Yeah, you think about that, what you believe in. It matters now to you and me, what you believe in. I’m taking in—I said I’m taking in—what you believe in. It matters now to you and me.

—Tori Amos, “Sweet Sangria”

Much of life, I have learned, presents in paradoxical dualities. Among the lessons I have learned in this context: many failures eventually reveal themselves to be opportunities; many times the same qualities that manifest as strengths also manifest as weaknesses; and what is most personally embarrassing, shameful or feels exclusively intimate also is what forms the most authentic and strongest connections between human beings.

One of my strengths/weaknesses is the combination of sensitivity and forthrightness. When I feel injured, I feel it deeply, and then even after careful consideration, I always seem to put these feelings into words. That’s what this post is about. I hope that it will be read in the spirit in which I am writing it–which is honest, and perhaps a little too earnest.

Honesty always seems to trump maintaining a professional facade in my life.

So without further ado, here is my question to the Lyme community: What do you believe in, really? What do you want to accomplish, and do your actions match your motivations? Since yesterday, I’ve had to ask this of myself as well as others.

The Lyme community consists of many different individuals who serve many different roles. It also consists of organizations. Let me tell you where I am coming from.

Advocacy — It matters now, to you and me.

In May, I had the privilege of participating in some Lyme advocacy events on Capitol Hill, and in the process I met many incredible people. These people–all of them, every one–without any doubt are deeply and personally invested in improving the lives of people who live with Lyme disease.

All of the congressional staffers with whom we met seemed to listen intently, at least when some of the little-known and alarming revelations were made: the prevalence of Lyme, which no one can seem to believe. Meeting a woman who passed Lyme to her child, and another woman who was born with Lyme disease, misdiagnosed and mistreated with biologic drugs that destroyed some of her organ systems. When I, a relatively thin 38 year-old man, told them that my body is covered in what appear to be stretch marks from my shoulders to my knees.

One congressional staffer seemed particularly interested not only in hearing about our problems, but in potentially doing something. “The senator cares about this,” he said. “But,” he said, “we need to know what you need—what all of you need.”

The senator in question hears a lot about Lyme, the staff person told us: it affects his state profoundly. The office receives many visitors who petition them for action. Some have specific requests (which is necessary), some don’t (which is ineffective), but there’s one major hurdle: “Everyone who comes in here asks for something different. We need to know what you really need.”

I learned that day that there is disharmony among factions of the Lyme disease community. This was news to me, as I don’t get out much owing to persistent fatigue and an introverted nature. Evidently, people’s personal motivations are tying up progress, at least to a certain level. How many Lyme organizations are there? How many of these have a shared agenda? More importantly, how many don’t?

I’ve worked at national not-for-profit organizations in the Washington, D.C. area all my adult life. All of these national nonprofits exist because there are common interests and motivations throughout the country—yet all of them are made up of individuals who live in individual communities, counties, states and regions, and in most cases there are conflicting perspectives. Conflicts most often come down to geographically based political differences and personal motivations. In other words, partisanship and egos.

This is inevitable, but it’s also detrimental and untenable. It can kill a movement.

Most likely just like you if you’re reading this, I spent a great deal of my adult life in a confusing quandary about my health and well being, and much of that time in absolute agony and confusion. Being told by doctors that there is nothing wrong with me, or that my health problems were in my head, was as devastating as the physical and psychological toll the illness took. I can live with “we don’t know.” I can’t handle disrespect and denigration, especially when it involves something else telling me that they know my body and mental functions better than I do.

The traumas of these experiences motivate me. I don’t want this to happen to anyone else. And so, as a result, I’ve dedicated a huge amount of my time over the past year to researching and writing about Lyme disease in an attempt to raise public awareness. I’m not driving advocacy efforts, but I will be audacious enough to offer a recommendation to those who do: Realize that all of us are representing common interests and find your common ground. We heard it straight from the proverbial horse’s mouth in May: A lead staffer for a high-level U.S. senator told us that the senator wants to take action, but can’t make any sense of what actions to take because a parade of representatives from different Lyme organizations keep coming into the office and asking for different things—often, these things are pieces of legislation tied to these individuals’ names or pet interests.

