Blog Posts

The time has come to apply for disability

My mother used to talk about people who were on disability as though they were liars, fakers, leeches on the system. A real woman works through the pain. A real woman keeps going to work, takes care of the men when they’re sick – my father was “such a baby” when he was sick with anything. She had no patience for anyone whose body wasn’t made of steel. She didn’t mean to invalidate future-me. I internalized these messages though, and I bear a growing resentment against this body. This body makes me feel like I am failing my mother. I feel as though I’m failing at the intrinsic core of womanhood – enduring.  She would be horrified to know that this was my takeaway from those lessons. Those lessons were only meant to impart a strong work-ethic and resilience. Maybe if I were healthy, that would be exactly the message I would’ve come away with. Maybe if my body was a well-oiled machine, I would only believe that it’s my duty to struggle through normal illness, to not rest for more than a day, no matter how sick I was.

I recognize this for what it is. I know that I would never look down on any other person who applied for disability, who is disabled, whether that disability is visible or invisible. I would never invalidate the experiences of another person that way, and I do not live their life. I don’t know what they go through, just as they don’t know me.

I know the shape of my pain. My pain is a chasm, it’s as though you’re standing at a precipice, and it looks like you could leap and you’d make it to the other side. Looks are deceptive. If I jump, I fall. I fall hard. I go in a short burst and then pay for it for weeks. My pelvic floor is a knot that constricts around my organs. I rip myself open from the inside, cause myself to bleed and tear. It’s a trauma after-effect, I know this. And no amount of therapy will make it go away – these muscles live this life now. When I did physical therapy to help to manage this, my resting baseline measured by machine is higher than the most tense an average person can squeeze their muscles. This tension causes deep pain at all times. It’s better if I am in a hot bath, and so I am typically in a hot bath for three hours per day, on average. Some days I abbreviate it to two hours. Some days I’m in a three hour bath twice in a single day. On no day can I sit for more than short periods. If I am not in the tub, I am typically moving around or lying on my stomach, typing on the keyboard in front of me, or working on art projects. I have modalities at home that allow me to change positions regularly to minimize adding tension on my muscles.

I’ve had to leave three jobs because this pain won’t allow me to live a normal life.

If you’re reading this and you know me personally, if we’ve volunteered together, for example, this will surprise you. This is because I can generally time my body’s needs so I can get a good two hour block every day that I’m surprisingly functional. I teach religious school Sunday mornings, and I get about three hours of teaching in. I do this by making sure I don’t actually have a bowel movement until I get home. The moment I have a bowel movement in any given day, my day is over. I need to bathe immediately afterwards to release the muscle pain, and because my surgical site from the operation I had to slice my pelvic floor muscle open to try to release the pain keeps getting infected, months later. I have a brand new fissure now, in a different location, so two areas now are prone to infection, bleeding and pain.

I don’t want to expose these intimate secrets to random strangers. I’m starting with writing this because it’s important for me to articulate them, to practice, because soon I’ll be involving a lawyer to help ensure I get disability for this condition. It’s the right thing to do for my family. I would be making a good salary – I’m educated, articulate, and everywhere I’ve ever worked, I’m loved and valued. But I am not reliable. I can’t work even 20 hours a week reliably. I can freelance from home, write and edit. The vast majority of my writing and editing is done from my bathtub. This is how I present as functional to the world.

This is how I present as functional to myself. I tell myself that my muscles could stop freaking out at some point, and I could return to working full time. I am not yet 40 years old. But disability allows for that. It’s not saying that things will always be this way. It’s saying that now, this is how they are, and likely to be this way for years to come. But if you recover the ability to work, there’s a plan for that.

I’m an excellent mother. My daughters are loved unconditionally. I’ve worked on reports with them, from my bathtub. We talk about their lives and their concerns… from my bathtub.  I spend the two functional hours I have per day going to their concerts, working on committees at school, not missing performances. Making sure they know that I am there for them. I believe both of them would tell me that I’m doing a great job, and they’re kind and compassionate.

I need my daughters to internalize this message. A real woman rests when it is time to rest, and dances when it is time to dance. A real woman takes the time for self-care. If that self-care includes filing for disability, then that’s what it includes. I need to model for them that it isn’t weakness to ask for help, nor is it weakness to take care of yourself, and for me, that’s going to include filing for disability.

That’s strength. Not weakness.

Power Words

I want words to be enough.

