I’m Just Me

We are going to visit friends over Memorial Day Weekend. Our friends with whom we are staying have two young girls. As they have only recently moved to California, we have not met the girls before.

Their mother contacted me today for advice on how to handle the potentially thorny issue of what the girls might ask when they meet me for the first time.

I actually find that most young children are pretty easy to handle in this regard. I have a pretty standard script I run through:

Child: Why does your skin look like that?
Me (with a smile): Well, why is your hair brown/blond/red/black?
Child: I dunno. I guess it’s just me.
Me: Well, my skin is like that. It’s just me.

And then we can proceed to more important matters, such as what the child is going to dress up as for Halloween, or what they did at Disneyland last weekend. And the mortified parent goes from mortified to grateful. I’ve gotten more than one mouthed “Thank you!”

One little girl fished a small, pink, plastic, glittery turtle toy out of her pocket and presented it to me as something she got in a birthday goodie bag at a friend’s party. She told me all about the cake and the balloon clown. When I handed her back the turtle as she and her mother were leaving, she insisted I have it because it matched my hair (I was sporting giant fuchsia streaks in my hair at that time).

I only wish grown-ups were half as understanding as that little girl.

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Of Fakers and Concern Trolls

Last week, I was having pain issues, so used the handicapped parking spot. A guy (we will call him Concern Troll, because he was SO CONCERNED that I might be gaming the system) came up to me as I got out of the car.

Concern Troll: You can’t park there! Only people with handicaps can park there!

Me (reaching back into the car to pull off the handicap placard to show him): You mean, like this?

Concern Troll: But how do I know you aren’t faking it just to get a better spot? I read an article about it online somewhere, that people are getting fake handicapped placards!

Me: Sorry, forgot to wear my Team Faking It jacket today

Concern Troll: Errr…

Me: Well, then I guess you gotta take my word for it.

I don’t necessarily look like I would need a handicapped placard. Most of the time I don’t. But if I am having bad pain flares and my choice is between a handicapped spot or walking some further distance in excruciating pain, I will use the handicapped placard. No, I don’t use it if there is a regular open spot next to the handicapped spot. But there are days when I have no choice.

So this notion that I must be faking my pain because I don’t fit people’s idea of what pain sufferers are supposed to look like just…baffles me. Yes, I have the tattoo, piercings, and anime!hair (currently purple and fuchsia streaks). I am far more likely to be seen in geeky t-shirt, leggings, and my beloved purple, floral, satin brocade Chucks than in business clothing (one of the MANY advantages of working for myself). Does that somehow scream “TOTALLY FAKING THE AGONIZING PAIN FLARES!!!” What should I have worn to alert Concern Troll that I actually had a legitimate need for that placard?

Here’s the thing. The only people who get a legitimate say in whether or not I qualify for a handicapped placard are my doctor and the DMV. Since they seem to have taken my word for it, the fact that Concern Troll thinks otherwise really bothers me less than it might otherwise.

And really, it was *just a parking space.* I was not robbing a bank or kicking puppies. I was simply parking my car. Surely there are bigger issues with which to be concerned than whether or not I can park my car in a handicapped spot?

Pain doesn’t have specific identifying features that make it easy to spot. Neither do I.

 

 

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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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