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.


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.

Image: As pregnant as it gets; the Retired Waif reclining in active labor.
I had had such a series of false alarms, had called my husband home from work so many times, had walked to keep contractions going or had a glass of wine to get them to stop so many times, that unfortunately I can’t really say that I “just knew” that was the day. I’d like to. I’d like to have some kind of bad-ass super-cool psychic-powers birth story as befits me, and the baby, and this awesome blog, and all that. Alas.

I was pretty damned determined that that would be the day, though. I’d been having spaced-out, stop-and-start labor for weeks, you see, and not knowing what to expect was driving us nearly out of our minds. There isn’t any real way to pinpoint the true “beginning” of labor, in this case.  I groused around the house.  He called out from work.  We waited through the afternoon.

I remember the first contraction that nearly knocked me down, though. Laugh if you like, but I was letting my hormones lead the way and baking a cake in early labor (seven-thirty at night or so). My husband was timing the contractions–funny, because I had been quite scornful of his utterly-male desire to time contractions during a homebirth…. (whatever for?) When it happened, though, we both found we really enjoyed the timing and making notes as the rhythm of the whole thing established itself.

My daughter had planned to attend the birth. I left the option open, and certainly had no plans to exclude her, but let her know that the instant things got at all scary, or boring, or weird, she had but to say the word and grandma would swoop her away to be pampered in Westchester. She saw which way the wind was blowing at eight o’clock or so, and made a graceful exit. I’m terribly glad about that–I actually think she might have suffered some trauma if she’d stayed.

The next hour or so were passed with my husband reading aloud (not Graham Greene for once, although The Quiet American once got me through a miserable hospital stay). He’s a marvelous reader, but it became hard to concentrate. It was impossible to either move or stay still.  Our midwife arrived, followed shortly by our doula, at around ten o’clock. The doula brought some white daisies that stand out particularly in my memory. I had chosen her for a doula because she’s someone I see as the opposite of invasive, and also because she’s very pretty, in a calming sort of way. It was nice to see her.

The midwife and doula went to rest, and my husband talked me through labor for an hour or so. At this point I should have realized that a certain amount of shutting down was going to be the best way to get through this; rather than try to do anything I made myself as still as possible and stared into his eyes and listened to his voice. I’d had no idea how to prepare for labor, and I’d later realize that the times I was able to withdraw were the only times I could really cope.

It was a very rapid labor, and felt very out of control. At a certain point I broke away from my husband and stood under the hot shower–painfully hot water was the only thing I wanted to feel at the time, but heat causes some dreadful MS symptoms for me, so I would stand under the shower until I got too weak to hold myself upright, drag myself back to the bedroom, and wait to regain strength to stand under the shower again.  I was unable to simultaneously deal with the people around me and the pain I was in. I spent a lot of time kneeling, with my husband pressing a hot water bottle into my back. That was nice. But there were too many people…

At about midnight, I remember crawling onto the bed, curling up, and closing my eyes.  Somehow, more than three hours passed, during which everyone else slept and I crouched perfectly still, with my eyes closed.  A non-verbal state was the only possible way I could have done it, and in retrospect it’s a state I should have stayed in.  Labor pain was utterly different in this state–I could actually follow the ebb and flow, the swelling and receding, rather than being completely overwhelmed.

The pain subsided somewhat, and was replaced by pressure, not unbearable, and a feeling of heaviness. I slept for a little while–and I remember the pressure growing, getting more intense, and becoming pain again.  I wasn’t ready for it, I started making noises, my husband came into the room and suddenly everyone was in the room.

It was here that I completely and utterly lost it.

I knew I was about to have the baby, could tell that I was about to have the baby, and couldn’t quite seem to make that clear.  The midwife and I got into a completely pointless argument about a hospital transfer, an internal exam, and other things.  I infuriated her so much she stormed out of the room.  I think she knew the baby was moments away from being born and was frustrated that I seemed to have completely lost focus?  I don’t know.

I took another trip to the shower, now beginning to involuntarily start pushing the baby out.  Going back into the bedroom, I was suddenly sick.  Water broke.  I dropped onto my knees next to the bed, reached down to feel him crowning, and was able to deliver his head–and two or three seconds later, the rest of him.

Image: black-and-white photograph of a new baby.

I remember looking over my left shoulder (the midwife had gently laid him down next to me on a towel) and seeing that he was a boy, that he had a funny little beak of an upper lip, and that he was most definitely alive.

Many, many different levels of relief.

Someone told my husband “You have a boy.”  My husband repeated “I have a boy?” with a crack in his voice, sounding like a boy himself.  Sitting on the bed, which I was kneeling next to, he told me later that I looked “very frail.”

So quickly, I had the baby in my arms.

