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On The Road Again...
Greetings from the shoulder of an unfamiliar highway, devoid of mile markers or speed limit signs, with exit signs barely legible due to a dense fog, and occasional rest-stops for me to refuel and share a cup of coffee with a few treasured souls to muse with about the journey ahead.
The Road goes ever on and on
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with eager feet,
Until it joins some larger way
Where many paths and errands meet.
And whither then? I cannot say.
~ JRR Tolkien
I first learned about bioelectronic medicine in 2014 when I saw an interview in the Huffington Post with Dr. Kevin Tracey — a neurosurgeon-turned-neuroscientist-guy who, at that point, I had never heard of before. Alongside the video, HuffPost shared an op-ed Dr. Tracey wrote called The Body Electric, which begins with a quote from Napoleon:
“A revolution can neither be made nor stopped.”
At the time, he was pulling from an excerpt of the longer quote, and I think he did so because he knew that before the public could realize the power of this revolution, first, there needed to be the context for the discovery – patients who have benefitted. In its entirety, Napoleon said, “A revolution can be neither made nor stopped. The only thing that can be done is for one of several of its children to give it a direction by dint of victories.”
By many dints of victories – as more patients benefit from this revolution, see their lives transformed, and tell their own stories of victory, we will, indeed, see it through to the other side: that glorious place where bioelectronic medicine is practiced every day in clinics and hospitals all over the world, no longer a revolution to be fought for, but a fact of life to be lived among.
And today, I come here to share that I am turning a new page — and with it, I will no longer be a consultant working in the field of bioelectronic medicine. I leave knowing that I have added many dints of my own over these last six years, and now, I am looking forward to the days ahead when more patients will continue adding their own dints of victory — which will never leave me with a dry eye as those stories are told.
Before I go further, I want to take a moment to thank my colleagues and the great friends I’ve made at the Feinstein Institutes and SetPoint Medical, and the many in the larger field who I’ve gotten to know over these years. The memories made will last a lifetime.
And my goodness — to say that it has been a hell of a ride is the understatement of the century. From presenting at the New York Academy of Sciences at 7 World Trade, the University Club, the BEM Symposium in Sweden, CitiField, Nashville, and countless others, as well as Zoom presentations for Cambridge, Berkeley, NIAS, and more, and two Washington DC trips — one to speak to the NY delegation and another to speak with Senator Cassidy — it’s been a journey, and an absolute privilege to support this field’s translation.
Along the way, I had no idea the forces I would be up against when I set off on this mission all those years ago, and the roadblocks that I thought I’d encounter ended up being mere speed-bumps compared to the actual roadblocks that came to light.
However, I can say with absolute certainty that I met those roadblocks with glorious gusto.
When I started in this role many moons ago, my mission was to get the word out to the public about the incredible science that is going to revolutionize medicine and allow patients to thrive, and to support the translation of this field from bench to bedside. My role was never meant to be a 30-year career — and I would be disappointed if it became one.
To paint a better picture of that mission, I’d like to share a story about my Aunt Ginny, who was the senior curator of MesoAmerican Art at the Los Angeles County Museum of Art (LACMA). One of eight Irish Catholic children hailing from Connecticut, later settling in New Jersey, Aunt Ginny was the oldest daughter of those eight. I always thought of Aunt Ginny as the ‘one who got away’ – the aunt who I didn’t know very well, as she lived on the opposite side of the country and we didn’t often get to see her, but I always ached to know her more – even more now, as an adult, appreciating her on a different landscape than I could during childhood. From my early days, though, I knew she was different than everyone – Aunt Ginny sparkled. What whites you could see of her tiny, squinted eyes shimmered against hazel irises, and she simply radiated all that I, as a child, imagined must be what is good and true about this world.
Aunt Ginny was diagnosed at four-years-old with type 1 diabetes, but it never became something that defined her life – I never knew her as ‘Fragile Aunt Ginny with crippling diabetes’ – I knew her as my aunt that sent the best Christmas and birthday presents – always scientific in nature, skeletons for us to take apart and put back together, or some kind of maps of the universe, or knick-knacks from her travels. I knew her as the aunt that, in a trip to see her and my Uncle David in the city one evening, wore ha-cha-cha leather pants that would have made my Irish Catholic grandmother immediately clutch her chest and gasp with a quiet, damning, Ginny!
When she died in 2011 at the age of 58, she was on a trip with my adoring Uncle David in Mexico City to prepare for her next exhibit at LACMA when her blood sugar dropped fatally low, and she passed away in her sleep in the very lands she had studied for decades. An expert of Mayan civilization, my aunt could have done anything – with a master’s degree in anthropology and archaeology and her Ph.D. in Latin American Studies, she was captivated by hieroglyphic writing, and became enraptured by the ancient and contemporary rituals and belief systems of the Maya.