There’s a Doctor Who episode where the thoughts of every person on the planet turn towards a single word, revitalizing the hero, making him whole and strong again after everything has been stripped out of him. Every person on the planet thinking the same thing at the same time, amplified by technology, helps the Doctor to defeat the Master. He doesn’t defeat him by killing him – he embraces him, he forgives him. Someone else, of course, kills him – someone who’s been traumatized, perhaps more than anyone would ever know. But the act of the Doctor is to love and forgive and to use the power of the word, amplified, to restore the world.

I want there to be words like that. I want that science fiction to become fact. I want every person to raise their voices up against racism, bigotry, xenophobia, hatred. I want every person to take a stand and say no. No. This is not us. We are not this. We must not be. I especially want anyone who felt that Trump really was in line with their world view to take a good, hard look at themselves. Take a good, hard look at their prejudices. Try to align this with what the world could be, if only we all spoke out whenever we see injustice.

Sometimes we don’t. I asked my religious school children, 22 of them, to put their heads down and close their eyes to be anonymous. I asked them for a show of hands – how many have been a victim of bullying?  12. How many have known someone who has been bullied?  16.  How many have gone along with something their friends did that made them uncomfortable, even though they didn’t want to?  18.

We’re better than this, you guys. They’re better too – getting the students to see where they have aligned themselves with something that doesn’t represent their hearts, their souls, will help them to take a stand next time. Talking to them about bystanders and their harmful role in perpetuating racism/sexism/classism/etc – that helps the next generation learn to change the world.

What is it going to take for all of us to see the same thing?

When someone makes a racist or sexist joke, who should speak out against it? It should be  those who are in a position where they have more social capital in the room.  It doesn’t have to be a big deal even. Just “Hey man. That’s not okay. Racism isn’t funny.” That’s all it takes. If a woman says, “Hey that’s not appropriate,” to a rape joke, many guys will roll their eyes and call her a bitch when she walks away.  If a man says it, the guys will stop. They’ll look at each other, and actually stop their actions. They’ll think twice about making that joke again. The person who is in the more vulnerable position should not have to be the person telling the aggressors to knock it off.  

When you see someone being harmed, you need to open your mouths. You need to ally yourself with those who are harmed. You need to welcome the stranger. You need to focus yourself on being what we CAN be, not what this election has shown us we ARE. We’re looking in a mirror right now, and friends, it isn’t good. We don’t look good. We look small. We look petty. We look afraid of change, afraid of progress, afraid of the stranger. We look like enemies of one another, especially those who don’t look like we do.

That is the Master. We need to defeat the Master through the power of our words and our actions. We need to put ourselves in the line of fire and stand up for the more vulnerable. Everyone has a place on the scale of privilege. This lesson plan can help older students/adults to understand this. Anyone who has a position behind you is someone you should stand up for. This is how we move forward as a society. This is how each and every one of us can recognize what our responsibility is. If you start standing up for people, you’re going to find other people will follow your lead. We can walk together forward. If we don’t walk forward by bringing those who are behind us up to where we all have equal footing, we’re never going to make progress. We need to make progress. We deserve progress.

If you hate that we’ve gotten here and you hate that men like Steve Bannon are being given a voice of authority in our country, say something. Take the step of standing up for others. Listen when people who are afraid of this country are talking. Take them seriously. Help. Engage.

Start with things you see, and calling your representative, your senators, the heads of the house and senate – this is how we speak up on a larger scale. Here’s a spreadsheet that will be updated weekly with scripts, if you’re scared, or don’t know what to say. I myself am anxious of calling, and I’ve done it, and it gets easier every time.  Remember that the more people who call, the more people who engage, the more it works. Ask your friends and family to do the same.

Power words begin with “I hear you.”  “I see you.”  “I am here.”

When you’re here for others, when you’re listening and seeing, and you translate that into action – that’s when the power words start manifesting change. We can all do this. There’s really no other way.

 

 

Politics and Poetry

I posted this on Medium just a few minutes ago, entitled, “Dear America – Don’t Vote Fear.”

It’s no secret that I am voting for Hillary Rodham Clinton. I believe she’ll be the best candidate for president, I stand by her, I’ve even volunteered at her field office here in Fairfax.

From the perspective of a sexual abuse survivor who has had to unlearn a lifetime of fear-based decision making, I think it’s important to take a step back and examine the motivations each candidate is using in their bid for president. To me, the Republican candidate’s rhetoric is based on fear – like a preacher in a pulpit preaching hellfire and brimstone. I don’t find that compelling – I don’t like people playing on my fears, and the whole election has been rather traumatizing from that perspective. I’ve been hunkering down, so to speak, and burying myself in writing and not submitting to journals at the moment. But I feel it’s my duty to state my opinion. And I know a few people who are voting for the Republican candidate because they feel Hillary is worse.

