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.


I had prayed for everybody: my talking family, cousins far away, passerby, and all the lonesome Christians. I expected to be heard. My voice was certainly the loudest.

Grace Paley, “The Loudest Voice”


There have been various updates about the little girl Cecily’s situation on Dave Hinsburger’s blog Chewing the Fat, all of which are worth a read, but suffice to say she’s on the mend and doing well. We couldn’t be happier, and wish her and her family all the best.

In Sis-Update, Cecily’s mother writes a touching-if-unsettling letter detailing how she ran into some of the same prejudice with Cecily’s surgeon as she had with her daughter’s “well-wishers.” Personally, I find this chilling. So does Dave, apparently, and in What If? he writes with intense yet understated anger about what might have happened had Cecily not been able to handle the situation and win her doctor’s heart quite as much as she did.

As a mother, I cannot imagine having to wage a constant uphill battle against a presupposition that my child’s life had inherently less worth than that of another child. I really want to be an intellectual about matters of faith–I really do. I want to be one of those people about whom it’s said: Well, she’s certainly no zealot, you can’t put all religious people into the same box, look at how intelligent she is. The sort of person who makes calm, reasoned, brilliant atheists realize that there can be calm, reasoned, brilliant… theists. And yet, when I begin to stray from the theoretical into the realm of actual belief, I keep coming back to these issues on which I will admit no argument. Like Cecily. Or Katie. Or Ashley. I suppose I’m not really ready to fit them into a sane, reasoned defense of an ordered universe.

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