Turn On, Tune In, Drop Out

i.

I almost forgot how pretty you are,
And how something suspicious
surrounds you.
I am overwhelmed;
underground,
swallowing dirt
just to have something hit my lips.
Tune in: what’s that?
Nope, no one is sitting here.
I’ve lost my appetite.

ii.

I tune in just in time,
Why didn’t I write that down?
I follow this thought to a more civilized place -
How perfectly wretched,
Echoing in a British accent.
Eyes roll.
Page turns.
Sighs deep.
So deep, so deep,
Helm’s Deep.
Wait, how in the middle-earth did I get here?

iii.

I am surrounded by mothers.
Some Soon-to-be,
Others Wannabe.
Shouldn't I be
tuned in by now?
That palm reader in Queens said
I'd be a mother to three.
Seems improvident.
Highly improbable.
Somehow impossible.

Mutual Interests

I've been thinking a lot about mutual interests.

Well, only since I decided not to put my purse on the floor in the bathroom because the opening scene of A Visit from the Goon Squad involves theft in that exact scenario.

That, in turn, reminded me of a recent experience trying to date online in NYC. I messaged a handsome journalist who had accidentally typed, "A Visit from the Good Squad" to alert him to his error, hoping to show that I too am a writer, and I have read this book! Mutual interests!

"Ha Ha," he wrote, "what a different book that would make!"

We met for whiskey and ramen. Had a great time, and awkwardly said goodbye, hoping to see each other again. In an effort to clinch a second date, I followed his suggestion and read some of his work.

I immediately found a typo. This time, more embarrassingly, on a national publication rather than an already embarrassing OKCupid profile. The first time landed me a date, so I thought it would be advantageous to point out another flaw.

It turns out, men don't like to be reminded of their mistakes.

I even went the positive route - praise and affection. Support and admiration. Acceptance of awkwardness.

Compared with tales of former lovers, this was new, I wanted to be positive in my criticism. Bright and shiny, wide-eyed. I tread carefully into a constructed world where all are welcome (but only allegorically).

It turns out, men don't like to be reminded of their imperfections.

I'm so bad at this. I once painted a man so deep into a corner that the only way out was to tell me, "You're pretty". Impossible to recover: Nobody puts Baby in the corner.

It turns out, men don't like to be reminded of their lack of attention to detail. Note to self: stop dating creative types who's lives depend on post-it notes.

Living with Epilepsy

Epilepsy Overview:

Epilepsy preys on us in the most unlikely circumstances. The early signs of an oncoming seizure are fast-acting (like Tinactin), and can lead you into an aura that lasts mere seconds to minutes too many to count. Mine spring on in the most uncomfortable way. Instantly my mouth begins to water, and I have a hard time swallowing, followed by acute nausea often accompanied by diarrhea.

My head doesn't hurt anymore like it used to, at least not pre-seizure. Depending on how quickly the onset, I often develop a kind of tunnel vision. I have 20/20 vision, so I'm not exactly sure what myopia (near-sightedness) is like, but I imagine it must be like this as I can't see things that are too far away clearly. My hearing gets, well, blurry too. As in, I can't hear as usual, and often I can only hear the sound of my own heartbeat, or this weird swishing sound, almost like I am under water. This is also known as Bruit: an abnormal swishing or ringing sound in the ear caused by blood pulsing through an area of the brain.

Along with these symptoms, I also get mental confusion, including the inability to speak my thoughts clearly, or sometimes, at all. If I am alone, this causes no problems; if I am in public, I cannot communicate my needs clearly. This, you can imagine, scares people. It is amazing how disturbing it can be to see a stranger faint, or worse, go into convulsions.

I'm not actually sure how long the convulsions last - but I've heard 30 seconds to over a minute at a time. Judging by the severity of bruising along my shoulders, knees, and elbows, and how I feel when I wake up, its probably pretty crazy to watch. My lips are often riddled with blood blisters and puncture wounds from where I've bitten down during my unconsciousness.

I've had seizures all over the place. At the airport, in the kitchen, on the sidewalk, in the Subway, with a man inside me... seriously. It can happen anytime, anywhere.

