Retired Waif

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.

No.

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.

So, it’s been a pretty crap Memorial Day Weekend thus far. Friday, I had people over, and since I had the temerity to actually think that the word “remission” means anything, I actually cleaned my house up a bit and cooked a meal, and wham, back into bed the next day with walking trouble, pain, and of course the remnant of The Headache that’s been following me around. Will it ever go away (she asks plaintively)? Tried going to Botanical Garden in the Crap Rental Chair, couldn’t really manage it, had a woman actually grab the handles and try to move me out of the way of her enormous stroller. Think about the for a second, because I’m sure said woman would have screamed bloody murder if someone had tried to grab her stroller like that, you know?

But really, none of this is on my nerves quite as much as this story: It seems that a kindergarten teacher led her class to vote a five-year-old with Asperger’s “off the island,” so to speak. Encouraging the kids to call him “disgusting” and “annoying” (you know, I’m sure this was in the guise of “sharing their feelings”), “his Morningside Elementary teacher said they were going to take a vote… By a 14 to 2 margin, the class voted him out of the class.”

The cherry on top, of course, for anyone who follows disability news whatsoever, is the article’s “comments section.” If anyone ever tells you disablism doesn’t exist, please direct them to the comments section of any article on disability. Here are some gems:

This is a great way to let the democratic process intervein in problem solving and conclude in a determination by your peers. This should be a good time for parents to use this as a learning experience for their child. What can he do differently? Does he want to be a member of the class?
This is cutting edge behavior management.

People want to fire this woman? I’m willing to bet money that some of these yah-hoos who post would do the same, if not worse if they had to deal with a disruptive child in class. People are SO QUICK to judge.

To “teachcbs”: As a teacher myself, I DO NOT believe in mainstreaming. What a way to water down education and force the teachers to multitask their abilities all for the sake of a politically correct concept.

How about the education of the other kids in this class. Does that matter to ANYONE? This kid is in the PROCESS of being diagnosed with and ALLEGED problem. That means he isn’t sick yet. Too many GD excuses nowadays. The parents should be brought up on charges of impersonating good parents. Maybe this wasn’t the best method but this is getting out of hand with discipline or lack thereof in the schools. Raise the level of discipline and watch the scores go up.

Why didn’t the Principal separate this child by putting him in a special class. Autism is distruptive and it was the children who said they thought he was disgusting, etc… I believe the adminstrative end has failed the teacher and she was probably forced to deal with a child with special needs and this was a way to do it. I expect what happened to this child was probably not any worse than what he was dishing out to the others.

The teacher did the job the school officals would not do, maybe the wrong way to some , but at least the problem is identified and now both Alex and his classmates have a chance to excell in their own way and not just put it off for another day.

I support the teacher. The brat should be made to understand how his classmates feel about his behavior.

So. Yet again, I’m in make-up post-semester hell. But it will be fine, it will all be fine, I have Provigil and I’m in much less pain and thank God for my husband who is the world’s most attached, mellow babywearing dad and seems more than chill with taking The Beako out for long walks while I get all this last-semester stuff finished. I am not well, but you know. Well for me.

Also, trumpet fanfare please, The Chair should be arriving any day now!

Anyway, feeling better. Well enough, at least, to shill for my friends. So, in the interests of passing my little cup of joy around the room, two things have been making me utterly thrilled lately:

Organic chocolate from Snake and Butterfly.

Oh my goodness. Since I’ve gotten utterly ridiculous about what I eat, chocolate’s been kind of off the table for me. Celeste’s chocolate is completely different–sort of like what I imagine chocolate would taste like if you followed a winding trail through the rainforest to the secret stone temple of the ancient, dream-like chocolate-gods.

OK, if that image is a bit much for you, I will mention that she uses live raw cacao beans, mills the chocolate in small batches to an extremely delicate texture, and sweetens it with things like maple sugar and agave nectar and most importantly it tastes clean and it does not make me sick.

She makes coffee bars and truffles all sorts of good things. I’m pestering her to make me a Mexican chocolate bar with cinnamon and cumin in it. Go. Buy from her. She doesn’t have a site set up yet, but will add you to her mailing list if you send an email to snakeandbutterfly@gmail.com. Do so.

The second thing I’m in love with?

T-shirts, thermals, anything and everything made by Love Nico.

(designer Corinne painting the Love Nico tees)

First of all, they’re called Love Nico, so obviously I am sold right there. However, Corinne has been making these spectacular shirts for a few years now, selling them through her own online shop as well as through Trash and Vaudeville, Hot Topic, and Urban Outfitters. One might think that with her early success she might have slacked off on quality, however instead Corinne has set up an entirely new line. I won’t ruin it, because it really bears watching, but she’s created a fashion line that is a fairy tale (or vice versa), all beautifully extrapolated in a stunning animated movie on the Love Nico website. A movie, might I add, that I am “in;” I modeled for the character Blue.

I wish I were as talented as Corinne and Celeste, but we’ll see what happens when the academic drudgery is complete. If I can keep it together, I have projects in mind for the summer.

Not all in my head. Or rather, very much all in my head, but not in a made-up drama-queen kind of way.

Aseptic meningitis.

Apparently a rare but normal complication of IVIG.

Ow.

At least I know I’m not crazy.

Or, Why I Didn’t Blog Against Disablism, despite saying I would.

