(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.

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