March 2007

Mnemosyne, Goddess of Memory
(Mnemosyne, Goddess of Memory)

Yesterday I got an email from my favorite professor.  Among other questions, I’d asked him if he could intercede with the dean to make sure I had appropriately dropped a course with him that I’d registered for.  Yes, I could have done this myself, back when I dropped the course.  I didn’t because, like much of what’s been going on right now, the whole thing was too depressing to look at straight-on.

The course was called “The Monastic Experience” and was basically the sort of thing I’d been hoping someone would teach for a while.  It also included a study trip to France, where we’d visit Cluny and the Taize community and generally soak up European monasticism.  I reiterate, not only is this basically at the center of everything I study, but the idea of a short trip to France was really appealing–I’m about to have this baby, and who knows when I’ll make such a trip on my own again.  Implicit in that reasoning is an aknowledgement of the extent to which my mobility has been limited already, and the impossibility of knowing how much worse things are going to get, and how soon.  Well, a nasty little fever hit about three weeks before the trip and I suddenly found myself unable to walk one evening.  I have no idea why I confess this to the world at large, considering that I’ve been unable to share the incident with my friends or family (if my husband hadn’t been there, I wouldn’t have told him either), but suffice to say it was scary enough that I cancelled the trip to France and withdrew from the course on monasticism.  But not formally.  Couldn’t quite make that little walk over the the dean’s office, for reasons that had nothing to do with the heavy doors and shitty elevators in the faux-Gothic building where the offices are and everything to do with the fact that I’m not really ready to sit down and have that particular conversation right now.

So, my professor emailed me to let me know I’d been withdrawn from the class, but the the dean wanted to see me to talk about things…”he is very supportive of you, as I hope you know.”  I know this dean and like him.  He’s actually also my neighbor, more or less, and I know he’d be helpful.  And still.  I’m really just not ready to sit down with him and actually go through the MS issues and how they’re affecting me academically–because I don’t want to discuss it.  I haven’t done that with anyone, rather I’ve carefully kept things appearing as a series of isolated incidents, flakiness, pregnancy malaise, and general smoke and mirrors.  I Am. Not. Ready. to sit down and actually explain the past year to anyone.

But I don’t think I really have a choice anymore.

Last September, I sat in my neurologist’s office and basically begged him to treat my cognitive symptoms.  Adderal, I said.  Ritalin.  An Alzheimer’s drug.  Something?

But you’re trying to get pregnant, he said.  We’ll have to talk about it later.  In a year or so.  It’s a possibility, sure, but not now.

And so I pretty much tried to put things out of my mind, which should be lot easier for someone having memory issues than it’s proved to be.  I tried to smile my way through last semester and keep up with my reading.  I got pregnant just in time to be violently ill for both midterms and finals.  I visited professors in their office hours.  I tried to balance asking for special treatment with being sweetly brave and asserting that I could do things that, I was becoming fairly certain, I might not ever be able to do again.  And I told the dean, and my professors, a little bit about the fatigue and a little bit about the right-side weakness, and didn’t mention the rest of it.  Last semester may have been a wash.  It’s one of the things the dean wants to see me about.  But I don’t have the financial ability or the stamina to take an additional year to graduate, so I’m not ready to have that conversation yet.

I’m tremendously sorry for having turned into such a crap student, but I’m also a bit angry as well.  I’m angry with myself for making “looking well” such a priority that it’s gotten in the way of actually doing well.  An example:  75% of the time, my right hand isn’t working well enough to take notes.  I once mentioned to a professor that it would be very helpful to record the class, and would he mind?  He seemed put off by the idea, and sort of said something like “it isn’t necessary,” and well… I was embarrassed, and I haven’t brought it up again with anyone else.  In fact, what do I do?  A very sneaky little maneuver in which I use my left hand to curl the fingers of my right hand around the pencil, and then rest my pencil-holding right arm on a stack of last year’s notes.  So that it looks like I’m doing something, and am not a useless peice of firewood taking up space.

This Tuesday, we had our first Really Nice Warm Day.  And, as is common in big institutional buildings, the climate control hadn’t really caught up with the weather.  The classrooms were hot.  Very hot.  I wasn’t bundled up, but I wasn’t in shorts and a tank top with an ice pack either.  And so, by the middle of my third class, I was in the midst of a major flare-up that went into 24 hours of pain and then 48 more hours of sleeping and eating rice straight out of the rice cooker.  And I forgot everything that happened that Tuesday, including that I was supposed to bring in work on Friday.

So seriously, tell me disability-services office, or dean, or husband, or well-meaning friends, how the fuck I’m supposed the react when I’m being asked about these assignments and cannot, will not bring myself to say anything more than the most literal truth, that being simply “I forgot.”

I forgot.  Like I was late to your class twice last week because I forgot where it was.  Like I forgot your name, when I was trying to email you.  This was my first symptom, the very first thing that got me telling my husband something was really wrong.  It’s been easy to hide the forgetting behind the weakness and the pain, to dismiss it as “a pregnant thing,” or to pretend it wasn’t happening.

Somehow, I’m going to have to fix things at school.  I’m going to have to do this in spite of the fact that I can’t fit into desks very well, that I don’t know where to begin with resolving the issues from last semester, and that if one more person gives me grief about taking the elevator from the first to the second floor I’m going to punch them in the neck with my good arm.

