Retired Waif

Is there a decent voice-recognition typing software? Does such a thing exist?

I’m doing much better in school, I think. I very nearly broke a blood vessel this tuesday because suddenly, all at once, I became sick of providing such a vast number of people with such a vast number of details about my health all the fucking time.

This latest was a professor who was trying to tell me how I should just explain to him if something was wrong and naturally he’d make accommodations–I should tell him, I should email him and let him know, etc. etc. etc. I like this particular professor a great deal. Almost as much as I like the ones who are “uncomfortable” with letting me record the class on a tiny portable voice recorder (forcing me to either requisition a human note-taker from the Disability Services office or do without notes all term–great thing with a memory problem) or the professor who “couldn’t think” with the air conditioners on in the room and so let the temperature shoot up over ninety in the classroom. MS is heat-triggered. Again, the Disability Services office (bless them) will change the room for me, and make an entire enormous lecture class move to a different, less-hot building, but they can’t ask this one professor to suck it up and deal with the A/C.

I think I’m ready for my summer off to avoid snapping like a twig at my professors’ delicate sensibilities. This latest really got to me, though, because where I come from I people have the option of answering the question “how are you feeling?” with “Oh, fine,” whether or not they have MS. I really should not have to sail into a monologue about how shitty I’m feeling these days because you’re not my mother, Professor, and the school has documentation that I have a degenerative neurological condition, and that’s all you need to know.

Yes, I have a terrible attitude. I catch reproachful looks all the time. After all, I’m supposed to be the saintly Buddhist theology major, the non-traditional student who’s just so happy to be here, the poor kid on scholarship, and a thousand other things that make the constant chip on my shoulder lately seem so out-of-place to school-people, not to mention that girl who just got married and with her whole life ahead of her got that horrible disease, and I swear to God if I do anything other than smile bravely people downright glare at me for not giving them their little feel-good “there but for the grace of God,” “isn’t she inspiring” moment.

There are a number of people who need to disabuse themselves of the notion that I exist to show them the dignity of the human spirit in the face of adversity.

You know nothing about me.

I’m a big mean crybaby; most people with my condition are worse off than I am.

I’m an anti-social jerk, and if I knew you in real life I’d probably never call you. Unlike the social butterfly I seem to be online, I can count my real-life friends up pretty quickly (pick a number between one and two.)

Far from being particularly saintly, I’m a spiritually lazy sexual deviant who drinks mimosas while pregnant and thinks that sneering at SUV owners will suffice in the place of taking any real action about the causes I purport to care about.

What else? I’m in the closet about a couple of non-MS conditions I have because I don’t feel like being a poster-girl for them. And yet, I do the disability-blogging thing because it validates my self-pity.

And before I go any further into that, I think I’ll cut this short. Suffice it to say that that little flash of disappointment I get from people when I fail to play Camille for them, to do the brave-sick-woman routine, is seriously fucking with my world and causing me to despise people I used to respect.

I haven’t had much of a chance for blogging.

First the Nor’Easter hit, causing two days of flooding in our basement apartment, and then the stress and exhaustion of that experience hit me with several days of severe right-side weakness; basically I’ve been saving my writing hand for schoolwork, and even that’s been getting short shrift.

Several more papers to go (and these days I type…. like…. this…..) and then I’ll come back with much to say.

But yes, Virginia, I am Blogging Against Disablism on May 1st–and to the lovely special-needs moms who read this blog, you should too.

Note to those without children yet, who have not been bitten by the lactivism bug at this time: When posting anything about the rights of nursing babies and mothers, always use a picture of Mary nursing. It’s so deliciously goody-goody, and they’re such lovely paintings.

The RMH-Breastfeeding Brouhaha has been playing itself out all day, with several updates coming my way that I haven’t posted here. I wanted to let you all know the outcome, and thank those of you who called and emailed. Wow… apparently there was a huge response.

If you read below, you’ll see that there’s still a need for some advocacy on this issue, as it’s now being treated as a “personal favor” for the mother to be allowed to nurse at RMH.

Ok here is the outcome of the meeting. We got out about and hour ago and I have been trying to find time to post here after returning some phone calls.

Thank you.

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.

Because my gorgeous and brilliant husband has started his own blog. Isn’t he so fucking smart you just hate him? He’s pretty, too.

OK, so it’s hardly “general interest” stuff. You kind of have to have a really detail-oriented interest in the political history of the 20th century, and want to read what a “non-traditional” student has to say about it, but perhaps this will shame him into writing more, and then I’ll get to read it.

Hey, I don’t have a TV. This is exciting for me.

(note on the photo: That is not our SUV in the background there. Not our SUV. It’s also not our pretty faux-Tudor neighborhood either, but the SUV is the thing I really want to make clear here. Not ours.)

Don’t you love this picture? The gates of Purgatory yawn for me, but it must be said: Mary has the awesomest rack ever. I know this isn’t what’s meant by emulating her example, but I swear, one day I will print this painting out and hand it to a surgeon. “This” is the Antwerp Madonna, by the way, one of many lovely Mary-nursing paintings from its period and in my opinion one of the loveliest.

Despite all my levity, however, there is a serious side to all of this. I was sent a story today, in which the mother of a little boy with cancer was basically shamed for breastfeeding by a charitable concern. I’ll let her tell it…

My sister and I are staying in the Ronald McDonald House in Houston because one of her 17 month old twins had to have brain surgery to remove a tumor last week. The RMH has been great and we have felt so blessed to find such a safe and homey place to take care of her other two children and my daughter while we are here for Tobin’s recovery.

This message may also be shared and reposted. Thank you all for your support.

Could you please send a note Arlene’s way? This poor mother has been through a great deal, and I think it’s important that she and her son not be stressed out any further.

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 cenobites. I really enjoyed the Hellbound Heart novella (although I never saw any of the movies) 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 attend that shit, 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.

My sad little NYC backyard is actually starting to look like Spring.  Specifically, the bag of bulbs I planted in November are coming up, and I’m getting no small amount of joy from this.  For a city-dweller, this is magical.

Even the irises seem to be doing something.

And yes, I suppose I’m blooming a bit as well.

My husband managed to take a pregnant photo of me where I don’t look at though I’m being held captive in a basement.  I can’t quite believe it either.

A few months ago I threw a complete socio-religious quasi-feminist identity-political hissyfit and since then have not really…well… been much of a practicing Catholic. At all.

And being much of a practicing Buddhist kind of fell by the wayside somewhere in between RCIA and Catholic Engaged Encounter and teaching CCD and going to Mass regularly and all the rest of what permeated my supposedly “interfaith” marriage, until I suddenly realized I hadn’t been inside a temple in years.

So.

Do I go to Easter services, go to Hanamatsuri, try to fit in both by attending the Easter Vigil Saturday evening (that shit is long, though) or just stay home?