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.

Nevus of Ota totally looks like eyeball tattoo

I have to admit that I’ve really been enjoying my scleral tattoos / eyeball tattoos from a purely narcissistic point of view. When I’m out in public, the small percentage of people who’ve said anything have been universally positive, with either amazed (or flirty) versions of “you have the most amazing eyes I’ve ever seen”… It’s hard not to enjoy that flattery. But what’s interesting to me is that assuming I don’t just say thanks and be done with it, but instead mention that they’re tattooed, that usually surprises (and sometimes disturbs) the person. So that’s really fun too, to know that people assume it’s natural. One person has told me they thought it was some kind of strange contact lense, but I don’t think many people make that assumption with my eyes, although I suspect it’s common with people who have more solid eyes, especially all-black eyes.

Anyway, as I said most people assume my eyes are natural. And what many may not be aware of is that there’s a condition called the Nevus of Ota, which is sort of a birthmark/discoloration (although sometimes they don’t appear until puberty) that often affects skin, but can also affect the eye and is often actually limited to the eye. It can look a lot like my eye in fact. Here’s a collection of random images of that condition to compare. The top row is my eye, and the rest of people with the medical condition. Click to zoom of course.

By the way, usually there isn’t any risk or damage from this condition, although in rare cases it is linked to melanoma or glaucoma or intraoccular pressure increase — it’s really just a matter of whether it bothers the person aesthetically. There are some treatments for removing these color spots, which actually is making me reconsider my proclamation that eye tattoos are 100% irreversible. Let’s move that number to 99% perhaps. These have been treated by laser and other therapies very successfully and I suspect that some of that could be applied to voluntary scleral tattooing as well — and if you can laser these off, perhaps you can laser off a tattoo on the eye as well.

One of the ways I was able to assess some of the safety/risk factors to eyeball tattooing was by reading everything I could find on conditions like the Nevus of Ota, conjunctival tumors, and so on, because in some ways eyeball tattooing is essentially inducing aspects of these conditions, so by understanding the way the body handles one, we can make predictions about how it’s going to handle the other. If you want to gross yourself out, here’s a gallery of pictures of diseased eyes of various sorts — you can then google the terms that are relevant and open your mind.

Two pieces of sad news

I wanted to copy these two entries from ModBlog. I’ve been working like crazy on finishing my books. Things are going well on that. Both of these stories were very difficult to have to post about, especially Manny’s, not just because of what a warm and wonderful person he was, but because I can relate to his end of life struggle with an incurable and unpleasant disease.

RIP ManWoman

This morning at 4:38AM, the beautiful artist and [best] friend of the swastika ManWoman passed away peacefully after a battle with cancer. He lived a passionate and revolutionary life, and his impact on this community continues to grow. Thankfully after seeing his life’s work vindicated and bringing joy and open eyes to more than he ever could have imagined when it first began, he found himself in the terrible position of having a painful and debilitating disease with no cure, and he made the decision to stop treatment knowing it would mean the end of his suffering within days. If you see a swastika, that symbol of light and love, tattooed on someone, you can thank Manny. All of the spiritual and geometric tattooing that is exploding today owes his efforts a great deal of credit and thanks. Although he was often unknown by those he helped transform both physically and spiritually, like some benevolent and hopeful puppetmaster bard, he touched almost all of us in one way or another, and was one of the most influential guides in this community.

Manny was one of the few universally respected wisemen of this community, and his passing will hit a lot of people very hard and he will be deeply missed.

“I like to think that God is dreaming and we are the dream. I wake up in the morning and I say, gee, that was an interesting dream, but you know what? I’m gonna wake up from this life when I die and go, boy, that was an interesting dream! And I’ve had a really interesting life.”

But even though Manny has passed, he lives forever in not just his art and the retelling of his own story by others, but he lives forever in the millions of tattoos that carry his message and a small part of his soul. Manny cannot die, because his passion and his ability to inspire others to make the light he rediscovered a part of their lives as well gave him immortality.

In the video above are some of Manny’s final thoughts, recorded at the start of November, and below is a picture of my family with Manny’s family, taken in 2004. In the picture are Manny and his daughter Serena, myself, Rachel, and our daughter as well. He was just a wonderful, wonderful person. This post feels shamefully sparse, but in some ways I don’t even need to say a thing, because I don’t know anyone who met ManWoman that wasn’t completely captured by his warmth and charm.

* * *

RIP Stalking Cat

This morning’s post comes with heavy news, and I’m in the terrible position of reporting the death of body modification icon Dennis Avner, often better known as Stalking Cat or just Tiger. A US Navy vet more recently working as a programmer and technician, Dennis identified strongly with his feline totem animals and in what he told me was a Huron traditional of actually adopting the physical form of ones totem, he transformed himself not just into a tiger, but a female tiger at that, blurring and exploring the gender line as much as the species line. Much of his work had been done by body modification pioneer Steve Haworth, who rebuilt Dennis’s ears, lip, nose, and face to resemble a tiger, including a multitude of transdermals that held artificial whiskers. In addition to being almost completely covered in tattoos, he’d also sculpted his face and body with extensive silicone work, had custom teeth built to emulate his inner nature, and regularly wore contact lenses and an artificial robotic tail.

Dennis’s boundary-breaking life was never an easy one, and as he was fond of saying, he “found fame, but never fortune”. A wonderful and complex person, he was at times as troubled as he was remarkable, and he recently took his own life at the age of 54 (August 27, 1958 – November 5, 2012). You can download an interview that Dennis and I did for BMEradio about ten years ago at this link: http://www.zentastic.com/bmeradio/Cat.mp3. The photo below with Erik “The Lizardman” Sprague was taken at ModCon III by Philip Barbosa when Cat visited us here in Toronto.

(Additional pictures on BME: news.bme.com/2012/11/12/rip-stalking-cat)