Chapters Nineteen and Twenty
By Many Dints of Victory
Public Health: “the science of protecting and improving the health of people and their communities.” [CDC]
What we have in the United States of America is not public health, it is sick care sponsored by corporate welfare. Current regulations do more to protect corporate interests than they do to benefit patient health, and that needs to change. Patients are kept on their hands and knees while the top 1% stands on their backs, celebrating themselves at their Masters of the Universe events.
If we really want to protect and improve the lives of the people in this country, we need to cut red tape that stagnates translational research from bench to bedside, advance access to clinical trials, and expedite FDA approval following successful phase three trials. We need more funding for clinical trials for novel therapies so that promising new therapies that will benefit millions of patients don’t get trapped in the ‘Valley of Death’ due to lack of funding.
Further, we need to be regulating pharmaceutical companies by making it illegal to withhold access to drugs that are FDA approved that they hide in their portfolios. It is currently legal for them to do this, and they take advantage of it because the more effective therapies out there will hurt their bottom line, and their bread will be less buttered, as biologics bring in the big bucks. It is more advantageous for their wallets if they simply repurpose expensive and ineffective drugs already in their wheel well for more disease indications. A healthy patient is a customer lost.
According to the Rand Corporation, nearly 60% of Americans have at least one chronic condition, 42% have more than one, and 12% of adults had 5 or more chronic conditions. Worldwide, chronic inflammatory diseases like stroke, chronic respiratory diseases, heart disorders, cancer, obesity, and diabetes kill three out of every five people.
Vagus nerve stimulation has been approved since the late 1990s for epilepsy and then drug-refractory depression, and more than 100,000 people have been implanted with vagus nerve stimulators. Their safety profile is overwhelmingly positive.
Dr. Tracey published ‘The Inflammatory Reflex’ in 2002 and it has taken this long to push the needle as far as he has, and that isn’t for a lack of pushing. According to the bipartisan group Open Secrets of the Center for Responsive Politics, in 2020 alone, drug makers spent $312 million lobbying Congress, and there are 3 pharmaceutical lobbyists for every member of Congress.
Why’s it so hard to get this over the finish line?
You do the math.
By Dints of Victory
My Aunt Ginny 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 somehow, 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, one of the only times when we saw her away from the normal family parties when they were visiting, wore ha-cha-cha leather pants that would have made my Irish Catholic grandmother, her mother, 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 dangerously 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 from Bomb Magazine, where Aunt Ginny 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 in doing so, 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.
I’ve always felt that to get where we’re going, we have got to know where we’ve been. It is why I am so deeply embedded in attempting to understand my family’s own lineage and history, the people who I come from – their successes, their mistakes, their loves, their heartbreak – because all those puzzle pieces came together to bring me to this moment here today. Change one component of any of those puzzle pieces and the present falls apart – it is no longer the today that we know at this moment, but a different day that exists on a parallel plane.
As I read those words from my aunt about why she went into educating the public by curating exhibits on Mesoamerican art to make discoveries accessible to the people of Los Angeles, including the Mexican youth of LA who she so deeply cared to provide context to their own lineage, it struck me why I live and breathe the field of which I am an autodidact student of – the field that has transformed my very own existence.
In his op-ed The Body Electric, Dr. Kevin Tracey begins with a quote from Napoleon:
“A revolution can neither be made nor stopped.”
Dr. Tracey knows a thing or two about revolutions. Having been a child during the launch of Sputnik, kicking off America’s great investment in science that led to the men of the Apollo mission landing on the moon less than a decade later (of which my Aunt Norma developed and tested the rocket fuel for), Dr. Tracey went on to spend three decades uncovering the fundamental mechanisms of inflammation, and in doing so, founded two revolutions that have altered the treatment of inflammatory diseases over the last thirty years: first, identifying TNF as the key accelerant of inflammation, the cause of the genesis of disease and the determinant of its lethality, followed by the development of monoclonal anti-TNF, leading to the drugs we all know today as Remicade, Humira, Enbrel, and more. This led to the discovery of the vagus nerve as what Dr. Tracey coined the inflammatory reflex. As a neurosurgeon who understands the importance of functioning reflexes in the determining of health, his finding that the vagus nerve acts as a reflex, modulating inflammation between the immune system and the brain, is groundbreaking.
This revolutionary field brings me as much peace as I sit here at my kitchen table, looking out the kitchen window to a bright autumn day, watching the first leaves fall on my sprawling lawn; it is like a rock song I can’t stop listening to, cranking up the stereo of my car with the windows down on a bright, crisp, blue-skied day, driving down country roads; and at the same time, is the loneliest place I have ever been because here I sit, feeling it so deeply, yet so very alone – no longer really a patient, not a scientist, sitting quietly with the revolution inside my very chest and my neck.
There are more out like there like me – a hundred or more patients of vagus nerve stimulation trials who have seen their lives transformed by this revolutionary field, but as anyone can understand, have gone on with their lives – doing the things that they love, and like me, climbing mountains that they couldn’t have fathomed before. I think about them every day and where they are, scattered around the globe, and I smile thinking of how much I know their lives and mine are intertwined in the fundamental knowledge and seminal personal experience of knowing not only what the future looks like, but what it feels like.
It is because of that feeling combined with my adoration of understanding the history of where we’ve been, and my desire to understand the interdisciplinary marriage of how countless ideas and fields intersect (what Maria Popova calls figuring) to become the very existence we live among – and the earth-shattering discoveries that shake the foundation of what we once thought to be true.
When I came home from Amsterdam, I couldn’t stop putting the puzzle pieces together of the science that led to me feeling this way today – and now, four years later, the basic foundation of that research outlines the beginning of every chapter of this memoir because I have had this crazy idea that if the general public grappled with the history of the science that has led to this revolution, that perhaps, we could come together to see this thing through sooner than later, witnessing people who are still suffering today from the debilitating pain of countless inflammatory diseases, suddenly experience the awe and thrill of what it feels like when inflammation recedes, and pain vanishes, and then rebuild their lives that overflow with abundance, peace, potential, and infinity.
As I’ve said, to get where we’re going, we have to know where we’ve been – but to do so requires active participation on our part: we have to know the history itself, and that will allow us to more evaluate the progress of where we are today, the milestones that have already been reached and the time period by which that has occurred. Only then can we see the promise of where we are going – but only if we are, indeed, brave enough to do the work to get there.
Treating disease using biologics was never meant to be the final destination in the treatment of disease, but instead, acts as scaffolding, building toward the better, more durable therapies that will be outlasting, and ever-evolving.
My first day working at the Feinstein Institutes for Medical Research was on January 22, 2019.
That morning I was up at 4:30, out the door at 5:30, and in the lobby of Feinstein at 7:30. Jon’s executive assistant, Laurie, met me there and brought me up to my office – steps away from Dr. Tracey’s. I got myself unpacked and looked out into the hallway, right where I had stood with the team, and said ‘Goodbye’ on our first meeting more than a year earlier – not knowing what awaited in the door I stood beside at that time.
People began to shuffle in, and soon, Jon walked by in his signature baseball cap and backpack, turned to look in my door, and said, “Good” and kept walking, in his typical walk like-a-boss Jon fashion.
