(Author’s note: I want to particularly thank the inimitable Amy Gravino for her feedback on and reassurance about this essay. Her example as both a superfan and an advocate for Asperger’s Syndrome gave me the nerve to share this facet of my unique fandom lens, and reassured me that I wasn’t just (over)sharing for the sake of sharing. She is a talented writer, a hilarious lady, a sensitive mentor, and one of the most awesome people I have met since returning yet one more time to the Monkees fandom. I’m honored to call her a friend.)

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So, I’m on a study break from my qualifying exam the other day, puttering around a few corners if the net I’ve neglected the past few weeks while preparing for the Take-home test of DOOM. In one conversation related to the current solo tour, someone made a passing comment about Michael “Nez” Nesmith’s decision to only sign one Monkee-related item per guest at his post-show Conversation Receptions—specifically:

Ya think maybe he’s still not at peace with the whole Monkee thing? Or at least extremely frustrated at the huge shadow it continues to cast over everything else he’s ever done. I guess I would be too.

Now that hypothesis is nothing we Monkeemaniacs and Nezheads haven’t thought or read or even said a million times. But my gut’s told me the “not at peace” line is a simplistic hypothesis that’s easy to toss off in a blog post (I’m guilty of it, in my defense we’d just had a Very Big Day), but that hides a deeper truth. So I began writing a long-winded reply. And then I started getting really passionate. And then I stopped, and asked myself why I was so certain of the inner motivations of a fairly complicated guy whom I’ve never met (Well, I’m meeting him in 13 days. Oh, shit. *takes cleansing breaths*).

Seriously, why do I keep ranting over and over about the evils of entitled fans, in all fandoms? Yeah, it all started with a momentary screaming fit in my car over a tour that came 3 months late to fulfill a lifelong dream of one of my best friends, but I started wondering if there was more than that to the story. And then “the Flying Tomato” did a “Double McTwist 1260” in my mind’s eye, and I facepalmed. It was time to write the post I’ve been dreading ever since Gazpacho, Grief, & Gratitude went Monkees!Viral and I knew that I was not going to be able to extract my positionality and personality from the story I’ve told here of using pop culture to make sense of my life, and vice versa.

There’s no non-melodramatic way to say this, so I’ll just say it flat-out (with the help of a zipper-tastic selfie). I, like 1 percent of the population, live with a congenital heart defect, or CHD (three actually, though the latter two were quite handy). My plumbing issues are roughly comparable but a bit worse than fellow CHDer Shaun White’s, but thankfully nothing near so life-impacting as Becca’s (Happy 21^st!) or irrationally adorable Pokemon Obsessive Liam. Like Liam, I’m Palliated but not “Cured”, though according to longitudinal studies my cardiac kludge seems to stand the test of time reasonably well, and there is an improved “fix” available to kids born with my issues these days (though really, few if any defects are ever 100% “cured”). Tl; Dr, I walk 5K races, but can’t (yet…) run them, and I take exactly one pill a day. All in all, a pretty good life. So what the hell does my backwards-plumbed circulatory system have to do with autograph policies, snowboarding, or even celebrity/fan culture in general?

I’m not really a sports fan, but I do follow the Olympics—winter and summer. I honestly can’t remember where I learned about Shaun’s defect—I want to say it was some website profile before the 2010 winter games. I’d watched his antics in 2006 so was already mildly familiar with him, and was pleasantly surprised to discover somebody “like me” was a competitive athlete. A couple weeks later, Shaun was interviewed during the Olympics, and they asked him about the matter. Watching that interview very closely, I could almost feel Shaun struggling not to squirm. He said something very straightforward, along the lines of “overcoming my heart defect made me more competitive”, and then he smoothly changed the subject to his new skateboard line or whatever. I was impressed with his PR chops. He kept the interviewer on topic, and defined himself on his own terms. That wasn’t the time or place to be plugging charitable causes, so I simply filed away his deflection for my own personal future use (though I don’t ever plan to have a skateboard line).

Then came the Hobbit. I was mostly busy gazing at the glory that is Martin Freeman, but was also gnawing on this commercial for St. Jude’s that played before the show.

