Phoebe is “due” today.  

Or rather, is 40 weeks pregnant, something of an arbitrary deadline actually, but a perfect time to send her some good thoughts.  She’s having an unassisted birth, something I thought very long and hard about doing, and still think that maybe I should have done.  UC’s are, from my perspective, both beautiful and scary.  It does make me want to send some extra love Phoebe’s way.  

There are manymanymany good-childbirth-type deities out there.  May they all watch over her. 


Image: As pregnant as it gets; the Retired Waif reclining in active labor.
I had had such a series of false alarms, had called my husband home from work so many times, had walked to keep contractions going or had a glass of wine to get them to stop so many times, that unfortunately I can’t really say that I “just knew” that was the day. I’d like to. I’d like to have some kind of bad-ass super-cool psychic-powers birth story as befits me, and the baby, and this awesome blog, and all that. Alas.

I was pretty damned determined that that would be the day, though. I’d been having spaced-out, stop-and-start labor for weeks, you see, and not knowing what to expect was driving us nearly out of our minds. There isn’t any real way to pinpoint the true “beginning” of labor, in this case.  I groused around the house.  He called out from work.  We waited through the afternoon.

I remember the first contraction that nearly knocked me down, though. Laugh if you like, but I was letting my hormones lead the way and baking a cake in early labor (seven-thirty at night or so). My husband was timing the contractions–funny, because I had been quite scornful of his utterly-male desire to time contractions during a homebirth…. (whatever for?) When it happened, though, we both found we really enjoyed the timing and making notes as the rhythm of the whole thing established itself.

My daughter had planned to attend the birth. I left the option open, and certainly had no plans to exclude her, but let her know that the instant things got at all scary, or boring, or weird, she had but to say the word and grandma would swoop her away to be pampered in Westchester. She saw which way the wind was blowing at eight o’clock or so, and made a graceful exit. I’m terribly glad about that–I actually think she might have suffered some trauma if she’d stayed.

The next hour or so were passed with my husband reading aloud (not Graham Greene for once, although The Quiet American once got me through a miserable hospital stay). He’s a marvelous reader, but it became hard to concentrate. It was impossible to either move or stay still.  Our midwife arrived, followed shortly by our doula, at around ten o’clock. The doula brought some white daisies that stand out particularly in my memory. I had chosen her for a doula because she’s someone I see as the opposite of invasive, and also because she’s very pretty, in a calming sort of way. It was nice to see her.

The midwife and doula went to rest, and my husband talked me through labor for an hour or so. At this point I should have realized that a certain amount of shutting down was going to be the best way to get through this; rather than try to do anything I made myself as still as possible and stared into his eyes and listened to his voice. I’d had no idea how to prepare for labor, and I’d later realize that the times I was able to withdraw were the only times I could really cope.

It was a very rapid labor, and felt very out of control. At a certain point I broke away from my husband and stood under the hot shower–painfully hot water was the only thing I wanted to feel at the time, but heat causes some dreadful MS symptoms for me, so I would stand under the shower until I got too weak to hold myself upright, drag myself back to the bedroom, and wait to regain strength to stand under the shower again.  I was unable to simultaneously deal with the people around me and the pain I was in. I spent a lot of time kneeling, with my husband pressing a hot water bottle into my back. That was nice. But there were too many people…

At about midnight, I remember crawling onto the bed, curling up, and closing my eyes.  Somehow, more than three hours passed, during which everyone else slept and I crouched perfectly still, with my eyes closed.  A non-verbal state was the only possible way I could have done it, and in retrospect it’s a state I should have stayed in.  Labor pain was utterly different in this state–I could actually follow the ebb and flow, the swelling and receding, rather than being completely overwhelmed.

The pain subsided somewhat, and was replaced by pressure, not unbearable, and a feeling of heaviness. I slept for a little while–and I remember the pressure growing, getting more intense, and becoming pain again.  I wasn’t ready for it, I started making noises, my husband came into the room and suddenly everyone was in the room.

It was here that I completely and utterly lost it.

I knew I was about to have the baby, could tell that I was about to have the baby, and couldn’t quite seem to make that clear.  The midwife and I got into a completely pointless argument about a hospital transfer, an internal exam, and other things.  I infuriated her so much she stormed out of the room.  I think she knew the baby was moments away from being born and was frustrated that I seemed to have completely lost focus?  I don’t know.

I took another trip to the shower, now beginning to involuntarily start pushing the baby out.  Going back into the bedroom, I was suddenly sick.  Water broke.  I dropped onto my knees next to the bed, reached down to feel him crowning, and was able to deliver his head–and two or three seconds later, the rest of him.