We hit the ground running: there was a backlog of hundreds of patient emails to respond to. At the time, there were about 300 patients in the database (myself included – twice) and hundreds to catch up on – all patients who had heard about bioelectronic medicine and wanted to sign up to be in clinical trials for it. The people we heard from sounded like me, and that made my heartache. At the time, we didn’t have a clinical trial available, but I continued to let whoever reached out know that would change and to hang onto hope, giving them resources to learn more about bioelectronic medicine and the promise that the future holds.
Still, some days, I get an email that punches me right in the gut and leaves me staring at the screen, wondering how to respond – what do you begin to say to a mother who has an eight-year-old with severe Crohn’s and the beginnings of osteopenia from malnutrition and prednisone-dependency? How do you respond to a woman not much younger than me who is being told it’s time to remove her colon, but she’s holding onto one last hope that maybe she could get an implant too? What do you say to the 85-pound, 6’2 grown man that is emailing you from the toilet and has a feeding tube in, while his brother sends a separate email and says may not survive another six months? It hurts to the depths of my soul, and most of the time, if my office door is shut, I am in there needing a minute to collect myself from reading a particularly painful one.
Connecting with patients from all over the world has given me a unique insight into the global crises of healthcare. I’ve heard from patients in other countries with universal healthcare that they are only allowed to try three biologics and if those don’t work, batter out, baby. Some of those countries do offer a private insurance option, but it’s still not affordable enough for the people I’ve spoken to – so they suffer.
When healthcare is discussed in the media, it’s often focused on policies, premiums, and reform. What it misses, however, are the numbers: the number of Americans suffering from a form of arthritis (more than forty million, including a quarter of a million children), the number suffering from inflammatory bowel disease (more than three million), the number suffering from lupus (more than 1.5 million).
In America, despite having the most expensive healthcare in the world, obtaining care – and prescriptions – is an ongoing uphill battle. Insurance companies deny prescriptions, doctors, patients, and caregivers fight it through the appeals process, and then the insurance company may eventually agree to cover it, but then the insurance company nurse calls and pester the caregiver or patient with questions about care, looking for loopholes to deny the next refill.
One woman I know is the mother of a son with Crohn’s and epilepsy, and she answered the phone one day to a Blue Cross Blue Shield nurse who asked what else could be done to support her son in his ongoing care – an ironic question since BCBS just denied his infusion the previous week. The mother said, “You could begin to support his care by telling your company to stop denying his medication.”
The nurse hung up the phone.
Patients and caregivers are stretched too thin between fighting appeals, going to appointments, getting infusions, dealing with side effects, and oftentimes, missing work because of it – or not being able to work at all.
As a patient who has been through these very same things, I am able to see firsthand how bioelectronic medicine will transform every aspect of healthcare. Not only will countless patients be able to thrive, sans the debilitating side effects of immunosuppressants and biologics, but these kinds of battles with insurance companies will be a thing of the past – and in doing so, it will also bend the cost curve of healthcare while expanding the middle class by allowing formerly disabled people to work. Isn’t that a crazy sentiment to think about, given the status of healthcare today – to become formerly disabled? To be able to hold down a normal job and not have to wonder if side effects, disease activity, doctors’ appointments, or infusions are going to prevent people from being able to fulfill the duties of that position? That’s all patients truly want out of this life – normalcy. They want to get up, have their coffee, go to work, and interact with the world. They don’t want to be trapped in bed, on the phone with providers and insurance companies, feeling sick all the time despite the medication that is supposed to improve their symptoms – but oftentimes, doesn’t.
Bioelectronic medicine stands to allow patients the right to a life without the weekly or monthly almighty dollar sign hanging over their head – and the right to thrive.
What would our world, and healthcare landscape, look like if, suddenly, we had a population of healthy people?
Mark Twain once wrote, “Life would be infinitely happier if we could only be born at the age of eighty and gradually approach eighteen.” When I first read this quote, I laughed because it was the perfect way to explain what it feels like to go from having a crippling inflammatory disease to suddenly being able to thrive as a result of bioelectronic medicine. I call it ‘The Benjamin Button Effect.’
Now multiply this experience by millions of other patients who should have the right to access novel and revolutionary therapies like vagus nerve stimulation.
To allow that to happen, at Feinstein, we began to carve out a plan to spread the word about bioelectronic medicine: to doctors and those with a stake in healthcare, patient foundations, and government officials.
My first mistake was thinking how excited everyone would be about it. I knew pharma wouldn’t, of course, but I thought the medical community and patient foundations would be.
(Isn’t better care kinda implied as part of the Hippocratic Oath?)
In the spring, I attended a healthcare conference alongside our Feinstein team. The goal of the conference was to bring together doctors, researchers, entrepreneurs, investors, pharmaceutical executives, and insurance providers to spend a day discussing what’s new in healthcare and how to break down ‘silos’ to bring all of these different sectors together to work toward the common good of the patient.
Dr. Tracey would be one of the speakers that day. When it came time for his presentation, he discussed the importance of how far pharmaceuticals have brought us in the last century: He shared how 109 billion people have been born since 50,000 BC, and that 80 billion of them died from infection – but thanks to vaccines and antibiotics, infection has largely been eradicated as a cause of death. He went on to say that our modern-day maladies all stem from inflammation: diabetes, rheumatoid arthritis, Crohn’s, multiple sclerosis, heart disease, and even depression, among a multitude of others. He shared that while biologics have been an important stepping-stone in the fight against inflammatory diseases, they aren’t enough, and many patients don’t benefit from them. He then shared my story: 22+ failed medications, 15 years of active disease, a million of dollars spent on care, all without relief – to then sharing where I was at that point, 18 months out from my vagus nerve implant, in remission, thriving – and his favorite part – “and we hired her.”
He went on to explain the science of bioelectronic medicine and how it works to bring the body into a state of homeostasis rather than immunosuppression. In his presentation, he spoke of how the classic modality of treating illness in the last 100 years has been to identify a target and create a molecule to destroy that target (think antibiotics destroying infection, chemotherapy destroying cancer cells, etc). He said that using molecules to treat disease has been the approach for the last century, but that it’s time to evolve to a new way of thinking about disease.
During his presentation, I beamed as he shared this important work and found myself getting teary-eyed, knowing how many millions with inflammatory diseases will benefit from vagus nerve stimulation as much as I have. What continues to astound me is Dr. Tracey’s ability to present such complicated science and do so in such an engaging way – his presentations are truly something to behold. As a very youthful Vagus Nerve Girl in those early days, I thought everyone was as excited by this research and as super-charged to change the world after watching his presentations as I was. After all, what kind of asshole would someone have to be to feel any other way after learning about this?
Well, in the last four years, I’ve been humbled, because I have met a lot of those assholes.
But we’ll just focus on that one conference for now.
Later that afternoon, the conference broke into smaller table sessions. I sat down at table ten, an eight-foot round at the back of the room with a sign on it titled ‘Human-Centered Experience,’ which I chose because that is basically what my job is focused on: patient advocacy, government education efforts, and patient foundation outreach.
As I sat there and more people began filtering into the room after lunch, I saw two gentlemen survey the tables, trying to decide which to choose. Then they saw me. We made eye contact, I smiled at them, they did not smile back, and they sat down directly across from me.
