Not Your Contagion

There are some days when I realize that my anger is somewhat more personal than that of other people angry at the same thing, but that I don’t necessarily expect those who are supposed to be my allies in anger to understand WHY it is so much more personal for me.

To wit: This article in the Los Angeles Times, which has been making the rounds of the Internet. Now, there are very few reasons as to why the rate of measles should have tripled within the span of two weeks, and they all pretty much boil down to people not getting vaccinated or vaccinating their kids. Granted, there is no data correlating the rise in the disease rate to the decrease in vaccination rates for those two weeks (being the health care data geek I am, I would like to see that), but it should not be too far a stretch to draw that conclusion.

I recognize that the whole vaccine debate is rather fraught. I will say that my arguments in favor of vaccinations are based on a pretty thorough understanding of how herd immunity works, combined with enough years working with pharmaceutical companies to know that vaccines are actually dirt cheap. Where pharma DOES turn a huge profit is on drugs to treat the diseases that vaccines prevent. So there is no great conspiracy on the part of pharma to make money off of vaccines at the expense of people’s well-being.

But I digress.

The more relevant datapoint here is that if I was to walk down to the end of my street and throw a brick about half a mile, it would land in Orange County. The other relevant datapoint is that to the untrained eye, my condition can look like measles. If it is a really bad allergy season, I will also have red, watery eyes.

So yes, I live right next door to a county which has seen the rate of measles triple in two weeks. While having a completely non-contagious skin condition that looks like, well, measles.

Are you starting to see the problem here? Because of the current flurry of news stories about the upswing in measles that is just down the street from me, I am now more likely to be side-eyed as one of those measles cases every time I go out in public.

Let me tell you how those conversations usually go:

Concern Troll (at the top of their lungs, so as to all the better draw attention to me): “OMG, WHAT IS THAT THING YOU HAVE THERE??? IS IT CONTAGIOUS???”

Me (in my best professionally polite voice): No.

Concern Troll: “IT SURE LOOKS CONTAGIOUS!!! MAYBE YOU SHOULD HAVE IT CHECKED OUT JUST IN CASE IT IS???”

Me: I said that it is not contagious.

Concern Troll: “WELL I THINK YOU SHOULD HAVE IT CHECKED OUT JUST IN CASE!!! BETTER SAFE THAN SORRY!!!”

Leaving aside for the moment the fact that unless Concern Troll is my health care provider or my health insurance company, federal law says it is *not their business,*  I am now suddenly viewed as a contagion rather than a human being. And of course, with all the recent media hype in my area, the chances of this have just gone up exponentially.

So I will say this again: I am NOT your contagion. If I tell you so, your one and only further course of action is to step off and stop pestering me. If you don’t, I am not above telling you that I lied and actually have Ebola. Before patting you on the hand to reassure you.

 

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It’s…complicated

Further adventures with new health care providers. In addition to the skin thing and the pain thing, I have the eye thing. I have had cataract surgery done on both eyes, and am on record as one of the youngest patients to ever have that done (I was 21 at the time). I also have glaucoma and corneal scarring on the right eye from recurring viral infections following each of my surgeries. Given what I do for a living, I need my eyes working as well as possible for as long as possible (yes, that was a shameless ploy to get you to click on over to my online portfolio).

So today was the day to break in a new eye doctor. I had my previous eye doctor (who had done my most recent eye surgery) fax over all of my records, as well as fill out the medical history questionnaire in detail.

The physician’s assistant scanned over all of my paperwork, looked exasperated, and said “There’s just so much here. Can you briefly summarize your medical history for me?”

Again, I pulled out my best Buddha smile: “It’s…complicated.”

She stared at me for a minute, realized that I had, indeed, summarized everything as briefly as possible, and went back to entering all my data, muttering.

This, once again, is where I have come to realize that the way I approach health care is entirely different from how “uncomplicated” patients do so. I’m not easily summarized into a PowerPoint presentation, with easily digestible take-home points.

Actually, I lied. If I WAS a PowerPoint presentation, I would look something like this. Except there would be about 70 slides of about that level of intricacy.

So no, Cupcake, I am not your usual patient. Please don’t expect me to behave like one just because you want to get me out of the way so you can go home.

