(Today’s) Thoughts on Trauma

From Rick Moody’s Demonology (the essay, published as nonfiction initially):

“I should fictionalize it more, I should conceal myself. I should consider the responsibilities of characterization, I should conflate her two children into one, or reverse their genders, or otherwise alter them, I should make her boyfriend a husband, I should explicate all the tributaries of my extended family (its remarriages, its internecine politics), I should novelize the whole thing, I should make it multigenerational, I should work in my forefathers (stonemasons and newspapermen), I should let artifice create an elegant surface, I should make the events orderly, I should wait and write about it later, I should wait until I’m not angry, I shouldn’t clutter a narrative with fragments, with mere recollections of good times, or with regrets, I should make Meredith’s death shapely and persuasive, not blunt and disjunctive, I shouldn’t have to think the unthinkable, I shouldn’t have to suffer, I should address her here directly (these are the ways I miss you), I should write only of affection, I should make our travels in this earthly landscape safe and secure, I should have a better ending, I shouldn’t say her life was short and often sad, I shouldn’t say she had her demons, as I do too.”

From the beginning of Lady Gaga’s Marry the Night music video (yes, I am actually doing this):

“When I look back on my life, it’s not that I don’t want to see things exactly as they happened, it’s just that I prefer to remember them in an artistic way. And truthfully, the lie of it all is much more honest because I invented it.

Clinical psychology tells us arguably that trauma is the ultimate killer. Memories are not recycled like atoms and particles in quantum physics; they can be lost forever. It’s sort of like my past is an unfinished painting and as the artist of that painting, I must fill in all the ugly holes and make it beautiful again.

It’s not that I’ve been dishonest, it’s just that I loathe reality.

For example, those nurses? They’re wearing next season Calvin Klein, and so am I. And the shoes?  Custom Giuseppe Zanotti. I tipped their gauze caps to the side like Parisian berets because I think it’s romantic, and I also believe that mint will be very big in fashion next Spring.

Check out this nurse on the right, she’s got a great ass. Bam.

The truth is, back then at the clinic, they only wore those funny hats to keep the blood out of their hair. And that girl on the left she ordered gummy bears and a knife a couple of hours ago. They only gave her the gummy bears.

I’d wished they’d only given me the gummy bears.”

A bunch of you probably know that I’m co-teaching a student forum called Writing Through Trauma (which has been a fantastic experience that I hope to co-repeat next semester), and so I’m constantly looking for new thoughts on trauma. The quoted passage from Demonology is not so new in that I’ve been thinking over it for a while.

I think the thing that I love about it is that it asks a question that drives me crazy: what is nonfiction? I think the answer that I’ve been the most satisfied with is: nonfiction does not intentionally break from the truth and it seeks to convey truth. Fiction, on the other hand, involves some break. The Lady Gaga quote also explores that theme. I think her take on it is that as long as the emotions conveyed are true, fact-checking is not really the point. I don’t really have a great conclusion for this, other than I think there are a lot of really exciting ideas in both of those quotes and that everyone should do trauma writing!

If how we define trauma is “something that shakes the foundation,” (my favorite definition thus far) everyone has experienced trauma. Writing about it is cathartic and therapeutic and worthwhile and if you’re inclined to write, do that. Write, write what scares you, write what keeps you up late, write what you’re thinking when you walk by yourself, write why the song that’s stuck in your head resonates, write constantly if you need to. And if you need to, then you know what I’m talking about.

Vote! Vote! Voooote!

If you were at the Punchline! show a couple weeks ago, I want you to imagine Regen saying the title of this blog post in the same way that she said “Spooorts.” 

Moving on.

I just filled out my absentee ballot to vote in the gret stet of Pennsyltucky, and I recommend that you also vote, dear readers! You can still register to vote in CT if you’re here by heading down to town hall tomorrow! If you’re already registered to vote, make sure you do that!

I know there’s maybe supposed to be some secrecy in ballots (clearly, starting this sentence with “I know” was a bit disingenuous..), but just to let y’all know, I voted for Barack Obama for President and Joe Biden for VP. (and a straight Democratic ticket all around!)