The head of the table got things started by saying, "Ok everyone, introduce yourselves and share why you chose this table for the Human-Centered Experience."
One of those gentlemen was one of the first to introduce himself. Never breaking eye contact with me, ten of us at the table listened as his eyes bore into mine his discontent with one of the many presentations of the day, and how “though Dr. Tracey may say that molecules and targets don’t always work, they often do, even though that hasn’t been the case for you.”
He went on to say that he has spent his career developing molecules for certain targets and that is why he chose this table – because his work has mattered for many patients.
I smiled and kept eye contact with him throughout his entire ego-laden spiel, nodding along, letting him think that he showed me. And then it was my turn. I introduced myself, made eye contact with everyone at the table, including him on multiple occasions, and let him know that my job is to ensure that the research coming out of our institutes is made available to patients who, like me, need alternatives to what’s currently available – and then I stacked up the facts by citing the statistics: more than one-third of patients don’t respond to biologics and immunosuppressants, and then are faced with not only the symptoms of their disease but also the side effects of these drugs, which personally made me feel like a nuclear power plant.
I then cited the financial pitfalls of the status quo and how in 2013 alone, rheumatoid arthritis cost our economy 304 billion, as well as the indirect cost patients with rheumatoid arthritis face every year of 252 million due to work absenteeism. Not to mention the 43% of patients who can’t afford their prescriptions, and the 9% that go without their drugs because of the cost. I ended by saying that’s why I’m at this table – the Human-Centered Experience – because my experience as a patient has informed me that patients need more options to improve their quality of life and reach the human potential that many of them can’t due to their only current treatment options being expensive and often ineffective molecules.
As you can imagine, I didn’t make a new friend that day. I wish I could say that this was an isolated experience, but it wasn’t. Over the last four years, I’ve lost count of the number of people who have argued that current treatment options are good enough and/or suggested that I am only the placebo effect.
When I came back from Amsterdam, my rheumatologist said not to get too excited yet – this may, after all, just be the placebo effect. In a professional setting, I heard a scientist telling someone that Dr. Tracey’s discovery of the connection between the nervous system and the immune system hasn’t convinced her and that those who have benefitted are an extraordinary example of how strong the placebo effect is. At a friend’s birthday party, while standing at the bar at our local hole-in-the-wall tavern, a mutual friend who works in pharmaceuticals grilled me for nearly ninety minutes, saying that if this really worked, why hadn’t he heard about it on Good Morning America yet? Must be the placebo effect.
While I understand that this is a revolutionary concept and will take time to fully understand and adjust, I find it problematic that a medical professional, scientist, or pharmaceutical exec would be so dismissive of discovery.
Prior to human trials, investigators tested vagus nerve stimulation in vitro and in vivo, meaning that it was tested outside of a living organism (in vitro) and then in animal models (in vivo). In test tubes of blood, after vagus nerve stimulation, TNF in the test tubes dropped. It was then tested in trial patients under anesthesia, who were obviously unconscious and unable to determine their own outcomes. In those studies, the sham control groups did not see their inflammatory levels drop, but those receiving vagus nerve stimulation did.
Hell of a placebo effect if you ask me.
While everyone is entitled to their own opinions, they are not entitled to their own facts. However, we live in an era that is constantly at war with facts.
With the work that is being done to spread the word on the promise of bioelectronic medicine, we aren’t selling a product for a pharmaceutical company. Instead, this is the forefront of an entirely new framework for how society understands and treats disease. This is the new frontier. I want doctors to practice science when they are practicing medicine, not practice the art of pharmaceutical distribution by means of elimination.
In his Ted Talk, world-renowned physician-scientist Siddhartha Murkhegee said, “When an architect builds a model, he or she is trying to show you the world in miniature. But when a scientist builds you a model, he or she is trying to show you the world in metaphor. He or she is trying to create a new way of seeing. The former is a scale shift, the latter is a perceptual shift. Antibiotics created such a perceptual shift in our way of thinking about medicine that it really colored, and distorted, very successfully, the way we thought about medicine for the last 100 years. But we need new models to think about medicine in the future — that’s what’s at stake. There’s a popular trope out there that the reason we haven’t had a transformative impact on the treatment of illness is because we don’t have powerful enough drugs, and that’s partly true. But perhaps the real reason is that we don’t have powerful enough ways of thinking about medicines. It’s certainly true that it would be lovely to have new medicines but perhaps what’s really at stake are three more intangible M’s: mechanisms, models, metaphors.”
Once upon a time, in a different life as an English teacher on the other side of the world in the middle of the Pacific, I used to tell my students that the most dangerous sentence in the English language is
“… but we’ve always done it this way.”
I had no idea that years later, I’d be up against that very sentence against some of the loudest and most powerful voices in healthcare – but here we are, and the reason those voices are so loud isn’t that they are right, it’s because they are scared – and they’ve got a lot of money at stake to protect the status quo.
The point should never be to prescribe current medicine as dogma, but instead, as an ever-evolving series of discoveries that improve the lives of people. It’s troubling to me that scientific research that disrupts the status quo is resisted rather than further met with exploration and curiosity, and eventually, celebrated – because the point of isn’t for the dogma or the dollar sign, but instead, for the good of the patient.
For the first seven months that I worked at Feinstein, we still lived in New Jersey, so I was commuting about 140 miles roundtrip per day. I’d usually get home sometime around 8 at night and find that Sean’s contribution to dinner was preheating the oven to 425 degrees.
The instinctual part of me wanted to say, ‘I’m going to smother you with a pillow tonight while you sleep’ (married couples will understand), but the elderly part of me said, ‘Wow, what a wonderful, normal, age-appropriate complaint.’
Then I would smile, and we cooked dinner (I cooked, he watched, and said he was “taking mental notes”), and we talked about our day, which never included talking about me not being able to dress myself, or not being able to walk, or what part of my body hurt the most, or what the doctor said, or what specialist I have to see. In those now ordinary moments of preheating the oven and cooking dinner, I remembered the man that put my deodorant on for me when I couldn’t, and put my socks on and tied my shoes, and asked questions at doctor’s appointments, and kept me entertained during infusions, and carried me through the streets when I could no longer walk for that day and held my hand in the middle of the night when I sobbed from the pain that radiated and ravaged me from head to toe.
And then I think, God I’m so glad he preheated the oven.
The Jimmy Fund
Soon, we were engaging with patient foundations.
At the time, Feinstein didn’t have a liaison between themselves and foundations, so I filled that role. I reached out to multiple patient foundations and introduced both myself and the Feinstein Institutes.
I began to study the structure of foundations and found great differences in foundations that functioned successfully and represented the best interests of the patient, versus foundations that are strictly operating as a business.
The Lupus Foundation is an excellent example of a foundation that rallies together through advocacy work in Washington to increase NIH funding for research as well as empower patients through a gritty and solution-focused community. Over the last five years, the Lupus Foundation has managed to secure 550 million federal research dollars for lupus and has advocated for annual increases to the NIH budget while securing 106 million earmarked for lupus research. Further, their 2018 patient summit on Capitol Hill brought more than 350 lupus patients to speak to their congressional representatives, and in doing so, secured 19 million more for lupus research.