Image: black-and-white photograph of a new baby.

I remember looking over my left shoulder (the midwife had gently laid him down next to me on a towel) and seeing that he was a boy, that he had a funny little beak of an upper lip, and that he was most definitely alive.

Many, many different levels of relief.

Someone told my husband “You have a boy.”  My husband repeated “I have a boy?” with a crack in his voice, sounding like a boy himself.  Sitting on the bed, which I was kneeling next to, he told me later that I looked “very frail.”

So quickly, I had the baby in my arms.

Image:  New baby, new baby, new baby.  Squished face, wet skin, mama’s hand stroking his cheek.

I held him and stared at him.  He wasn’t ready to nurse yet.  The placenta delivered smoothly, I seemed in fine shape,  my husband held the baby while I showered.  I’m so happy I have pictures of those moments.

After the shower, bed.  Nursing, newborn exam, and a few hours sleep before the family started knocking on the door.

No, my little one is not here yet.

Katie McCarron’s fifth birthday would have been today.

As I’m waiting for my own child, I can only hope to be blessed with a child as wonderful and precious as Katie was.

If it weren’t for the long wait to go into labor, you’d all be spared my rants. As it is, here you are. Not up to my standard, blog-wise. I’ve made little or no attempt to be funny. I’m lonely, and I need to complain, and I have a blog. That is all.

(Image description: It’s either a poigant shot of very-pregnant me looking pensively into the middle distance, or a pathetic attempt to keep the reader with me through the following bitch-fest by posting a more-revealing-than-usual photo.)

I may not be posting again until after the little one is born. At this point in the pregnancy, some of the standard 9-months-pregnant issues have managed to join up with some of the less-than-standard MS issues, and I’m completely at a loss as to what to expect in terms of pain, mobility, and so forth. Some of this may go away when I have the baby, some of it definitely will, some may get worse, but the unpredicability of it all is the main problem. Other than a trip to see the movie “Paprika” tomorrow, which has been planned down to the last stair-step, I don’t plan on leaving my comfort zone again until some time after delivery.

I’m a little bit angry at the MS-doctors, the National MS Society Website, and the MS-internet-resource-arena right now. Why is that? Well, from what I understand, some time ago the conventional wisdom had it that women with MS shouldn’t get pregnant at all. We were advised to have our tubes tied because we could certainly never handle pregnancy or parenting, not to mention possibly passing the condition on to our children. Labor and delivery were a Big Deal. Until recently, this was what most people seemed to think. Pretty depressing, considering that most women are diagnosed in their prime child-bearing years.

Thankfully, this attitude no longer prevails (well, it does among busybodies and nosy folk, including several less-than-charming friends of my husband who made their own opinions about who should and shouldn’t have children known to him barely days after I was diagnosed, but I’m speaking of knowledgeable people here). I’m really glad that things have changed. I’m glad I can have my homebirth and be seen as “normal” as far as pregnancy goes. I’m happy that this obviously-low-risk pregnancy has been treated as such.

The problem with this is that if you go to any informational sites, buy any books, or ask any doctor, you will now be given a spiel about just how normal pregnancy and MS are. Normal, normal, normal. MS “does not affect” pregnancy. And vice versa. And I’ve been thinking about this, and not only is it not the truth in my case, but I don’t see how it’s even possible.

Why isn’t pregnancy-with-MS described or written about anywhere? Why is it that all I can find is that women with MS have “normal pregnancies” (IE no increased pregnancy complications) with “normal outcomes” (healthy mom, healthy baby) just as much as women without MS. Technically, I too am having a “normal pregnancy.” I also can’t walk. How would significant balance issues be unaffected by a significant weight gain involving a major shift in the center of gravity? What about MS-related spasticity and pregnancy-related leg cramps? How would they affect each other? What would the mobility problems that resulted say about the person’s future abilities to walk? Why is there no information on any of this? Why are pregnancy symptoms completely ignored in the context of how they might affect MS? Will I get better? Will I get worse? Will the balance issues and major leg pain lift a bit after pregnancy? All anyone seems to be able to tell me is that relapse is extremely common post-partum. Fine. But what about the symptoms that have appeared during the pregnancy? Which way will it go after I deliver?

Nothing. No info. Just “normal pregnancies unaffected by MS” (sure, MS symptoms and pregnancy symptoms don’t affect each other at all. Because four months of vomiting is really easy when you have a weak swallow.) Oh, and “increased risk of relapse post-partum.” That’s nice too.