That’s not OK. Organizations I have been paid to work for in a communications capacity have always had me emphasize one primary point to nationwide constituents: work out your differences in private, find the common ground, strike the things you can’t agree on, identify highest-level priorities, and all of you, every one, petition lawmakers and other officials to take specific actions on those few, important common issues. If you don’t speak with one voice, then you’re undermining your own work.

It’s easier to recommend that people check their egos at the door than it is do make that happen, but it has got to happen.

Community and Communicating—You think about that, what you believe in.

I opened this post with lyrics from a Tori Amos song. Tori Amos is my favorite artist, and having listened to nearly every one of her songs probably thousands of times, they reside in my subconscious.

Having just written critically about other people’s egos, it’s time to eat crow and own up to my own. Yesterday, something happened that triggered lyrics of another Tori Amos song, “Taxi Ride”:

We’ve all been pushed too far. I guess on days like this, you know who your friends are. Just another dead fag to you, that’s all. Just another light missing on a long taxi ride.

Sure, you talk the talk when you need to. I fear the whole world is starting to believe you.

Just another dead fag to you, that’s all. Just another light missing in a long taxi line. I’m down to your last cigarette and this “we are one” crap as you’re invading this thing you call love. She smiles way too much, but I’m glad you’re on my side, sure. I’m glad you’re on my side still.

Here’s how I think this involves my ego, although I realize it is difficult to be objective about something so personal and subconsciously driven. I have been working my ass off, dedicating as much time and effort to addressing Lyme disease through my Huffington Post blog, through an op-ed that was placed in The Guardian, and through countless other articles that have not been picked up for, let’s say, “high-level press” publication, as I do to the job that actually pays me.

I have an undergraduate degree in English and a terminal graduate degree in creative writing. I’ve had ambitions throughout my life to be a screenwriter, a television writer, a magazine writer, a novelist—all of these were dashed through various circumstances, most of them having to do with my health or my ability to focus, presumably a side-effect of my failing health, even before I really realized it was failing. I was taught in grad school never, ever to publish anything under any circumstances without compensation—because writing is a skill, a talent, a public service, an art, a craft, and an asset that should not be exploited.

I have been sent several really great books, a tee-shirt from the Loudoun Lyme 5k that I wear proudly, and I’ve developed a lot of deeply meaningful relationships based upon common experiences, albeit traumatic ones. I have not received a cent for anything I’ve written. To the contrary, I’ve put hundreds of dollars of my own money into raising awareness and educating myself, even to launch this website—which isn’t a huge amount, but given that I spend upward of $400 per month on supplements just to have the energy and clarity of thought to function, it’s significant.

And the real, honest-to-God truth is that I am absolutely satisfied by writing about Lyme disease “for nothing,” because it’s not for nothing. It’s so vitally important to me. When I hear Tori Amos’s voice in my mind asking me to “think about that, what you believe in,” I know the answer to that: I believe in respecting people and I believe, without any religious affiliation, the universal value of the golden rule. Be kind. Treat others as you’d want to be treated. That’s what I believe in, and it’s the basis of my writing. I don’t write to demonize anyone or any organization: I care about the truth, and the reason I care about that is because so many people are being abused, harmed, and even killed by policies rooted in strange denial of reality, and I just can’t bear it. I have been one of those people, not only when I had Lyme but also when I was young. In retrospect, even if it makes me sound like I am claiming victimhood, it’s a miracle I survived adolescence. I was physically and verbally attacked every single day that I attended school from seventh grade through my last year of high school because of my sexuality, my severe acne, because of factors beyond my control and because of who I was. Having lived through it, with marked and pronounced consequences, I could never go back into that crawl-into-a-hole-and-die mode. From the time I graduated from high school, it would be fight or die. That’s what got me through the surreal experience of Lyme disease diagnosis and ultimately to treatment that has made a tremendous difference in my life and which has restored much of my wellbeing.

I can handle bullies and harassers. I’m prepared for that, better than ever.

I have learned how to handle arrogant and damaging medical professionals through my Lyme ordeal: Step one, assess arrogance level. (Grading on a curve, as we must, for physicians—an unbearable seven for anyone else is a tolerable average for a doctor, unfortunately.) Step two, if you sense any evidence that the doctor is certain s/he knows everything, and that everything s/he knows is from a medical textbook or a federally issued guideline, say goodbye and audition a doctor until you find one who views you as a riddle to be solved rather than a problematic whiner.

What I didn’t expect was a certain sort of betrayal that, having had a day to consider, I have to admit injured my ego.

