to wage war and declare winners and losers, and start seeing it as process. A journey (at the risk of sounding platitudinous). Most importantly, a teacher. When Lyme, or depression, or UTI, or viruses come calling, I no longer grab my rifle and shoot them on my doorstep. I ask: "Why are you here? What's the message?" I sit in the Monastery of St. Borrelia, eating healthy, resting, getting acupuncture, and listening.
What is the lesson for today? Who am I? -- Have I honored that? Why am I here? -- Am I doing that? Life is going to be chock full of accidents and stresses and seasons. What do I know about my body’s ability to listen to the messages, telling me when it’s time to work and time to rest? What faith do I have in my brain and body to know when to push on in survival mode and when to respect repair mode? What gratitude do I have for my resilience that acknowledges the need for resilience (i.e. accepting that hard shit is going to happen, and instead of blaming life for being unfair, am I grateful it equips me with ways to keep on – even if that means shutting down for a while)? Can I respect everything in its season – winter, exhaustion, rest, grief? Can I honor Sabbath, transition, liminal spaces, emptiness, unknowing?
I must. Or I will live – and die – terribly unhappy.
I’ve been here before. The only thing I did “wrong” was struggle, fight, and doubt. The sooner I surrendered my ship to the waves of Unknown, the sooner my boat docked somewhere amazing. Every time.
How do I surrender? The first time you learn that lesson is the hardest. After which is the second-hardest lesson: don’t hold on so tightly next time. Because that too will be surrendered. Life becomes a series of lessons on how to close and open your fist, rather than grabbing it by the horns, until you eventually just hold out open palms to catch, and open fingers to release.
Or something like that, I guess…
I started half a dozen blogs on “life lessons” from this Lyme journey, and they all went to shit. I know nothing. Really. I don’t know what Lyme is or how to heal it, I don’t know what peace is or how to obtain it, I don’t know what transcendence or acceptance or faith is, or how to practice it (I have an inkling we might be looking at it – sorry to disappoint you). I was on a meditative path for a while, then I completely lost track of what on earth I was looking for. I was on a mystical spiritual path for a while, which abruptly imploded in an existential crisis. I’m currently in my Surrealist-Dada-Angsty Starving Artist mode, and though I’m tired as hell and literally nauseated by the roller coaster of emotions that I refuse to get diagnosed, I feel a still, small, steady, humming sense of belonging.
This is okay. I've been here before.
The world as any of us has known it has changed. The future as any of us had planned it is gone. At first I was really upset that I “healed” from years of chronic illness… just to awaken in the dumpster fire that is Humanity on Planet Earth right now. Then I realized, what a perfect time. It’s no longer me, sick, disillusioned, and alone because chronic illness put me on the bench for 7 years; it’s all of us. “All in this together” probably wasn’t supposed to mean that, but here we are.
Are we all trying to buy our first house in the worst housing bubble, inflation, and recession, and immigrate to Eastern Europe in the middle of a war? Probably not… but I have a feeling more people than let on are feeling just as bass-ackwards. Are we all creatives who know exactly what we want but fundamentally oppose the hyper-consumerist capitalistic practices necessary to obtain it? God, I hope not – I need patrons.
So this year, the tickaversary post has no advice. No timeline. No hope. No help. I don’t have a f***ing clue how life in, or after, Lyme is supposed to work, physically, mentally, or spiritually, or psychoneuroimmunologically. I usually sip half a glass of wine a few times a year, but last night I downed half a bottle in half an hour, and literally just asked my doctor if moxa can be smoked (it can’t).* I’m out of coping mechanisms to deal with this kind of angst, but for this final attempt, before I cram another bar of chocolate down my throat and binge-watch "Transatlantic": a call for the apolitical Dada Nouveau Revolution, and patrons of the Joyclam Cabaret.
Karawane.
*I do not endorse the consumption of alcohol or drugs as coping mechanisms; however I will absolutely encourage them over murdering people with your 2nd amendment rights any day. Get a f***ing therapist, America.