This past weekend was my Tick-aversary – the day I found my first tick in 2016, after which my life fell apart. I usually observe with a status update, explanation of my lingering symptoms and treatment, and what my protocol will focus on in the coming year. It’s been much harder to get a grip on that this year. I think I’m finally on the same page as the rest of the world in 2021: change, uncertainty, and constant readjustment. I don’t know what’s happening, and I don’t know what to expect. But I believe in sharing our journeys… I just so often don’t have the words anymore. (So when I've finally collected them, they tend to be many. My apologies.)
Anyone who’s not still in denial about COVID-19 realizes that world as we know it has changed at every single level. Our healthcare, our social life, our families, our education system, our economy, our travel, our media, our faith. It will never be the same. We have a unique opportunity to wake up to the old patterns that got us here, and take the power to change them for the future we want to build. We can use this opportunity to take the reins for ourselves, or shrink back in fear and uncertainty and let the same old, same old take over again. It’s a terrifying prospect either way.
At least, this is what is happening inside myself. I’m in a new territory – the “Remission Purgatory” as I call it. A space in between sick and healthy that I’ve never heard anyone with Lyme talk about. (In hindsight, I’m sure if they did, I couldn’t understand it – it’s not something I think you can grasp until you get there!) It is often said that you will remit and relapse; just when you think you've beaten it, you crash again. I just don't know how to process that. I no longer identify as a chronically ill person. I no longer find “Lyme Disease Warrior” at the top of my bio. It’s like… just the school I went to. And the whole point is to graduate. To move on. To fly off into your career and true identity.
I just don’t know what that is yet. I don’t have a job lined up. I don't even think I graduated yet, maybe this is just a really really long final exam! The point is, I identify more with being well than sick. I have had a huge breakthrough. Much healing is happening, but I’m not healed. I still have chronic fatigue and constant dissociation/derealization. I live in a fog. And I don’t have concrete answers for that. Mitochondrial dysfunction? Heavy metals? Complex PTSD? Pandemic stress? Unresolved emotional trauma? Brain damage? Nervous system deregulation? All of the above? Probably. Do I still have tick-borne infections or just residual damage? Tests can't tell me that definitively.
I have many options for exploring and treating this. But mostly, I feel, from the depths of my soul, what I really need is time and patience. Respect for my volatile emotions and abilities. What I really want is for the world to wrap their heads around the idea that it's not sick or well, black or white; it's all transitional and what we really need is listening rather than labels. What I want is a universally understood and respected term for convalescence. For transition. For a process.
Earning My Wings
I have found incredible comfort in learning about butterflies. I few months ago, I emerged from a very dark cocoon, fully aware that I had wings, and dancing and singing in joy and awe of my transformation. I didn’t heal Lyme, but Lyme healed me. I became a new person from the experience I went through. I changed my brain. I changed my body. The world looks different. I’ve been reborn. Miracles!
But then I crashed, hard, with fatigue, depression, insomnia, and night terrors. Mood swings and heartache, all sprinkled with intense healing and joy and happiness. What is this? I started looking for recovery stories, remission stories, dark-night-of-the-soul-healing-journey stories, trying to make sense of this bipolar situation – the heights of peace and the depths of despair.
I read that it takes time. Healing too is an exhausting process, as Spoon Theory has taught me, requiring a rest from mental work as well. I likened it to hatching from my cocoon and flying off on my new wings… smack into a tree. Shocked and stunned, I shake off the impact and just have to sit on a branch while I learn how to fly more carefully.
But I just recently learned a thing about butterflies that fit so perfectly, and I am resting in its comfort. (Lepidopterists, bear with my poetic license, please.)
The process of a butterfly emerging from its chrysalis (or a moth from its cocoon) is called eclosion. And it’s not just a singular act, but a process. Just like a caterpillar doesn’t spontaneously become a butterfly, but must wait and slowly transform in the in-between pupa stage, even a pupa doesn’t spontaneously burst out into a butterfly and fly away. The transition between each stage is also a long and delicate process.