Someone—a wonderfully kind and stridently committed leader among the Lyme disease community—suggested to me that I attend an upcoming conference. I thought about it. To think about it was immediately exhausting: the time commitment, the expense of traveling and paying for lodging, and the dually stimulating and exhausting classroom-like experience of taking in so much new information and even more exhausting experience of interacting with strangers. (I am such an introvert, you have no idea.) I thought about it some more and realized that it would be worthwhile, valuable, and even exiciting…if I were even invited.

So yesterday I emailed the organization and asked if there was any way I could attend to learn more and potentially write stories related to the content delivered during the conference. I can’t pay to attend, I wrote, because I am not compensated to write about Lyme disease, and I do understand if it’s not possible but would be remiss if I didn’t ask.

The reply I received surprised me. “Typically,” the email read, “we only invite high-level press.”

Upon the first read, that stung. The more I thought about it, the more it stung. I half expected something along the lines of “we’re sorry, but that won’t be possible,” and half expected something like “you could attend X sessions.” I’ve handled communications for over 20 conferences, and we invite all media to attend because, frankly, it’s free PR. But I didn’t expect a verbal punch in the face.

I’ve written nearly 20 articles. Most of them, frankly, are far better researched than stories that appear regularly in “high-level media.” In fact, I’ve taken name-brand media to task on multiple occasions for misinformation/potential disinformation:

  • When VICE published an article falsely “debunking” chronic Lyme disease through the words of an IDSA spokesperson (without disclosing he is an IDSA spokesperson and a paid courtroom witness in IDSA’s interests), I spent a great deal of time dismantling the article and identifying its factual errors and published this commentary on my Huffington Post blog. I’ve repeatedly contacted VICE’s executives and executive editors urging them to either revise the article in accordance with fact or to publish someone with another viewpoint. I’ve received no response, and as far as I can tell, I am the only person who has gone to these lengths to correct dangerous misinformation.
  • When Forbes published a seriously flawed and false interpretation of a recent study, proclaiming in its headline that “Long-Term Antibiotic Use for Lyme Disease Doesn’t Help, Study Finds,” I did the same as with the VICE story.
  • When the Boston Globe editorial board published the position that legislation proposed in Massachusetts to protect Lyme patients and doctors would be ill-advised and the newspaper therefore urged its readers to reject this legislation, I published a piece asking what gives the Boston Globe any medical authority to do this. If ever I might have been published in the Boston Globe, I can be certain now that will never happen. Likewise VICE and Forbes.
  • And I have repeatedly petitioned NBC and Bravo to depict Lyme disease more fairly and responsibly, and to keep in mind the effects of their storyline on public health. To no avail, but I have tried.

Presumably, VICE, Forbes, the Boston Globe and NBC networks are “high-level” media organizations. All have proven to be enemies to Lyme patients. All would be welcome at the Lyme convention that felt a need to unnecessarily insult my professional affiliations.

An email that followed asked if I would be willing to volunteer at the conference. “We have film crews coming as well as printed media. We need someone to take them around.” So, if I will work, again, without any compensations, and also serve as an escort for “legitimate” journalists, then there may be space for me.

Oh my God, that was painful. It’s an ego thing. I must admit that. But—just wow.

I guess on days like this you know who your friends are. 

Sure, you talk the talk when you need to.

I fear the whole world is starting to believe you…

This little comment, what I can’t help but interpret as a personal insult, made me question what I am doing—all the time and thought, my heart, what I am giving away.

I am not motivated by money or material gain. I can afford better, but I drive a 1997 Honda Civic because it works, and I don’t discard things just because they’re not shiny and new, or because they are prestigious.

I am not motivated, either, by being taken for granted. This can also be read: My motivation is stripped when someone shows that s/he takes me for granted. Because I am a human being. You respect me, I respect you. That’s the way it should go with everyone from family to doctors to strangers in my book of life.

The organization in question has asked me in the past to relay information on its behalf through my writing…and now I not welcome because I am not of high enough caliber, and then I am possibly welcome as an unpaid escort to those who are more legitimate.

As I wrote at the opening of this, I am never sure whether it is more of a strength or a weakness to wear my heart on my sleeve. I’m hoping by writing this that it will be read, and that it will be read less as the whining of a low-profile writer and more as it is intended: an urgent plea for people who are trying to make a positive change for Lyme disease patients to realize that a great deal of the injury put upon us has been due to disrespect. The remedy for that is mutual respect.