But I do not know how to begin explaining the memory issues.  I’m just so afraid that that will be the moment that they look at me and begin to write me off.  That that will be the end.

I doubt that very many women can say that they got their old body back during pregnancy. Certainly nothing of the kind happened to me the first time around; by this point in my last pregnancy I’d gained something close to forty pounds and chopped off all my hair. Although I was ten years younger, I can’t pretend I looked terribly good while with child. This time, oddly, I’m kind of pleased by how I look.

I wasn’t expecting much. I got pregnant shortly after stopping a major course of prednisone, which had put an alarming amount of weight on me. I didn’t really recognize the person I saw in the mirror, and it was frightening. I fully expected an enormous pregnancy weight gain that would never really come off, followed by a post-partum and MS-related inability to do any real working out to leave me moaning over pictures of my former self. Instead, over the past month, I’ve somehow gone back to looking much like I always used to, except of course I look like I’m carrying a pillow under my dress.

Apparently, the steroid weight will drop off, pregnant or not. I’ve actually only gained about four or five pounds this pregnancy, something that worried me until my doctor explained that a twenty-five-pound chemically-induced weight gain in the months before conception probably had to be taken into account.

All this is a very roundabout way of saying that when I finally let my husband take some of the dreaded “belly shots” of late pregnancy, I was actually pleasantly surprised.

Of course, lest we get too full of ourselves while the growing child is nicely covered with a scarf, a straight-on view might tell a different story–may I remind you that there is an entire child in there (who, I just discovered today, already has fingernails).

I literally have not allowed pictures of me to be taken for nearly a year, other than the few full-face closeups I’ve taken with my new camera this past week. Can I be a girl for a moment, please? It’s awfully nice to have cheekbones again.

From what I’ve discussed with the doctor, some form of physical therapy will begin about six months after I give birth, once I get through the early phase of heightened risk of relapse. Since I plan on nursing, I’m going to be more or less limited to gamma globulin infusions to lower that risk, and anything that raises core temperature would be a bad idea. Still, as I come up on a year post-diagnosis, I suddenly find myself thinking about the things I can do rather than those I can’t. And so swimming will probably replace running and I may be able to start iaido or another solitary weapon form. It’s just a matter of getting over a certain amount of wounded pride. I spent most of my early twenties being attractively frail, and the discovery of strength a few years ago was fairly life-altering. Of course, so was the panic, when that strength inexplicably disappeared along with balance and energy.

In a strange way, I think pregnancy has been a good body-reclaiming tool. It’s given me a sort of languidness instead of a bone-deep lassitude, and a shape that makes sense (Pregnant Woman rather than Steroid Balloon). I’ve also regained a sex drive, which helps. They say that each pregnancy irrevocably changes your body; I’m just hoping that this change might take me more easily through the transition of figuring out what, exactly, my body can and can’t do.

(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.

(The following is liberally copied from a letter I recently sent a aquaintance, but I think it sums things up rather well.)

Women with MS supposedly go into “remission” when pregnant, but if you haven’t heard, “remission” is quite the little misnomer when it comes to MS. Someone can be in “remission” without having experienced a symptom-free day in years. All it really means is that you aren’t currently in the midst of an attack that’s creating new lesions on your brain to give you new fun symptoms–nothing about the symptoms you already have. Which in my case are fatigue (yes, I know, fatigue doesn’t seem like such a big deal, but trust me when my husband brings me a cup of tea, and I’m stirring the sugar in, and I find myself thinking “Wow, I hope these sugar crystals dissolve soon because my arm can’t keep up this stirring thing for much longer” then it’s a pretty ever-present problem), some weird inexplicable neurological pain, a stupid drunken-looking walk and a weak right hand. Pregnancy, however, exacerbates these symptoms to a pretty unlivable degree. Sometimes I mentally list the meds I’ll be taking as soon as pregnancy–and nursing–are over, imagining chemically-derived alertness, alleviation of pain, and so forth.

And of course, I have no real right to complain, as pregnancy is the ultimate selfish, narcissistic act among most of the people I know. “Wow, you’re pregnant, are you sure that’s a good idea?” “What are you going to do if things get worse?” “Don’t you think you have enough on your plate right now?” I find myself trying to hastily explain decisions that kept my husband and I up at night for weeks and nearly drove us to divorce, issues about the feasibility of pregnancy right now versus waiting for a degenerative neurological disease to possibly get much worse. It’s pretty much seen as an almost criminally irresponsible decision. And maybe it is. I also know that it was the only possible decision we could have made under the circumstances, when we were still reeling from the diagnosis and the fact that I wasn’t just a bizarre hypochondriac and wouldn’t be “getting better.” I got my diagnosis the same week I discovered I got funding to spend a summer doing research in Bhutan. Suddenly that was out of the question, and a million other things had to be reevaluated, but hey–at least we could say “Let’s have a baby” and do something vaguely life-affirming. We’d both wanted more children, and were waiting for the “right time,” this seemed like the best indication we’d ever get that the cliche that “there is no right time” was, in our case, very true.

So presumably, the last thing I should do is complain. And yet, I somehow dislike the implication that by “choosing” to have a baby, given that I have a chronic illness, I’m entitled to do little more than smile bravely as pregnancy and that self-same illness wreak total havoc on my ability to function. Whatever.