In 2015, my physical and mental health deteriorated as I began the final taper off 15 years of unsuccessful pharmaceutical antidepressant treatment. Six years ago this weekend (April 2016) I found a tick crawling on me, after which my health plummeted off a cliff, leading to diagnoses of Lyme Disease, Babesiosis, Bartonella, and essentially, chronic illness from which I have been partially disabled ever since.
This past February, my husband and I celebrated Valentine’s Day at a nice restaurant for the first time in at least 4 years, food sensitivities and all. I cried.
Then we took a road trip – a whole 2000 miles – for the first time in 5 years. I got up at the crack of dawn to kayak down a river for the first time in at least 7 years. I cried.
This weekend I’m inaugurating Joyclam Studio’s vendor booth at a local festival, for the first time EVER in 36 years of dreaming of being an artist (being 10 years old and selling marker drawings in my living room to my parents for 25 cents notwithstanding). If someone actually buys my art… I might cry.
I’m DOING THE THINGS!
This is remission.
The tick-borne diseases are no longer detectable / not active. It’s an amazing blessing, and I find myself crying tears of joy over every twinkle light, snowflake, sunrise, and seashell… but it’s not at all what I expected. In between is a roller coaster of fatigue, bloating, insomnia, anxiety attacks, and feeling hopelessly LOST. I haven’t written much this past year, as so much of my writing is just messy reflection and working-through of strange new emotions and experiences which come with waves of bliss and trauma. I’ve published and unpublished, completely unsure of what I’m trying to say, or what I’m even feeling.
This is remission.
And… I don’t know what that means! With chronic Lyme, remission is a vague and moving target. Since there are no reliable tests (or, no affordable reliable tests) to quantify the presence of any of the hundreds of species of Borrelia, Bartonella, Babesia, etc, or even a legal medical definition for diagnosing chronic Lyme to begin with, I can essentially choose my own diagnosis, prognosis, and definition of healing.
The path I’ve chosen (or the path that chose me) is Classical Chinese Medicine, which determines diagnoses and protocols with ancient knowledge and natural imagery from a distant time and place – complex concepts hard to describe to the uninitiated. Based on the condition of my eyes, skin, tongue, meridian pulses, and overall patterns of health, my doctors determined that I have put the infections into remission, meaning my immune system is no longer over-burdened by fighting them, but working well and slowly regaining strength and vitality. I also underwent Autonomic Response Testing, which did not detect the presence of any of the “Three B’s.”
The most important indicator is my life and well-being. Next month I’m going home to Budapest for the first time in 4 years, and it will be the longest I’ve ever been away from my doctors and tailored treatments since getting sick. My life now revolves around ME – who I am, and what I love to do, rather than what infects me and what body part it’s trying to assassinate.
This is remission.
What remission from chronic Lyme is NOT is a sudden restoration to 100% health and vitality, full-time employment, a new purpose in life, rainbows and unicorns, or any sense of normalcy. Remission, it seems, is just a fancy name for some fourth-chakra “WTF am I supposed to do with myself” life stage (the first three being The Terrible Twos, Puberty, and Graduation). It comes with just as many tantrums, tears, and terrible nightmares of running down the hall naked and forgetting your locker combination.
This article from The Mighty does an excellent job of summing it up.
In “Radical Remission,” Kelly A. Turner, Ph.D, writes:
“Most of the cancer patients I work with say the scariest moment of their journey was the diagnosis, but the second scariest moment was when they went into remission. That’s because most cancer survivors are told while in remission that all there is to do is watch and wait to see if the cancer comes back, which is a terrifying and disempowering thing to hear.”
Remission is terrifying, not just because of the typical fear of relapse, the PTSD of doctor’s appointments, the medical debt, or the awkward explanations to people of things I don’t even have words for myself. There’s also a deep psychological fear of the Unknown. The old life and values are gone. The daily routine of managing chronic illness is gone. The coping mechanisms and support communities and commiseration are no longer appropriate or relevant in their old form. All your relationships have changed. All your social skills have changed (or completely gone down the toilet, let’s be honest.) Your priorities and worldview have changed. You’re lonelier than when you had a community of sick people always there for you at 3 am.
A new life is here. And there’s no road map. Now what? It’s like getting the Lyme diagnosis all over again: they don’t know the protocol or prognosis but they know insurance won’t cover it. You’re on your own again.
Back to the self-gaslighting. Here I am, declaring remission, but I’m still taking rest days, herbal supplements, wiping out my spleen, kidneys, and pancreas with stress, and unable to work a steady job or even SLEEP for a full night. Am I really in remission? Or is it all in my head?
For me, that’s just the ticket: I have decided to put it all in my head, or rather, take control with my head. My biggest breakthrough came from learning about the mind-body connection, the wonders of psycho-neuro-immunology, and how the mind can exert control over every cell of the body to resist or succumb to disease. Way beyond mere “positive thinking,” a lifestyle of meditation, honest reflection, compassionate inquiry, trauma-informed healing, self-love, and wholeness with All-One can literally change the structure of your brain and make or break your immune system.
