Retired Waif

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.