What’s more, the Autoimmune Association supports an ongoing effort to engage with researchers in academia and industry to explore novel therapies and give those new startups a voice to speak directly to patients about the future of healthcare.
Those are examples of how a patient foundation should function.
Sadly, I’ve found that these are diamonds in the rough and set the bar quite high.
In a meeting with another patient foundation, I sat around a table in one of our conference rooms, steps away from our bioelectronic labs, with our team on one side and their representatives on the other side. Dr. Tracey, a couple of Feinstein’s top scientists and engineers working on bioelectronic medicine, and I presented the work that is happening and the results so far.
The foundation’s representatives sat across the table, apathetic. They shared with us a few different grants that we could apply for but suggested that those particular grants wouldn’t be easy for us to get. Dr. Tracey asked them, “If we partnered together, what would your dream headline be in five years from now in a press release of what we’ve accomplished together?”
They fuddled in their seats, looked at each other nervously, fidgeted and played with their hands, and all came up with the same general headline: “Finding new genes or targets of disease.”
I looked at Dr. Tracey and back at them, and thought to myself, wow – dare to dream big, you guys.
And then I wrote down on my notepad:
“Amid Millions with Inflammatory Diseases Now in Remission Due to Bioelectronic Medicine and the Economy Thriving with a Healthy Population, Drug Prices and Health Insurance Premiums Plummet.”
Yeah, a little wordy, but I’m pretty sure that was a better answer than finding “new genes or targets.”
That May, I attended a different foundation’s “Walk for the Cure.” I worked a table to represent the Feinstein Institutes, sharing with patients the exciting research coming out of our labs. From across the table, people shared their stories with me, but two stood out that stayed with me for days after.
The first was a young mother, not much older than me. I shared with her the research on the vagus nerve and bioelectronic medicine, and she listened intently. I asked who she was here supporting today, and she turned and pointed to a two-year-old smiling little girl, playing a few feet away with her older brother and dad. She picked her up and brought her over and told me how this perfect little girl currently has major swelling in her knee and ankle and struggles to get around.
Nevertheless, the little girl beamed, and I thought of how painful I know that swelling is and how this toddler was among the happiest of toddlers I had ever met. She reminded me of Claire, the daughter of one of my dearest friends on the planet, Nicole. Claire is a warrior and the sweetest little girl I’ve ever known. She was born with a congenital heart defect and chromosomal deletion syndrome.
I met Nicole when she showed up one day with her two beautiful boys to buy a bookshelf I was selling. In the years that followed, she and I watched Gone Girl at Dole Cannery with our hands covering our faces, peeking out through our fingers, spent many evenings talking about politics and philosophy (as she was a history and political science major, and was Navy veteran, retiring as a damage controlman), and since those days, we’ve grown even closer as life does that when you live through it together. She and I have seen each other through days that aren’t the norm for women our age. She now lives in San Francisco with her three beautiful children.
When we visited them in San Francisco in 2018, Claire was about three. We went to watch the Navy’s Blue Angels show from a park above the city overlooking the Golden Gate Bridge. Claire sat in the grass, feeling the greenery in her little fingers, observing it. After a little while, she smiled and jumped up and chased after her older brothers who were playing football.
While at the ‘Walk for the Cure’ event for this particular patient foundation, I thought about Claire when I saw this happy little girl, and it occurred to me that when a person knows pain so intimately at such a young age, somehow, everything lovely they encounter is a little sweeter — and I imagine that is the case for her, this little warrior girl with juvenile arthritis, who walked gingerly on legs that struggled to support her, and yet, she smiled anyway. I remembered those days, and the familiarity of living in her bones stung.
The other lovely individual I met was so familiar that I could have been looking at myself in her shoes prior to vagus nerve stimulation. She and I share the same diagnosis, Crohn’s with inflammatory arthritis. I asked where her inflammatory arthritis affected her and she said, “Oh, everywhere. From my jaw to my toes,” just as mine did. We shared stories of what that feels like, as her black cane’s handle rested on her forearm, and she held her hands close to her chest, lightly, as I remember doing when my hands hurt like that. At one point she said to me that she’d “been on everything under the sun” which is a phrase I use as well to describe all the medications I have taken over the years, and she lit up as I described to her what the vagus nerve is and how electrically stimulating it combats inflammation. In the end, she held her hand out lightly for me to shake it, which I did gently.
As the event winded down, I made plans to meet with this foundation’s representatives in the city. Over the months that followed, we exchanged emails and I met with them for lunch to discuss the research happening at Feinstein. As time went on, I attended more of their events and found a business model that appeared to peddle patients for cash.
That September, Sean and I were invited to be guests at an event in the city that was titled ‘Commitment to the Cure.’ We attended and found that throughout the entire night, current research wasn’t mentioned, and the professionals that were ‘honored’ that night weren’t even working in research. I sat next to a woman who shared with me how she suffers from rheumatoid arthritis, ankylosing spondylitis, ulcerative colitis, sleep apnea, asthma, and now autoimmune hepatitis, and that her doctors shared with her that she may only have five to ten years to live with her current available treatments, which she is failing, and is without other options at this point. Her family was in attendance with her, along with her teenage son who is also suffering from rheumatoid arthritis.
The mother and son took to the stage halfway through the night to share their story and present an award to the next honoree, who touted his accomplishments – namely, how successful current treatment options have been. All the while, the mother and her son who handed him his plaque and flowers struggled to stand on the stage.
Weeks later, that same foundation asked me if there was anyone that I’d like to nominate to be an honoree at a ‘Women’s Luncheon’ in the spring. I asked what the qualifications are for being honored, expecting an answer like ‘excellence in patient care’ or ‘advancements in research,’ but the director of the foundation told me that it was the “person’s ability to raise $25,000 in sponsorships for the event.”
I told her I’d have to think about it.
While thinking about it, I thought about The Jimmy Fund.
On January 12th, 1951, Dr. Sidney Farber spoke at the New York Academy of Medicine to give a talk about how cancer care had entered the era of chemotherapy, which he is considered the father of. Instead of basking in the glory of his contribution to this research, he focused on the mission: how contributions made over the centuries, and from a variety of disciplines, led to the success rates of the time.
“Our discussion tonight is based upon research – most of it no older than 10 years, and as recent as this moment. But it is only the breakthrough which has come in these last few years. What has been accomplished is based clearly upon contributions, made through the centuries and from a variety of disciplines, by individuals and institutions scattered over the world.”
He went on to make a point to note that we have further to go.
“All anti-cancer effects produced by chemical compounds are temporary in man,” he says, “with effects lasting from weeks to months – and only occasionally for periods as long as six years.”
As a physician-scientist, Dr. Farber knew that surgery and radiation were not successful in blood cancers like leukemia and lymphoma. At the time, doctors knew that those cancers were caused by immature white blood cells that began in the bone marrow and crowded out healthy white cells – making it impossible for patients to fight disease. Dr. Farber hypothesized that if folic acid was blocked (which he knew stimulated the bone marrow), that could prevent the blasts of immature white blood cells from invading, and therefore, stop blood cancers from becoming fatal. He went on to conduct a trial of sixteen children using the drug aminopterin, known for its folic-acid blocking ability. Ten of the sixteen went into temporary remission.