Based on the optimistic “you have MS–but it doesn’t have you!” spiel I got from every-fucking-body when I was diagnosed, there is no way I could have predicted the train wreck that has been that past year. And I officially want to state for the record that I’m really pissed off at pretty much everyone I know. My family have been, in their way, wonderful. However, I don’t know if they can appreciate how spectacularly unhelpful their particular mix of Pollyanna-optimism and Doomsday-unsolicited-advice-giving can be. Apparently, a realistic assessment of my needs and symptoms is “depressing,” so I can’t actually describe what’s really going on but instead have to be endlessly compared to some woman who has had MS for thirty years and “only uses a cane–sometimes!” Meanwhile, making life plans for myself is “unrealistic” and “trying to do too much.”

For an entire academic year, people in my life have pretty much refused to let me explain what was really wrong with me and make moves towards getting proper accomodations set up. At the same time, for the past year every slightly optimistic word I’ve voiced about actually wanting to do something, every flicker of academic interest, every plan for the kids, every post-graduation bit of optimism, has been met with a placating smile and a “don’t you think you’re taking a bit too much on yourself? The important thing is that you be healthy!”

This wheelchair thing is such a case in point. The chair is the Big Symbol for my bunch… probably the first thing I heard from anyone after my diagnosis was some bullshit statistic about how only 20% of people with MS are in wheelchair after 20 years! Nevermind that this probably had more to do with crappy insurance reimbursement and social stigma, as I’ve learned after a year of being fucking housebound. Nope. Wheelchair=Non-Inspirational MS-Failure. Keep doing yoga! That’s what someone sister’s boyfriend’s cousin said! She knows someone with MS and he never needed a wheelchair!

Right. Does it matter that the wheelchair might make help make the difference that keeps me in school? That sheer exhaustion knocked me out of most of my classes last year? Not really. You see, bringing up school brings on the “Now, don’t you do too much!” Brigade. School? Isn’t it cute that I still care? Of course, I need to be realistic. I mean, with a baby and all (Have you thought about how you’re going to take care of that baby? Don’t you think it’s too much for you?).

The net result of all of this is that I’ve been, for sometime now, completely unable to visualize a future that includes me. Not allowed to acknowledge that I need more help than I have to get around, I’ve had to hide away in the house. Not allowed to express hopes or plans of any sort, I’ve done my best not to have them.

Last semester, I had some words with a professor. Well, he had some words with me. (This was not the Man who was Very Sensitive to Air Conditioners, by the way, but another one.) I had not met this man previous to taking his course, and he knew very little of my prior two-and-a-half years at the school. His class met at the worst possible time for me… at the end of the day, after several other classes, and trying to navigate around campus. On more than one occasion I was in obvious pain in his class, for which he would generally single me out and tell me I should go home. I cried, once. Extreme humiliation. You see, I’d done the reading, and just wanted to be there. After that, I tried to hide being in pain, and to be funny.

At the end of the semester, he had a few choice words for me and how I dealt with disability. The choicest, and most-repeated, of those words was the phrase “self-indulgent.” I can’t really detail the entire conversation here, suffice it to say that I was terribly ashamed. I kept apologizing, trying to explain that i wished I’d gotten the chance to work with him before I got sick, that I could have given his class the attention and care that it deserved. If you’d known me before, I wanted to say, you wouldn’t be able to say this. You’d understand. You’d know.

I don’t generally open this line of discusssion, but I started college essentially homeless, doing schoolwork on buses, working a full-time job as a line cook. I could only walk around campus by pretending I was invisible, or the stress of not-belonging would become too strong and I’d become convinced someone would realize I wasn’t supposed to be there. All the wonderful things that happened during the first two years, the academic honors and close work with professors, pretty much stunned me and I still haven’t really gotten over it. Thank God for the confidence I aquired during that time, because I don’t know what else is going to get me through now.

I want to go back in September so badly. But I don’t know how to do it with all these eyes on me, with all this speculation, with all the maybe you should just take a year off, and the I think you’re biting off a bit more than you can chew. Not to mention your problem is not that you’re sick, it’s that you’re self-indulgent. Or the shouldn’t you just take care of your baby, that your chronically-ill ass had no business having in the first place?

Online identies are misleading. It’s easy to be witty and irreverant in an ego-stroking blog such as this one. In reality, I have no idea how to even begin to figure out what I need, how to ask for it, how to do anything other than try to be agreeable, how to stop apologizing to everyone in response to those words my professor said to me last semester. I didn’t tell anyone about that. I don’t know what to do now.

I’m just waiting. I’m taking everyone’s advice and shutting up and just waiting. To have this baby, to see if I get sicker, to see if they’ll let me back in September, to see if I can get the help I need to make that work. I don’t know, right now, what’s happening.