My Epilepsy Story:

My epilepsy came on in my adult life as a result of an Arteriovenous Malformation (AVM). An AVM is abnormal cluster or tangle of blood vessels in the brain or spine. This birth defect happens either during fetal development or directly after birth when an infant's organs are still forming. AVMs are relatively rare; approximately 300,000 (.14%) Americans have them, but only 12% of those experience symptoms. My symptoms presented themselves as - you guessed it - a seizure! My first, occurred on July 7, 2004, when I was 22 years-old, while babysitting for a Neuroradiologist. Consider those odds. In addition, Dr. Marx had a son with various mental disabilities, including epilepsy. I was home alone with his three children, and collapsed in the kitchen, hitting my head against the brand new wall, leaving a baseball-sized dent. His wife, Lisa, pulled into the driveway as I lay unconscious on the floor. 10 minutes before and the kids would have still been in the pool outside, 10 minutes later, I would have been driving home.

As I had never had a seizure before, I thought I fainted from the heat, lack of a good diet, and dehydration. I was a recent college graduate after all, I hadn't managed to maintain a good sense of self-awareness or self-control at that time. I still smoked cigarettes for crying out loud. I got to the hospital, got a CAT scan and a Sprite, and waited to be released. That plan fell apart as soon as Dr. Marx returned home and accessed my scans on his home computer. After seeing a blurry dark spot in the CAT scan, he called the hospital and ordered an MRI. They told me the CAT scan didn't come out right, so I still sat oblivious to my brain condition. The MRI revealed the AVM, and suddenly, I was admitted, put on an IV, and requested to stay overnight.

Meanwhile, I couldn't get in touch with my parents to let them know all of this. This was pre-everyone-has-a-smartphone, and my parents were at a fundraiser having a good time. I finally reached them around 10pm, and conveyed the life-changing information over a staticky hospital phone. My mom could barely hear me, and when I said, "I'm at the hospital, I had a seizure," she thought I said I had a fever. "A fever," she said, "How high could it be!?". Only when I spelled out "S-E-I-Z-U-R-E" did she get the gravity of the situation. They arrived the next morning, along with Dr. Marx, and I learned all about the brain, the AVM, and my choices for treatment.

My Treatment:

My AVM was located in the front temporal lobe, home of the Wernicke's area - the sections of the brain responsible for speech. The AVM was as big as a golf ball, and had to be treated, as a fear of rupture and bleed were highly likely. My options included either invasive brain surgery - a crainiotomy, to expose the area of the brain, and remove the AVM completely; or a noninvasive, longer-healing option of precise radiation treatment with a tool called a Gamma Knife. I chose option two, and that September, my family and I drove to Charlottesville, VA to obliterate the AVM at University of Virginia's Gamma Knife Center. I spent about a week in Virginia with perfect Fall weather, and underwent two noninvasive treatments: the first, an embolization to reduce the size of the AVM using biological glue. The glue is injected into the AVM via specially designed microcatheters, which are guided directly into the brain via angiography (insertion via femoral artery). The reduction in size assists with the second treatment: on-spot radiation. The Gamma Knife works by using a head frame to accurately pinpoint the target area of radiation. It looks a bit like a colander with over 200 holes for the machine to locate exactly where to shoot the radiation into the brain.

While it is noninvasive, it is not painless. An angiography opens and inserts a catheter into the femoral artery, one of the body's major arteries, that if not properly closed after surgery, can rupture, causing a patient to bleed out. To close it, doctors have to carefully insert a plug that doesn't disturb the walls of the artery further, but also closes the hole intentionally placed there. The patient must be awake during this plug, and depending on the tactic, the patient must lie still for 4 to 8 hours post-op to confirm that that plug didn't rupture or tear the artery during placement. This plug feels like a what I imagine a gun shot wound may feel like if someone stuck their finger inside it and tried to dig out the bullet.  

After the first round of treatment in 2004, I got on medication, and went seizure free for nearly two years. Then, one calm, spring day, I found myself more confused than usual while perusing the fancy cheese section at the local Greenlife (Whole Foods). The seizures had returned. In November of 2007, I went back to UVA for a second round of radiation to eliminate the rest of the AVM. Now, I've got nothing left but serpiginous scar tissue in the area, and my MRIs prove no bleeding or other indicators that the AVM is active. That makes it sound like a volcano - which, sometimes it seems like to me.

