Archive for July 2013

Naming Things: If Lassie had been Named Buzzkill And Why My Illness Doesn’t Have A Name

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.

What should we name you? CanYouHearMeNow? Earie? Bernadette?

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.

My Abdomen is the Tower of Babel – (is a weird thing to admit)

There was once a giant tower built up to the heavens and a single population of people all speaking one language. But the reigning god decided to confound people because they should not know all – and this god destroyed the tower and scattered the people and the languages around the Earth.

When I was in high school, I inherited my sister’s blue Ford Taurus which came with a Toad The Wet Sprocket tape stuck in the tape player. What this meant was, either you listened to Toad the Wet Sprocket, or you didn’t listen to anything. I mostly didn’t listen to anything. But sometimes I listened to Toad the Wet Sprocket. And eventually I knew every word to every song on that tape. And one day I couldn’t hear any of those songs anymore without wanting to flay off my own skin or scratch at my eyeballs.

At some point the car was sold or the tape was freed and I was no longer bound to that exhaustive record, but then, occasionally thereafter it felt good to replay those familiar songs. It took me right back to a very specific time and place: To being a teenager in Columbus OH, to looking for ways to dance at campus bars (you had to be 18) or drinking Mad Dog – kiwi flavored – driving in that Taurus (not together…necessarily.)

Toad the Wet Sprocket Fancy Album Cover

There was one song – “Pray your Gods” – that took the longest to truly irritate me because it had the best lyrics – which you know…let’s face it, it wasn’t Dylan – it was Toad the Wet Sprocket – they gave themselves that band name. But I really liked that song the most of all the songs on that not-necessarily award-winning record. And even now I sometimes crank it up just to sit with it for a minute.

At the end of the song a woman with a way better voice than the nasal-y lead singer starts repeating “dona nobis pacem.” Until today, I never looked up what that phrase meant. I knew it was in a Christmas song we sang in choir at some point – but in high school there was no google. So I sang it blindly, loudly, probably assuming it wasn’t declaring something about sex with animals or clubbing baby seals.

It means, “Grant us peace.” (Thanks google!)

There are two things about knowing the meaning: 1) What a nice thing. And 2) Not knowing the translation for so long but singing it about a million times in spite of the not knowing is very like me.

I have a “tramp stamp” on my lower back in a foreign language. I thought it meant “The power of the feminine.” It means “Woman,” and it’s on all the bathroom’s in China, my friend Sarah once told me. This is a mistake I would definitely make. I can’t even be mad or embarrassed about it.

So the disconnect that has become very real in my body as our family gene does it’s seemingly-unfathomable work – seems pathetically in-character. The fact is, much of what my body is doing just doesn’t make medical sense. So treatment is sort of abstract – like speaking to someone in a foreign language without accompanying facial expressions or charade-hands.

As I proactively address some of the things that are happening in my body – I am realizing that my body is mumbling. Or maybe a better metaphor is that it’s speaking Pig Latin flecked with Urdu and the clicking language – and no one understands it and vice versa.

This becomes further complicated when my doctor and I stop communicating effectively:

Me: The beta blockers are giving me very bad asthma.

Him: Try this other beta blocker.

Me: Great. So, this beta blocker doesn’t cause asthma?

Him: No, it also causes asthma.

Me: ???

Handsome Orson and Stuffed Orson. Because it's cute.

So my concern that walking had become difficult due to decreased oxygen in my muscles meant that I was going to have to go to the man in the mirror for some soul searching – see if me and my body could come to some kind of an understanding despite linguistic differences. Two weeks ago, I took myself off the beta blockers and read up on lowering my blood pressure holistically. This has lead to a two week cucumber, hibiscus tea, meditation and kiwi overload. Three times a day, every day.

Feeling really good off of the pills – well hydrated and spiritually connected – I decided to take myself for a victory lymphatic drainage massage on my right leg which is swollen and gets painful when in the heat of summer I can’t wear my compression stockings due to humidity. (This is a game of lesser evils, I am finding.)

As I lay on the table and the therapist gently manipulated my lymphatic hot spots, I closed my eyes and pictured my blood pressure slowing. I breathed deeply. I meditated on a low abdominal BP.

Then the therapist said calmly, breath into your abdomen and exhale with a “Shhh.” So I complied. We did it five times. Then she fumbled around my belly a little aggressively while I laid there thinking, “Please don’t make me have to tell you I have delicate pop-able blood vessels all up in there…” and just as I was panicking, she stopped and said, “I am trying to get your abdominal blood pressure up.”


So I said, “What?”

And she explained, “We are trying to pull the lymph up from your leg and we want to increase the pressure in your abdomen…” and just like that – my multi-lingual body needed the thing it needed the least. My pig latin speaking/performance art loving body. I was a living dumb modern art rendition of an upside down bathroom that didn’t make any sense. I needed low abdominal blood pressure and high abdominal blood pressure at the same time. A fallen Tower of Babel in one stupid abdomen.

