April 2007


Not really worst-case, but I do think it’s funny that I can’t quite seem to get it together to pick out an “assistive device,” and yet here are some things I have absolutely no problem conceiving of:


I have not only a boy’s and girl’s name chosen, but a name for our baby should baby’s gender be somehow indeterminate. Although rare, this is more common than people realize, and I’d like to be prepared with an awesome name and a ready welcome for the child–boy, girl, or… both?


I’ve decided what I’d like done with me after I’m dead. My husband, while not naturally quite as morbid as myself or my daughter, can be fairly easily drawn into these conversations. Our walk home brings us past a gravestone-carver, and we have had to hear innumerable times exactly which shade of rose-colored granite my nine-year-old thinks is appropriate for her marker. Husband and I, on the other hand, opt for the portability of cremation as a way to whichever one of us goes first “with” the other for as long as possible.

So, while the alabaster lovelies above will do for me, I’m a little more tempted to something like this for his ashes:

Like I said, these aren’t real worst-case scenarios. Intersexedness is one of the least scary birth issues, and everyone has to die sometime. I find all of this fairly comforting, to tell the truth. Far more comforting than just breaking down and at the very least getting some sort of cane, right?

I suppose I could always buy a stroller after the baby’s here, and just lean on it a lot.

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I’m notoriously unable to deal with horror of almost any kind.

It’s a testament to how much I wanted to impress my husband that I went to see Dawn of the Dead with him on one of our first dates (I also was held up at work, arrived at the theater late, crept up the center aisle and grabbed him by the back of the neck at a particularly scary moment, so I can really dish out what I can’t take, but that’s another story).I’ve been able to make it through only a few actual “horror” movies, and even then they were grey-area fluff-peices like Angel Heart.

Written horror is similar. There’s a Richard Matheson short story that bothers me to this day. I find horror novels and short stories terribly compelling, but once I’m about halfway through, I really wish I wasn’t. I’m not even a tremendous Clive Barker fan.

And yet I love, love, love Barker’s cenobites. I really enjoyed the Hellbound Heart novella (although I never saw any of the films) and liked the concept enough that it influenced me a fair amount in other writing. And, last night, husband and I found ourselves in a nice, long conversation about the Surgeons from Beyond.

And, naturally, since I can do nothing so cool that Jen has not done it first (including contract a bitch of an autoimmune disease) she now has an amazing new essay up at The Nervous Breakdown, likening the experience of chronic illnes to “transcendent sensation seeking,” and referencing Barker’s perfect sensualists. I strongly suggest you go read it now, and then consider checking out Jen’s book.

Jen’s essay has begun a long train of thought regarding various forms of voluntary and involuntary mortifications of the flesh, which does tend to be something of a recurrent theme with me. The ways this intersects with pregnancy are interesting (this artist deals beatifully with one possible variation); generally I find that the mystique surrounding birth comes in two flavors:

Medical, dangerous, scary, heart-pounding ER-thrillride stuff, those ridiculously unrealistic labors you see on TV where the first contraction hits like a train and the race is on with birthing-woman-as-ticking-time-bomb (snip the red wire! no, the blue one!) culminating in a roomful of shrieking medical personnel and finally, in the moment of breath-caught silence, that single perfect cry of the infant.

Or…

The Empowered-Woman model, complete with circle of female helpers, candles, Venus of Willendorf statues, the woman doing a sort of bovine lowing while a truly unsettling number of people rub her back and tell her she’s so strong and primal, the squatting delivery and finally the nuzzling of the newborn covered in birth fluids while the woman’s “partner,” if male, is appropriately awed by her utter transcendent majesty during this transformative moment.

Given the options above, I’d pretty much say that the latter has it all over the former, don’t get me wrong. And yet somehow, I can’t really see myself in it any more than I can in the first (for a start, I get the cold, shivering horrors at the idea of being surrounded by that many women). I’m sort of trying to find what my own version of the above scenario might look like, while trying not to worry more than I have to about the problems that illness might introduce into the birth experience.

I know a major, cataclysmic change is coming. I know that I’m not very good at self-hypnosis, perceiving pain as “energy,” “sensation,” “pressure,” or anything other than pain. I know that, as Sam Peckinpah pointed out and Haruki Murakami reiterared, nobody gets shot by a gun without bleeding. I’m not a particularly empowered person, but rather one who submits to experience. So, while I’d like to imagine that I’ll have a peaceful swim through the female energies, that really isn’t what I see on the horizon.


My catalogue of support groups from the National MS Society has arrived, and perusing it I was able to find a few that I’d like to go to if I have the time or (heh) the energy (yes, there are conference call groups, but I hate the phone more than the subway sometimes so…thanks, but no thanks). Among the usual (“newly diagnosed,” “living with progressive MS”) and some interesting ones (“Orthodox Jewish Women with MS,” “Sexual Issues”) was one called “But You Look So Good!”

And right there, I’m pretty sure I need to brave the express bus and get myself down into the city to be in attendance, because if there’s anything I’ve gotten tired of hearing, it’s that. Invisible disability has its upsides, of course, and I’d be an ass not to cherish them for as long as I can: the ability to move more or less unnoticed, without being subjected to the regular and degrading invasions of privacy that someone in a wheelchair comes to accept as a matter of course. But there’s also the constant need to prove legitimacy–this girl can’t possibly be sick, you see people thinking. She’s wearing high heels. I’ve seen her making out with her husband. She’s pregnant, she has a kid… surely no disabled person would be so irresponsible.

God knows I fight the idea of any sort of assistive device, even when I maybe should start thinking more seriously about it. Something I read recently made the point that letting the disease limit your mobolity is allowing it to control you, and I get that, but I don’t think I’m quite ready to be so visible. I don’t like being spoken to or approached. And yet, that same part of me wishes that I didn’t constantly have to explain the situation.

I suppose I’m willing to go with “you look so good” for a bit, yet.

Wow.

Someone found their way to this blog with the search “how to look amazing during pregnancy.”

I hope you weren’t too disappointed.