As this point, I’ll turn over the mike to Amanda, Liam’s mom. She says it better than I could here and here, though she has a rather different perspective on the matter than I do. I really want you to read her thoughts (and the rest of the blog, and then buy her book), but in a nushell: Amanda was kind of confused as to why Shaun devoted charitable energy to a cause better funded by several orders of magnitude than the one that has touched his own life.  (note: the link to Amanda’s book is an affiliate link, but if anyone buys I’ll split 100% of my commission into equal donations to the charities linked below)

Now, If we look at Shaun’s charitable PSA choices though Amanda’s lens as a warrior, she’s 150% right. In a perfect world, Shaun would not be playing it safe by using Saint Jude’s to contribute to the Charitable-Industrial complex—he’d be out there banging the drum for the Adult Congenital Heart Association, Mended Little Hearts, et al. But you know what? I understand Shaun’s choice. I only did the Poster Child gig once, but that was enough to learn how he would likely be infantilized and used if he didn’t construct and control his public image the way that he does. No broadly-grinning tomato-haired hipster soaring over metal music in total control over his performance, but rather soft-focus childhood photos, sad cellos interspersed with heart monitor sound effects, tears from mom, stock footage of hospital beds all building to a triumphal finale with some uplifting tune from Copeland or something. In other words, something like how those badass kids were disempowered and fetishized in that sappy-ass, manipulative St. Jude’s commercial. Gag. (And if you think I have issues about St. Jude’s marketing strategy, don’t EVER get me started on Susan G. Komen or Jerry Lewis…)

That narrative is the last thing I ever wanted attached to me as a competitive (in a nerdy way) sort of person, and the closest thing I ever achieved to sports success was when I was 13 and the softball coach regaled everyone at the end-of-season picnic with my medical history before handing me my “you tried!” participation trophy (pro tip: don’t do that). I was somewhat contented with the fact that if you squint, you can maybe just barely see the top of Shaun’s midline scar peeking above the top of his tee shirt in the St. Jude’s commercial if you know what you’re looking for. And even if he wasn’t helping “our tribe” directly, he was at least using his celebrity to help sick kids rather than flogging yellow wristbands while shooting up with performance enhancers. *ahem*

Luckily, I’m much more familiar with Shaun’s struggles than Amanda’s. At 16 I had the world’s most frightening Perils of Pregnancy talk from my cardiologist upon proudly announcing the utter miracle of landing myself a serious boyfriend. If I’d been Catholic I might have considered becoming a nun, but contented myself with sobbing on said boyfriend’s shoulder (If you ever bump into this, Eddie, thanks again). I’ve heard more optimistic assessments since, and I know of women with my anatomy who’ve had kids, but I chose against of bearing children then and there, because if shit can go wrong medically in my family, it does. In my 30s after some honest marital talks, I opted for a doctorate instead of adoption. Yes, I know some can get advanced degrees while raising children and working full time. I’m not one of them.

Long story short, I will never know what it feels like to be a mom of anyone—much less anyone critically ill. But I do know what it feels like to walk into the Doctor’s office every 6-12 months, knowing intellectually you’re as normal(ish) as ever but wondering if you were just in denial, if that bit of indigestion you had last weekend after that ill-advised Lengua taco at the new truck downtown was really a horrible pernicious arrythmia. If this is the visit where the good luck ends and you’re gonna start dying. Hasn’t happened yet, knock wood it very might well never happen, but you’d better believe that growing up with something like that is a powerful incentive to live life on your own terms and fuck what others say.

And I realized…I don’t keep ranting about this entitled fan crap for the reason I thought I did all this time. I rant about it because I decided long ago I needed to be more than my defect, more than my manufactured image.

And on that note of realization, back to autograph policies. Obviously I can’t speak for Nez, but for me, at least, It’s not a matter of being “at peace” or “not at peace” with something. It’s a matter of being able to stand up and say THIS is the totality of who I am, and to have my complete voice be heard. I am more than That One Thing. It’s a difficult thought process to understand unless you have a That One Thing in your life. That difficulty is why I kept That One Thing to myself over the past year and a half. But my old friends Jenny and Anissa (who died when I was 4 and 35 respectively) are gently telling me it’s time to put on my Big Girl Jimmy Choos and own this part of my story. My heart was probably irrelevant to the events of the past year and a half, but it was also suspiciously convenient not to go there. After all, something drove me to allude to Jenny in the very first post I made here–even if I was too chicken to tell you we met in our parents’ support group.