The rest of the massage was standard upward rubbing. But by then I didn’t know whether to mentally lower my abdominal blood pressure, increase it or just start interpretive dancing to Pat Benetar’s Love is a Battlefield – which is one of the best, most satisfying songs to interpretive dance. Seriously. Try it.

So, dona nobis pachem. Right? Because that’s kind of all that’s left to say…

Glumps of Tissue

The silent waiting room to which I returned fifteen minutes after I’d left it – remained silent.

“Wait. Seriously?” I said to no one in particular because I totally could not contain myself. “That’s what a mammogram is?”

There were four women in the room and all of them looked up at me at once from their various articles about Jennifer Anniston’s relationship at various levels of happiness. Then they quickly looked at each other – because, was the question rhetorical? Because if not, how could they know? Maybe it was a mammogram and maybe, judging from the level of my indignation, that was an alien rectal-probe. They couldn’t know for sure. They hadn’t left the room with me. So I eased up.

“That was my first mammogram,” I said, “- and wow. I cannot believe that’s really what they’ve come with – even though, between Avon, Revlon, Susan G. Komen and Forest Gump, a lot of people have collectively circumnavigated the planet a lot of times in the name of boobies.” That’s a rough quote. I don’t think I said “boobies.”

And then it was like a floodgate burst forth. And those four silent women, each of whom bore a surprising resemblance to my mother in one way or another, suddenly started nodding, smiling vigorously and talking in unison.

“Can you imagine anyone letting his penis get smooshed in that thing?”

“Are you kidding? If mammogram’s were a man’s test they’d be heavily sedated and lying down.”

“My 90-year-old mother had to have one a few weeks ago and she cried.”

“Oh, I’ve cried.”

“Me too. These new ones aren’t as bad.”

“Wait,” I stopped them, “you mean there’s a worse version? What do they do, flay off the skin first with a butter knife?”

Everyone nodded and in unison said some version of, “Oy vey you’re not kidding.”

Then we all just shook our heads.

I had come in for a routine mammogram – having been told since I was 25 I’d need to start getting them by 35 since my mother had had pre-menopausal breast cancer in the 1990’s – and I was now pushing 39. It wasn’t that I didn’t know what a mammogram was – I just didn’t know, you know? Like you can’t totally know what a bullet feels like before you’ve been shot, or the crushing pain of an avalanche…that lands on your breasts.

Now I don’t want to give short-shrift to this life-saving test or undermine it’s importance. I know there are a lot of things we do in spite of discomfort for the sake of health and wellness – We go to the dentist, we eat Quinoa, we pretend to care about jazz music, art museums and public television – so I will say with absolute clarity, that even after having seen the dark side of this statement – if you are at an age where they recommend you get a mammogram – GO GET A MAMMOGRAM!

But just so you are prepared, I will tell you what it will be like:
1. You walk in. Right out of the gate, before you are plied with  bottle of Pinot, you will be asked to take off everything from the waist up. Bare-breasted in broad daylight with a stranger you will awkwardly cover your boobs with your arms. Then you will say something to break up the total weirdness like, “This is nothing to you ,right? You must see so many breasts…” to which your technician will reply, “Ohmygod, totally. They’re like glumps of tissue – just big glumps.”

And you will be distracted by the non-word “glump” when used as a descriptor for a part of your body.

2. Your technician will affix small nipple size stickers onto your nipples. You will not find tassels on them although you will look.

3. You will be walked over to a twelve foot tall machine with large plastic trays that look very like printer trays, but that you will soon learn possess the power of evil.

4. You will be positioned by the technician, and by “positioned” I mean, your arm will be flung backward, you will be told to move your stomach, although you won’t be sure where to move it since she has your breast in her hand and is hamburgering it between the two plastic claws of insanity. She will simultaneously knee your thighs toward the machine while telling you to move your head, “up.” Then she will tell you to hold your breath, as if there was another option.

5. You will incur 6 more of these “positions.”

6. You will start saying the word “fuck” a lot, like, “If men had to have this fucking test you can bet they’d have the fucking plastic plates lined with fucking ferret fur and squeezing would be replaced with cradling and there would be fucking candy!” and then you will apologize for swearing because it isn’t her fault Seimen’s hasn’t worked out a better plan – and she’ll go- because she’s heard it all before, including 90-year-old women crying, “Whatever gets you through.”

Tonight, I am glad I had a mammogram. Everything checked out and now I have a baseline understanding of what is happening in my at-risk breast tissue – Plus the mind forgets pain.

But let’s just say I looked up screening for testicular cancer and nowhere did I read “unmedicated, willful squashing of the testes in a vice while contorting in award-winning acrobatic positions and possibly crying.”

Because, no fucking way.