In that same year, Dr. Farber established the Children’s Cancer Research Institute (now known as the Dana-Farber Cancer Institute). He knew that medical research needed better funding, and to do so required better publicity to highlight the necessity of research.
Enter Einar Gustafson, or ‘Jimmy’ as he became known: a 12-year-old boy with non-Hodgkin’s lymphoma. At the time, cure rates were between twenty to thirty percent – now, they stand at ninety percent, thanks to investments in research. The Variety Club of New England was an early supporter of Dr. Farber’s mission and put together a revolutionary method of raising money for cancer research: they had a well-known radio personality, Ralph Edwards, broadcast directly from ‘Jimmy’s’ hospital bed to let the nation know of Jimmy’s one request: a TV set to watch the Boston Braves while he was stuck in the hospital. Little did he know that soon, one by one, the Braves would be piling into the hospital room to surprise their young fan. Ralph Edwards let the nation know: if we raise $20,000 for cancer research, Jimmy gets his TV set to root for the Braves while we all root for Jimmy.
The funding poured in, and within a year, what became known as ‘The Jimmy Fund’ raised $231,485.51 for cancer research. To date, The Jimmy Fund has raised 150 million, which has funded significant research in chemotherapy for children and reduced the death rate of some childhood cancers from 90% to 10%.
Thus, began the ‘boom’ of patient foundations born in the 20th century.
Ribbons, walks for the cure, galas: all opportunities to market different diseases to raise funds for research.
But how much of that funding actually goes to new research? And who, exactly, is contributing to the patient foundations?
According to Kaiser Health News, drug-makers gave more than 58 million to patient foundation groups in 2015 alone, as reported by financial disclosures in KHN’s ‘Pre$cription for Power’ database. The database’s purpose is to “track the little-publicized ties between patient advocacy groups and drug-makers.” KHN then poses the question: are patient organizations pushed to put the interest of Big Pharma ahead of the patients they represent?
Which leads to the greater question: is investing in research to cure disease still the mission?
In 2015, the American Diabetes Association received $4,100,456 from pharmaceutical companies, and that year, their overall revenue was $180,803,003.
That year, the ADA gave $36 million in grants – almost all of which ($35.7 million) went to the Diabetes Association Research Foundation, which distributed .83 cents on the dollar ($29.6 million).
The maker of Humalog, Eli Lilly, gave $2.9 million to the ADA that year. In the last twenty years, Eli Lilly has hiked the price of Humalog 30 times, according to IBM Watson Health.
Johns Hopkins Bloomberg School of Public Health and West Health Policy Center found that Big Pharma would” still be the most profitable industry sector” even if it lost $1 trillion in sales. The anti-inflammatory market alone is a 100-billion-dollar industry.
The argument from patient foundations as well as patient advocates who defend the interests of Big Pharma state that these companies need massive profits for research and development. Unfortunately, many of those companies spend around $50 billion more on stock buybacks than they do on research – and the beneficiaries of those buybacks are executives who are given thousands of shares of stocks on top of millions in compensation. Meanwhile, in 2020, drug makers spent $312 million lobbying Congress, and there are 3 pharmaceutical lobbyists for every member of Congress.
Further, for every dollar that those companies spend on research and development, they spend nineteen dollars on marketing through direct-to-consumer commercials in both America and New Zealand. The pharmaceutical giant Abbvie spent $439 million on Humira commercials in 2016, and what’s more, drug advertisements are a tax write-off for pharmaceutical companies – so it didn’t actually cost them a dime.
So, is there a market for the cure to co-exist in the profitable world of disease?
It likely boils down to the same problem we now face with the lack of research into newer, more effective antibiotics. The CDC recently reported that every fifteen minutes, one person in the US dies from an infection that antibiotics can no longer treat effectively – which is 35,000 deaths per year. Drug resistance is a global crisis, but unfortunately, not profitable: Kevin Outterson, a Boston University professor specializing in antibiotic resistance recently told Sigal Samuel in his reporting for Vox that: “This is a product where we want to sell as little as possible,” Outterson explained. “The ideal would be an amazing antibiotic that just sits on a shelf for decades, waiting for when we need it. That’s great for public health, but it’s a freaking disaster for a company.”
For Big Pharma, cures aren’t profitable, and their grip on patient foundations is strong. Most of the events held by patient foundations are sponsored by pharmaceutical companies. That ‘Commitment to the Cure’ gala that Sean and I attended was sponsored heavily by Pfizer, the maker of the “biosimilar” to Remicade, known as infliximab, and newly approved Inflectra, which is used to treat multiple inflammatory diseases at the cost of thousands of dollars per month per patient.
Having pharmaceutical companies sponsor patient foundation events for “the cure” discourages market disruption, and the cure to a disease that rakes billions of dollars in for those same pharmaceutical companies is, indeed, a disruption. The cure should always be disruptive to the status quo, and never contingent on it.
There is nothing wrong with discussing how far we’ve come with treating inflammatory diseases; as Dr. Farber noted in his presentation in 1951, every milestone makes a difference in the life of a patient. However, what he also noted was how far we have yet to go before we can declare victory. According to a Creaky Joints study, 74% of RA patients aren’t happy with their treatment options – and that pain, fatigue, and insomnia continue to cripple their quality of life.
One unintended problem is that patients attach themselves to these organizations, and believe they are somehow going to do more than provide community and education – that they are going to significantly contribute research to new cures.
Patients of the nation need to understand that while those organizations can provide a wonderful platform for community and education, their money and fundraising efforts would be so much better spent by going directly to medical research institutions.
We need to get back to our roots of disease advocacy and look back to The Jimmy Fund as our model for funding research: the lion’s share went into medical research and saved millions of lives in doing so, and massive strides were made in a matter of a decade.
Because of investments in research, the original ‘Jimmy’, Einar, went on to live a robust, healthy, and happy life – and patients of this nation deserve the right to do so as well.
The Princess Who Illuminated the Palace
When Sean and I lived in Hawaii, I read a book about Princess Ka’iulani – the last heir to the Hawaiian throne.
The niece of King Kalākaua and Queen Liliʻuokalani, Princess Ka’iulani was born in 1875 to Princess Miriam Likelike and Scottish businessman Archibald Scott Cleghorn. She spent her younger years enjoying all that living in the islands had to offer – she played the ukulele and the guitar and was quite athletic. She enjoyed equestrianism, surfing, swimming, croquet, and canoeing – she once stated that her mother taught her to swim before she could walk. I know that sounds like hyperbole, but I’ve seen Hawaiian kids in the water and can confirm this is probably true.
Sadly, her mother died when Princess Ka’iulani was only 11, and two years later, she was sent to Europe to complete her formal education to prepare her to take over the throne when her time came.
In 1881, her uncle, King Kalākaua, traveled to New York City and met Thomas Edison – and because of that meeting, the Hawaiian palace had electricity before the White House even did.
In fact, in 1887, it was Princess Ka’iulani herself who flipped the circuit at the Nu’uanu Electric Light Station.
In 1893, the Hawaiian kingdom was overthrown. In the years that followed, she lobbied Washington and President Cleveland to spare her beloved islands and reinstate the monarchy, but all to no avail.