Sometimes it’s easier just to hide That One Thing. However, unless we become hermits (an ultimately self-destructive act–I know because I tried it during puberty), we all have to live in a world that may perceive what “matters” about us differently than we do. Doing that dance is tricky enough for me, and it was only about 2 1/2 years ago that I began coming out of the closet with my defect to more than my nearest and dearest. I can only imagine it’s murder when you’ve got a herd of fans and/or activists breathing down your neck to be a role model, or assuming that because your self-definition differs from their assumptions, that you haven’t “made peace” with That One Thing, whatever it’s a unique circulatory system or a stint in America’s first manufactured boy band. Maybe for the celebrity who you’re judging, That One Thing’s not that big a deal. Or maybe his attitude toward That One Thing is none of your damn business.

But all that said, Amanda has an extremely valid point. Now, Shaun doesn’t owe the CHD community anything. But having walked a mile in a version of his snowboots, I would cautiously argue that in our unique situation there are things my 1% owes ourselves, not to mention the very literal children, research animals, etc, who died that we might live. Maybe everyone owes something like this to themselves and the universe, but I can only know my perspective on this issue.  In any case, Shaun and I (and the rest of the 1 percent) owe those ghosts (and ourselves) a fully lived life of whatever length, full of joy and friendship and dreams attained and generally improving the world in the ways we can. And an aspect of my journey, right now at least, is to find openings where I can be honest about the ways in which my That One Thing does and does NOT matter. I’m a decent writer and educator, and my words might smooth the way for someone else. If I broaden someone’s horizon, or even better, help one struggling young person with a heart defect who was drawn to some of the dorkier byways of pop culture, then this post was worth it. (If that’s you, email me. No matter your health issues, I SWEAR it gets better emotionally and socially.)

As for the slowly emerging novel/series I mentioned in passing a few posts back? It’s the story of an unlikely friendship between a heart surgeon and pediatric cardiologist, and the lives their 30 year partnership saves (and doesn’t save) along the way. Think the Master and Commander series with EKG machines. I spent 36 years trying NOT to write about That One Thing. But now I will. I have to. The larger world NEEDS to understand this world, and it if my medicine will go down more effectively with the safe sugar coating of fiction and a generous dollop of dry humor, then so be it. Most importantly, I am exploring this story alongside my dissertation work because nothing else creative will come out till I do, and because I may be the only person who has both the nearness and the distance to tell this story. Most importantly, I needed to learn the lessons of The Year of Our WTF before I could explore That One Thing in a non-Mary Sue manner.

But this story will be told on my terms. If I do manage to write this, and sell it, and it hits big, you better BET I’ll be on talk shows in a tastefully low neckline promoting charitable organizations and urging other adults with heart defects to get follow-up care (You all need it, at least once. I don’t care what your cardiologist told you when you were a teenager about being “fixed”. Pop open a tab NOW and find a specialist. if you’re scared about it email me.)  But I can only conceive of doing that (or writing this post) because I’ve defined the rules of engagement. It’s my personal equivalent of the line between wearing sparkly Reunion Choos on the solo tour but only signing one Monkees item per person. My defect helped make me who I am, and unconsciously influences every word of fiction, analysis, or scholarship I’ve ever written. It also may explain a great deal about who I am a fan of, and how I make sense of celebrities, fans, and Fandom. That said, I am NOT my circulatory system. Never have been, never will be. So if I ever do get on National TV to plug my bestseller, I’ll happily answer a question or two to bust myths. But if Oprah or Rachael wants to spend all 10 minutes of my precious book-promoting airtime reducing me to my “miraculous” plumbing, then, well, in the words of another person far too often simplified down to his That One Thing…I’d really rather not. 😉

(fast forward to 4:00 if it doesn’t automatically–or don’t, as it’s preceded by another favorite. 🙂 )

And speak of that sparkly-shod devil, next up is likely going to be my review of the Nez concert and *gulp* conversation reception. I decided against bringing my Vinyl Headquarters to go along with TLSHONZ and Tropical Campfires…but after an embarrassing amount of deliberation and waffling I’m wearing a cute new cashmere V-neck I just spotted. Kevin likes me in low-cut stuff and Nez can hopefully cope with some mild B-cup cleavage. 😉  Besides—you only live once, right?