I am constantly learning that for most non-disabled folks the default mindset regarding disability is tragedy. There seems to be some kind of genetic need to understand difference as abhorrent and wheelchairs as the symbol of captivity. I keep running in to these attitudes, the attitudes that completely shore up the hierarchy between those who walk and those who roll, or those who talk and those who sign, or those who think quickly and those who ponder slowly, or those who love chaos and those who require sameness. A hierarchy that leaves one feeling somewhat pleased to simply not be the other. And it always surprises me.

-Dave Hingsburger

I don’t have the energy or, frankly, the time… or the calm, measured but kind words that would be necessary to really do this justice, but I am probably going to be writing a series of posts about the response my disabilites have elicited in my new environment.  I’m not in NYC anymore, but a smaller city, studying at a divinity school attached to major Ivy League university.  It’s nice here. 

But people at divinity schools have a different way of dealing with the direct visual experience of another’s disability (than do solipsistic undergrads at big urban universities, for instance), and I’m finding that I have none of the tools to navigate this.  I am, to put it quite bluntly, finding myself utterly worn to a frazzle by the solicitous care, concern and curiosity of genuinely good, kind, compassionate people into whose sense of mission and calling I fit precisely into a prescribed role. 

This is often a role that (as the readers of this profanity-laced and often immature collection of rants will immediately recognize) I have some trouble fitting into–and I’m not really sure that I want to.

I’ll have to write more on this in the time to come.  For now, suffice it to say that I’m in the market for new ideas on how to nicely (that’s important, everyone is nice here, the Waif is not so nice, so this  requires careful planning) send off signals that I don’t want to be approached–because one of the interesting side effects of the disabled-person-as-object-of-mercy model is that normal social rules of approach are suspended.  If I’m using my wheelchair, I eat my lunch with a book in front of my face to ward off the smiles, pats on the back, strokes on the arm, and “oh honey–not a good day today?”s that come my way.  It doesn’t work.  Nothing works. 

I will not quit smoking.  It has become the only way for me to take a moment outside in my chair without the deluge of offers of help.

Of course, like any struggling grad-student-parent-with-a-preteen-and-a-toddler, I’d LOVE some help, but not in the ways they mean.  They’re lovely people, the pastors-of-tomorrow who approach me, and I’d trust them anywhere–so I’m seriously considering hitting them up for babysitting when they come rushing up with their offers of assistance.

Either they start steering clear of me lest they be put on the spot, or I get some free childcare.  WIN-WIN, right?


I’d like to start gradually bringing this blog up-to-date, in terms of where I am now.  Where to begin?

Well, I graduated.  With my worst grade ever in (of all things) bioethics, and a fairly decent thesis, and a graduate school acceptance, I graduated and actually made it to the ceremony.  

Here’s my standing-up pic, which is very misleading, for reasons I’ll explain below.


Now, here’s what actually happened.

I had every intention of graduating in my wheelchair.  Of making a big pain in the ass about it if I had to.  But in the end, I wasn’t sure I’d even make it (total health breakdown before the end of the semester) and by the time it came around I thought that just making a phone call to disability services and asking a few questions would suffice.

Questions like “how much walking?” (Not very much.  Just up to get to diploma and back down.)  There’s a place to sit the whole time? (There are seats set up for all the students, and you’ll be able to sit the whole time.)

All of these answers were true, but neglected to mention that before we’d be allowed into these seats, they’d line us all up and keep us standing while we waited to make the grand entrance.  For forty-five minutes.  Seriously.

To make a long and pretty ignominious story as short as possible, I made it about twenty minutes before trying to get some help, which was too late, and hit that point where there wasn’t going to be any more standing.  Or walking.  That day.  

Crawled about 50 feet, made it to the edge of a planter, and thought a lot about how this was my own fault versus how someone who worked in disability services could not know that the question “how much standing will there be during the graduation?” included the obligatory standing-in-a-line beforehand, and wondering if I’d be able to make it up there at all.  It didn’t look likely.

As it turned out in the end, I did.  I hadn’t made it there alone, after all.  It wasn’t a place I could have gotten on my own, and there hadn’t been a moment of the previous four-OK-five-but-who’s-counting years where I hadn’t depended on someone else’s love and support to carry me through.

So here’s the real picture.

Yes, he carried me all the way up there, and held onto me while I was handed my diploma, and then brought me back safely.

I had other help too, getting cleaned up from the big crawl so I could go up there without looking like the little match girl.

So that’s that.  My love-hate relationship with my alma mater notwithstanding, it turned out to be a beautiful day.  

So as I write about the changes that have happened since, it’s probably worth stopping to remind myself that I continue to not do any of it alone.  And to say thanks.  And I love you.