Here is my very personal plea, my guilting time: If you read this blog, you probably know me. And maybe care about me. Let’s make these issues personal. If Barack Obama is elected again, my pre-existing condition is covered under the changes to health insurance that Obamacare enacted. If Mitt Romney is elected, he will almost certainly attempt to repeal Obamacare. What does this mean for me?

This means that I would have to pay about $60,000 a year for medications alone. That doesn’t include doctor’s visits or procedures like MRIs which I need at least once a year.

That’s crazy. We talk about how hard it is to pay tuition here, around $56,000 per year, for four years. I’m talking about the rest of my life. So if you love me and you don’t want me to end up homeless and extra-disabled, vote Obama. There, I said it. I did a really terrible thing and I’m incredibly sorry.  I know it’s easier not to think about how the issues affect real people. But it’s not just about me, there are 400,000 Americans in the same boat MS-wise, and countless Americans with pre-existing conditions who would be similarly affected. If you care about those of us with disabilities and diseases and if you want us to be productive members of society, the only choice is Barack Obama. End of story. Also the Romneys are crazy. 

I’ve Been There

The panic attack I’m having is not really the most relevant/urgent panic attack in my life. I should probably be freaking out about dear old Hurricane Sandy (which hasn’t really hit Middletown yet, not sure if it will), but in terms of that, I’m mainly just hoping that we lose power ASAP for party/love/bonding purposes.

The panic attack I’m having is about MS.

Because all the medications that we’ve been told would work seem to be crumbling.

Because Rebif isn’t working.

Because of this article. Read this article.

Because Tysabri kills and Gilenya kills and BG-12 isn’t out yet. Because steroids make me sick and I’m feeling disillusioned about Copaxone. Because  14/18 days being migraine days is not the quality of life that I want to have.

Because I feel like stories aren’t being told.

Because I was talking to a friend and he was talking about Parkinson’s and he referenced the idea of becoming a “lifeless sack of meat” and then didn’t see how that could apply to me because MS isn’t as serious?

Wikipedia time: Almost any neurological symptom can appear with the disease, and often progresses to physical and cognitive disability

All of the people who said “Oh my god, I would kill myself if that happened to me” after I got diagnosed a) didn’t think about what they were saying to another human being and b) would probably just keep going like I do and not actually kill themselves but also c) thought that MS was serious.

MS is serious. 25% chance of being in a wheelchair by age 28 is serious. Think of how much that percentage will go up after those first 10 years. Think about this stuff. MS can “lifeless sack of meat” the hell out of you just as much as any other neurodegenerative disease. Think of all the stories that are untold because people can’t tell them. This positive outlook that the younger patients are being told to have might be a bit unwarranted.

I’m not saying don’t ask about what this life is like, because people should ask. And I want to be askable, I want people to not be worried about offending me. I think it’s just hard sometimes to deal with the preconceptions (misconceptions, really) that people have about my disease. This idea that MS is neurodegeneration-Lite is rough. I promise, you don’t want this disease either.

Yesterday I went to pick up a prescription and it wasn’t ready yet. Yesterday a man showed up at the pharmacy, and the pharmacist said to him “vitamin D and prednisone? It’ll be ready in about 10 minutes.” And he sat down and I said “Ha, vitamin D and prednisone? Been there.”

“Oh, yeah, it’s for my dad.”

“Oh, okay, I have MS.”

Silence for a while.

“Can I ask you what it’s like to live with MS?”

We talked a bit longer and then the pharmacist called him over and asked for the birthdate of the person whose prescription it was (his father). The year was 1947.

You know when you make up a narrative to explain a moment? All I could think was that his dad has MS and can’t talk about it because he can’t talk. And the guy that I talked to wanted to know what it was like. Because his dad couldn’t answer. All of us with these diseases can become vegetables. Or, more accurately based on what we’re made of, “lifeless sacks of meat.”

Vitamin D and prednisone. I’ve been there.

(thanks to my housemates who are trapped inside with me for helping me formulate this thought)

No More Pink!