I suppose I could really use someone to talk to.

(description: A Victorian dollhouse family consisting of mother, daughter, and baby in pram. I, however, have no baby in pram since I was apparently in “false” or “pre” labor, whatever they’re calling it now.)

Whatever labor might have been last night, it petered out about 2am, to return only intermittently (“Another contraction! When was the last one, honey?” “Ummm… ninety minutes ago.”) Apparently this happens all the time, although I’d likely have been induced or sectioned in a hospital by now. Inconvenient, I’ll say that much.

But, in my time-killing this morning, I came across this awesome* article in the Observer titled The New Victorians. Like most NYC-centric culture-puff peices, it focuses on a phenomenon that’s been going on for a while and skews it entirely towards rich people, still, it isn’t bad. If you’ve read Alan Ehrenhalt’s “The Lost City,” you’ll be familiar with the “blame the boomers” argument. In my opinion, the best bit of the article is the closing paragraph, which my husband simply loved:

“You have to confront this question of, ‘Am I a deeply conventional person?’ she said. “It kind of throws the idea of who you thought you would be into question.”

*In other news, more than one person has lately commented on my incessant use of the term “awesome,” including Kristina at Autism Vox. What can I say, I have a nine-year-old girl, a GenX husband, and an often-affectless voice that makes the term sound really cool.

What I do not have, however, is a baby yet. Not awesome.


Thanks to all who said nice things about the Blog Carnival; I now appreciate how much work the rest of you do putting these things together!

I spent a lot of time thinking about what to theme this, my first, Disability Blog Carnival. I’ve also spent a lot of time thinking about whether I’d be in labor before getting this done, but that doesn’t seem to be the case. I can’t, alas, claim that this Carnival will be as brilliant as ones past, and as a matter of fact I’m not even sure how to put up one of those lovely Blog Carnival widgets, I’m so new at this (I did manage to find a picture of that wonderful statue that is on one of the Carnival logos, but couldn’t manage the widget itself).

Still, I hope you enjoy this very non-art-directed version…

Based on some of the early posts I received, it seemed something like “normality” or “everyday life” might be a common theme. I was looking at the ways that, dis-ablism or practical issues aside, disability really does integrate itself into one’s everyday world and become part of the simplest, most banal actions. I was contrasting this idea, in my mind, with the common able-bodied assumption that the disability dominates every aspect of one’s life.

And my mother has a bit of a thing for glossy celebrity magazines.

No, bear with me, it’s relevant! You see, most of these magazines feature a section in which they show celebs and quasi-celebs snapped in usually-unflattering poses trying to pay their parking meters or buy a quart of milk, with awed captions about just! how! normal! these people are. I think the most famous of these is US Magazine’s Celebrities–they’re just like us! feature, which captions the paparazzi shots with things like They buy cat litter! They scream at their children in the street! They get tattoos on their butts! and other such… ummmm… universal experiences.

So, that said, this edition of the Disability Blog Carnival is designed to explain the the untutored able-bodied type that there’s nothing abnormal about us… we’re just like them! Please do accept my tongue-in-cheek parody and sweeping generalization in the spirit it’s meant, and don’t allow my irreverence to detract from some of the awesome, wonderful writing to be found in…

Disability Blog Carnival #18,


The Disabled! We’re just like YOU!!!!


We hate our crap jobs!
Yes, if Dave at Chewing the Fat is to be believed in his post Inspiration, even cognitively disabled people can sometimes be less than thrilled by a repetitive, boring McJob! Who would ever have imagined? We’re just like you!

We get to vote, even if we know fuck-all about politics or the issues!
In “Who Is Entitled to Vote?” Terry at I See Invisible People has a concise summation of the dangers of basing the right to vote on an ill-defined “competancy.” It’s seriously worth reading, as it sets out the issues with clarity yet urgency.

Are there people who are truly incompetent to vote? Of course there are. But we cannot legally mandate an informed electorate. Some people are always going to make lousy decisions for lousy reasons, or be influenced by those around them, and in a free country, that’s their right.



We Shop at Whole Paycheck! And it’s a pain in the ass!
Apparently, according to Melanie of Melly vs. Stomach, Whole Foods is still an irritating jaunt even when you’re lucky enough to be entitled to one of those nifty wheelchair-carts–provided you can get your hands on one.

We wax our naughty bits!
Over at Screw Bronze, Elizabeth McClung gets a bikini wax. Enough said.