I should be used to the infusions by now, of course.

I have IVIG once a month, and supposedly inject Copaxone (aka Drano) every day. However, steroids scare the living shit out of me. My diagnosis coincided with a week-long course of steroids in Roosevelt Hospital, and it took pretty much all the Ativan there was just to keep me from clawing the place down. I hated the feeling in the vein, the taste in my mouth, and the crazy in my head.

Well, these were steroids at home. I got hooked up by my awesome infusion nurse (I just have the one, I’m leery of letting strange beings into my space, so I have a consistent nurse) and then the next few days I got to play with flushing the IV and doing my own infusions. I’m done now.

So is my garden. Holy crap. I told myself I’d only do the anti-anxiety meds if I was, well, anxious, so my MS-addled ass got a spurt of evergy the likes of which I barely remember. Weeding, fertilizing, composting, raking, mulching, planting, transplanting, and hauling broken flagstone from a construction site to make borders. The fam? Convinced I’m insane. The husband? Probably going to kill me when he gets home. The energy levels are still okay, but my actual body isn’t used to doing things like this and the muscles are all “What the fuck, Hala.”

Well, so be it.

Now, if the steroids actually stopped–and can hold off–the relapse. If only. And if the Provigil can keep me up and working–please God. Then maybe. Maybe. I can pull off this semester of school. No incompletes. No make-up over the summer. Just one finished semester. Oh, please. Pretty Please. Really.

That was a nice run, right? Eight months remission? Oh, baby.

At least I can administer my own methylprednisone infusions. So sexy.

No, but what is sexy is the Colours Razorblade I ordered. Wheelchair users know what I mean, the rest of you are like “huh?” That’s all right. Super-short frame for little old me, super strength Twister wheels, bright green with black flame upholstery (because I am a GIRL and CARE about such things) and it’s as cute as a little button. Also like me. Natch.

The kids are lovely. Older one is working us hard for a nose peircing. I have no real urge to say no, since in my book it’s basically the same as the ears. I also think, to put it delicately, that the girl is going through puberty. She’s worried about her skin, she’s worried about her hair. She’s an emotional rollercoaster. If this makes her feel utterly fucking beautiful, if this is her way of feeling like the Queen of the May, I say why not.

The little guy is just fat and happy. As it should be.

The husband. The husband is more of less being subjected to a campaign of hostility and degradation at work. They’re pretty sure that the FMLA is something he invented, just to piss them off. He’s in the market and we’re keeping our fingers crossed.

So, to sum up, I’m un-remittant, fairly un-repentant, have a heplock in my arm and spiffy new Provigil prescription, as well as a whole big shiny new dose of Ambition, that I never had before, that I really want to talk about, since it put in its appearance just as my health went to shit. Should I post sexy infusion pics, like Jen used to?

Maybe. Watch this space.

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.

It looks like when I head back to school this fall (and I really hope that’s a “when” and not an “if”), I may be using one of these guys.

(Image description: Invacare T4 Titanium manual wheelchair. Rockstar.)

Anyone with anything good or bad to say about the Invacare T4 Titanium, please do let me know. This thing costs like a second honeymoon.

We had a nice anniversary after all, by the way, despite the fact that I’m having a really awful awful awful time health-wise. Long story short: I didn’t want to believe that I could have a major relapse during pregnancy, since everyone pretty much says “Oh, pregnant women go into remission!” but it’s basically been confirmed. New symptoms, new relapse, and so on.

So I’m nesting, waiting to have this kid and become a human pincushion, and of course organizing the Blog Carnival to put up here in a couple of days. You guys have given me great submissions, which have in fact brought to mind a theme idea. So we’ll see how it works out.

I’d really kind of managed to avoid thinking about it until I read the post “Worries” at No Time for MS, which raises the question of whether one ever really forgets the anniversary of their diagnosis.

This time last year, I was taking a summer away from theology to do some Japanese language-and-lit work at Queens College and the Japan Society. It was really fun, the sort of thing that I’d intended to do for a while and figured I’d better do while still an undergraduate–I would need to get the language skills sorted out if I wanted to go into Buddhist Studies after graduating, and what better way then to spend a summer reading the tale of Genji and volunteering for a cultural organization.

It didn’t work out, naturally, and I spent the 7th of July recovering from hospitalization, diagnosis and steroids rather than at the Japan Society’s tanabata celebration with my daughter.

I think, if I were wishing for something right now, that I’d like to have another, less depressing association with this time of year… it’s a little too cloudy for stars, but I am kind of hoping that I might be able to meet this baby sometime soon. How about tonight? Or tomorrow?

Next Page »