Things that I’m aware of:

  • decaf coffee
  • Furbies
  • thousand island dressing
  • toy poodles
  • interpretive dance

These are things that I don’t really have feelings about. I don’t interact with them, and they don’t bother me. I don’t have to take any action against or for them. We can all inhabit the same world with no issue.

That’s what awareness means. From dictionary.com:

the state or condition of being aware;

having knowledge;consciousness:

The object of the information drive is to

raise awareness of what spreads HIV/AIDS.

I included the example given because it really illustrates what I’m talking about (thanks, example!). People talk a lot about disease awareness (breast cancer awareness! MS awareness!) but the example above really uses the idea correctly: the campaign is to raise awareness of what spreads HIV/AIDS, not just awareness that HIV/AIDS exists. Being aware of only the disease and of nothing about it (cause, prevention, treatment, symptoms) is useless. Being aware of something is what happens first so you can then have feelings and thoughts and actions. I tend to think that disease awareness campaigns are slightly useless because they don’t fully offer a next step.

October makes me acutely aware of the meaning of awareness because October is Breast Cancer Awareness month. Suddenly, everything is pink and everyone is urging you to be aware. My reasoning for why the “pinking” of breast cancer sucks is better explained by someone more intelligent in this lovely essay, so just read that. My reasoning about the whole awareness thing should probably have been made clear already, you should be aware of why I dislike awareness. If you start to have any feelings about why I dislike disease “awareness,” you have become more than just aware.

It is also rough to see this strange culture that has arisen of survivors, clad in pink, marching on, smiling, ignoring the people who have not survived. It is rough that these women are termed warriors, because the implications for those who are dead are unspoken yet deeply saddening. That those women were weak? That they were not true warriors? Losing out to cancer is not worth any shame.

Breast cancer is not pretty and pink and it destroys lives. It takes away people who are missed, deeply so. It has been ten very long years, and I still miss my Aunt Kathryn. It is worse because she did not get to know who I have become and it is worse because I never got to know who she was on a more equal level. It is worse that I only ever knew her from a child’s perspective (obviously there is some anger felt at the people who have said it is better that I “never really got to know her” and thus could not fully miss her). While she was “only” my aunt, she was a sister and daughter and a wife and all of us wish that we still had her filling those roles. If you are going to be aware of something, please be aware of what diseases take away from the world. Be aware of the holes left in families and the real, non-pink, disgusting tumors and consequences and tears and treatments and deaths.

I wanted to publish this while it was still October and people were still pretending to care and thus might notice a little extra.

The Woman Speaketh

I feel like for a while, Ann Romney’s (peculiar) thoughts on MS have been a lot of speculation based on not that much quotation, but I bring you this gem, courtesy of Oprah.*

“I think a lot of women have autoimmune diseases. I think what happens is, women have five balls up in the air all the time, and they can do it for a while. And then all of a sudden the body just says, Sorry….Done. It gives you a few warnings, and then your body goes, I’m gonna make you crash to the ground where you can’t even pick your head up. Women try to push through so many things, and our bodies physically can’t do that.” -Ann Romney

I’m sorry, what? You think MS happens how exactly? Is this real life?

I mean, I know we don’t know the cause of MS and I know that women have a higher incidence, but there is literally no evidence to support her theory. Especially since she makes it sound like this disease of overworked Super Moms when, in fact, typically the onset of symptoms happens between ages 16 and 24. Not quite the same thing. Not quite what she’s talking about at all. People as young as 11 get MS. That’s not from baking too many brownies. This is real life, Ann. Also, she says this other thing:

“The prescription for MS is no stress, have a normal life, eat well, and exercise.”

 

Wait, Ann, I think you forgot something. What’s that thing… that thing that usually get prescribed.. that thing… hmm.. medication? Drugs? Yeah, that’s it. You should try some of that sometime, I hear it works better than even horseback riding! Who woulda thunk.

Not gonna lie, I did identify with one thing she said (and then immediately hated myself for agreeing with her):

“No one understands, unless they have MS, what fatigue is.”

