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I recall a line from Women Who Run With Wolves by Clarissa Pinkola Estes, “Look at your shoes, and be thankful they are plain…for one has to live very carefully if one’s shoes are too red.”
What that line meant to me when I was living on the streets in Hollywood, indulging in the seedy club scene in Portland, or espousing my theories on BDSM and spirituality in a greasy 24-hour diner in Seattle is world’s away from what it means to me now as I measure a cup of hemp milk and pour it into a blender, taking deep breaths (in through the nose and out through the mouth to the count of four…five…six)—a tablespoon of coconut oil, two of plain Greek yogurt, a teaspoon of chia seeds, several alarms on my phone to remind me to take my medication, and alarms after the alarms just to make sure I did.
Living carefully is my religion now.
I’m not sure if my shoes are too red; I just know they can’t be too high because I’m already a fall-risk in flats.
I’m in a different universe now—one I was blissfully ignorant of for 34 years, though if I had been properly diagnosed before my brain spontaneously hemorrhaged, it would surely be the only one I knew.
It’s a world known only to the chronically ill, and as I’m further initiated into this world six years after I discover that I have Temporal Lobe Epilepsy due to a rare genetic mutation as well as generalized epilepsy which causes Tonic-Clonic/Grand Mal seizures, I also learn that countless other people with epilepsy have been inhabiting this austere sphere of near-flawless self-control the whole time I was dancing on slippery bars, taking impromptu red-eye flights, and gorging myself on PBR and trendy cupcakes. The whole time I was “living.”
As far as I knew, there was only one way to Carpe Diem because “YOLO!” And that way was boldly, spontaneously, and more than a touch irresponsibly, but when the day seized me, my previous understanding of freedom died. During the grieving for my pre-epilepsy life process, which still ebbs and flows to varying degrees, a new sense of freedom revealed itself in unlikely ways.
I revisit my philosophies on BDSM and spirituality, particularly the discipline part. I lean into my yoga practices. I synchronize my internal clock with the circadian rhythm and go through my own lipid panels and medication levels with a fine tooth comb. I help others in my epilepsy groups investigate the possible culprits of a breakthrough seizure; sodium too low? Citrus too high? Fever? Glucose? Sage, cedar, spike lavender? Barometric pressure?
We analyze the side effects of various medications and medications combined with other medications and exact doses subtracted or added to the mix.
I know exactly how many hours I slept last night and which yin yoga routine helps shift me out of my sympathetic nervous systems fight/flight response versus which breathwork sessions elevated my heart rate.
I break down sobbing in child’s pose. I calculate the risks versus rewards of everything I do—from a five-mile, high-elevation hike to a short stroll to the UPS store.
With one violent electric shock to my entire body almost six years ago, I was catapulted into a completely different narrative. One that I vehemently denied and resisted initially, and then tolerated begrudgingly, and then outright foolishly rejected, and again, tenderly picked back up, dusting it off, and holding it to my heart in a final show of acceptance and peace.
Regardless of the color of my shoes, the day of the week, or the way the world beyond my brain and the people in it turns, I have to live, carefully.
Yet, living it still is just different than the grandiose adventures and romantic stories I’d imagined.
I will not be hiking the Pacific Crest Trail alone nor will I be “eating, praying, and loving” carbohydrates in Italy or anywhere else. This is my path. My ashram is here, in my home, and anywhere else I go—training my body to breathe through the dreadfully surreal symptoms of seizures that are controlled but not cured by medication.
Adapting to the strict ketogenic diet my epilepsy specialist put me on until I literally started craving avocado-cacao smoothies instead of double-chocolate chunk ice cream. Living in the moment because my epilepsy has left me little choice in the matter. A seizure can appear in a flash without rhyme or reason and lift up the temple that is my body like a tornado before spinning it around and letting it crash back down to its new earth, hopefully with the lights still on.
I’m dead; I’m alive. I died with every seizure and surprisingly woke up gasping for air, again. I get comfortable with death, I visit The Death Cafe and lay in savasana corpse pose in a floatation tank my doctor hesitantly cleared me to try out.
I leave the door to the pod open in case I need to yell for help.
I close it and die. I breathe through the sensations both familiar and foreign, aware of every thought, flutter and feeling that slides through me.
I might die because I have epilepsy!
I will die because I’m human.
But first I shall live, carefully, calmly, occasionally serenely, designing my self-care routines with surgical precision. Learning to tune into my body with pristine clarity. Allowing my relationships to grow both deeper and richer when I actually stick around to experience them in their full, mundane, mortal glory. No longer defining freedom by my ability to be carefree but within my unfolding practice of living with great intention and care.