Monthly Archives: December 2012

Xmas Update

So my health is holding on by a string — as I posted when I found out, my latest drama is that my spinal column has decided to start breaking down. I’ve been asking around on the rare disease forums, because in theory Tubular Aggregate Myopathy is only supposed to affect skeletal muscles. But I’ve found that a good percentage of people report almost identical breathing and heart failure. With a condition this rare — it’s likely that I’m the only person in Canada being treated for it — the profile is really just best guesswork it seems. On a completely unrelated note, a couple days ago I was eating a seaweed salad when all of a sudden there was a terrible pain in the back of my jaw, and it felt like I’d literally split a tooth in half. I took an extra 400mg of morphine and swabbed on a quarter bottle of Ambesol and it barely took the edge off, so in the morning I was off to an emergency appointment at my daughter’s dentist for x-rays. This was rather terrifying because I have not been to the dentist in almost twenty years (I know, I know…).

Anyway, I thought I’d cracked the tooth, but it turns out that a cavity had formed in the wisdom tooth — miraculously the rest of the teeth were just fine. I must be some genetic mutant in more ways that I’d assumed, because given how often I have sweets before bed and don’t brush until the morning (if that, I’m embarrassed to say), my teeth should be wrecked, but they’re totally healthy. Anyway, off to the surgeon next door and out it came. Easy. For once something medical is easy.

In addition to the local anesthetic (a nerve block done in the roof of my mouth, which actually hurt more afterwards than the extracted tooth), they dosed me with a mountain of nitrous oxide. I got a lot because they had the nosepiece on my wrong, so it kept doing nothing, and they kept turning it up, until I realized the problem wasn’t the dosage but the application thereof. Once I was actually breathing it in, pow, off to the moon. It was a strange experience, and not just because I was insanely high from it. Strange because it’s the first time in many years that I’ve been conscious and thinking and at least vaguely aware and not been in horrible pain. It was nice of course to have that momentary reprieve — I’ve forgotten what it’s like to not have pain being the #1 thing that’s going on — but also bittersweet because fifteen minutes later I was back in the torture rack.

Anyway, as many of you know, the book is going great. It’s done, although I may still try and squeeze in one or two edits as I get feedback from the people interviewed therein as they peruse the PDF. I’ve emailed everyone in the book with a download URL. If you are in the book and didn’t get an email, please drop me a line and I’ll reply to you with a download link. I haven’t see the final hardcopies yet, although I did make myself a softcover version at my Lulu shop and am actually quite thrilled with it. This is it here:

Now, I do recommend that people wait until I get the final copy up, but for those who are eager to get a copy, I’ve decided to make these preview versions publicly available. Just remember that there may be slight imperfections in them, although quite likely the only real difference between these and the final copy will be a couple small edits and the lack of an ISBN number. Here are the links:

When the final version is up I will post again with that info, and you should also be able to find it on Amazon and other retailers. Sorry I didn’t get the final version up before year’s end as I’d hoped — at this point the timing is beyond my control. As far as the eBook, right now it’s for interviewees only, but there will be a way to get it soon. Most likely it will be in the member’s section of BME — since that’s where the book “came from” in a lot of ways, that seemed to make sense to me.

Other than that… I made this little Ganesha sculpture/statue for an “superstitious atheist Hindu” friend’s daughter. She (my friend, not her daughter) has given me a couple nice Ganesha statues from her visits to India, so I thought it was a good gift back. I just handed it over so I figure it’s OK to post.

I also made myself a little “Escape From Earth” 2012-apocalpyse sculpture. It’s a giant asteroid striking the earth and various spaceships taking off. From the US there’s a Space Shuttle, from Germany there’s an A4b (winged V2), and from Russia an N1. Not that any of those are going to save the day in reality but I felt like making them. Just for fun — not a serious proposal to save the human race from it’s guaranteed doom.

While cleaning up our old studio, a friend found in the garbage the clay blank for a ring I’d been designing but gave up on. He liked it a lot, so I finished it up for him with a coat of paint, so now it’s a sort of modified demon ring… It was fun to do.

And now some good news — I really didn’t think I’d be able to hold on until these holidays, but I have, I think in part due to being inspired by some photos that some friends (who incidentally are in the book) sent me from their visit to the Mayan Riviera. So tomorrow morning Caitlin, Nefarious, and I leave for Mexico… It’s going to be difficult physically, but I’m very much looking forward to it. I’ll be back at the turn of the year, so if you email me (for example, asking for the PDF link), I’ll most likely not be able to reply until then. So, thanks everyone for your support this year, and have a great holidays.

Fake me + Real me updates

In “real me” world, I had a big doctor’s appointment earlier in the week, the sort where I got to wear one of those barebacked robes that shows off my butt while a couple doctors prodded and examined me in various ways. It was good because it escalated me further up the various “expert” or “specialist” ladders — exactly the sort of people I need to be talking to in the hope that someone will come up with some long-shot therapy or treatment that helps treat the myopathy, or at least reduces the pain. Didn’t go that way though, which I’m used to as it never does. Every doctor that gets added to the mix simply confirms the diagnosis, agrees that it can’t be treated (but that they’ll “think about it” and consider who else we can discuss it with), and often throws another problem into the mix as well. This week it we first confirmed the progression of the nerve damage from my “tumor” (a benign bone growth the size of a tangerine, not cancerous so tumor isn’t really the right word I think) biopsy and removal, as that neuropathy came back after changing pain treatments a month or two ago, and that I have abnormal reflex response in my legs. None of that is particularly surprising to me, but I was surprised to find out that my spinal cord is degenerating, which is causing additional problems in mobility and generally being able to control my body in addition to the muscle decay itself. I am guessing that this nerve degeneration is part of what’s causing complications with my heart and breathing.

I hope I’ll have the interview book online shortly, as I already mentioned, but haven’t done as much on the memoirs as I’d like… I’m just having too much difficulty with writing. Writing this entry is a major struggle, and it’s just a simple “status update” rather than a reflection on my experiences that also needs to be engaging and enjoyable to read. So to keep myself going and not just doing nothing I’ve been making little sculptural “doodles”. I made a messed-up looking avatar (that’s the “fake me” world I guess), capped off (“brained off”) one of my old clay ring masters, and made a silly little fridge magnet face, among other things that aren’t pictured here… Zoom if you’d like.

Meet Tommy: Ready to Print!!!

So the book, Meet Tommy: An Exploration of Private Body Modification and Play is finally done and edited. Almost 450 pages in all. Well over a thousand pictures. 110 separate interviews and over a thousand pictures. A third of a million words of text. Large format 8.5″x11″. This project is a monster, and to be honest, it’s a sliver of what I wanted to do, but it had to be cut somewhere. At this point I’m just waiting to make final arrangements with the printers and the book will be up for sale. eBook will be out soon as well — I’m not sure what the distribution path for that will be yet so please don’t ask me quite yet. I’ll update everyone with all the details as soon as I know, but here’s the front and back cover, the table of contents page, and a massive thumbnail collage of the entire book. I’m sure I’ll keep making tweaks until the moment it’s submitted, but it’s a wrap at this point.