The Fault In Our Stars

I am able to do some odds and ends around the house today, so I give to you my Goodreads review of #TFioS as a meager offering. It feels good to post more often, and I am doing my best to do just that as I can. I want to delve further into this book regarding disability, chronic pain and other issues here soon. Right now we are still passing it around at home and starting some really good discussions together.


The Fault in Our Stars by John Green
My rating: 5 of 5 stars

Thank you, John Green for a great book, and a piece that my daughters and my menfolk and I could all share. Thank you for the community and other efforts you and your's maintain and nurture.

As I was reading TFiOS, I could have sworn that a Spoonie wrote it. I could have sworn that the author must have personally experienced certain health events to have written them so well. Some of the specifics of being chronically ill, of disability, of unrelenting physical suffering are very well described - along with the emotional, familial, and social baggage it can bring. Unlike most works that deal with these issues, this is not made the center of the universe of the characters, which is a welcome uniqueness.

I recommend The Fault in Our Stars highly, but to enumerate why would be to take apart something you should be able to enjoy whole first.

So far, half of the Family here has read it and we all are very taken with it. It has sparked ongoing talks about exactly what constitutes Young Adult fiction - in a content sense, not in a subject sense. What happens to the characters in here happens to kids, and it is handled in what feels like a very real, honest way.

We will discuss this book here at home for a long time, I think, and that is a great thing.

Note: this was written on a brain fog day. Please pardon the irony of a review that is itself so poorly written for a book that is so well formed.


View all my reviews

Fuck Fair: Favoring the Injured (On Safe Space)

There are a lot of places that need your time today, thank you for spending a moment or two here. Please see the Red Cross if you want to help out Moore, Oklahoma. They will need your help for a long time coming. So if you could not donate the first time around, like me, keep them in mind for when you can spare something to help, please.


A “safe space” is a convention where a chat room, a comment thread, a blog, or what have you is considered more safe than the average Internet site for expressing thoughts, experiences and conversations regarding societal oppression, patriarchy, or other designated topic, grouping of people, or sharing of an idea.

Safe space is not about not getting hurt. No one can police for everything. It is knowing that you are in a space where it is safe to get hurt.


There's no OED for social justice, so we all need to spell out what we mean when we say things like "safe space." I have to be honest about conversations here: I cannot promise folks will not get hurt. Somebody is not going to know "g*psy" is an insult or that a band name is triggering or whatever. I do understand that sometimes genuine mistakes get made - and I will judge those as they occur. We are people, mistakes get made and when your wounds are out they sometimes get opened.

I say this again: fuck fair, favor the injured. In the rest of the world, people with privilege are actually fucking privileged and can have their say as they will. A safe space puts the dis-empowered on the at least the same level, with the same expectation of opportunity to speak, to be, to live.

You give people space, let them know you are there, you listen when they are aggrieved. You care. You do not just let them know that you care, you fucking do it. Give other people reason (since the injured party should never need to) and opportunity to apologize and maybe even go learn more and be a better person. I give the injuring the opportunity to grow in a way that is not hurtful to the injured... And if they do not take it, fuck ‘em.

Bigots and cads and shit stirrers get tossed. Here, that is by my discretion alone at this point. Mistakes among the rest of folks means giving genuine opportunity for real recovery, and for folks learning - really learning, real space to do that too. Probably not together, though. But they voices dimmed out there are favored here, and that is that.


Finally, if need be, I am comfortable asserting that I Am The Bitch Boss Here if needed. A lot of this is hard to put down in solid rules or guidelines. If you are here, then you have decided to trust me as the arbiter of that. I am perfectly comfortable with the fact that you can go almost anywhere else and say what you want. More power to you, as if you need it. I stand (sit) behind what I have written here and elsewhere on the subject.

SSI: Not Enough for Rent

I already had an article ready for today, and then this showed up in my Inbox:

Study Finds Average Rent Cost Higher Than Entire Monthly SSI Payment of Many with Disabilities via Disability.Gov.

So guess what I want to talk about! You got it...
Please feel free to take a moment to recover from the shock that SSI payments are just not enough to live on. Are you okay? Want a drink? A towel? A fainting couch?