During those same years, she contracted the flu seven times, followed by a series of symptoms including headaches, weight loss, eye problems, and fainting spells. In January of 1899, she fell ill again, and soon was diagnosed with what we would now consider rheumatoid arthritis but at the time was called ‘inflammatory rheumatism’– her joints swelled, she became bedridden, and inflammation attacked her heart.
Two months later, on March 6, 1899, Princess Ka’iulani died at her home at the age of 23 from complications due to inflammation.
When Princess Ka’iulani died, her political opponents who she spent the last years of her life rallying against said that despite their differences, it was “impossible not to love her.”
Now here we are, one hundred and twenty-two years later after the death of the Princess who illuminated the palace – in clinical trials to treat disease with electricity.
The Body Electric
In his book Fatal Sequence, Dr. Tracey’s refers to a 1981 quote by Robert Good:
“Immunologists are often asked whether the state of mind can influence the body’s defenses. Can positive attitude, a constructive frame of mind, grief, depression, or anxiety alter ability to resist infections, allergies, autoimmunities, or even cancer? Such questions leave me with a feeling of inadequacy because I know deep down that such influences exist, but I am unable to tell how they work, nor can I in any scientific way prescribe how to harness these influences, predict, or control them. Thus they cannot usually be addressed in scientific perspective.”
And then Dr. Tracey and his team came along – and found the scientific perspective by which to connect the brain to the body – and saved my life and will save the lives of millions of others because of it.
Dr. Tracey’s founding of this field led to an explosion of research, with scientists and engineers from all over the world advancing the field through their lenses of biotechnology, molecular immunology, and neuroscience, all seeking to understand the mechanisms of action and harness those signals to have a targeted outcome. Over the last twenty years, Dr. Tracey and labs at the Feinstein Institutes for Medical Research have mapped the pathway of this reflex in exquisite detail – all with the purpose to eliminate suffering, side effect free.
At the end of Fatal Sequence, Dr. Tracey says of Janice, “I know that her immune system’s fatal sequence burned itself out in four weeks, but I do not like to think of it that way. I find it more reassuring to think that Janice, like an angel, lives on in the efforts to define and understand the nature of the individual cytokines involved in her septic shock and severe sepsis and the way in which her body fought to prevent their release. Her indirect legacy can be found right now in the scientific literature, online at PubMed under the keyword cytokine. I like to think of this work as an unfinished mural stretching for miles around a city or large university, being painted around the clock, every day, by students, scientists, and investigators who do not know each other and cannot see each other because the wall is too long. They may not even know what is being painted on the far side, but they are driven to paint it perfectly, and finish the job, motivated by their own angels. I am confident that someday, I hope soon, the work will be done, and this mural will be a guidepost for the weary patients and their families awaiting cures for cytokine-based diseases.”
At my Aunt Ginny’s funeral, my Uncle David gave the eulogy for the great love of his life, describing how in their early days of dating, Aunt Ginny told him how she had diabetes and that her life may be shorter than either of them hoped, and that he had to decide whether he could live with knowing that could be the case, but that she would live her life fully and joyfully, doing the things her soul and intellect set out to do.
Uncle David ended the eulogy with these breathtaking words, “Then she looked at me with a twinkle in her eye, and she told me that when she put her mind to something, she usually got what she wanted. She did get what she wanted. And I am a better man for having married her. For that, I will always be grateful to her.”
I know a thing or two about what my Aunt Ginny was talking about; when I set my mind to something, I, too, usually get what I want. It is why I sit here today, typing on my computer in the kitchen of an old Federal Colonial farmhouse built in 1850 with three barns on the property, with just the right balance of modern meeting historic, after having told my husband a decade ago that someday, we would buy a house with everything characteristic about the one we live in today. It is why I found the person for me at sixteen years old, the boy from the school bus, and why I recognized him immediately as a result of a list I made when I was ten that stated the characteristics of everything Sean so innately is, characteristics that can only describe Sean as an old-time version of a new time classic. And it is why I sit here today healthy, powered by electricity, like a switch in my body that flicked off the inflammation my nervous system was unable to do so on its own. And I only participated in that trial to power me by electricity because I didn’t live for my disease, within the limitations it demanded would be the rest of my life – I lived for the potential of who I could be later, not what I was in the day. And it is why I came home from a clinical trial that transformed my very existence, and as the Boss says, rocked my very soul, and couldn’t just stop there – but had to see it through, trudging through the valley of indifference, climbing the hills of fury, reaching peaks and lookouts to celebrate amongst the pioneers and beneficiaries along the way, eagerly awaiting the moment that it simply is.
To get there, we must do what my Aunt Ginny spent her life doing as a curator of art: make it accessible. Bring out ideas and objects and new ways of looking at them and engage the public in that way. That’s what it comes down to: context.
Earlier in this chapter, I mentioned this quote: “A revolution can be neither made nor stopped.” When Dr. Tracey wrote the op-ed The Body Electric in 2014 and used this quote by Napoleon, he was pulling from an excerpt of the longer quote. I think he did so because he knew that before the public could realize the power of this revolution in its early glory, 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, 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, enjoyed as with as much ease I sit here today, watching the leaves fall off my trees, sipping a hot cup of tea on a glorious autumnal day.
The Feinstein D.C. Delegation
In June, Dr. Tracey, Jon, Dr. Timir Datta, and I flew down to Washington D.C. for a day on Capitol Hill.
I flew in early on Sunday, got settled into the hotel, showered, and took myself out on the town. I walked from the Kimpton George Hotel to the National Mall and took a selfie with the Capitol Building behind me and the beginning of the mall waiting in front of me. It was a hot June afternoon, and I walked almost two miles from one end of the mall to the other, ending my adventure at the Lincoln Memorial. I walked up those steps and gazed at Old Honest Abe and took a deep breath and smiled down at my now-brown feet – having walked all that way along the dusty pathways along the mall in flip flops and remembered a time when a feat such as this would’ve been unthinkable. I looked up at Abe and took a deep inhale and exhale.
Sitting on the steps with Abe behind me, looking out, I sat in silence and took in the Memorial Fountain, the reflecting pool, and Washington Monument. I felt completely at peace sitting there, a little sweaty from the trek and hot sunny day with my dirty and dusty feet and smiled, while also feeling the eerie nature of likely being the only one of thousands around me who knew about bioelectronic medicine and how it would transform the lives of the strangers I saw who didn’t have any idea of its existence.
With that, I got a text from Timir that he had landed and asked what time we could meet up for a bite. To make it back in time to put myself back together after my excursion (and not show up to a fancy-hotel restaurant with brown feet and flip-flops), I took a cab back to the hotel and met him in the hotel restaurant for dinner and a couple of drinks. Soon after, Jon arrived, and the three of us sat at the table for a while and shared our stories and the plan for the next day. Dr. Tracey would be arriving via Amtrak bright and early the next morning.
The following morning, I got up early, straightened my hair, put on my makeup, and ironed my long, black pencil skirt and black blouse. I packed up my bags to leave with the front desk for the day, and made my way down to the lobby, leaving them there in a locked room to pick up at the end of the day on our way back to the airport.