So if I tell myself day after day that I am being invaded by killers and on the brink of death, and I have to be a warrior, but I’m not strong enough to get through this without my doctors, supplements, or familiar routines, then I have chronic Lyme disease, always relapsing, and I will find no shortage of evidence to support my belief: muscle and joint pain, heart palpitations, depression, insomnia, air hunger, panic attacks, reflux, bloating, fatigue, headaches, backaches, all of it.
If rather, I tell myself day after day that my body is amazingly intelligent and every pang, rumble, grumble, or urge is a message from a body that loves me and is trying to communicate with me what I need to do with it (or not do with it), feed it (or not feed it), hear it say, and release traumatic memories and beliefs stored within it, then I’m going to find only evidence that life is hard, and I’ve been so very brave and strong and resilient, and will persevere. And that compassionate love heals and invigorates.
Might I relapse anyway? Sure. Do I hate and fear Lyme Disease coming back? No… it’s been such a deep teacher. I won’t be thrilled to get sick again, but I won’t waste time or energy on fear of a future that isn’t even happening right now. I’m here to love my life right now. I’ll have my meltdown when I get there… and it will be okay.
Probably the closest to a consensus that Western medicine could come to about remission is that it means the tick-borne pathogens are still there, but currently inactive, hunkered down in biofilm bunkers like many other infections we live with forever, but never worry about, like EBV, chicken pox, herpes, etc. The common belief is that any time I let up on my self-care protocol, get too overwhelmed with stress, or otherwise weaken my immune system, these and other “opportunistic infections” are going to come out and get the party started all over again. This is literally the state of every human on the planet, but ignorance is bliss; if it weren’t for the trauma of the whole Lyme fiasco, I’d be able to shrug my shoulders with the rest of them and simply accept the fact that sometimes, we get sick! And then... we get better! So in working through that trauma, I’ve decided to return to my bliss, not with ignorance, but the truth: I am goddess over all my indwelling organisms, and if they wish to continue living happily in my macrocosm of a microbiome, mooching off my nutrients and hazzing my cheezburgers, they will stay obediently in their biofilm and emerge only long enough to sing, “Your Body is a Wonderland” before realizing their offense and getting right back to their monastery. I might even thank them for reminding me it’s time to take a Sabbath.
That’s not to say that Lyme Disease isn’t a collection of terrifying pathogens that wreak havoc on the body and can take down even the seemingly strongest and healthiest of people – it is. That’s not to say we don’t need proper diagnosis, treatment, and respect from the medical system – we do. I simply find that by changing my perspective on who is the victor and who is the victim (or eliminating competition altogether and just accepting what is – all life, all one, all working toward balance), by remembering gratitude in every situation, and loving my self for who I am and not what I do has provided a snowball of wellness where once seemed to be only an accumulating mass of illness.
This is the essence of some great resources I’ve tapped into, from Gabor Maté, Bernie Siegel, Joe Dispenza, Caroline Myss, John Sarno, Caroline Leaf, Bessel van der Kolk, Eckhart Tolle, and many other mind-body practitioners. Much of it sounds downright offensive in the wrong time and place. But when you reach that place of giving up all conventional reason (and conventional prognoses) to seek deeper healing, higher power, and total control over your own healthcare, there are some amazing arms waiting to catch you.
Here’s a little anecdote illustrating how I’ve felt the power of my mind and beliefs over my body. One night I was reading John Sarno’s “Healing Back Pain,” which theorizes that most back pain is not actually from structural issues (though they may be present, they are not actually the cause of the pain, though physicians assume and teach otherwise), but rather the pain is generated by the mind/body trying to distract a person from confronting a deeper emotional pain. (Similar theories posit that physical pain is stored emotional pain or a warning signal from a traumatized area – probably it’s a both/and scenario.) Regardless, it had me considering emotional causes of some lingering pain in my spine. This specific pain first appeared in 2018 after a frenzied and stressful day of packing for the last time I saw Budapest; lifting suitcases left me with this insufferable itchy tension in my spine that desperately wanted to be popped by a chiropractor but refused to loosen up. I was up the entire night (and for 3 days after that) with absolute torture of mind and body over my ache and the decrepit mess I’d become. I was having full-blown hallucinatory panic attacks. I now require physical manipulation before, during, and after moving boxes or doing housework, and frequently need work on my mid-back.
As I was reading Sarno’s book in late 2021, the pain was in a flare again; by now I’d learned to breathe into it, no panic, but still uncomfortable and irritating. I thought back to when it originally appeared in 2018, and wondered why on earth my mental health took such a nosedive from a mere muscle ache (I mean, it was annoyingly tense, but really… demons knocking down the walls?) Why? Because it was at one of the lowest points in my whole Lyme journey, when I still hadn’t figured things out, still doubted my grit and grace, and still hadn’t surrendered to sacred rest, self-care, cocooning in grief, or dissolution of the old. I was still fearing and resisting transformation. I still wanted my life back. And that I was in so much pain from trying to do that life – travel home again – told me one thing: “you can’t.”