There was recently a cost of living increase, by the way. Heh.

Besides finding some clever ways to say “fucking duh,” I really do not have anything to add to the facts of the matter. Well, I will say that it does parallel my lived experience.


It is difficult to complain when I feel damn lucky just to have the system to work at all for me.

Politics matter: you need to remember this when you hear that the Administration has put SSI back on the table as a gambling chip. You need to remember this instead of calling the people against it “emo progs.” You need to remember this when you visit your relatives trying to live a life on money that is not even rent. You need to remember this when the language of “makers and takers” gets louder again (and it will).

You need to remember that we are part of the 47%. We did not want to be here. We did not get here on our own. We did not decide to injure or sicken ourselves so much so that we could get a check that would not even cover basics.

This leaves us no room to do or be anything other than disabled.

Remember us.

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?

Sharing

I love to write. I love to read. 

These have been true for all of my life that I can recall. When that was taking away from me for a while because of The Incident, I was inconsolable. I was inconsolable about a lot of my losses, but the names of my loved ones and reading and writing were the top of that list. Buttons, shmuttons. I have clawed a lot of that back, and I am both proud and grateful for all the help that my loved ones offered (and offer, they rock).

I really dig blogging. Hell, I have left a LJ path behind me that has at times been huge. I dig reading blogs, looking into you as you do into me.

Every time I pick up blogging again, it is for a reason. And I find as that reason passes or I have done what I can with or about it - I start to write really personal things about living my life.

Those get left in the draft folder and or deleted - although every once in awhile I will share one. And you respond by reading it a lot. Which is great.

It also happens to scare me to death. 

That article on wheelchair etiquette is born of a thousand indignities suffered by me and other people. I try to imagine the folks that visit it, and I think it appeals more to folks in chairs that need a release than maybe it does to the able-bodied. The sharing of those indignities, in my particular way, seems to have helped some some bodies out there. I think I want to do more of that.

I have been hesitant  though, most of the time, to really peal the skin off and show you, J.D. Ballard style, the workings and brokenness underneath.

I think this has to change. I have decided to write. To be. To share. To be more vulnerable. Maybe to YouTube. 

To dare to do enough to risk being wrong. In front of you.

I am not so much inspired as I am tired of the shell I have insisted on living in for my own protection. I am a big girl and I can handle getting hurt. Hell, pain has never really been the deterrent for me that it is for most folks. I am not coming out all Bob Flanagan, but something closer to that than where I am now.

Struggle Days

Lately, I have more struggle days than not. A struggle day is when some symptom, some part of something out of my control makes the day harder than it should be. Sometimes it feels like a victory to see the end of one day and the beginning of another. Now, I do believe that in general, but I rarely actively feel it.

One rabbit hole that has made this last set of struggle days better is the Green Brothers. Crash Course, Vlogbrothers, all of their efforts. They are amazing. I recommend pretty much everything they do as far as I can tell. I knew John Green was on my computer before, and I could not remember why until I saw him talk about being on PotUS's first G+ hangout.

Another was Yo Is This Racist, which you can enjoy here. 

The Buddhism thing is moving along at a pace. What is helpful is that so far there has been nothing I have learned that has contested my own standards of honesty, compassion  and trust - while I do not always meet those as I would like, there they are just the same. The Boyfriend and I went to a weekend local event and it went well. I had a crushing moment of vulnerability and moved through and with it rather than pretending it was not happening, or taking it completely private.

I am trying to live more honestly, which brings up the vulnerability thing again, which I am experiencing quite a lot of lately (even if I need spell check to tell you that!). That means shedding the facade of not being in chronic pain. This is awkward, because good people are made uncomfortable by people in pain - they want to fix it for you, bless 'em. And they just cannot, which makes them feel bad. Now, I do not mean griping about it all the time, I just mean being honest when something hurts a lot, not hiding the signs of pain as they happen, and just going with whatever I can do every day: if it is just to get my ass dressed and sit and be with folks, or head downstairs and do some crafting or minor sewing (I love making actual things that can be held or given.)

So here I am. I hope you have been well.