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 have a whole pile of things that piss me off that don’t bother other people at all.  At the top of the list would probably be someone petting my arm, but I also don’t like cold cereal with milk, white foods, or when people quote The Simpsons.  However, special hatred is reserved for truncations of words.  Those cutesy little shorten-ings y’all so love to do these days?  No.  Prisoners are not being mistreated at “gitmo.”  A bank called “wamu” did not recently, spectacularly, fail.  And I most certainly am not participating in something called (feh) na blo po mo.

That said, I’m trying to do that posting-every-day thing for November.  Because I’m swamped with academic work, I have too much to do, and I get more done when I take on too much.  If the expectations are sky-high, in attempting to meet them I usually surpass what I’m capable of when operating with “reasonable” expectations.  A wildly productive failure, as it were.

This is something I should have realized about myself the instant I got sick.

No matter.  I’m back to the blog and have many, many things to write–all about my year-long spiritual crisis and its possible resolution, my re-dedication academic life, the fact that I’m embracing a couple of “alternative” MS treatments (don’t worry, I still take my medicine) and actually finding it helpful, how I used my wheelchair to build my body back up to a functional state, and how some recent new acquaintances have made me realize that I owe a tremendous debt to the disability community.

This last subject is huge, and I don’t know if I can do it justice.  I’ve now met several other crips or chronic sickies who, for whatever reason, have chosen to be outside the disability community, and their level of debility, of broken-ness really, is simply staggering.  And I know–I know–that I would have been the same god-damned way if I hadn’t found my way here.  The fulfillment of the sick role, as it were.

SO thank you, first of all, Jen.  You were the inspiration.  And thank you Disability Studies at Temple, and Not Dead Yet, and Ragged Edge, and ADAPT, and Katja Stokely and Kay Oleson and Amanda Baggs and Dave Hingsburger and Elizabeth McClung and and and.

My Academy Awards speech notwithstanding, I find myself now on the other side of the fence.

The challenge, I think, will be to extend my understanding, offer options without proseletyzing, and to keep my anger in check.  The anger arises, by the way, when I meet someone who has convinced themselves that a sick person “cannot” or “should not” do X thing–generally something I do–because I experience their defeatism as a direct threat to my own freedom, the freedom I’ve wrestled and fought and clawed to get away from the disease.  So yeah–it gets hard for me to meet someone who not only is not clawing but who smiles patronizingly while intoning what can and cannot be done, without wanting to start slapping them over and over until they get up and stop me.  Because I’d rather see them angry than so complacent in debility.

Over at Multiple Sclerosis Sucks (link forthcoming, it’s a super-cool site) there’s a spiffy little essay about how people who try to tell sickies that “you’re only as sick as you feel!” need to shut the fuck up.  And, well, word.  That is not what I’m talking about  doing.  By all means, tell me how sick you are, and I’ll believe you.  But don’t tell me how sick sick people are in general.  Particularly when you don’t know any, because the community has nothing to offer you, and so you’re the Sick One among your social scene and deeply locked into that role.

I want to start writing again about the pain and anger and sometimes humiliating physical aspects of what I’m experiencing, and I want to do it without seeming like I’m giving up or like I’m “overcoming.”  And yet everything I say seems to fall into one of those categories.

I’m giving up because I accept myself as defined by the diagnosis (diagnoses, now, and I’ll write about that too) and take it as an intrinsic part of who I am.  There’s no “real me” hiding within the illness–it is me.  And the fact that I’ve chosen to live a highly demanding life (physically, mentally) does not mean I’ve “overcome” anything–simply that I, the sick I, have chosen to drag my sick body around in this demanding way, and I have a right to do that.

The world is full of motherfuckers who will tell me I should have the “right” to die, because my life is worth less than a whole, hale and healthy person, but who will deny me the right to push sleep deprivation, exercise, rough sex, whatever to the point that I do.  Because, you know, I’m sick.  And sick people don’t.

Lots more to write, I think.  Happy November.

So I haven’t been around lately, because I’ve been, seriously and for real, actually out of the house for once in a while. No lie. This hermit thing is for the birds once summer hits, and I’m doing my best to actually get the kids in the open air as much as possible.

This is all made much, much easier by the fact that I have my new chair, which is utterly slick, and can now do things other than clutch my husband’s arm all day or somnambulate wincingly from parking-area to place-to-sit. It’s a good thing. Mostly. Sometimes it’s not, for reasons which are beyond my understanding but seem to revolve around the fact that I’m so terribly little and so terribly attractive. Or something. I don’t actually know many other people who have gotten quite as much of this sort of attention, although if I’m wrong please vent away in the comments section because holy hell, people can make some jackasses of themselves, can they not?