I have to cry like a bitch, now.

Because very few people I actually know, almost none of them in New York, actually read this thing. And because I have to say this to someone. And because I don’t know how much longer this can go on.

I’m finished. I’m over. I have no idea what to do.

I spend all day trying to do my best for these kids, which basically amounts to dragging myself around to keep them fed and in a clean-ish house, and then collapse in exhaustion and pain. MS is the least of it (despite the presence of delicious new lesions on the brainstem, which, aren’t those the blindness lesions? please correct me if I’m wrong)–I’m supposed to follow up on tentative diagnoses of RA and epilepsy, which… really? As my stepfather said when his business fell apart, what am I, Job?

Theoretically, I had finals this week. I did not attend.

I will be trying to retake them–the school was aware of the relapse and everything is properly documented.

If.

If I can get one single second. One good day. One fucking reprieve from all of this. A minute’s less pain so that I can read something. Write something. Do something.

Or should I just amp up on Provigil, go in, and retake them cold? Likely failing? Just to get the semester over with?

I haven’t slept well in such a long time. I was awake screaming at 5am, to the point where my husband had to take the baby outside for an early-morning neighborhood walk.

I will not be posting until I have something better to say than this.

My university has been transformed into a simulacrum of Hell.

I took one week away to recover, and recover I… well, haven’t, actually. There’s a possibility of another course of steroids, but I think I may just have to come to terms with the idea that I just got another little dollop of permanent symptom interestingness. After all, to quote Trevor Goodchild (so much sexier than Nietzsche), “that which does not kill us makes us stranger.”

Which is of course all good and well and I’m just so fucking thrilled at not having aspiration pneumonia that I’ll take all the rest of it as just part of what makes me me. However, much like last year, my very-posh-looking college cannot seem to get the fucking climate control together. And I’m having a tantrum about it.

Right when I most do not need to be sicker, in fact right at a point when I could really use some time resting in an ice-cold room, the whole damn place is blazing hot. This is some sort of situation whereby since it “isn’t supposed to be this hot outside yet” (whatever that means), the AC (which is manned by humans who presumably can look at a fucking weather report) “hasn’t been turned on yet.” The hell? Sorry? “Turned on…” is this a switch of some kind? Can I turn it on for you… no, really, don’t get up, happy to do it!

A few questions that run through my mind, in the classroom, when I’m supposed to be getting ready for finals:
It’s fucking hot in here.
Is this AC thing a “reasonable accommodation”? It’s expensive to turn on AC… but they keep claiming they “mean to,” and that “it will be on any day now.”
Could this bring on an attack?
A real one?
Could I get brain damage from this?
Then how is it any different from them* coshing me in the head with a brick?
Should I get a cooling vest?
Can I get them* to pay for said cooling vest? I can’t afford it.
I’m going to look like an ass in a cooling vest.
Well, whatever. I already walk like a drunk, and cover my ears in class when anyone claps or more than two people speak at once. And I’m old. Bring it on.

*them=everyone at my school responsible for this AC situation, from Facilities & Maintenance up to the President of the college, who I used to really like and now feel is sort of indirectly responsible for refusing me some cool air while the grounds crew uproots all the flowers and plants new ones for the fourth time or so this month.

I rode home tonight behind the Escalade Avenger.

No bully like his fellows, this big, sleek, shiny, black machine seemed placed on the road entirely to enforce highway etiquette–with extreme prejudice. Never have I seen a driver marry that kind of finesse with the serene knowledge of the serious mass of his car.

See, there are about eighteen places on my drive to school where a jackass can pull out and try to sidle up past all the cars waiting in line, only to nose his way back in when he’s managed to get himself a few cars closer to where he needs to be and piss off everybody. Not today. Escalade Avenger wasn’t having that shit, oh no. A master of The Block, he deftly planted himself in the path of anyone attempting to pretend the little bike lane/shoulder was another lane (made just for them), leaving no doubt in anyone’s mind that he was in charge, and such shenanigans were not going to be tolerated on his watch. A Murano actually pulled onto the shoulder at the disgrace of it all.

And for a few minutes I forgot how I feel about Escalades.

Escalade Avenger, your show of strength, how you took it on yourself to make the road safe for all of us… well, how could anyone argue with that? How could anyone hate you? If you didn’t do it, who would? I kept my little sea-blue Street Cruiser neatly in your wake, and knew I’d be safe from any rush-hour injustice. I lost you on the freeway, but that’s okay. I knew I’d be all right.

Seriously, guys, it was something to see. This guy was letting no one get away with anything. Triggered all the absent-daddy issues, and now I feel like a collaborator in the halls of power, leaning up against the SUVs because they’re strong. The guilt–I feel like I should go key my own car.

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.

Still Brewing is a Major Religion Post, or How I Stopped Humoring My Husband by Being a Practicing Catholic, Went Back to My Shinshu Temple, and Told Him he Could Come with Me or Do as he Liked. Which is not to say I am not a Christian, or even RC. Simply that I wasn’t before we married, and we agreed to try to integrate his Catholicism with my Jodo Shinshu and this has gotten us…. very Catholic for four years. I can’t do it like this anymore. I have such major problems with most Catholics that I know, that it’s reached the point where I seriously don’t think I can identify as one of them. Okay. Not starting inflammatory drama right now. Wait on the actually-thought-out post. Namu Amida Butsu.

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.