The seizures stuck around, and I can't be sure as to why. Maybe the brain can't handle that kind of trauma without always having an aftershock. I am confident that the staff at UVA did all they could to treat me, and there is no way they could have known the epilepsy would follow me. But here we are: I wear a medical bracelet, take medication daily, and have a medical device implanted in my body to help me live with this disorder.

My Life with an Implant:

Although technically my device is implanted in my left pectoral muscle, its not that kind of implant. In 2009, after troubleshooting my seemingly increased epilepsy by tracking my diet, exercise, social habits, stress level, even hormonal balance on birth control, and exhausting my Big Pharma options, my neurologist and I decided to try something new. By maintaining my daily anticonvulsant dosage, and removing additional medications that could be adding to my adverse side effects, I decided to get a Vagus Nerve Stimulator.

This device works much like a pacemaker, sending electrical stimulation through the vagal nerve to the brain in regular intervals to help control the activity that can lead to a seizure. When I feel an aura coming on, I hold a very powerful magnet up to my skin, and the generator either stops the flow of electricity, or doubles the amount to force the brain to sort of reboot. This can help stop the seizure all together, or at least shorten the duration or intensity. For the most part, it works. It also makes me hum in my sleep as the lead presses against my vocal cords and causes a vibration. Falling asleep on an airplane is pretty funny. So far, I've had the battery replaced once, and my insurance at the time didn't deem this to be a required surgery, so they only covered part of it. How special.  

How to Handle a Seizure:

The old put-a-spoon-in-their-mouth trick has been generally dispelled by medical community, but has managed to stick around as an aid. Do not do this. Ever. It is true that some people - like me - bite their tongue, cheeks, or lips. But it is generally best to be sure that a person having a seizure is safe from harm by removing objects around them, even putting something under their head to be sure they don't bang it on the ground or whatever surface they find themselves in. Do not leave them alone. Check for a medical ID or bracelet. Some seizures finish themselves in 30 seconds to a minute, if it goes on longer, or another seems to happen immediately, call 911. Sudden Unexpected Death in Epilepsy (SUDEP) is a real thing. This is not meant to scare you, just to keep you aware. Not all seizures require a trip to the ER in an ambulance, but if you are in any doubt, it is better to be safe than sorry.

Questions?

Feel free to reach out to me with any questions about epilepsy, medications I have tried, Gamma Knife, VNS, or anything else! shelbylthompson@gmail.com. Thanks for reading - knowledge is power.

The Hamlet Complex

In which I have rewritten Shakespeare's To be or not to be monologue after reading The Goldfinch by Donna Tartt followed by The Fortress of Solitude by Jonathan Lethem, which both star a motherless boy coming of age.

1 To read, or not to read - that is not the question:

2 Rather it is shall my eyes bleed over

3 The repetitive selling points of character and indignation,

4 Or have my mind find a better source of entertainment

5 and forget this bildungsroman? To cry, to howl -

6 evermore- and by cry, I mean I see no end

7 to these hapless dreamers, these boys with

8 no mothers to soothe them. I date enough in my

9 paperless life to seek them in inked dreams. To cry, to howl -

10 To howl and wish these away, it is slight;

11 For I survived my own coming of age. And through this rage,

12 what a woman I have become,

13 Humbled by my misuse of mania. I still hold on

14 to the right that I deserve more than this.

15 To be a woman who can meet a man who can bear me,

16 Should I choose to bear another man of our own,

17 Who in time may grow into his own right to oppress me,

18 And hate himself for doing so? The duality of existence,

19 Of existential crisis, of the right to be on his own,

20 But still need me; and wonder if I am worthy

21 of bringing him into this world? None other than this mother,

22 Who could find the strength to

23 Look for life in a place of unforeseen death.

24 The landscape of my womb carved from stone,

25 Where a seed may look to find purchase

26 to again remind me of past implantations.

27 Am I always to remember you lost?

28 Reframed in my mind like a child left behind,

29 But resolute in my need to move on,

30 To flip the page and read on,

31 To lose sight of scorn; myself reborn,

32 Knowing that I could have never brought this life

33 To life without all the countermoves I bore. I sigh,

34 And seek solitude from mankind, long overdue,
35 I close my eyes, and find the words: To be continued.

Hangnail

Its not regressing, it’s oppressing.