“You can’t do this anymore. You’re not that person anymore. You’re weak. You’re done. The life you loved is over.”
No wonder I was distraught.
But here I was, three years later, on the brink of remission and new life, yet this pain returned, and I asked myself, “What is this pain telling me today?” And the simple answer was that I had done some deep cleaning, and particularly vacuuming, which always irritates those muscles as I lug the vacuum around the house. I’d cleaned my house. I’ve had the energy to clean my house, literally, like once a year. And that day I’d done it for about the 3rd time in 6 months. I cleaned my house! I worked! Of course I was sore! And then it hit me:
“This pain isn’t saying, ‘You can’t!’ It’s saying, ‘You just did!”
The pain doesn’t mean I can’t work or travel ever again. It means I just did. And I will again. With that revelation blowing my mind, I took a deep breath into my spine and expanded it into the muscle pain. And on exhale, it disappeared.
The pain disappeared.
Regular muscle pain that was fully justified by the workout I’d given it after long chronic illness, that would normally linger for days, disappeared in an instant by changing my thoughts about it.
I know I read about this all the time, but when it actually happens, it’s just… wow.
Yes, my back gets sore when I carry heavy things, and after 3 days in a car, after lugging a kayak around crystal clear canals, and I get it worked on by a physical therapist, and I hope someday I won’t have to end every active day with a sock full of tennis balls underneath it… but under no circumstance does the pain say, “you can’t.” I have amazing memories of all that “I just did.” And it makes all the difference.
Another thought that has come out of this mass of confusion called “remission” is just that: it’s called re-mission. It is a re-missioning of my life. I’m embarking on a new mission. All that I was living for and the assumptions I was living under have dissolved, and with a new life comes a new purpose. That idea fluctuated between being inspiring motivation and a daunting assignment, until I added a little wisdom of perspective: it took me 21 years to find a mission for my first life, and I still never fully figured it out; what makes me think in this new life I will magically find my purpose in one year? Or even two, or five? I have so much time! I can actually see my life since “rebirth” as progressing along the same emotional path – from the weeks of a very clingy and dependent infancy, months of a confused and emotional toddlerhood, a sponge soaking up wonder and knowledge, to a discovery of a confident individual self, then more uncomfortable questions about life and identity in a “re-puberty”, to falling in love all over again. Dr. Bernie Siegel asks his patients, “Do you want to live to be 100?” My response is an audacious, “No… I’m going to live to be 120!” With that belief in mind, I still have 3 more lifetimes to mission and re-mission and grow to my heart’s content!
Then I realized, the first natural law of my new life is that time is an illusion. My journey through life is a succession of present moments that unfold in the only thing that is real: the Now. There’s no schedule or protocol or expectation. I don’t need a mission. Life is for discovery, not checking off boxes. It’s for loving and living, not laying out in a 5-year plan. My purpose is to be, and to be me. Mission accomplished. Now. And now. And again right now. And woo-hoo, I just did it again! Look at me go!
I’m exactly where I’m supposed to be. Lost as ever, and finding myself right here.
TL;DR - The Tickaversary Update Skinny
The diseases are in remission. I am not restored to 100% health and vitality – not because of battling ongoing infections, but because of the muscular deconditioning, nervous system dysregulation, and general PTSD from the whole ordeal. In short, I’m going to live, and I’m going to recover… but I still have a lot of regrowth – and self-care – to do.
What has driven my healing the most in the last year is continued treatment according to the principals and philosophy of Chinese Medicine, radical self-love, breaking down a destructive and toxic set of religious beliefs, self-guided neuroplasticity, psychological “re-parenting,” and nervous-system retraining to rewire my brain and body for a calmer, more controlled response to my environment. I’ve done this by myself, with the help of books, podcasts, free meditations, documentaries, online seminars, and some wonderful Instagram accounts. I know I must declare "this must only be done under the supervision of a licensed professional," and I can’t say it’s for everyone, as not everyone is going to feel safe enough in their own skin to navigate the terrifying and violent surges of trauma alone; however I must say that IT’S POSSIBLE and I would never take away anyone’s hope and potential just because they “can’t afford a therapist.” That being said, I have an amazingly supportive spouse, incredible Doctors of Oriental Medicine, and a compassionate physical therapist who does myofascial and cranio-sacral work, which has helped me make enormous strides in somatically moving traumas from my body and mind. So technically, I am not alone, but the immense inner work and mental preparation for healing have been 100% yours truly, with foraged resources. There is no protocol for “how to heal.” It’s been a river that I’ve had to float on, violent rapids I’ve had to navigate, twists and turns that I just had to see where they take me. It’s just life. And we each have our own.
Healing is a privilege, and as much as I wish to share the wealth, and hate to see others suffer, the lesson I’ve learned is that the journey IS the healing. To make it shorter, or to prevent it altogether, for someone else would actually be to rob them of this incredible privilege and the freedom of fully knowing and loving their true self and limitless potential. I’ll have plenty of time to wrestle with this paradox and survivor’s guilt… for now, I rest in love. Love myself, love my journey. Love yourself, love your journey. Love others, and love them wherever they are in their journey.