“Are you OCD?”, My friend D asked, as she pushed my remote 2 cm more to the left.
“What?”, I said. “No.”
“Well, you’re kind of particular, aren’t you?”
“Dude, I can’t believe you’re asking me that. Seriously. You’ve known me, what, 10 years? Have you always thought this?”
“I don’t know, I guess. You’re just so… precise”.

OCD? Really?

And so began my explanation as to why the remote needed to be moved 2 more cm to the left; because my tongue, long and dexterous as it is (and believe me, it’s taken many years to get it that way – the dexterous part, not the length, though maybe that too), wouldn’t be able to reach the upper keypad. Hello.

And that’s only part of it. But I suppose before I go any further with the significance of those particular 2 cm, I should set the scene – the back story, if you will – so you’ll have a better understanding as to why it’s not an example of OCD, but rather a simple situation of high quad ergonomics.

To begin with, the modern world is not designed with quadriplegics in mind. Sure, some things are better than others, by intention or chance, but by and large it’s a world shaped for the upwardly ambulatory and dexterously proficient i.e. the walkers and finger users.

If I want to function/participate in this world I need to be creative and diligent, establish a new feng shui, and reshape it to fit my own unique needs. Mostly it’s with nuanced, finely focused tweaks, while other times less so, but it’s always with the understanding that customization could/will make a difference. Which is to say, stock stuff probably ain’t going to cut it.

Now, this is nowhere more true than when I’m in bed, where D asked the question, and where, like a NASA astronaut in a single man space capsule, I’ve shaped my environment down to the millimeter in order to maximize my independence and functionality.

The capsule’s layout:

Quadriplegic adaption layout

So on my back, to the right of my head, are two captain’s cups filled with water and a bendable straw, they are positioned in a way so that I can not only reach both for drinking but to see my MacBook Pro screen between them — too high or low in either direction and my vision is obscured. On the left side of my head are my phone clicker (I lean on it to answer calls), my cell phone, my front door opener and a couple of remotes for controlling my AV system. All of these need to be positioned precisely, not a centimeter off in either direction, or I’m unable to reach them with my Gene Simmons like tongue.

And that’s only the half of it.

Above me, attached to a swingout arm extended from the wall, is a digital projector which points at the ceiling, allowing for a more comfortable experience while writing or using the computer than turning my head to the side. There’s a microphone above my face for dictating text and working on music, and I’ve also figured out a way to fold my blankets so that I can pull them up or down or get my arms in and out as needed.

All of this, of course, is rendered mute if, well, you know, I have company, but you get the picture. From a stationary spot on my back — to continue with the metaphore — I can reach all the necessary buttons, switches and levers for a successful solo moon landing or safe reentry back into our atmosphere. In other words, it’s a well thought out, measured system, developed over years of trail and error, that allows me the greatest independence possible.

So why have I felt compelled to explain all this? Well, first just let me say it’s not an ego thing, because whether or not my specificity is mistaken for neuroses, really doesn’t matter. No, I’ve felt compelled to explain all this because it speaks to the important subject of awareness, and how our own particular awareness (if there really is such a thing) contributes to our myopic perception of the world around us and how we might construct it.

Don’t get me wrong, I’d love it if the able-bodied majority around me was more aware of my own particular “needs” as a quadriplegic — that would be great and a whole lot easier — but I don’t expect them to be. And I certainly don’t expect the world to be shaped or perceived in the way a quadriplegic does …at least not yet anyway.

No, the way I see it, until awareness and consciousness absorb myopic perception and action — including my own — a little education, persuasion, ingenuity, duct tape and, yeah, perhaps a little specificity on my part will have to get ‘er done.


4 comments on “i’m not OCD, i’m an astronaut

  • /bouncing up & down saying YES YES YES and chopping the air with every word/

    Thanks to homecare nursing, I got early training in this concept of customizing the environment to maximize autonomy within it. Thanks (urg) to CRPS, I’ve become utterly dialed into the idea that the person with a longstanding condition is THE subject matter expert on how they should handle the condition.

    You put this so well, and so totally free (of course) of judgementalism or didacticism, I’m wondering if I could get it included in my old nursing school’s curriculum. Shall I try?

Leave a Reply

Your email address will not be published. Required fields are marked *