We read smarty-pants literature!
It’s true! At least, Simi Linton at Disability Culture Watch does, and has a really lovely post that takes a new look at one of the more neglected male characters in literature. Go check out Lord Chatterley Abandoned Once Again, and then maybe give the book itself a re-read. I know that I for one never even noticed Lord Chatterley the first time around… marvelous stuff.

Meanwhile Dispoet looks at some of the recent poetry exploring Helen Keller as a disablitlity archetype, including one poet who places her in juxtaposition with Helen of Troy, in Helen Reconstructed.


Our parents have all sorts of expectations of us!
Michael Berube discusses parental expectations in Livin La Vida Corta

We stay in lousy, tacky, overpriced hotels!

Wow, just like you! With a bit more trouble, though, since accessibility often leaves a bit to be desired, as Emma points out in Snapshots from a Holiday.

We simply will not mind our own business!
In my personal favorite submission of this Carnival, Lisa Ferris explains a bit about why she blogs about disability issues that might be only peripherally related to her personal situation. Lisa’s someone you just want to let go on and on, and she appropriately titles this post For All of Yous who Like the Long Ones. Lisa makes double entendres too. Just like you, if you were as witty as she is, of course!

We have annoying friends!
Timothy Griffin does, he’ll have you know. Several different types of annoying friends, all of whom came out of the woodwork on his behalf when he got his wheelchair. In The Chair and the Friends, he introduces us to the different categories, including the ones worth hanging onto.

Ruth at Wheelie Catholic has her own category of annoying types, who she refers to as The Naysayers. I have to wonder if she’s been hanging out with my family recently…

We watch lots and lots of TV!
Just like you, Mr. Able-Bodied Couch Potato, the disabled loooooove us some TV. Can’t get enough of the idiot box. Unfortunately, it’s pretty unlikely to get a good solid portrayal of one of us up there (Dr. House notwithstanding) so Stephen Kuusisto at Planet of the Blind wants to direct our attention to [with]TV. My snark notwithstanding, this disability-focused cable network sounds completely awesome, and I’m thankful he’s brought it to our attention.

Meanwhile, Ranter wants to hear about our fantasy TV shows, so head over his way and pitch your thursday-night must-see.

We have deviant sex lives, and the practical problems that go with!
Zephyr, over at Arthiritic Young Thing, and I have a few things in common, despite my being neither arthritic (it turned out to be MS-related spastic joint pain!) nor particularly young. In a recent post she wonders Can One Be Disabled and Be a Good Submissive? I suppose the question really depends on how you’re defining almost every term in the sentence (“disabled?” “submissive?” “good?”), but it’s certainly worth pondering.

We’re Perfectly Healthy, thanks for asking!
Not strictly a disability blogger, Kristina Chew at Autism Vox demonstrates in her post To Your Health that parents of autistic children, and those children themselves, are just like everyone else, too! Just like you, they’re perfectly “healthy,” within their own parameters and those of any “healthy” society.


A quick interruption at this point in the festivities, to ask you all for good vibes since it seems I may actually, a little bit, slightly, be going into labor… let’s see, who wants to time contractions with me?




Where was I? Ah, yes. Autistics. Well, since everyone knows they’re just like everyone else, let’s look at some of the ways in which autism bloggers have asserted their conformity this week. Our autistic bloggers say:

We do not keep particularly neat flats, and yet we have strong opinions on the new Prime Minister!
Notice how I said “flat,” given that Laurentius Rex is one of those brilliant English bloggers? In The Reality of My Autism, he puts his condition into real-world perspective and shows a pretty daring picture of his apartment, while in The One-Eyed King Welcomes the One-Eyed Prime Minister he poses ten challenges that Gordon had best be ready to answer to.

We have conventions!
Just like you! Or, at least, just like Trekkies and gamers and advertising execs. Over at the Joy of Autism in Are We Listening?, Estee takes a listen and hears the things that parents, teachers and advocates should be hearing when they ask about autism–and what too few of them are.

We start touchy conversations!
NTs are Weird has a wonderful post about the so-called Little Things, that gets particularly touchy in the comments section. Who says autistics can’t function socially? You haven’t seen an active comments section until you’ve visited one of these bloggers.

We… we… ummmm… right.
Even in a bad joke that’s gone on for far too long, I can’t pretend that Amanda Baggs is just like everybody else. I’d rather just give her the place of honor here at the end, and let her speak in her own words about the Dialects of Nonverbal Language, as well as an interview with Donna Williams in which Autism Goes on Trial. I’d also like to remind anyone reading that could use some computer help… see Amanda’s blog for more info.


And with that, I’m off. Oh–about every seven minutes, but not quite regular enough to be “real” labor, in case you’re interested. Good vibes, everyone?

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