I was the first to arrive for breakfast, and soon, Jon, Dr. Tracey, and Timir joined. Over breakfast and coffee, we discussed the plan for the day: how Dr. Tracey would present the science of bioelectronic medicine, I would share my experience as a ‘living proof point’ of the promise of bioelectronic medicine and how this will benefit patients and transform healthcare, Timir would explain where the field is going from here, and Jon would tie it all together and drive the point home of our collective mission as the Feinstein delegation: to bring this emerging field to millions and transform public health and the healthcare landscape as we know it.
We spent the day walking back and forth between the Russel Senate building and the Capitol Building. We ran late a few times because I can’t walk through the classic metal detectors with my particular device, so we stood there waiting for a female agent to come to the security gate to pat me down. With that, we decided to take the underground tunnels as often as we could to get from place to place to try to avoid waiting in security, which was just about as cool as it sounds. As we walked through those halls, I imagined John McCain making his way from meeting-to-meeting through those same corridors, and I remembered his words: "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.”
As we sat in meetings in the Capitol Building, Kevin said, “You know what’s incredible? Abraham Lincoln could have been sitting right in this room.” As a man who reads Lincoln’s Gettysburg Address before any of his presentations, I knew that it really hit him to reflect on those possible moments in history.
We met with the chiefs of staff from the offices of Peter King (who has a lot of tchotchkes in his office), Grace Meng, Nita Lowey, Elise Stefanik, Brian Higgins, and Kirsten Gillibrand. They were all fascinated by the promise of this field, with Grace Meng’s chief of staff asking if we could put together a proposal within the next 24 hours to include in the 2020 Appropriations vote. Other ideas that emerged from that day included wanting to put together a proposal for the Department of Defense.
It was a promising day. Dr. Tracey commented on how it’s one thing to see the dysfunction that we see in the news, but it’s another thing to be in the building itself and see legislation happening and work being done. He saw this firsthand when, through his specific directives, he was able to get sepsis classified as an official cause of death by the CDC through his recommendations and work with Chuck Schumer. “The system does work when we put the work in,” he said.
As the troops continued to trail ahead, Dr. Tracey and I slowed down and got lost in the beauty of our surroundings, taking in the scenery. As we moseyed the halls, the two of us were in awe of the history that surrounded us, the architecture, the craftsmanship, and the artistry.
We gazed up at the elegant and exquisite paintings that ordained the ceiling above us.
“Wow... long way from a hospital bed,” I said.
Transformation: a complete change in the appearance or character of something or someone, especially so that that thing or person is improved. [Cambridge]
I’ve had the pleasure of being a tomboy country girl, shooting empty coffee cans lined up on the wooden guard rail of my childhood driveway with my BB gun, catching fireflies in emptied-out ginger ale bottles, befriending woolly bears, and bringing them in for my ‘Show and Tell’ at school; I’ve hit home-runs out of the park, banked 3-pointers that didn’t hit the backboard and experienced the thrill and camaraderie of field hockey. I’ve then had the experience of growing up too early from watching too many people I love die and grappling with my own existence due to a diagnosis of Crohn’s and inflammatory arthritis at 13 and having my world turned upside down. I fell in love with a boy I knew from the bus while laying out on a hill in a snowstorm when we were kids, pouring each other’s hearts into the snowbank and each other, and he let me know that my diagnosis wouldn’t define my existence — and he spent the fifteen years that followed ensuring that was the case. Because of him, I spent three years watching the sunset on the Pacific, I saw the Milky Way above Waimea Bay and then saw dusk later than I’d ever seen it in Northern Holland when he took me to the place to get the thing that saved my life. I’ve seen kids who thought they ‘hated school’ become truly touched by literature and discover its capacity to capture the human condition and their own, and as a literary nerd of epic proportions, I’ve fallen in love with science and found my tribe of people at Feinstein who I have the immense pleasure of witnessing their daily work, and discovering how I can play a part in the story that they are writing that’s changing medicine as we know it.
As a little rebellious girl in the country who climbed tree stands and sat up there for hours smoking cigarettes and reading poetry, and writing my own, and racing through the fields on my quad at more than 45 MPH, hitting bumps that I was sure would buck me from my seat and end me there, to needing a cane at 19 and wheelchairs over the years when it hurt too much to stand and walkers when I’d been immobile for weeks and had to regain balance and strength to walk, from friendships that span thousands of miles of fellow ex-pats that became family, from classrooms to labs and telling the story of how bioelectronic medicine will save lives in Washington DC with a couple of my favorite people, from dancing with Sean in 11 different kitchens in four different states and two different countries across more than 7,000 miles, it’s been quite a ride, and I can’t wait to see what the next many decades bring.
One thing is for sure though – wherever I go and whatever I do, I will undoubtedly continue to be a Celt from the Country, a Jersey Girl who worships The Boss, and will never quite tame the rebel that is always roaring just beneath the surface.
In the fall, Sean and I drove back up to the woods that built me. We had originally intended on going up to the sunflower maze in Sussex County. The day was perfect — the sky was a perfect fall-blue with cotton ball clouds lazily decorated about. We made our way up there and I was surprised to find that going up that way didn’t make me sad — usually, I have a hard time going up to Sussex County; we didn’t part well. When I left, my family was falling apart, and I was ready to ignore those mountains in my rearview mirror.
We got up to where the maze once was and found a cornfield. Confused, I did further research and found that the maze had moved a couple of towns away but was now closed due to the severe weather we’ve experienced. September used to be a sure thing for beauty, but nowadays, climate change has designated September to soggy and gray with hurricane-force winds and torrential rains.
It was too beautiful of a day to head home, so I suggested that we go up to my woods. I hadn’t walked through those woods in almost a decade, and it just felt like the right time to break the streak.
We parked along the edge of the field where my tree stands are, now overgrown and impossible to walk through. We walked along the edge of the woods and found a spot to bush-whack through, leading to the part of the woods that’s only trees and dried leaves and greenery. We passed my old swimming hole and headed deeper into the woods, and I looked up at the more dangerous tree stand of the three. No one had climbed those branches since me, and now there it sat, perhaps a little wiser from those years of quietude, like an elder looking over my woods, keeping its memories safe, bonded to the tree bark by old rusty nails.
For the first time in my adult life, it didn’t hurt my soul to be there.
It felt like I had walked through a time vortex at the edge of the woods; everything was just as I had left it.
The same branches were still bent into archways; the same trees were still covered with damp moss and lying over dried leaves. The stream still rolling over the same rocks that I once hopped to and fro in drenched work boots.
I hadn’t been there in almost a decade and found that the only thing that changed was me.
This book wouldn’t have been possible without the following people who I love so dearly, and the institutions who are the pioneers at the forefront of this field:
First and foremost — for Mr. Bruce Springsteen, inspiring this Jersey Girl to put a pen to paper simply by existing as the narrative genius you are. But would it kill you to write back? If it would, don’t.