So yes, I am a butterfly. My former worm disintegrated in my cocoon, and that mess of an unraveled mush has been my years of Lyme Disease. In 2020 I finally realized that this disintegration of my life was only the beginning, not the end. My cocoon – my illness - was not a prison, not chronic and terminal, but merely the holding tank for my messy reorganization and transformation. Though still trapped in the dark tightness of my discomfort, I became very aware that I had indeed developed wings. They were small. Shriveled. Hidden. Eventually, I accepted that I wouldn’t be getting my old life back, but neither do I want it back – who wants to go back to being a worm, when you can be a butterfly?!
At the end of 2020, with a lot of neuroscience and trauma therapy and religious deconstruction, I started gnawing through that cocoon. The light penetrating the darkness was intense; chipping away at my own safe space, a mind-wrenching paradox. But I kept up the struggle convinced of my destiny, and was finally released earlier in 2021, so fittingly, around my birthday.
And that’s where the confusion started. I'm free! I'm a butterfly! But I felt like I flew off and hit a tree, because I didn’t know about eclosion, or the full emergence process.
After the butterfly hatches from the cocoon… it waits. It has to hang upside down for up to two hours for the wet wrinkled wings to spread out, dry, and gain structure. Yes, it’s a butterfly, but no… it can’t fly. It has to wait. And the waiting is crucial. If the butterfly falls or doesn’t have room to spread the wings properly, it will be permanently deformed, and may never fly.
There’s a wonderful but tragic story in my favorite devotional, Streams in the Desert, about interfering with this process. The writer sees the struggle of a hatching emperor moth, who must squeeze a very fat and swollen body through a tiny opening in its cocoon. Impatient, and eager to help, he snips the opening with scissors and frees the new moth. But it falls and dies, deformed and swollen. Because the whole point of that struggle is to let the pressure from squeezing through the tiny hole push fluids from the fattened body into the wings, elongating and thinning out the moth, so that only when perfectly formed, it will be able to fit through the opening. Interfering in that process is fatal, despite the best intentions of the human to "help". We have to respect struggle for the growth it brings.
Realizing that timing – and waiting – is critical for the development of a butterfly or moth, even once out of the cocoon, is comfort enough – to remind myself that this isn’t just a useless, lost, lazy stage, but absolutely crucial for the very development of the wings that will carry me into my healed future. Yes, metaphoric, but it also makes perfect sense biologically, psychologically, and spiritually. Rest and digest. My time has not yet come. Almost there. Just be patient.
But the wonder keeps on coming. First, the butterfly has to hang upside down for gravity to work. It’s the weight that forms the wings. That which I think is heavy and weighing me down, the burdens that I wish to be rid of, the vertigo of my world turned upside-down, is the very thing that is developing my greatest strength. Because of that weight… I will soon fly.
Second, it’s not just the weight of gravity. Pumping through the wings is something called meconium. A waste product of development. Yes, the same word I just discovered is used for Baby’s First Bowel Movement – a most disgusting pile of sludge stored up from the time in the womb (yeah… this biological clock can just keep ticking. Like seriously, ew!) If this is ejected into the amniotic fluid before birth, it can be toxic to the baby. The butterfly’s meconium is the leftover fluid, the unused portion of goo from the disintegrated caterpillar that wasn’t rearranged into the new butterfly. That “waste” is what is pumping from the gut of the butterfly into channels of its new wings, to form that on which they will fly.
And when the wings are fully formed and dried, the butterfly then releases the extra meconium. Only after it has fulfilled its purpose is it ejected and let go. All the mess in my life - it’s not waste. It's useful. It's life itself. And disgusting as it may be, if removed, it would choke a young life, and deprive the butterfly of flight.
The wait, the weight, and the waste are precisely what makes the wings.
My god, I’m weeping.
Oh my beautiful life. My beautiful, tragic, wasted worm of a life. Transformed. Not in spite of, but because of, the wait, the weight, and the waste.
I also learned that “butterfly” and “soul” are all the same word in Greek: “psyche.” I love my butterfly soul.