I’m no longer messing

Around with the sound of my voice in my ear.

Have I really forgotten everything I’ve learned?

All that I’ve yearned

To explore, deplore, find the corner where it tore

Find a way to piece it back?

It’s not for a lack of trying.

I’ve been on this journey before,

Understanding triggers-

Handling them gently, like daggers.

The grip is tight, and it matters,

For even as I fight, the plunge runs deep.

And there I am, lost in my keep,

Tied up, worn out, full of heart-doubt.

A sigh of sorts escapes me, a small plea

To return to the world, known.

In my struggle to understand the joy in demand,

I push aside the rage

And pay homage to shame.

I am so glad you came.

Forget blame,

I’m the only one here in what appears

To be the small pocket of my heart

That refuses to eject rejection.

Thoughts on Racism in the Wake of a Hate Crime

I am at a loss as how to comprehend the shooting on Wednesday at the Emmanuel AME church in Charleston, SC. Three black men and six black women are dead because a young, white man decided to target this race based on his understanding and hatred that black people “rape our women. And [are] taking over our country.”

Racism is not an inherent trait, but a learned one, as is White Supremacy. White Privilege, however, is something we, as white people, choose to understand as our basic right. It is not. As a white women, I clearly fall into a side of the spectrum of White Privilege. Because I am white, there are things I am able to receive and achieve easily. Because I am a woman, some of those things I must fight for, and work for, but they are still available to me more easily because I am white. This is not a point of pride, it is a fact.

I work hard to educate myself, to break down barriers in places that do not allow women to progress, and to gain respect for myself and others like me. What is clear to me now is that I must add to this list is a sense of deeper pride in making not only a difference for women in general, but also in trying to help shape the future of this country and its stance against racism.

It's sad to say, but in my 33 years, I've been given plenty of opportunities to become a racist. But I have chosen not to let those events shape my beliefs in equality for all, in my belief in One Love, or in my belief in voting for and electing a black president in my lifetime. I grew up in Chattanooga, TN; a city riff with cultural racism dating back to the displacement and massacre of Native Americans on the Trail of Tears, to our involvement in the Civil War. Yet, Chattanooga has seen enough political change to make that history dissipate by carefully holding onto the truth of it. Unlike other Southern cities, ours does not hide the truth, and understands that being a part of shameful past events does not define us for life.

Had I been raised by a different family in the same city, I might have learned a different kind of history lesson about those events. Luckily for me, most of my family is liberal, open-minded, and interested in equality. Sure, there are outliers who are not as involved in shaping the future into a less hateful place, but they themselves are not hateful people. They are indifferent to the actual struggle that is happening today because it does not affect them directly. It's hard to argue with people you love about things that seem so simple and true to you but do not to them. I still love them despite their decisions to stand aside and let the world happen. Even the ones that choose to believe Fox News. I still love them too.

Because of my family, and the people I surrounded myself with growing up, I was able to get a clear understanding of love. With this understanding, I could apply love to those around me who were different from me. There were underlying messages to this love, of course, because no Southerner can outlive the shame of our past entirely. Some of those in the south still instill bigotry, so I won't pretend that I wasn't also shown racism growing up.

Leaving Chattanooga to attend college in Asheville, NC, further opened my mind and heart to others who were different from me. I found my Tribe with people who come from all over the world, and the color of their skin never mattered. Yet, Asheville is a special place, and the whole town believes in One Love, so of course it was not hard to find a Tribe there. The bubble that exists in Asheville allows for more freedom to be who you are without the threat of violence or criminality, though I know it exists, even there. Hell, I kept my North Carolina license when I moved to Washington D.C. just so I could vote for Barack Obama in that state because I knew my vote would literally count more there.