To the early pioneers: Thank you’s and so much gratitude are in order for the Feinstein Institutes for Medical Research, Northwell Health, SetPoint Medical, The Academic Medical Center in Holland, and the Karolinska Institute in Sweden. Your decades of collaboration to conduct revolutionary research and establish clinical trials are paving the way to change the lives of millions of patients around the world. Ulf Andersson, Peder Olofsson, Valentin Pavlov, Eric Chang, Sangeeta Chavan, and the entire Tracey Lab — special shoutout to my Renaissance Fair pal, Harold Silverman. For Yaakov Levine, Murthy Simhambhatla, Tony Arnold, Ankit Shah, David Chernoff, and the entire SetPoint Medical team. For Nicole Berkers and the entire AMC trial team — for your wonderful care, so many laughs, and so many milestones together! For Bruno Bonaz pioneering the way in France, and Paul-Peter Tak for the first RA trial and your pioneering work with the a7 receptor, resting heart rate and so much more. For the entire IBEM crew, and for Ben Sahn for your unbelievable kindness and for leading the way with the latest pediatric Crohn’s trials. For Emily Ng, Matt Libassi, and our merry little crew of PR peeps who make it all happen and hustle to get the word out there, and for admin girls and the rest our Feinstein crew for all the smiles over these years.
For our family and friends — For my Uncle John — for the urge to run and the restlessness, and for remembering the importance of lacing up and keeping those boots on when the going gets tough. For modeling for me how to live fully despite the odds, and to never let a setback keep me from seeing the full scope of the beauty of this world. For showing me how to be a cowboy. For my Aunt Jenn for loving my uncle so much, and loving me so much too, and being so much more than I know the right words for, and being there throughout my childhood with so many laughs — I love you. For Mike who asked me ‘what are you going to do about that?’ and just being you — I just love you so much. Learning First forever. For Frankie, the city mouse. *pats head* love you too. For my mother-in-law Sandy for taking us under your wing and loving us so much — we love you so much — now slow down for five minutes and get up here, woman! And for Jamie and Althea — we love you! No more ATVs. For Nicole Warren — you said it so beautifully — time and distance mean nothing when it comes to us, there for the lows, celebrating the highs, a street away or a country apart — I love you. For Aunt Deb for teaching me how to swear like a truck driver and Uncle Lenny for hiding money in the couch. Love youse. To Uncle David — the one and only for my Aunt Ginny, and you’re right, The Godfather Part III is… operatic. I love you. For Mac, Becky, Carina, Max, and all of our Hawaii crew. For the Propellers. For Will, you cantankerous bastard, I’ll never stop missing you.
For my parents, who worked so hard every day to give me the chance to become more than a Crohn’s statistic, who have made me laugh while in hospital beds, and have held my hand when I was scared. For my mom who watched me peer out of hospital windows, thinking I was going to die, and reminding me, ‘Not today, Kel,’ and set up a cot at the foot of my hospital bed to make sure that doctors and nurses let me sleep after a long, painful night. For Wildwood days and gratitude lists and so much laughter. For my dad, who brought me ‘Rosie’ when I was 19 so I’d have a prettier cane than my grandfather’s old rickety-wooden one, and who left work during my Remicade infusions to surprise me at the hospital and hold my hand. For basketball, my three-pointer, hikes in the woods, and the most epic stories. I like to think that I got the best pieces of both of you – mom, thank you for instilling in me a hunger for living. Pop, thank you for modeling for me how to seek life’s simplicity in the woods. I am so grateful for the childhood you both gave me — from the woods and mountains of New Jersey to the white sand beaches of the Cayman Islands. God, what a life. I wouldn’t be me without either of you. I love you both so endlessly.
For my sister, thank you for giving me the permission to tell my story and for becoming my best friend in adulthood, just like mom said would happen while we were planning each other’s demise. I am so grateful that the universe gave me you as my sister, and I learn from you every day. Your passion, fierce loyalty, and unparalleled wit are what have aspired to since I was old enough to toddle after you. Together, and sometimes apart, we survived – and I love you so much. (Also, the salt… it tells us many things!)
For my Nan, for giving me the words of Endymion when I grappled with existence – “a thing of beauty is a joy for ever: its loveliness increases, it shall never pass into nothingness” – and How Did You Die – “Did you tackle that trouble that came your way with a resolute heart and cheerful? Or hide your face from the light of day with a craven soul and fearful? Oh, a trouble’s a ton or a trouble’s an ounce or a trouble is what you make it. It isn’t the fact that you’re hurt that counts but only how did you take it?” – I can still recite that one from memory. For Jonathan Livingston Seagull and Illusions and guiding me with stories of characters who don’t quite fit into the world as it stands, and how perhaps that’s not such a bad thing – and how they never accepted the limitations that others imposed on them – and that those projections from others are generally a reflection of their inability to see beyond their own limitations. For lunches that last for hours, homemade apple pie, game nights, and the most quotable quoter and funniest spring chicken I’ll ever know. I love you so much and I am so grateful that you are my Nan.
For Jonathan Cohen, to the guy who taught me how to ‘stack up the facts’ and that a little fear is a good thing. My mentor, my boss, and my friend, being able to make you laugh is such a huge win. From Humble Pie to Bob Dylan, it is truly an honor to learn from you, and to look to the back of almost every room I’ve presented in and been able to see you. This story would never have been written without your guidance, your belief in me, and your friendship. Love you to the moon, pal. Boatloads’o hugs.
For the Legend – the one and only, Dr. Kevin J. Tracey, my hero, the man who saved my life and rewrote the ending. Thank you for setting out on the adventure that you did to slay the dragon, and then doing it. I’ve heard it said that you should never meet your heroes – but I completely disagree. My hero works down the hall from me, and hearing you laugh every day at work will be in the highlight reel of my existence. Being on this journey with you to ensure that millions more will have access to bioelectronic medicine is the greatest life’s purpose I could ever ask for, and I am honored to stand alongside you. There’s a quote by Tennessee Williams that always reminds me of how much you have changed my life, and will change the lives of millions more because of your decades of work: “The sort of life I had had previous to this was one that required endurance, a life of clawing and scratching along a sheer surface and holding on tight with raw fingers to every inch higher than the one caught hold of before, but it was a good life because it was the sort of life for which the human organism is created. I was not aware of how much vital energy had gone into this struggle until it was removed. I was out on a level plateau with my arm still thrashing and my lungs still grabbing at air that no longer resisted. This was security at last." There aren’t the right words to say how much you have transformed my very existence and allowed me the opportunity to breathe – and my goodness, what life I have found as a result of being able to focus simply on my breath and not my pain, and it’s all because of you. I love you more than words can say.
Sean, my best friend, partner in crime, love of my life – every single day I am blown away by everything you are — and unbelievably grateful to be with a man that loves the seeker in me. In a universe that is only possible because of a perfect imbalance of atoms and a galaxy this vast and a world of 7+ billion people, every day I am honored that life led me to you. You are perfect in every way, and I love you more than life itself. You are my soulmate, my best friend, my partner-in-crime, and I still don’t know what I did to deserve you. You are a new-age version of an old-time classic, and I fall more in love with you the more you unfold. As Tolkien said, “I would rather spend one lifetime with you, than face all the ages of this world alone.” Being alongside you in this lifetime has been my greatest adventure — you — you, my love, are my greatest adventure – and the best is yet to come. Thank you for going to the ends of the earth and back again to make me well – and this one’s for you:
And for the rest of you:
Here it is, the LAST ONE in The Road to Vagus Playlist:
Now it’s your turn. Go write the story of your life. Make it a good one.