I’ve come to rely on, more and more, the metaphorical, the parable. Statistics and labels and institutionalized knowledge rarely suffice for me anymore. Because what I’ve been through has no scientific structure, no “proof”. Starting with the crumbling theories of Lyme Disease. This is why Chinese Medicine was my healing refuge. It put into words things that Western Medicine failed to describe. It saw things that Western Medicine could not prove. It quantified my humanity with spirit and love, rather than numbers and statistic comparison. I got to be a person first and foremost, rather than a patient.
But I’ll try my best to give the annual Tickaversary rundown in layman’s terms. Because no matter what stage you’re in, “I didn’t know you were still sick!”, “I thought you were healed!” “Aren’t you better yet?!” “What’s wrong with you?”, “Can’t you just…?” and “Have you tried _____?” still come up, and it’s no less irritating at any stage of sickness or recovery.
WHAT’S NOT IN REMISSION YET:
1. Chronic fatigue.
I need frequent rest throughout the day, and major days off throughout the week. However, what I can get done in a day has dramatically increased, and my recovery time has decreased.
2. Brain fog.
This is a general term for what I believe is actually many different things.
First, just mental fatigue, like anyone gets after a stressful week.
Second, C-PTSD dissociation and derealization. A psychological phenomenon of surviving stressful situations. The brain can’t process the threat of chronic illness, so it sort of just denies reality. I consistently, all day, every day, feel like I’m not real. I’m watching life happen through a television screen in my eyes, but it’s not personal, it’s not me, I’m disconnected from reality. I feel emotions. I often feel like myself, but I’m not connected to the world. I’m not connected to my past. Once in a very rare while, I will “wake up” from what feels like a brain fog coma, and suddenly feel my life. My past is mine again, my memories are real, they are mine, my body is mine. The world is clear. But it passes in a few hours, and I’m back to a zombie. But the occurrence of these moments gives me incredible hope that this disconnection, whatever it is, is not permanent brain damage, but merely a pathway that needs more priming. Which I hope is merely a matter of time and further trauma-informed self-care.
Finally, I’m 16 months clean of antidepressants for the first time in 20 years. I have read these can bioaccumulate and be released for the rest of my life. My brain could be belching poison forever. Thanks, Pharma. Still, I plan on overcoming.
3. Food sensitivities.
My tolerance for processed whole foods is increasing, but during stressful or busy times when I rely on a lot of “healthy” convenience foods, I still don’t feel good and desperately need to get back to my veggies. Tried a “natural” cookie just yesterday and had a histamine and brain reaction, which aren’t just annoying, but downright re-traumatizing as they bring back so many horrific memories.
4. Pain and neuropathy.
Is merely a matter of being out of shape (I hope) and requires gentle rebuilding of muscle, nerves, and tissues. Only occasional flares, except for pretty much constant weird migrating head sensations. My brain's been doing all the work lately.
5. Nervous system dysregulation.
This is pretty much behind everything.
WHAT'S THE PLAN?
In general, embracing the Mind-Body-Spirit approach to health. This is my personal trinity. Exploring each of them grows my strength in all of them.
1. Chinese Medicine and Acupuncture. An entire medical paradigm of Mind-Body-Spirit.
2. Trauma-informed therapy. Self-work in trauma and emotional regulation has been THE THING for me the past year. Life-long coping skills and learning. Looking for a more structured in-person approach that has not been available during COVID.
3. Deconstruction and regeneration. I formally left my church this year, as I have been deconstructing my religious views. Religion has been the bedrock of my entire existence, so it’s been excruciating to my mind and body as well as spirit to have to jackhammer through that and find out what I’m really standing on. Jesus is still my rock. But I’ve had to remove a lot of sediment cemented on that guy, and it’s been painful to throw out, for myself and for those still standing on it. Thankfully, Jesus was also a carpenter and knows how to rebuild things!
I’m mostly spent with the stress of moving house. I’m desperately grasping for moments of rest and peace to sustain me through this monumental task, which I calculated we’ve done 6 times in the last 7 years. Which also explains my extreme difficulty in processing my own health and mental state – how do you ground yourself when the foundation is always shifting? How do you reorient the mind, body, and spirit, when you’re so preoccupied with literal spatial reorientation? How do you find your identity when the community keeps changing? That’s exactly what I’m trying to learn. Hopefully just a big pile of meconium to pump into my wings… before I finally let it go.