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.

Friday, September 12, 2014

It Isn't a Girl!

A year or so ago, I suddenly became obsessed with Jack the Ripper. I went on a two or three day long murderer spree, combing the internet for information. After that, I abruptly forgot all about it. This week, I was terribly relieved to hear he had been identified through DNA testing. This may not be true, but I have to believe it is. Because the alternative is too disturbing to contemplate. This chapter in "my" life needs to be closed.

While combing through a list of suspects, I came face to face with the terrifying possibility that Jack the Ripper was Jill the Ripper. It's difficult to fully convey how much this upset me. I'm pretty sure the page I linked to contains a pencil drawing of a guess of what she looked like, but the truth is I can't even have that in front of me long enough to say for sure. The idea, as I remember it, was that she could have been a midwife, someone who could walk around with blood on her clothes without drawing suspicion.

The question is, why does the possibility that a savage serial killer could have been a woman bother me so much? These victims died under the same horrific circumstances regardless of the gender of their killer. But logic doesn't change a thing. The very idea of Jack the Ripper being female makes my blood run cold.

I can speculate. Maybe it's because women are conditioned to fear male violence. I make it a (mostly unconscious) policy to exercise caution around men I don't know. It's not that I think women are angels. There was that girl in seventh grade who wanted to fight me. I could get punched in the face by one, or have money or even my identity stolen. But I guess I've always implicitly trusted other women not to sadistically murder me.

You know how sometimes, you're talking to someone, and you realize they're thinking about the best way to dispose of your body? Neither did I, until I answered an ad on Craigslist after my son was born. A woman claiming to be pregnant with a boy and destitute was soliciting baby things, so I gave her a call. But when we tried to make plans, she started making every excuse she could think of not to meet me at a neutral location. She was working very hard to get me to her house.

"This woman wants to kill me and steal my baby!" I thought. At the time, I thought it probably wasn't true, but for a number of reasons didn't seem worth the risk. A year later, I heard of a woman who was murdered in Oregon after answering a very similar ad.

So I'm semi-confident that the only person who's ever seriously considered killing me was female. Still, I find the idea of a a grizzly, cold-blooded female killer who preys on other women to be uniquely chilling. No matter your gender, I don't recommend you be a serial killer. But if you identify as female, poison is the preferred method. A lady never engages in bludgeoning. Do I really have to tell you this? I'm sorry to lay out my gender biases like this, but it's something I feel strongly about.

In many ways, I'm scared to death of women. Even so, they have this way of making me feel like they won't murder me. A lot of men have this ability too - nay, many men are quite capable of not seeming like they'll kill you - just not quite as reliably as women do.

I was surprised by my extreme reaction when it first came up, and discussed it with a few friends. At least one felt differently.

"Jack the Ripper has always freaked me out, but if it was a woman, well, I guess she must have had her reasons."