Dear Mr. Ebert:

(I hope you will forgive me this. I am not generally in the habit of writing letters to dead people. It feels just a bit awkward inside my head. But I need to tell you this, more for my sake than yours, I think.)

You probably don’t remember me. It was at a competition for student films. I was covering the event for my school newspaper. At one point, you rushed past me, almost knocking me over, and made a rather irritated noise at the shy college student who was preventing you from getting from A to B as quickly as possible. In that moment, I filed you away under “pompous self-important jackass” and went on with my life.

It is perhaps one of my shortcomings that I rarely revisit an initial negative impression I get of somebody. It takes something truly spectacular for me to change my mind in that regard. In your case, Mr. Ebert, the spectacular happened. You wrote an article about your medical condition and how you refused to hide yourself away just to make other people more comfortable.

I read that article. And it inspired me. It told me I was not alone in this whole visible disability thing. That somebody else understood. That I did not have to take shit from anybody just to make them feel better. But more than that, it told me that I was more than just my disability. You never backed down. You never gave up. You never quit. You just kept on doing what you loved — writing about your passion for films.

My one regret is that I had not the courage to tell you this before your death. In some ways, for as far as I have come in my life, that shy college student still remains. But I can say that were it not for you, I might not have worked up the courage to start this blog. To talk about my journey, just as you talked about yours.

May I be half as eloquent, passionate, and graceful as you.

May you be blessed and free from pain now, Mr. Ebert. And yes, I will save the aisle seat for you.

 

 

One Room. One Day

Those of you who know me from elsewhere may have heard me say this, particularly when I am having a difficult pain day. It is actually a shorthand for my metaphysical philosophy.

Life is nothing more than a series of rooms. What gives our lives form, function, and meaning is who is living in the room with us on any given day. One room. One day.

It is a reminder to me to live in that day. Not the next room over, or the one down the hall. That room on that day. And then the next room on the next day, and so on.

Because I do take these things seriously, I am planning that my next tattoo will be the phrase “One room. One day.” So that I always remember that today is just that one day. And tomorrow? Well, who knows?

Pain But No Gain

I’ve undergone a mess of pretty damned unpleasant medical procedures over the years, ranging from UV light treatment, to an internal biopsy, to cortisone injections. None of them are experiences I care to repeat.

However, this past week may well have been the most unpleasant yet. In an effort to determine if my chronic leg pain was due to nerve issues, I underwent a nerve conduction test. Yes, you read that correctly. I got electrocuted in the name of science.

Being somewhat apprehensive about the test, I did what most everyone else does these days — I asked the Internet. It responded in various ways, ranging from “not much worse than acupuncture” to “OMG, I was crying by the end of it.” Needless to say, the Internet was rather anti-helpful in this regard.

As it was, the test hurt quite a deal more than acupuncture. It even hurt more than when I got my tattoo. But I did not cuss a blue streak at the doctor, which is my first instinctive reaction to pain. Although Mythbusters says that swearing does help raise pain tolerance.

However, I was certain that I would get some sort of results out of this. Why else would I have done it? Certainly not for fun. But no, apparently my nerves work just fine.

On the one hand, I am relieved. Yet on the other, I cannot help but think that I went through all that pain, but with no gain in terms of getting any closer to an answer (let alone a cure) for my pain.

At the least, I now have a scientifically proven excuse for swearing at any more doctors who subject me to painful testing.

Oh if only it were true…

Perhaps the pharma companies could look into this? Just think of the profit they could make. Not to mention how fabulous we would all be!

When Honey Works Better than Vinegar

The old adage about catching more flies with honey than with vinegar is a perfect example of what is referred to in feminist/social-justice circles as the tone argument. From the perspective of disabled/chronic pain patients being told to be more cheerful or be less angry, this fallacy is certainly apt.

However, I’m actually going to argue in favor of tone, under certain circumstances. Your tone DOES matter when you ask me about my disability. A dialogue that opens with “OMG, WHAT IS THAT THING YOU’VE GOT GOING ON THERE???” is not going to go well. And yes, I’ve been on the receiving end of precisely that conversation starter.  That vinegar is not going to get a positive reception.

If, on the other hand, you start a discussion about anything but my disability, things will go much better for both of us. Let’s have a chat about your cute, friendly dog that has stopped to say hello. Your new baby out for a stroll. Hell, I’d even settle for you starting a conversation by discussing the weather. Any of those ice-breakers tell me that you are at least willing to see me as more than just a disability — a thing.