 

 

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Not Inspiration Porn

Just so that we are all clear on this, Hugh Herr’s TED talk about advances in creating bionic limbs is NOT inspiration porn. It is an amazing marriage of determination and high-tech that gives people back their lives. Herr’s notion that his body was not broken , but that the technology to fix it was that way is nothing short of revolutionary in terms of what it made him achieve. Want proof? Look at the expression on Adrianne Haslet-Davis’ face.

I will also note that he went one step further than I expected by stating that he is working with CMS (the governmental body that oversees Medicare and Medicaid) to create codes to cover bionic limb replacement. This will make such technology available to patients who otherwise could not afford it.

In short — this is what inspires greatness, not a sappy Hallmark motto.

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Make ‘em Laugh

I hate breaking in new doctors. It is just about the worst part of being one of Those Patients. I’ve written previously about this. Because of my switch to ObamaCare at the beginning of year, I had to switch doctors.

It’s not unlike a blind date. You have no idea what to expect, and given your past dating history, you are steeled for it to be a complete disaster. If you are lucky, it’s great. If not, you are either trapped with somebody who doesn’t listen, or you start doing speed dating to find somebody more compatible. Except it’s not for somebody with whom to go to the movies or take long walks on the beach, but for somebody who is responsible for your health care.

My new doctor came in, shook my hand, and introduced himself. He asked why I was there. Was I not feeling well? I explained that I was actually there to introduce myself to him. He looked surprised. Is this something that standard patients don’t do? I have no idea. I did my show and tell.

His right eyebrow went up. I had his attention. He composed himself. He then said, “I am going to ask you a bunch of medical history questions. They might get pretty weird.”

My right eyebrow went up. “I will bet you can’t come up with any questions that I’ve not already heard.”

(I was sorely tempted to quote Zaphod Beeblebrox from Hitchhiker’s Guide to the Galaxy: “Don’t you try to outweird me, I get stranger things than you free with my breakfast cereal.” But that would have probably been pushing my luck past the breaking point.)

He cocked his head at me in that manner that says “Challenge accepted.” He began rattling off questions. We went through the family history, my medications, my previous treatments, and even where I had been seen before.

He then paused. “So, did I cover everything?”

I gave him my best Buddha smile. “We didn’t even get into the questions about tropical diseases or parasites.”

He laughed, shook his head, and threw up his hands in good-natured defeat.  And in that instant, I knew things were off to a good start. He listened to me. He paid attention. He understood that, in many ways, I would be educating him.

The moral? Make ‘em laugh. If you can make that health care provider laugh with you, that’s three-quarters of the battle won, right there. They will remember you, and see you as more than just that weird and mysterious disease or illness.

 

 

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Not Your Inspiration Porn

Can we talk for a minute about inspiration porn? You’ve probably run across it. It usually comes in the form of a photo of some cute adorable kid with missing arms or legs. Often, said kid is doing some sort of sport while wearing specially designed prosthetics (we shall set aside for the nonce the problem with that in terms of what those prosthetics cost). The photo is usually accompanied by some sort of inspirational quote that was likely ripped off from a Hallmark greeting card — “The only thing holding you back is giving up!”

In other cases, they are more subtle, such as this Facebook post that made the rounds on Reddit (yes, yes, a hive of scum and villainy, I know). As expected, it made the rounds of the Internet as being inspiring to overweight people trying to lose weight.

So what’s wrong with that? Shouldn’t we be inspired by people who overcome obstacles to improve themselves? Well, yes. But the problem is that the person who wrote that Facebook post was indulging in a form of inspiration porn. The “fatty” (and can we please just stop with using pejorative terms?) in question is not seen as a whole person, but rather as nothing more than a feel-good for the person who wrote that Facebook post. In fact, the runner in question wrote a very nice response.

Herein lies my problem with inspiration porn. I go to the gym regularly. I do yoga. I bellydance. I do swordwork. All of these things I would do even if I didn’t have a disability. Why? Because they make me happy. Yes, when I dance or fence, it is all about me. And I am good with that kind of selfish.

I *don’t* do these things to be your role model. They are simply things I do. I should not be treated like a puppy who just did a particularly clever trick. Inspiration porn does just that. It turns me into that puppy, waiting for a pat on the head, praise, and a doggy treat.

