The first thing I did when I began my blog is I named it – because that’s what people do. They name things. It’s how we organize and order them. Names, out of the gate offer clues into what a thing is. Right? Like whether it is living or inanimate (a “plant” vs. an “appliance” for example). Whether it is male or female (“Suzy” the cat, rather than “Jonathan” the cat). Names are associations, clues and a first-foot-forward. Impressions are of course also made up of appearances – say you run into a guy wearing a 3 piece tux and a little salt and pepper in his side-burns. You might decide this guy is somebody. Then when he shakes your hand and says, “It’s a pleasure to meet you, my name’s Gypsy Taco,” your whole impression changes – especially when you realize you are standing on the Coney Island boardwalk at 7AM on a Tuesday.
Names are important like that.
When I named this blog, “By Any Other Name Would Smell” I had this idea that all the entries would in some way refer back to names and naming things. I don’t think I have overtly lived up to this intention. But I have actually considered and maybe even said out lout in earnest after a few glasses of wine and a hit of pot that when you think about it, dude, writing words is basically the naming of things without having to talk about naming them, so…like…What were we talking about?
Anyhoo, we named our first dog Dee Dee Ramone because frankly, she resembled the Ramone’s bass player of the same name (See the pics below: Right? Uncanny.) Our second dog arrived with the name Denzel. He is a Rottweiler-mix, and the idea of a couple of white people calling out “Denzel” to their big black dog on the streets of Brooklyn just felt wrong. So we changed his name to Orson. Now everyone goes “As in Wells?” when I tell them his name. Last week I would shake my head no and tell a whole story about how I wanted to name him Ender after a really great character in a 1980’s sci-fi book. But my husband was all, “Ender? Are you high?” So I agreed to Orson – after the writer of that book, Orson Scott-Card.
I knew Orson Scott-Card was a Mormon conservative. But I like his fricken books, okay? I am the first person to change my profile picture to an equals sign in a pinch, or smile at the sight of naked people marching anywhere with rainbow flags. I dance at gay weddings. I only vote for gay-loving politicians. But Ender’s Game is one of my favorite books. It just is. And I’m not alone. The thing won the Hugo. I’ve since read about 6 other books by the man, and I think he is a major douch-nozzle that should stick to fiction and not speak. But I named my dog after the part of him that is a great writer.
And names are important. When I named my dog I wasn’t anticipating the political fallout over a movie I didn’t even know at the time they were making (but I am so so happy they are making it. There I said it. #FirstInLine and then I’ll come dance at your gay wedding…)
Every time people go, “What’s the name of your illness?” (because lately people know there is an illness) I go “There is no name,” and this is also a problem. In some ways this is a bigger problem than even a black dog owned by white people in Brooklyn named Denzel. The lack of a name means there is no point of reference, no initial clue, no consensus on what this is. And worse, there is no introduction, no, “Hi, my name is Cystic Fibrosis, what’s yours?”
My friend Amy is pregnant and we have already spent a lot of time talking about the name of her unborn baby. I have spent even more time thinking about the name of her unborn baby on my own. Because I really like naming things. I like the order that comes with a name.
But naming an illness – a new disease – is a pretty complicated thing. I mean, the first thing you have to do is prove that in fact it is a new disease. Like, maybe it’s an offshoot of an old disease – like some exposure to a bad bacteria in your McNuggets that has caused good old fashioned pneumonia to look like liver failure without the failing liver part of liver failure. This is not actually a thing, but the medical powers that be need the people with the naming power to do the leg work.
Now, the second thing that has to happen is that you have to have a group of people with naming power. This we have. The people at the Seidman Lab at Harvard have the power to name things. But first they have to prove things – like that we don’t have morphed pneumonia. Since we have a mutated gene, the next thing is to take all the people who have the gene and make sure that they all share both the mutation as well as the symptoms. That’s easy right? Except it isn’t. Because we don’t all share the symptoms. In fact, the symptoms vary wildly. Some people have no symptoms. Some people have some but not all of the symptoms but are also 90 years old like my grandmother. The problem with this becomes the reality that because we are related our problem might be more than one mutation – we share a lot of protein sequences. Or a specific combination of genes that are causing this disease, and not simply the one mutation. In other words figuring out what the thing is causing is as important as figuring out what is causing it.
So the Seidman Lab says that they have two ways of proving that what we are suffering from is directly related to one specific off-protein in a sequence of proteins on our X-Chromosomes. 1) We mutate this chromosome in an unrelated body – like that of a mouse, or 2) we find it in an unrelated family.
A few years ago they successfully mutated the gene in the mouse but the mouse could not reproduce. I never saw him, but I heard he was a little overweight and not such a good dancer. Due to costs, they have not repeated the test. Instead they tried laying out and mapping the exome of three people in my family who are as far apart relationally as possible – so in our case that might be a great-uncle with a great-niece, or a pair of second cousins and a great-uncle. Since we are only 4 generations out from the mutation, as far as genetics go we share a very close genetic relationship to everyone – we may as well be identical twins, there will be so many genes in common. Like a person with Cystic Fibrosis in one family will have a largely different genome, other than the shared mutation for CF than someone else from a different family with CF. But not us. We’ll inevitably have a lot in common.
The genome mapping test similarly failed to prove – at least for the likes of the medicinal governing powers-that-be, that the gene was the cause of our health-misfortune. To put it in layman’s terms, it ALMOST proved it, like my doctor goes, “It’s totally the gene…” but it failed to prove it beyond a shadow of a doubt, which is what has to happen in order to legally name it.
So our disease remains nameless. So I like to call it “Darcy” – just kidding. Wouldn’t that be funny if I just turned this blog entry into things I like to call my failing body? Like “Nigel” or “One-Eye”?
My next step, as a writer and someone with access to the media (if by “access” I mean my University alumni magazine and a friend’s blog about furniture), is to go public. Like as public as I can. I will try to go more public than ever before. Write a book-public. The New York Times-public. Town cryer-public. And see if we can find a family with something similar going on in their bodies. Or see if we can find doctors who have heard of such things happening in birds they study or worms they’ve seen or catfish they’ve fried. We have to find someone who can compound the findings of the Seidman Lab and name our illness.
Then it can be published in order to begin a public discourse that won’t just help us, but will help people who are struggling with ACTUAL liver or heart disease. But it will also help us.
Today someone asked Orson’s name and after I told them they asked, “As in Wells?” I thought of the anti-gay crusader I had honored and said, “Yes. Exactly. Wells.”
Names are tricky. But they are how we identify things, how we identify each other. How we begin to form an understanding of who each of us is. They are important. And I am on a mission for a name.