Handbook for the Recently Disabled, Part I

Finding yourself recently disabled? Gimpy? Crippled? Love someone recently removed from the ranks of the TAB (temporarily able bodied)? Well, you have come to the right place, Dear Reader. Here are some practical bits of lived in situations for yours truly!

The Handbook for the Recently Disabled will show up sometimes, with a handful of bite-sized pieces of advice I wish I knew or have observed along the way. YMMV (your milage may vary), of course. I am not a medical professional in any way.

First, enjoy this picture of Lucky, a tiny, tawny chi-wowow.

First off, no one is actually allowed to call you a cripple and be seen as a reasonable adult in the US. You can call yourself whatever you want. I frequently use words like that to refer to myself because language is a tool I wield wildly.

Remember to get your disability parking! Indiana gives out both plates and tags, but you need documentation from your doctor that you need it. It comes in two flavors: 6 months and No Expy. So check with your BMV or doc to find out what you need to do if you qualify. I needed proof from my doc, so folks that think you can fake it need to know the following: faking is more complicated than parking - why bother? Not like you will get to use a special spot anyway, read on!

Third, remember when you go out of the house this hard learned lesson: there is never enough handicapped parking. The days you need it the most, those paltry places are never sufficient. No, it is not worth it to get into a conflict with a person that appears to be parked illegally - if they gave a damn they would not have parked there in the first place. You have no authority, most shops and stores will not make someone move, and you are already having a hard time getting around - do not waste your efforts on assholes.

Everything has changed. Maybe you just need a cane, maybe you can only move your eyelashes, I have no way of knowing, Dear Reader. The newly disabled, me and some of mine included, found ourselves reevaluating every movement of every day. Spoon theory sums this up incredibly well. Figure out what you must do, what you need to do, what you desire to do and prioritize as you see fit. 

Lastly for this piece: know your help. For me, help came mostly from family and a few close friends. Be honest with yourself about who you can really lean on and trust with your health, your emotional well being, and your business. Depending on your life and people, you may place a lot on a few or try to spread it out depending on the strengths of your folks or your trust. Some folks will let you down, be prepared. But be ready to be amazed, surprised, humbled, and deeply gratified, too. Folks will surprise you: users will disappear in puffs of jerk-shaped smoke, and some will leave you wondering how on earth you earned that kind of dedication and love.

GimpyGamer: XBoxOne and Motion Wut?

Yesterday (5/21/13) I sat my complicated self down in front of the XBox One console reveal. I am a video gamer. I am also a mom, a wife, a girlfriend, a gimp, a member of the LGBT/QUILTBAG community, a mom of someone in the QUILTBAG community, a liberal (if we must), a franchise wide Halo fan, a person at the beginning of the middle of ages, I contain multitudes but let us get to the geek!

I liked a lot of what I saw, and I gave them room to save most of the sweet game reveals for E3. There is an industry show for that coming up soon, okay. It looks like Microsoft is really taking the dive to make the XBox One the ONE CONSOLE TO RULE THEM ALL. Not the other consoles, I mean, but to RULE YOUR LIVING/FAMILY ROOM!

And it wants to get your ass moving.

Here is the thing: gaming is a great pastime for some folks with disabilities. In particular, it allows for a time of virtual/physical competition that people with mobility issues really cannot get anywhere but with video games. When a game is really engaging, really immersive, you tend to equate the physicality of your avatar/silent protagonist/franchise space marine/sprite with your own. Just watch a handful of gamers sit together and play and watch their body language, not just before and after but during play

The reveal, and the industry in general, has me worried that as we progress along the motion control future, people like me are going to get left out in the cold. It is hard enough some days just to hold a controller, why must everything be swiped and pinched and snapped in big gestures? In a big way, this is what I got into gaming to avoid. I appreciate motion sensing in general - it lets my decrepit self work with a yoga section of a fitness game and a meditation game pretty well.

I want to shoot for the big snark target and say that if gamers wanted to be physical, they would go play goddamn sports outside! But that is not, and has never been true. Exercise and adventure games are great for kids in neighborhoods where maybe their parks are not as safe as they should be, exercise games let a lot of us that would feel awkward for a whole host of reasons in a gym participate in guided exercise, and sometimes it is just good in general to get off the couch, if you can.

The mandatory motions in tablet and phone games, the movement wands and cameras with consoles, the mandatory twitch skills raiding now requires - they could all start freezing out this small contingent of geeks to which I belong: gimpy gamers. Just keep us in mind, gaming industry. Sometimes it is hard enough to work a keyboard or a controller or a wand. Let us continue to play, too. Thanks.

Is there Cake? I Was Told...

Or: Is diagnosis fatigue a thing? I do not want another thing...

Do not be surprised if posts that are not particularly timely start showing up as I attempt to clean up my drafts with a “put it up or dump it” eye. Except the Angel Pillows piece. It makes me shudder, but I need to do it.  Sometime. Dammit.

I have to do something to not feel useless sitting in my office chair to re-situate my SI Joint Dysfunction. That mostly looks like doing nothing and can rapidly deteriorate into actually doing nothing. Well, or what other folks might call nothing but I call Internet Rabbit Hole/Tabspolsion Learning Time!

I recently realized that after the first couple diagnosis I received, after the first couple of dozen prescriptions and recommendations and all of that - I stopped being Super Learning Gimp. I did not just quit caring, but it got kind of numb. Whatever. What does this mean? What do I have to do? What do I have to take? Will it get better?

Is there like, cake, for people that get long lists of unspecific symptoms diagnosis? Because I am really hoping there is cake because this fucking sucks. I did plenty of testing, where is the cake?

Come home and say “looks like they think I have blargity blarg.” They ask what they can do at home, because my family is awesome, but they kind of get the blank slump I get now too. Then we just kind of sit and commiserate in the suck for a little bit and move on with this new word in our lives.

Ask the pharmacist to check for interactions because I can fucking care less at this point. Sure. 

Wait for the referral call for the specialist which will do one of two things: tell me they cannot help me and bounce me back to my GWP, or start running tests and writing more Rxs and suggesting life changes. Whatever. All of which I will heed, it is just rare to care about it anymore. Or maybe not care, but have an emotional reaction other than the mild cry I am sure to have that night.

Which is why I hardly ever mention the recent (months ago) IBS thing that came up. Yeah, my body party was not rocking enough, you know? Heh. And I lost coverage just as that was getting started, so I have an Rx and some advice on life changes and that’s it. Other than what it does to my every fucking day and life in general, it’s actually kind of hard to care about it specifically, at this point, you know?

Seriously, where is the cake?

What is this morning? Lupus flare? Fibro spots giving me daggers today? Tesla coil -esque electric charges up my back? Joints upset over the lingering weather pressure border turning my Human Barometer status into a nightmare? Can I stay more than 15 feet away from the bathroom today? This week? Do I have spatial coordination today? Will I need my cane or my chair if I have to go out? Can I go out if I have to go out? What is the definition of “must” today? How are the headaches? Big today?

What is an adequate day under these standards?

Take up the standard "dress to play even if you know you will be on the bench." Get dressed every day, because not is a tacit acknowledgement that the world spins without you, and even on days you are okay with this fundamental fact, other people expect you to be as not okay with it as they are with the idea regarding themselves.

Fucking hellooooo! Where is the damn cake?