Granted, you may want to ask at some point. And that’s OK. We humans are curious creatures, and goodness knows I am a curious thing. I’m not saying you should not ever bring it up. But show some tact and thoughtfulness about it.

A little honey goes a long way.

On Infiltration of the Other

I had an entirely different post planned. But, as often happens in my life, something else overshadowed it. In this case, it was a discussion that took place on a friend’s Facebook page about this book, in which an evangelical Christian man decided to spend a year living publicly as a gay man in order to reexamine his beliefs about homosexuality. In this case, the friend asked if going undercover in a marginalized community in order to better understand that community was a good or bad thing.

Most people responded that they thought it was a great way to “walk in somebody else’s shoes.” Another mutual friend who is African-American brought up the earlier book Black Like Me as a similar positive example for the African-American community.

The general consensus seemed to be that even though Kurek lied about his orientation, which may have hurt some people in the gay community, the end result of him realizing that gays were not sinners outweighed that. And that the gay community eventually forgave him, so that seemed to make it OK. One person even noted that such an experiment was “a gift” to the marginalized community because now they could be heard and understood.

I noted that such “social experiments” may be productive for those communities (I cannot say for certain, as I am not a member of either), but when you have a community that already has issues with being treated as lab rats or test subjects, it becomes much more tricky. My attempts to point this out  were met with confusion, defensiveness, or outright attempts to explain to me why it was acceptable, regardless of what the Other might be.

Here’s the problem. People in chronic pain communities face constant disbelief from friends, family, and the entire health care system. For us, places where we can share our frustrations among each other and are not judged are a refuge from the constant barrage of being told it’s all in our head, it can’t be that bad, or that we are just drug addicts.

Some of us have been actual test subjects in real experiments. We have had to read IRB human subject testing statements and sign the accompanying consent forms. Being test subjects for an outsider to prove (or disprove) their theories is not a hypothetical for us. Nor does it necessarily end with hugs and forgiveness, a la Undercover Boss (a show I resolutely refuse to watch for precisely the reasons stated here).

There’s a great deal of very private things that get shared in the community. The notion of somebody else coming in, pretending to be a chronic pain patient, and hearing the sorts of things we would never tell our friends, families, or doctors, really is a betrayal. And at the end of the experiment, the infiltrator is not going to “reward” us by removing our pain (see above about Undercover Boss).

As a chronic pain patient, the very thought of somebody using me as a subject for their social experiment makes me furious. We are real people. We are not part of your experiment. We don’t need the benefit of your “gifts” (wow, patronizing much?). We are, as the title of this blog says, not your teachable moment.

What a shame

There are days my life is like something out of a sitcom. Or possibly an absurdist art film. Where what happens to me is so absurd, all I can do is laugh at it.

Last week, I was working at a Starbuck’s coffee shop. Minding my own business. Just me and my laptop.

Suddenly, a full emergency rig comes screaming up, lights and sirens ablase. Four EMS guys pile out and barrel into the coffee place, presumably looking for somebody laid out on the floor in the midst of a heart attack.

Instead, they are greeted by the soothing sounds of the cool jazz playing over the speakers, punctuated by the occasional whirring of the barista’s blender as they are making up an iced blended mocha for a customer.

The EMS guys look around, somewhat confused. They ask the assembled masses, “Did anybody call for an ambulance? Somebody said there was somebody here with some sort of skin thing that looked contagious.”

Cue sound of crickets chirping. Nobody said a word.

Meanwhile, one of the EMS guys notices me, and determines I must have been the person for whom they rushed out on a hot day. The guy looked me up and down.  “You call for an ambulance? You OK?”

So I ended up having to placate four hot, grumpy EMS guys who got called out for no good reason. For something that was not my fault. And the person who called it in? Had not the balls to even identify themselves. Which left me holding the bag.

I became that unpleasant thing that must be removed, not unlike gum on your shoe. Worse yet, it happens in the name of Public Safety. Because we all want to be thoughtful of our fellow human beings, right? We want to not be so selfish and self-centered as to actually make other people sick, don’t we?

It’s a shaming thing. Shame on me for not thinking of others. Shame on me for being out in public. Shame on me for actually wanting to be treated with some basic decency.

Shame on the person who anonymously pointed a finger at me

Shame on them for quietly slinking away,

Shame on them for leaving me to clean up after them.

What a shame, indeed.