Wednesday, September 24, 2014


Limbo is uncomfortable and unpleasant. Is it worse than hell? I'd like to think not, but who knows? It doesn't matter. There's no point in comparing misfortune. I'm relatively certain we don't all get our equal share. It doesn't come out fair in the end. If I keep that in mind, I know this cosmic unfairness has, so far, been skewed in my favor.

Even now that my husband has been suffering from some unknown ailment long? Two years? Three? Four? Even now, we're lucky. It's probably the best time in human history to be undiagnosed. Time was, a clinic in Bethesda, Maryland was the only place in the country dedicated to people with undiagnosed ailments. Even that has only been around since 2008. But just this summer, six more clinics have opened across the country.

Dr. House is real, sort of, in the form of Dr. William Gahl. Except he's a real guy, a team player, takes offense to being compared to Dr. House, and the majority of his cases still go unsolved. Even so, it's very heartening.

Lucky or not, days, months, years go by, and sometimes I am very, very tired. Not as tired as Jeremy, my undiagnosed husband. I'm not forgetting that it is he, and not myself, who is sick. But still. So. Goddamn. Tired. So tired I'm not sure if I'm even writing coherently, and but I'll probably publish it without making sure.

I can't open a bottle of mineral water, so I think of asking Jeremy. He can usually open bottles and jars, I think. Once upon a time, if he couldn't, I wouldn't have thought anything of it. I would have blamed the bottle. But now, I'm terrified of finding out he can't, so I don't ask him to do it. I get a rubber band out of the junk drawer and wrap it around the lid. If that doesn't work, I'll have plain old water. I should have been self-reliant enough to figure these things out on my own all along, shouldn't I?

I've always understood that it wasn't neglect or carelessness that led to Jeremy's lack of diagnosis. The doctors don't know. If you don't know, you don't know. They can either be honest about that, like they have been, or they can make something up, and I'd rather they didn't. The individual doctors aren't to blame, but I see now that the medical profession does bear some responsibility. One might think undiagnosed illnesses and the internet are a match made in heaven. After all, if a disease is rare, it stands to reason that a doctor, even a specialist, will rarely see it. But doctors with patients they can't diagnose live as though it's the 20th century. Complain about it all you want, but the internet has a lot of non-frivolous purposes, and this could be one of them. Consider, for example, Heather Long's idea. It came to her in the worst possible way.

I know you don't have any money. I know you're already donating what you can to whatever causes resonate the most with you, and I can respect that what resonates with you might be different than what resonates with me. I can even dig that your reasons may be less selfish than my own. It's so annoying to be constantly hit up for money. But I'd really like to see this film be finished. Donate if you want to.

It's important. For you, and me (but mostly me).

Well, mostly Jeremy, but I can't work in a delightful song if I put it that way. We don't even necessarily need better medical advances (although it couldn't hurt). We just need to be able to make the most of what we already have. Raising awareness would help quite a bit with that.

It's not that we feel alone. We don't. I don't. Jeremy probably does, because how could he not? When I read about people with serious diseases, they have almost always heard the most awful, insensitive things. Not us! This entire, um, journey (we'd go on more actual journeys without it, prolly) has reaffirmed what every hardship in my life has taught me - that people are wonderful. We're not lacking in emotional support (but I don't mean stop). What we really need is practical, tangible help. From the medical community.

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