Tag Archives: disability

Going to the chair

We bought me a wheelchair this week. The reasons are entirely practical and it doesn’t mean I’ve gotten worse. When we go to Disneyland, we won’t have to worry about whether rentals are available, for one thing.

Wheelchair

Yesterday Paul and I went to the Tim Burton exhibit at LACMA. Without a doubt the chair saved my energy pool from going really seriously overdrawn. Of course there were issues I hadn’t banked on, mainly art and signage I had to crane or twist my neck to look at.

There’s other, less tangible things I have to figure out. The loss of agency when I get into a chair that someone else is pushing is really jarring. I asked my husband to let me do the “excuse me, coming through” thing even when he was pushing, since it felt so weird sitting there passively while he did all the work. Which is the whole point of getting the wheelchair in the first place, to save me energy, so I need to get used to it.

It felt more normal to wheel myself when we were going our own ways in the exhibit, but you know what’s more nerve-wracking than getting used to controlling a wheelchair? Doing it around a zillion people and extremely expensive works of art. Good thing I usually like a little trial by fire. I’m happy to report I don’t owe LACMA any money, nor medical expenses for any other patrons. Next up: wheelies.

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Anniversaries

October and December have parallel anniversaries for me, one set that is joyful and the other, not so much.

This October is the fourth anniversary of my diagnosis with CFS. And December will be two years since I had to stop working, which is how I mark the beginning of my disability.

December, though, is also the month when I met the man I was going to marry, eight years ago, and October is the month I married him. It will be three years on the 27th and it still feels like I just met him.

What’s the significance of the parallels, or all these numbers? Nothing, really. I didn’t have a good handle on my topic for this week, and I made a last-minute decision to ask someone I admire to do a guest post. In the process of asking, it just occurred to me that not only has my favorite season arrived, but it’s also “anniversary season.” I also realized the other day that in two years it’ll be a decade that we’ve known each other, and our five-year wedding anniversary. That’s kind of a nifty, satisfying coincidence, numerically speaking. (Not numerologically speaking. That’s just silly.) So I thought I’d mention it.

It’s natural to mark the passage of time, but I don’t tend to get maudlin over the medical anniversaries. I just note their arrival, think about it for a bit, and move on. I do tend to get maudlin over my anniversaries with my best friend and love of my life…because in the end, what he’s brought into my life is much greater than what the CFS took away.

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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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