Weekend sendoff: What’s going on and coming up

I was planning to post something this week, but it’s going to go up next week instead. It encompasses gaming, biology, creationism, and Pharyngula, and it’s also substantially longer than anything I’ve posted here yet, so I hope you look forward to settling in with the (as it turns out not very) sordid tale.

There’s been a lot of other fun work. I’ve been preparing for another “Speaking Up” spot on Skeptically Speaking on Friday, August 20th. I also wrote two articles for AbleGamers, one about a patent for Microsoft’s new Kinect gaming system that included the capability for sign language (which was later reportedly dropped from the project), and another about how the strength of the PC market positively affects disabled gamers. Although I don’t have any real experience in market research analysis, I found that applying critical thinking to the data in the latter story helped a lot. And if you missed my post about my adventures in pudding…well, there’s probably a better way of phrasing that, but I promise it’s fully SFW.

And then — scroll down to the flyer — there’s this neat party happening practically around the corner from where I live, in Hollywood, on Saturday, August 21. The IIG are a great bunch of people, and I really hope to celebrate with them…and with you too, if you can make it!

I would like to send you off with this week’s CNN spot about the AbleGamers Foundation. It’s short, and it nicely spotlights the work that Mark and Steve are doing, which I’m proud to have the opportunity to support. Have a great weekend!

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Posted in Blog stuff, Disability, News, games, science, skepticism | Tagged , , , , , , , , , , , | 1 Comment

Weekend sendoff: I’m too lucky

Because for the most part I’m surrounded, online and off, by people who are accepting and understanding of what’s happened to me, whether or not they even knew me before I got nerfed. And for the most part the silly or ignorant things that are said to me come from well-meaning people who are trying to be kind or polite. So it can be easy for me sometimes to forget that malicious prejudice against invisible illness really exists.

I thought this Skepticblog post by Steven Novella about a controversial treatment for MS was very interesting. For one thing, it reminded me of CFS “specialists” such as electrical engineer Trevor Marshall, who somehow manage to be the only person to discover a miracle treatment. In the case of chronic cerebrospinal venous insufficiency (CCSVI) in MS patients, the specialist is at least a physician, but that doesn’t necessarily make his setup any more legitimate.

I feel empathy for MS patients who are anxious to learn about a potential new treatment or even cure, but I also feel a sense of recognition with the potentially (or likely, according to Novella) premature clamor for this treatment. It’s very similar to the CFS patients who are getting themselves tested for XMRV — a test that is still not covered by insurance, but is in at least one case administered by a lab with connections to the institute that did the original study — or even treated with antiretroviral medication.

The part where I’m lucky comes in where I commented briefly as much on the post, which was met by two ugly responses by someone who can generously be called a troll. Yes, I do recognize that behavior, which according to the rules of the Internet mean I shouldn’t be upset by it. And I should deplore the outpouring of scathing responses as “feeding the troll” rather than taking delight and satisfaction in them. Yes, I was being a thin-skinned noob.

But what bothers me isn’t this particular person, really. It’s the general reminder of how people with chronic and mostly invisible illnesses are actually viewed in many cases. “There’s no evidence,” the troll snarked, because mostly we don’t look sick. As stupid as that sounds, and as obviously as this doucheturkey just wanted to garner attention, it is the reality for many patients much less fortunate than I am. When you hear of someone with CFS saying she wished she had cancer instead, it may sound shocking, but I can’t say I blame her.

Now that I’ve bummed you all out, I’ll send you off with what may be the best video ever. EVER. Paul sent this to me a couple of days ago and I cannot stop watching it. EVER. Prepare to die of cute, and then have a great weekend.

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Posted in CFS, Disability, Health, science, skepticism | Tagged , , , , , , , , , , , , , , , | 3 Comments

Newly Nerfed has a birthday

One year ago today, I launched this blog. I’d just been through six months of wondering “What the hell do I do now?” I was paralyzed, demoralized, and utterly frustrated by having had to give in to my disability and quit working. It didn’t help that the job I quit was the best I ever had, but it also didn’t matter. A really big, heavy door had just slammed shut on a really big part of my life, and I was forced to examine my new situation and my new identity.

While beginning to work this out, I dove headlong into the waters I’d only been treading up till then for lack of time and energy. Skeptical blogs and podcasts began to fill my day, and my Twitter stream became more and more populated by other skeptics. I revamped my Facebook page so that I could keep up with the discussions happening there. At first, my appetite was modest, but the more I consumed, the more ravenous I became. (Skepticism as subtraction soup.) I put myself through a serious skeptical bootcamp that was nothing but fascinating, educational, and exciting.

I love to learn, and although I couldn’t work, I could still do that. The skeptical community offered a place for me to do grad-school amounts of reading and synthesizing information, not to mention daily interacting with intimidatingly smart people who wanted to use critical thinking to make the world a better place. It was inspirational, revelatory, and ultimately showed me an alternative to my feelings of helplessness and, worse, uselessness.

I didn’t intend Newly Nerfed to be a skeptical blog. I thought it would focus more on the things I do still write about a lot, disability and chronic illness and nerdy stuff like games and movies. But it proved to be impossible to leave the powerful new focus in my life out of this blog. I connected so strongly to skepticism that I wanted to write about it, even as a neophyte. And the rest can be read in my posts.

When I started this blog, people were talking about TAM 7. Fascinating, I thought, but I couldn’t see myself at that kind of conference. Surely it was for the professors and physicians and scientists I’d been reading, and not for someone like me. And then a year later I was discussing the effects of James Randi’s public and vehement support of science-based medicine during his cancer treatments…with James Randi.

I can’t even begin to express how much TAM 8 meant to me. I had every kind of experience you hear about: meeting “old” friends for the first time, meeting new friends for the first time, having practical discussions, having meta discussions, learning things that are directly applicable to my interests, having my mind blown open by new ideas, meeting heroes and having actual discourse with them, and laying the groundwork for future projects. I came away from TAM wonderfully energized with plans and schemes for the coming year (and with gratitude for the luminaries who kindly allowed me to ambush them with an idea, and for their support of that idea).

A year ago I didn’t know what to do. I held on to my passion for learning, for making a difference, and for writing, none of which got hit by the nerf bat. And then I found myself in a community of people who shared those passions, and I’ve started to find my way. I am so grateful for this year and the incredible people I’ve met and worked with (and will work with in the future). I thank all of you so much, skeptics and believers, friends and strangers, for helping, teaching, and of course entertaining me so damn much this year. I especially want to thank “Surly” Amy Davis Roth and Desiree Schell for their early encouragement of an avid but nervous noob, and Daniel Loxton for being a role model of skeptical communication to which I continue to aspire.

Most importantly, I thank my husband Paul. Not a single step on this wonderful journey would have been possible without his love, care, and support. Throughout everything from health woes to skeptical successes, he has been unswervingly by my side, which I assure you is not always an easy place to be. None of what I’ve experienced, learned, or accomplished this year means anything without the joy I take in having my best friend and twu wuv to share it with. He challenges me to be better, and accepts me when I fail. And I mean, he’s a skeptical atheist gamer geek who can kick serious ass in meatspace — did I win the lottery or what?

Here’s to sticking around for year two. I appreciate it.

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Posted in Blog stuff, Disability, Geek stuff, Health, Life, skepticism | Tagged , , , , , , , , , , , , , | 7 Comments