I’m down with that. But beyond that, girl, you crazy. Crazier than Middletown residents in October. (hey, WesKids, you know what I’m talking about)

In other news: My meds weren’t super working in that I had migraines allthefucking time and my migraine meds were making me not human (dizzy, tired, unable to get out of bed, burning fingertips, the usual) and so I got switched to a nice, highly addictive mix of barbituates, acetaminophen, and caffeine. Welcome to the land of upper-downers, population: Me.

(thank you all for continuing to check in on my blog even when I’m being inattentive)

 *I heard Mitt let her out of the binder for this interview**

**Obligatory Mitt Romney + women in binders joke

You’re fantastic

I’ve been kind of panicking for the last couple days about how to do this thing.

Since I started doing birthday blog posts for some important people (though not all the important people!) in my life, I’ve known this post was coming up.

Okay. It’s barely my best friend’s birthday at this point. Gotta actually do this now.

I’m so glad you’re in my life, bff-sky (“you know when you write that, people might think you mean your BFF Sky, like my name is Sky or something?”) (his name is Michael, and bff-sky’s pronounced like it rhymes with Litvitskiy, for the record).

From sophomore year ITCOO: “So my best friend, who I’m eternally thankful for, does a lot of my injections.”

That doesn’t even begin to describe how amazing you’ve been.

Today in my nonfiction workshop, we were workshopping a piece of mine, and people got confused about a line about you doing an IV in your dorm room frosh year. There were a lot of comments like “do you mean a nurse? you don’t mean your friend…” but I do, in fact, mean my friend. Because you figured out how to do IVs in dorm rooms for me and you got me through that whole year of craziness (and then all the more everyday craziness that followed).

You are the best person, you are my favorite, ruv you bff-sky. Happy birthday. You’re 21! That’s fucking crazy.

Warning: Blood and Gore!

There will be blood. In this post. You won’t have to see it, but it’s there in writing. If you’re squeamish, turn back now! Quick! I’ve warned you!

Okay. Proceeding on. Everyone here has some vague idea of what they’re getting into, right?

Tonight in my trauma class, we workshopped this piece of mine. I got a lot of really good comments! Because my trauma class is fantastic. A lot of really good writers writing about really traumatic stuff. Welcome to trauma class. The bravest people ever.

Anyway, this is my piece. I’m posting the version that got workshopped, aka I haven’t implemented the awesome suggestions that I got yet. Here ya go. Btw, it’s a bit bloody. In case you missed that.

 

Extraction, Summer 2012


There are things that we do that we can’t talk about afterwards. There are things that other people won’t want to know.

There is a group of rats in cages in a red-lit room and they came here in a wire-mesh-lined box. Their eyes see only darkness; red eyes can’t see red lights.

The cage is selected purposefully, the rat within the cage could be any of the four. One is picked up. His tail has black lines drawn on it to identify him but today the lines are uncounted.

The syringe is filled with a clear sedative. The rat is cupped in a hand and swung through the air, back and forth, until he stops struggling. The tip of the needle is inserted into his stomach. The plunger is pushed. He is placed in a box. Eventually he sleeps.

White lab coats are put on. White light overhead.

He is picked up again, and pinned to a tray. He doesn’t feel the pins pushed through his limbs. Scissors cut open his chest cavity, and the skin is pulled back and also pinned. The blood is red.

A needle attached to a tube attached to a pump is inserted into his left atrium, and the pump is turned on. It pumps phosphorous-buffered saline throughout his cardiovascular system, using the still-beating heart to insure that the blood is flushed out of all his veins.

The blood soaks the white fur. The heart continues to beat. The phosphorous-buffered saline is replaced with a beaker of paraformaldehyde. The pumping continues. The heart preserves the body.

A toe twitches. A miniscule squeak.

The pumping finishes. The pins are removed. The dripping body is lifted from the tray. The skin over the chest flops open. The heart is still.

A miniature green guillotine is removed from a cabinet. The head is inserted into the hole. A swift motion. The fleshy spinal cord hangs from the neck. The body is placed in a semi-transparent white garbage bag. The blood smears the inside of the plastic.

The head is placed on a tray. Red eyes are blind now to the white light.