Reflections on a mindset… and a new way forward

I remember when I was first sick. After 9 months of full time mystery solving, I’d finally tested positive for an illness that would explain the myriad of different health conditions that had taken hold of me in 2014, rendering me homebound, profoundly disabled, panicked and traumatized. Finally I had something specific to fight: Lyme disease. Sure, “Lyme disease” is shorthand for multisystem immune deficiency syndrome (MSIDS), a complex condition that actually leaves you battling multiple infections and sources of bio toxin overload at once, but at least it was a singular direction to work in!  And a singular direction sounded a whole heck of a lot better to me than the previous working theory of most MDs I’d seen: That I was simply a very unlucky young woman with a history of migraines, arthritis, plantar fasciitis and multiple sclerosis who also managed to contract 12 unrelated devastating chronic conditions in one year.

In those early days, while I waited to see my first Lyme-specific doctors, I prepared. I built my herxheimer kit, I made a list of the foods I’d stop eating, I implemented a safe sex protocol for my long-term partner (who exhibited a number of symptoms similar to mine, but found no interest in seeking his own answers). In short, I found every single type of armor I could possibly strap onto my fragile little body, and I drew lines between “safe” and “unsafe”.  I geared up to fight. 

In months 1 and 2, the fight was underway. And boy did it feel like battle – it’s true what they say, treatment makes things much worse before it makes anything better. In my 3rd month of treatment, I doubled up on my approach to wellness. In addition to antibiotics and herbs I was using to attack the infections under the care of an LLND, I visited LymeStop in Idaho for a form of magnet therapy that so many were swearing worked well for them.

Whilst on location in Coeur d’Alene, Idaho, my then partner and I strolled through the natural food store in Idaho, which we’d driven an hour to find. I scoured the shelves, read each nutrition label twice and filled our basket with foods that mapped to my precise specifications of “safe”. As he tossed food into his basket with comparative indiscrimination, he casually pointed out a simple fact that had already been festering in my thoughts, “You know, if you start to get better after this magnet therapy, you’re not going to know which treatment helped.”  

“I know,” I grumbled back in defeat, frustrated that my desperation to get well was leaving room for any ambiguity in my life. 

“It will probably be good for you to not know,” he responded as he picked out bread for himself.  

I shot DAGGER EYES into him. How could someone who claimed to love me so much wish me such an incredible source of discomfort?! Didn’t he know how important it was to me to have precise measure over this struggle of mine?? And how much anguish and frustration this uncertainty would introduce to my life?  

This simple exchange in the grocery store left me feeling really alone, confused and… you guessed it… unsafe. It also turned out to be one of many fraught discussions he and I would have about my fight against Lyme disease.

One of the most painful points of contention we hit most often in those discussions was around certainty. He would often say things like, “…Lyme disease, if that’s even what you have,” and I would get SHAKING MAD at him for questioning my narrative. I felt that him questioning the specificity of my condition meant he didn’t grasp how sick I was, didn’t comprehend how violated I felt by decades of missed diagnosis, how afraid I was of losing my physical abilities, my mental clarity, my emotional health. How well he really did understand those things (or not), I actually don’t know. But one thing is for certain, he didn’t understand that challenging the nature of my illnesses introduced ambiguity around the only clear path I saw to wellness.  And that scared the SHIT out of me. 

Indeed, my entire sense of safety had become tied up in knowing with certainty what was wrong with me, and in clinging to the rigidly defined path that would get me all the way well.  

Fortunately for me (unfortunately for that relationship) my rigid dedication to the path actually did work pretty well. Over the course of nearly 2 years, the combination of antibiotic treatment, LymeStop, and lifestyle changes got me damn near symptom free. In fact, the only symptom that remained 2 years in was my ringing ears. And in early spring of 2017, my Lyme doctor began to wean me off treatment.  

As most of you know, things got cloudy about 6 months later. By August of 2017, I was back in the thick of the fight. Only trouble is that so many things happened at once and, as the picture of my health has gotten infinitely more complex, I realize I don’t know what I’m fighting exactly. At this moment, I am living with effects of Lyme disease, Bartonella, the usual latent viruses so many of us live with, active Hashimoto’s, a recent multiple sclerosis lesion on my spine (my first since about 2012), possible toxic mold exposure and inflammatory back pain that may or may not be caused by a mildly bulged disc in my spine. And I can’t make sense of the borders anymore. I can’t tell where one stops and the other begins. I don’t know if one issue is the “big” issue, or if unraveling them all would require a specific ordered approach. And, most challenging of all for my formerly rigid, safety seeking self, I don’t know how to protect myself from future damage. The list of things to be wary of has become too long to adequately mange: ticks, fleas, human sex fluids, heavy metals in my food, in my tattoo ink, in my dental work, old buildings, new buildings, leaky buildings, second hand shops, sitting, standing still, bending, twisting, lifting….  it’s too much!! 

My Lyme doctor in my last appointment used the word “fragile” to describe me as she suggested I stay out of all buildings I can’t test for mold. My face scrunched up in disgust at the thought of living with that level of fear… of standing outside shops and homes of loved ones alone and afraid. And I realized in that moment, I am not the woman I used to be.  I am revolting against a life focused on seeking safety. 

After two and a half years of what had started out as unwavering dedication to my exact story and my rigid path, I can honestly say I don’t crave answers anymore. I don’t crave certainty, I don’t crave rules to follow. I don’t believe I am fragile. I don’t even really think of myself as sick anymore. This is my body… this is my life… and this is my struggle. And it’s changing me to be a better person.  