Inspiration porn takes away my agency to be a whole person who just wants to do the same things as everyone else without it being about my disability. Suddenly, I am “brave” and “courageous” every time I step outside my house because, well, I am not letting my disability stop me from doing so. At best, it is patronizing. At worst, it turns me into little more than some meme about how important it is to be brave and courageous.

Have I done some brave and courageous things? Yes. But simply sharing the public space with you is not one of them. Doing the same things as nondisabled people should not be cause to slap that sappy Hallmark card saying on me. I am more than that.

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Not Your Geek Science Project

Last fall, as part of my other not-so-secret identity, I was invited to be a panelist at Geek Girl Con up in Seattle. It should not be any shock to even semi-regular readers that yes, I am a geek. I will happily deconstruct gender dynamics in Sherlock or discuss how Bryan Fuller uses food as a metaphor in all of his work (and don’t think for a moment that I don’t have that essay already in outline form inside my head).

And, if you fell for that clever little bit of shameless self-promotion up above and clicked the link to see what my not-so-secret identity could possibly be, you will understand that I am equally passionate about making geekdom open to anybody and everybody.

Friday night of the con was a welcoming mixer at a local beer pub. Now, in addition to my love of Sherlock and the works of Bryan Fuller, I love beer. So it was a natural fit. I was introduced to the fabulous Elsa E. Sjunneson-Henry, who runs the equally fabulous Feminist Sonar blog. We got to talking over a couple of milk stouts about our shared experiences with being disabled and part of the geek community. She mentioned she was doing a Geek Disability panel the next day and invited me to come hear it.

Now, I will briefly digress here to mention that my past experience with those panels has been…OK, you remember science project day at school. You had to have some sort of science project to show to everyone else, and then everyone got to quiz you about it. Now imagine that — except with me as the science project. *That’s* my experience with those sorts of panels.

But Elsa was nifty, and I had one milk stout, an amber, and a pumpkin ale in me, so I agreed to attend.

I will admit to more than a little trepidation when I sat down for the panel. I was primed to charge into battle, yelling ” I AM NOT YOUR GEEK SCIENCE EXPERIMENT!”

And instead, I got thoughtful dialogue that ran the gamut from bad media images of disability (Glee, to which I have alluded in the past) to good ones (Flynn/Walt Jr. on Breaking Bad, played by an actor with cerebral palsy). We discussed cosplay and disability, and why we will side-eye able-bodied people who “crip-play” (again, I have discussed this in regard to the Cherry Darling cosplay from Planet Terror). Here’s a short write-up of the panel.

The entire weekend was full of random, amazing things. That panel was just one among many. Because yes, there were people I met with whom I could deconstruct Sherlock. But there were also people there like Elsa who would not be anybody’s geek science experiment.

Geek is where you find your passion, whether it be for Sherlock, or beer, or swords. That weekend, I finally felt I had found my geek.

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Update from the Coalmine

Back in September, I had blogged about feeling like a canary in a coalmine when it came to whether or not ObamaCare would work. Well, I am now back with an update. Yes, yes, it has taken a while for me to get around to it. But, as you shall soon see, there are good reasons for that.

I have spent the last three years searching for a full-time job. Not that I really relished going to work for somebody else, but that my need for insurance coverage necessitated it. I had no luck (insert grumblings about aging out of the job market here).

I applied for insurance for myself and my husband under ACA in mid-December, still not certain that I would be accepted. At the beginning of January, I was able to get myself and him covered for less than what I had been paying to just cover myself under COBRA.

About a week after that, in the midst of yet another fruitless round of staring at  job ads that wanted — to borrow from Portlandia — a “linkalist,” rather than a journalist, I had a revelation. I did not *need* to apply for that job. Or any job, really. With affordable insurance coverage, I could instead do what I really wanted with my career.

So here I am, two months into working for myself full time. I am happier now than I had been for the past three years. I have gotten in more work now than I had when I was just treating it as a stop gap until I found a “real job.”

There are a few bumps in this road (I am currently wrangling with my insurance company to get my Lyrica approved). Nevertheless, this is the road I am on, for better or worse.

And, to borrow from Robert Frost, that has made all the difference.

(Interested in hiring me as your academic/medical/STEM editor? Please visit my professional portfolio site at http://thatwordgrrl.com)

 

 

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