Image:  New baby, new baby, new baby.  Squished face, wet skin, mama’s hand stroking his cheek.

I held him and stared at him.  He wasn’t ready to nurse yet.  The placenta delivered smoothly, I seemed in fine shape,  my husband held the baby while I showered.  I’m so happy I have pictures of those moments.

After the shower, bed.  Nursing, newborn exam, and a few hours sleep before the family started knocking on the door.

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.

Not really worst-case, but I do think it’s funny that I can’t quite seem to get it together to pick out an “assistive device,” and yet here are some things I have absolutely no problem conceiving of:

I have not only a boy’s and girl’s name chosen, but a name for our baby should baby’s gender be somehow indeterminate. Although rare, this is more common than people realize, and I’d like to be prepared with an awesome name and a ready welcome for the child–boy, girl, or… both?

I’ve decided what I’d like done with me after I’m dead. My husband, while not naturally quite as morbid as myself or my daughter, can be fairly easily drawn into these conversations. Our walk home brings us past a gravestone-carver, and we have had to hear innumerable times exactly which shade of rose-colored granite my nine-year-old thinks is appropriate for her marker. Husband and I, on the other hand, opt for the portability of cremation as a way to whichever one of us goes first “with” the other for as long as possible.

So, while the alabaster lovelies above will do for me, I’m a little more tempted to something like this for his ashes:

Like I said, these aren’t real worst-case scenarios. Intersexedness is one of the least scary birth issues, and everyone has to die sometime. I find all of this fairly comforting, to tell the truth. Far more comforting than just breaking down and at the very least getting some sort of cane, right?

I suppose I could always buy a stroller after the baby’s here, and just lean on it a lot.

(photo by the awesome Manjit Kaur, 6/9/2005)

So the pregnancy rant inspired some followup questions, namely:

“I hope you blog about the part of your relationship where you both wondered if you were a hypochondriac or what the hell was going on, and your decision to commit your lives together in the face of this diagnosis.”

Doesn’t that sound nice. I seem to have given off the impression that we did exactly that… sort of looked each other in the eye and bravely decided to walk into the uncertain future together. Unfortunately, it wasn’t really that cinematic. Besides, doesn’t the wife always die at the end of that movie?

What’s a good way to write about a year of gradually becoming the world’s biggest pain in the ass? How about an anecdote about being so tortured by these weird burrowy-itchy-headaches that I convinced myself I had mad cow disease? Symptoms that “come and go” with the precise timing to look exactly as if one were faking them (“You couldn’t walk five minutes ago and now you’re fine?”)

I wasn’t sick when we got married. Rather, it’s how we got to spend the first year of marriage.

When I finally did get a diagnosis, I convinced the neurologist not to admit me to the hospital that night. Instead, the next morning I got dressed in a ridiculous pair of spike-heeled sandals and had him half-carry me out for a nice lunch. Italian. It took a while for things to get testy. He read me Graham Greene novels in the hospital, and letters from Civil War soldiers, and I felt that somehow I should be experiencing the deep utter romantic poignancy of it all, all that “in sickness and in health” stuff, this unassailable proof of love.

Instead, panic. Because I could see ahead to a time when being with me would become an intolerable burden, and more chillingly than that, a time when I would have absolutely no bargaining power, when I couldn’t leave if I wanted to, or even if he wanted me to. I read the literature provided by the MS Society, and was completely unwilling to cast him in the role of “caregiver.” I’m not particularly proud of it, but the better he was at dealing with the situation, the stronger was the little voice saying walk away, while you can still walk.

And then, in the midst of all that, the Baby Question became suddenly very immediate. The Baby Question was also the Medication Question and the Treatment Plan Question. We had to decide right then if we wanted to have children right then or make damn sure we didn’t have any accidents. The Baby Question, of course, gave us something to fight about while we settled into the whole chronic-illness thing, and I actually think we needed a real issue to scream at each other about while we felt out the situation, to see what had changed and what was still there.

Of course, characteristically, in the end we didn’t make any big decision but sort of snuck it past ourselves. OK, no interferon drugs right now… maybe after the new year. OK, let’s move to a bigger apartment… because I can’t climb stairs anymore. Until we were so far into accidentally-on-purpose territory that there really wasn’t any hiding it anymore. So I suppose the whole “how it happened” story is one of hysteria, cowardice, uncalled-for-hostility, and maybe some cheerful fatalism thrown in.

I wish he’d known me better before I was such a mess. I really do wish I had had a chance to be super-cool-aikido-chick for a few years before I had to lean on him to go down a flight of stairs (not up, just down, it’s a balance thing.) I hate the fact that our marriage has grown around this thing, and I’ll never really know what its true shape might have been.