Case in point: Lately (as in, since I’ve had this chair and have no longer been a bitter, reclusive, jagged little housebound pill) I’ve been heading up to Local Rather Ritzy Little Suburb to do my work at Starbuck’s, take the kids to the park, wander around drinking espressos with my husband, and all the other things that I just plain haven’t done for a while. Seems a decent choice of place. The sidewalks are smooth, there are curb cuts, the stores are mostly accessible, there’s a decent amount to do, and there are a few hills to work the arms on as I’m slowly edging my way towards Angelina Jolie shoulders.

Which is the problem. Not the shoulders, the hills. I have gotten more unsolicited touching and potentially-dangerous-or-damaging “helping” then I thought possible, and while it happens all the time and my consent is apparently irrelevant to these people’s need to have some sort of do-gooder moment at my expense (someone actually ripped a cup out of my hand that I was placing in a trash can and tossed it in with a loud, satisfied “There!” and then waited to be thanked, my response was along the lines of “What just fucking happened?”), nowhere is this completely solipsistic behavior more in evidence than when the sidewalk begins to slope even ever so slightly towards the idea of becoming a hill.

Despite the invention, some time ago I believe, of a circular frame or disk arranged to revolve on an axis on vehicles or machinery (popularly known as the “wheel,”) people remain, apparently, very very daunted by hills. On my behalf. The situation is so dire, in fact, that it renders null and void any requirement for consent on my part to being touched, grabbed, or screamed at. Yeah, I’m being cute and sarcastically formal in the way I write this, and maybe it’s witty as hell or maybe it’s falling flat, but trust me this is the tone I take when I don’t even know what to do anymore. I’m at a loss. The things that have happened this week, all of which involve hills, have me this close to going back into the house permanently or starting to pack heat.

Nobody warned me. I knew people were asses, I knew that they’d talk to my husband instead of me if we were together*, I knew I’d hear jackassry such as “Oh, are we on an outing?” when I was at the pharmacy (response: “Actually, I’m trying to get my Adderall prescription and some lambskin condoms, latex sensitivity, thanks for asking, do they even make those anymore?”), but nobody told me that the hills would be the breaking point that finally proved to me that the rest of the world has gone utterly and completely batshit insane.

Here’s a brief summation of a few of the incidents I mean:

The farmer’s market: Not the first time this sort of thing happened, but the first time that the situation went beyond one in which I could continue to chirp “No thank you! No thank you!” and started letting the obscenities fly. You see, the Farmer’s Market I frequent and the ATM a block-and-a-half away are separated by… (cue the spooky music)… a HILL. OK, a pretty steep hill. It’s actually a hill that I practiced on a few times to make sure I was up to the hills on campus, before I took the chair out alone for the first time. It goes… up. On a grade. In one direction. As a hill does.

Halfway up I hear panting behind me. A fortyish woman who, let’s be frank, probably spends a good deal of her time praying to be in the sort of shape I’m in is laboriously clambering up behind me and, thinking she might need to pass, I pull aside and stop. Mildly annoying to stop on a steep grade, but no more so than having to hurry up on her behalf would be. When she catches up, I expect her to pass so that I can continue, but instead she stops and, proud as anything, beams “I came up here to help you!”

“Oh, thank you so much, that isn’t necessary,” I tell her.

“Oh, no, it’s fine, she says, and proceeds to dart out her hand and make a snatching sort of grab for the back of my chair. And right here is where I lose all sympathy for these people. It’s the grab. It’s not just that they’re touching without permission. Not just. It’s the fact that the grab is fast and the grab is furtive, because they know. They know they’re doing unwelcome shit. They just think they can get away with it.

I could really hold back a loud, startled “What are you doing?” and things devolved from there. She wouldn’t leave, just stood there, arms folded, yelling about how she was helping and I should be grateful and so on and so forth. Egh. Enough.

After she’d finally, finally gone away, I turned back up the hill again, sharing a shaking-our-heads-in-disbelief glance with my ten-year-old. Not two more feet up the hill it happened. Crack. The seat-back (which is extremely low) gets slammed into the small of my back, hard. Someone, a man this time, has apparently decided that he’s going to take over this going-up-the-hill thing for me and, not seeing any way to push the chair (because there isn’t one) has decided to grab the backrest and shove.