I have no interest in being a very important person.

I have every interest in respect—for you and for me. That’s what I believe in.

We need to know who our friends are, and those people are especially deserving of respectful treatment. Not favors, and not special treatment. Mutual respect.

For those who don’t know who your friends are when it comes to Lyme disease, I will tell you what I know about that.

Your friends are the doctors who are bravely helping Lyme patients. Strike bravely. Honorably helping Lyme patients. To think that a doctor has to rally courage to uphold his or her Hippocratic oath is an unbearable thought, even when true.

Advocacy organizations and the people who run them are our friends, too, but they need to find common ground. Working on behalf of pet interests is working against all of us. They need to come together through some national, consolidated effort. Otherwise, we are going to keep ringing the alarm for members of Congress to do something and give them so many contradictory messages about what to do that they will do nothing. And they may even come away from it thinking we’re crazy.

People who have Lyme disease and who are public, loud, obnoxious and vocal about it are our friends. There are high-level spokespeople are lower-level spokespeople. As the inspiration for this website, though, And The Band Played On, a documentary book about how the government and society failed AIDS patients even as it was devastating lives, reminds us, it’s something of a tragedy when it takes a beautiful celebrity’s voice to stop a raging pandemic.

Maybe that’s reality.

But to my knowledge, there are a few consistently vocal, in-your-face advocates who are truly advancing awareness of Lyme disease and the movement through communication to get it in check. I will name names, in alphabetical order, because everyone is contributing something valuable.

These are just a few whom I’ve come to know personally and whose interests I know are pure, plus a few others who have put a lot on the line by “going public.”

In fact, all of us have done that. I regard what I am doing with this as something of a risk—will it hurt me professionally in the future that I have disclosed so much about my health so publicly? Will is limit job prospects, could it potentially affect other aspects of my life? I can’t know that; I know that there’s a real potential risk, but I also know what I believe in.

3 Comments »

  1. Thank you for sharing your honest thoughts, I for one value saying what you actually think and feel. I live in Canada and we have similar political battles with Lyme ‘controversy’ but I take a keen interest on the happenings in the States as our federal health organization takes its lead from the CDC. Basically I won’t be helped until my neighbouring Lymies are helped…! I didn’t realize that there were ‘self-servers’ with individual agendas potentially adding to the confusion about what it is needed for Lyme patients. I can’t imagine that any fellow sufferers wouldn’t advocate for all who have this horrible illness. That Senator makes a good point, one unified voice is needed to deal directly with gov’t on behalf of patients. In Canada we have an advocacy group called CanLyme that has the most success interacting with various levels of government and they recently met with our federal government which has kick-started a federal framework. Perhaps an established organization such as NatCapLyme can be approached to act as the ‘national voice’ for American Lyme patients? Perhaps your voice speaking directly in the right ears of such organizations will be the catalyst that creates unity between the varying parties? You have a compelling writing style, set it to purpose and contact the leading organizations directly – call them to action! Surely one of the organizations will be willing to carry the torch.

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  2. First of all. Don’t do it. You are a journalist, and you are an advocate. If these people want to employ you as a tour guide they’re dangerously ill-informed.We live in a post-journalistic age. When I hear the words ” high level press” honestly I don’t really even know what that means anymore. The Wall Street Journal? Forbes Magazine? You seem to be dealing with a system in this instance that doesn’t realize that one of your articles on Huffpo was individually endorsed by 1.4 million viable, voting, purchasing, living human beings. *Many* people know exactly who you are and what you are doing and believe me they appreciate it. You’re on the high road, my friend. The times they are a changin.

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    • Thanks, Jordana. I actually did attend this conference and it had an overwhelming amount of good information–which on a personal level actually revealed that I have mast cell activation syndrome, now proven by blood tests, and so it was of great value. A wonderful nonprofit organization sponsored my participation in the event, and I did not have to escort “legitimate” press around. I paid for my own transportation to and hotel rooms at the conference–totaling almost a thousand dollars–out of pocket, but it was worth it for the body of knowledge, even though I don’t get any kind of compensation for the Lyme writing I do.

      It is unfortunately that the organization in question seems somewhat more focused on making money than it does on getting truth out into the world.

      Like

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