I read an interview recently in Bomb Magazine where she was interviewed about her life’s work. My heart skipped a beat when I reached the part where she describes why she chose to work as a curator in a museum, rather than join many of her contemporaries in academia:
“I went into anthropology because it was a marvelous, eye-opening experience; I was learning about so many different people around the world and all the different ways they had of living in the world. But this great stuff that anthropologists, archaeologists, and historians have discovered is usually not accessible to the general public. The museum is the way to make that accessible. You can bring out ideas and objects and new ways of looking at them and engage the public in that way. That’s what it came down to, that context.”
Reading these words made me feel a cosmic connection to my aunt – this woman who, without explicitly doing so, modeled how to become so much more than the limitations that her disease would have liked to demand and mastered a field of study that captivated her so much so that she ached to make its great discoveries accessible to the greater public.
That’s the thing with great discoveries – often, they are kept for years and decades amongst the circles of academics who are already deeply ingrained and involved in the day-to-day of the work. The rest of us outside of those fields go about our daily lives, not knowing that the world has just advanced beneath our feet, whether it be through a new understanding of ancient, past historical texts and belief systems, or one of the eureka! moments that stand to transform the future of our very existence.
Now, the field of bioelectronic medicine is in the homestretch of its first major clinical milestone, as it will be — pending the outcome of the current phase three clinical trial — approved by the FDA for rheumatoid arthritis within the next year or so. And because of that, I’m delighted to be sitting here today to say: mission accomplished.
John McCain said it best —
“Nothing in life is more liberating than to fight for a cause larger than yourself, something that encompasses you but is not defined by your existence alone.”
It’s been a hell of a fight — and I wouldn’t have missed it for the world.
So what comes next?
Well, I am still working on getting my memoir The Road to Vagus published, and also starting its sequel, Lost to Follow Up. I’ll still publish essays here on The Wandering Nerve — sometimes related to bioelectronic medicine, and sometimes not. Wandering Nerve Radio will resume as well — production was paused temporarily due to life throwing unexpected wrenches in the routine, such as our 14 y/o dog-child tearing his ACL the week after the first episode was released. (The old boy is doing remarkable — shoutout to Animal Orthocare for Bee’s super cool ‘robot leg’ as our nephew calls it!) Anyway, I’ll be back at it sometime in the next few months, so stay tuned. Occasionally, you may still see me do a presentation or speaking engagement.
However, I will not be involved in the day-to-day work of bioelectronic medicine. I encourage patients who are interested in participating in clinical trials to reach out to the Feinstein Institutes or SetPoint Medical for more information regarding trials and/or questions regarding upcoming FDA approval, as I will not have those answers.
In the meantime, before I jump into something new, I’m taking a breather — enjoying the house and doing projects with my wildly awesome and devastatingly handsome husband, taking a writing/author branding class with the lovely Andrea Guevara, playing a lot more guitar and taking lessons with what has become one of my most-favorite-humans-ever (and also learning the art of songwriting!), spending time with friends and family, and overall, focusing on things that feed my soul while I figure the rest out and let the puzzle pieces fall where they may.
If you listened to the first episode of Wandering Nerve Radio, you know that I talk a lot about identity — and how wild it has been to experience life as I have, and find out who I am and what I am capable of on the other side of disease. For all these years since the Amsterdam clinical trial, I’ve spent my days getting my ‘story’ out there so that others can witness proof of life on the other side of disease — and now it’s time for me to stretch my soul more and find out what else I’ve got in there.
To wrap this up — I was recently listening to a Cody Jinks song called ‘Never Alone Always Lonely,’ and one of the lines in the chorus struck me — though I misheard the actual lyric.
I heard, “I’m in the fast lane of a slow-moving dream.”
And I thought to myself, Oh, hot damn, Cody Jinks — (the kind of name that silently demands to be said in full) — me, too.
Only thing is, when I looked up the lyrics, it’s actually: “On a fast train of a slow-moving dream.”
I was a little disappointed, because — and I say this lovingly, Sir Cody Jinks — I like my line better. However, I can see why he chose ‘fast train’ — I’m sure with his busy schedule of touring and managing his music as the most successful independent country artist out there today, his life probably does feel like a fast train — trains run on tracks with set destinations, and though he may not know exactly how many stops his train may make and how many delays there may be, he knows what his hustle entails, how it feeds his creative soul, and what is required of him to allow his creativity to not only fuel his spirit, but also put bread on his table.
I, on the other hand, am not on a train, as I still haven’t decided upon a destination — instead, I am driving in the fast lane, unbound by the certainty of tracks, and I am in control of where these wheels take me next.
Where that is — Christ, your guess is as good as mine.
But what I do know is that wherever it is, I’m on my way.
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