I was, at this point, beyond furious. Guy, as well, was livid at being challenged by the ought-to-be passive victim of his help. To quote Forster, “the man was young, the woman deeply stirred, in both a vein of coarseness was latent.” Anyone reading this blog knows there’s more than a vein of coarseness in this waif, and it ain’t all too latent–and my rescuer had quite the temper himself. Yelling. Screaming.

People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one. Really. It’s bloody expensive and insurance covered none of it (but they’d cover a powerchair, which costs thousands more, how asinine is that?). Also, I sliced my own hand open (there’s apparently a reason this chair is named the Razorblade) and don’t really want to be liable for someone else’s misguided injury. Speaking of injury, I did call the police, and it is assault to grab someone’s chair, and the officer I spoke with said that it might even be possible to make a case for leaving-the-scene if you break something on the chair and then run off, refusing to give me your info. I wonder if I can charge it as a bias crime when they respond to the assault charge with “but she’s disabled!”

You can’t really predict what kind of quixotic, litigious lunatic is sitting in that chair you’re trying to grab, so why not try asking first? The ass you save may be your own.

On a much, much happier note, I’m hosting the disability blog carnival again! And, since last year’s carnival was almost a birth, I’m choosing to focus on the other side of the coin this year. Death! Death planning, spirituality, end-of-life issues, “right-to-die” legislation, and a look at some of the notably saddening losses the disability community has sustained in the past year. I have it on good authority that the next carnival is something like “fun in the sun,” so let’s all get good and goth with this one first, just to show we are many-layered and complex souls.

*the talking-to-my-husband-instead-of-me thing is amusing, but no more so than the people who will stand, purse their lips, tap their foot and glare at him for not “helping” me with everything from going over an itty bitty curb to opening my purse or somesuch. It’s really quite rude, and if they don’t stop we’re seriously considering putting on a whole show in which he berates me for not doing these things correctly (“It’s a little bitty curb cut! Jesus Christ, Hala!”) and I pretend to cry. Since obviously, the people want a show.

I just saw a friend of mine off, taking a nice open-moonroof windy evening ride down the West Side Highway. She’d come up to help me get through this last attack. We hadn’t seen each other in ten years.

One week ago, I did the thing that everyone is always saying to do, rule number one, don’t be afraid to ask for help. I did. I was at the end of my tether. It was the middle of the night, the pain was really bad, I was in The Chair (that’s the hideously uncomfortable armchair I get stuck in when I’m ill) and couldn’t get up, my husband was on Round Thirty-Five or so of the Dicked-Up FMLA Drama he’s been dealing with at work, and I had no clue whatsoever how I was going to manage the week, go back to school, or get those damn steroids, nevermind simple things like eat or take care of my children.

I put out a Distress Call. Maybe someone reading this even got it. A few sentences, a BCC to the entire “friends” list in my address book. Which resulted in some expected and unexpected offers of assistance, some from pretty far away.

I was terrified about the idea of having someone to stay in my house. I don’t really have friends, really… or rather I do, but not in the “come to my house!” sort of way, more in the I-commented-back-on-facebook-last-month-so-you-must-know-I-care sort of way. I actually met this friend of mine, Miss X, when we both were little La Leche League punk-rock chicks, with our scruffy soulful babies and copies of The Continuum Concept. We met via a parenting email list and immediately bonded as the only non-older, non-upwardly-mobile parents on said list. We met up in an equidistant city with the kids, and kept sporadically in touch. Fast-forward a few years, some really bad times in both our lives, MySpace, and a phone call or two. And then, she was offering to get on a bus and come two states over to help me out with the kids while I had steroids and got better. What’s even more surprising is that I said yes.

For the past few minutes, I’ve been trying to compose my statement of gratitude, because while the help was priceless (and–most rare and wonderful of all–unobtrusive) the simple act of friendship was stunning. Thank you. For three days I shared my space while recovering, and I couldn’t in a million years have imagined that would have worked out.

I was reading Elizabeth’s recent post on death, which struck a chord with a lot of people, and it got me thinking about this whole blogging thing, which I do on rather a smaller scale than a lot of disability bloggers but enough to now “know” people that I don’t know in real life who, seemingly, care enough about me to worry and offer good wishes. And I wonder sometimes if part of the compulsion to not only keep writing but to keep reading, to see what everyone is doing today, is about. I want someone to know if I let go and slip under, if Elizabeth does. I want it to be important enough for someone to say hey! where is she? can I do something? And yes, I suppose if that means I have to join the human race for a while, then so be it.

Save me, O God,
for the waters have come up to my neck.
I sink in deep mire,
where there is no foothold;
I have come into deep waters,
and the flood sweeps over me.

I’m not very good with people. But if this does happen to me, I want someone to see.

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.

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