Living in D.C. was a different story, and I became more aware of my ignorance of what was really happening in America outside of my so-far-pretty-lovely life. My five years there tested the truth about my open-mindedness by forcing me to face my own fears and racial understanding by meeting more people who, for all intent and purpose, were other-worldly to me until that point. By working in a corporation, I further understood that classicism is just as widely rampant in this country as racism, it just shields itself more carefully. A bi-product of White Privilege is forgetting about the struggles of immigrants in this country trying to work hard and make something of themselves until you are face to face with it. Another lesson I learned even more during my most recent months in New York City while trying to help a colleague get a work visa, and watching the immigration system in America fail for him.

New York City is its own beast. Opportunities for racism are on every street corner in this city, and even for someone like me who has an open heart, I have to fight off moments of doubt and fear when faced with circumstances that are new to me, but somehow familiar in my consciousness. Just as the shooter in Charleston said in so many words, we as white people are taught that black men are to be feared. Even though I was never explicitly told this growing up, it was still all around me. The southern white culture ensures that it stays a palpable fear in order to continue to hold back the promise of a better future for black people.

What haunts me the most, and what I work on the hardest not to let envelope me and my unconsciousness, is that it is this fear that continues to allow racism to survive. Part of my story involves something that happens to most women in this country. I was raped. By a black man. When I tell my rape story, I usually leave out his race, because it doesn't matter to me. It doesn't make what he did to me any less real or sad or more horrible. It is just an adjective that further reminds me of his face and brings me to tears. The reason I don't share this detail is because I refuse to allow it to take over my general understanding of other black men. I do not want to ever feel like I must be fearful when in the presence of a black man just because one black man in particular violated me. Because that is racist. Assuming that all black men are rapists of white women is exactly what led the shooter into the church. Allowing anyone to spread that assumption around is racist and a result of White Supremacy ideology.

I fight to forgive my rapist for many reasons because I do not ever want to be a part of a culture that holds on to hate. So I fight to forgive him because if I don't, I can fall victim to that hatred too. I fight to forgive him so that I can move on in my heart. I fight to forgive him because otherwise I cannot forgive myself for being afraid sometimes when I find myself alone with a black man.

This is how we must all work to change what is happening in this country. As Jon Stewart said, "Once again that we have to peer into the abyss of the depraved violence that we do to each other in the nexus of a just gaping racial wound that will not heal yet we pretend doesn't exist." If I, (even if I try not to), and we as Americans, continue to pretend that racism does not exist, and is not taught to us, then we will all walk around afraid of each other. And more innocent people will die at the hands of hatred instead of more people thriving in the hands of love. If equality for all were simple, we would have achieved it by now. I understand it is complicated, but we can at least start with the truth. We can change things if we are willing to do so. The best place to start is to let go of hate and fear, and try to find love and hope instead. For those are the things that have brought me this far in my life, and I can only keep trying to uphold them and look for ways to help others see them too.    

Sorry Not Sorry

Editor's Note: I started not to put this up because it didn't feel finished, but then clever girl Amy Schumer beat me to it, so here it is.  

As if we can't help ourselves, women say, "I'm sorry" so often, it's almost as if we reverted to our early 90's teenage selves when we suddenly started saying, "like" every other word. There isn't always a need to apologize for something we want or don't want, but it has become so engrained, that we do it all the time. Especially when under some kind of social normative pressure to be the cool girl-next-door who's literally down for anything - even DTF when we aren't really ready. I came upon this scenario recently, and although I never actually apologized, I agonized about it for a long time.

I decide not to apologize, you don't ask me too, but I still feel like I should.

I work hard not to say I'm sorry 

that I don't want to fuck you yet. 

I manage to hold it in, pressed tight 

(like my pussy) 

and feel it beat against me. 

I make no excuses; I just say, I'm not ready and leave it at that.

In my younger years I would have said something you might believe 

like, I'm on my period. 

But now I don't care about such things; 

and I've had lovers and boyfriends who don't either, 

so no point in lying now.

The truth is too harsh for such soft pillow talk.

Since I held my own on the apology field -

But still wanting to be affable - now I fight the silence

by working not to say thank you,

For understanding. 

My polite nature is so demanding.

Lust hangs in the air like a malcontent. 

Even when I know its my choice, 

I still feel so weak making it.

My aim to please self screams 

- since I don't put out, will you go black out?

I fight again not to apologize. 

I say "thank you" instead, but this time for a lovely evening,

because you deserve that, and so do I.