I surrender. And that’s my favorite word right now. Because I don’t see this as loss, I see this as letting go. I don’t want to FIGHT anymore. I want to flow.  I want to release. I want to BE.  

Longtime readers, please don’t misunderstand me, I am not giving up on a quest for health. I am not quitting treatment, I am not eating indiscriminately, I am not carelessly allowing risk into my life. But I am switching perspectives. You see, if you’re fighting something, you either win or you lose. And with the number of unique challenges going on in this corporal form of mine, I can’t “win”. This will never “end”. There won’t be a big conclusion. Or, if I’m speaking honestly from my spirit, this IS the big conclusion: The struggle will never end, but I will find my home within it.  

And the tears flow as I write that because I feel released. And the release is beautiful.  

In this moment, I am infinitely grateful that THIS struggle came into my life. Before I was sick and throughout the worst of my health struggles, I had found safety in certainty, control, and a finite life. And I am a stubborn motherfucker. I wasn’t going to let go of that perspective easily, so the universe, or God, or whatever collective consciousness it is that envelopes this human experience, in its infinite wisdom, it CHOSE this unwinnable lifelong challenge for me because this is exactly what it would take for me to get down on my knees, turn my hands up to the heavens and admit “I don’t got this… I am at mercy… show me what I need to know.” 

And when I ask THAT question, this is what I come to: My life is not meant to be struggle, control and fear, my life is meant to be surrender. And in surrender, I find peace and beauty and gratitude.  

The change feels like it’s happening all at once now, but the truth is, it’s been gradual. Once I found relative wellness in 2016, the shift started  in small practicalities – occasionally trying a few foods I normally strictly avoid. Testing positive in a urine culture for mycotoxins and not immediately tearing my life apart looking for a mold source. Falling into bed with a man who lit my soul afire and paying more attention to the way his hair wraps around my fingertips, the way his muscles flex and release, the way his arms envelope me than I did to where exactly every drop of our body fluids land. It was so slow, and so natural and so easy that I didn’t even notice I’d strayed from my original fighter’s plan. 

I didn’t notice it, that is, until I fell ill again in August. When I got the news of the new MS lesion, the news of very serious relapse, I looked at all the beautiful freedoms I’d slowly introduced to my life and I lamented. I lamented because my automatic subconscious thought was that I’d have to return to my rigid guidelines and my finite definitions of safety to get well again. I’d have to cut out every even remotely “bad” food, spend every night in a detox bath, stand sadly outside of used book stores….. I listed the rules I’d have to go back to and I felt ACUTELY the losses that come with those choices. The loss of freedom, the loss of possibility, the loss of wonder… the loss of inhabiting the spirit side of my life. Spirit, you see, doesn’t dwell where fear lives. And I thought I’d have to move back into fear.

At first, this inclination not to FIGHT surprised me. I worried that I’d lost stamina for the battle. I worried that NOT wanting to give these things up meant I was giving up my desire to be well. I fell into sobs of wondering how I had become so weak in the face of this relapse. I wondered if I didn’t love myself enough anymore to prioritize my rigid path once more.  But I see now that I am embracing things as they are and resisting not the effort for wellness, but resisting life in fear. The truth is, I cannot protect myself from every possible risk, and if I tried to do so, I’d miss some of the most beautiful moments of my life. And I am done missing the beautiful moments. I am done missing delicious dinners, I am done missing beautiful hikes, I am done missing incredible bike rides, I am done missing possible great loves.  I love myself enough to CHOOSE those beautiful moments even if they come with uncertainty.  

And so I will not walk a rigid path. I will not make lists of foods that are bad. I will not stay out of buildings full of art, and mystery and intrigue. I will not cover every lover in a list of rules and precautions.  

Life from here will be not a fight, but a long walk along a balance beam. There will be challenges to make me wobble. Shit, I may hit a few big enough to knock me down completely. But I will have the tools I need to get straight again… and they are just that: Tools. Antibiotics, herbs, mold tests, clean diets, cleansing detoxes, deep breaths, prayer, gratitude, meditation. Not an arsenal of weapons, but things to help me find my way back to center. I’ll use more when I need more, and less when I need less. And sure, living life on a balance beam may mean I walk a bit slower and more deliberately, but it also means I’m going to soak in every moment with a level of presence and awareness I’ve never had before. And gratitude.  

Bottom line is: I want I inhabit my life. I want to show up to every possible encounter on this beautiful blue dot with a heart that is open and curious about possibility. And the only way for me to do that is to drop the armor, spend time on my knees, and relinquish the notion that I am in control of any of this.  

I am not in control.

I am in constant danger, as much as I am in constant safety.

And my life is beautiful, exactly as it is. 

 

A NOTE TO READERS: My relationship with this blog, and my #KarlafightsLyme hashtag on Instagram has become a bit challenged. My initial intention was to record progress, to report monthly, to make an exact list of things I’ve done to get well, and to pull others along with me down the path to good. Things have changed inside me, and this entry is an attempt to convey that. My path is my own, and it isn’t going to have any big conclusion. I don’t want to measure it anymore, or really track it beyond what comes naturally to me. But my passion for connecting with others walking in these woods is very real. And I will always share any of my wisdom with those who seek it. I am hopeful this blog will remain a place of doing that, but I am unsure what form that will take as the old monthly updates no longer serve me. Please be patient as I move through this period of transformation. And if you have suggestions, requests or ways you find my entries helpful for you, please share! It would be really wonderful to lose the yardstick aspects of this space while keeping all the richness of connection.

 

All my love. 

-k