These people are, of course, heterosexual, white, and have never been in a position where they didn’t have the most power of a group.

I think, as a poet, it’s my duty to engage with these people. It’s not my duty to stop loving people based on politics, and so I will not, but I have an obligation to tell them why I think they should reconsider.

And that’s all I’ve got to say on politics for now. Please read my link on Medium, above, and give it a heart if you feel so inclined.

 

View story at Medium.com

Pirkei Avot 2:21 & pain management

 

I work consciously to maintain a positive outlook. When I am optimistic, my pain drops ten to twenty percent. It helps me to pay special attention to where the pain lies, visualize my muscles opening up. I imagine the way a bird’s feathers separate one by one as she stretches her wings one at a time before giving a fluffy shake, but I do not shake. I don’t move fast at all. When I get out of bed, I will lurch for the first hour of the day, moving as though I have rusted during the night’s sleep.

I don’t take pain medicine unless I have no options. They all have their drawbacks. Ibuprofen has caused holes in my stomach from years of use. Acetaminophen works about as well for me as taking nothing at all. Low dose SSRI medications taken even once cause psychosis that lasts weeks. Opioids are constipating and I can’t tolerate that with pelvic floor dysfunction. Cyclobenzaprine is too relaxing and makes my bladder stop working. Diazepam takes away much of the pain, but it makes me not care about the world.

I am not free to refrain from helping the world, even if it can never be finished. When I can’t see the world, I do not know what needs healing, or where my voice can help. No one person can finish all the work that needs doing, but I know I have to be a part of it. I know I have to help, even if it’s just one person at a time.

It’s hard to maintain a positive outlook when your body is constantly on fire.

When I see other people’s adventure photos, I can’t help but feel a moment of mourning. Hiking, exploring the world, seeing the colors, the breadth of it all. I want that. I want to smell the air in places far from home. I try to process that mourning into gratitude. While others are seeing the beauty that lies in places I can’t go, I am forced to admire the beauty in the minutiae. The fine hairs on yarn that has been hand-spun. The way water beads on a leaf. The sound of my own breath – how like the ocean it is in a quiet room. The way the room is never empty – the way I fill it simply by existing.

I text a friend who has been lonely. I read and respond to another writer’s work, telling them I see them and they are appreciated. I help other people with chronic pain by talking to them, supporting them, letting them know I see them and they are loved. I tell people I love them every day. I teach my daughters all manner of things – compassion, leadership, how to bake, how to welcome the stranger. I imbue them with all the strength I have.

I am so very, very strong. I’ve had to become so. I remind myself of this, and I feel the gratitude I need to chase the mourning away. I know it will come back. It’s okay.

I am living the best life that I can live. I keep my positive outlook.

Most days, it even feels real.

The Opposite of Rape Culture is Nurturance Culture

This was an incredibly powerful read. It’s long, but well worth your time.

Dating Tips for the Feminist Man

The opposite of masculine rape culture is masculine nurturance culture: men* increasing their capacity to nurture, and becoming whole.

The Ghomeshi trial is back in the news, and it brings violent sexual assault back into people’s minds and daily conversations. Of course violence is wrong, even when the court system for handling it is a disaster. That part seems evident. Triggering, but evident.

But there is a bigger picture here. I am struggling to see the full shape emerging in the pencil rubbing, when only parts are visible at a time.

A meme going around says ‘Rape is about violence, not sex. If someone were to hit you with a spade, you wouldn’t call it gardening.’ And this is true. But it is just the surface of the truth. The depths say something more, something about violence.

Violence is nurturance turned backwards.

These things are connected, they must be connected. Violence and nurturance are two sides of the same coin. I…

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New Work – Thirteen Myna Birds

Hello everyone!

I have two new works out in Thirteen Myna Birds. Provocative, dark, tactile and deeply textured, this journal immerses itself into waters that I have only begun to dip my toes into. For years, I avoided the truly dark in my work. I’m not certain why – perhaps when I was more in recovery, these works felt too confessional, too personal, they explored too deeply to where things were raw and hurting, exposed. As I gain confidence in myself and as a writer, I’ve begun exploring darker topics with increasing frequency.

Midnight in the Garden, currently #1 at Thirteen Myna Birds, deals with dick pics and the fate of those who prize them so.

do you wonder, currently at #2, is the inaugural poem of my series of serial killer poems. In it, Eddie is speaking to himself, trying to figure out what makes him unique in the world of serial killers.

I’d welcome your feedback on these poems. As I’ve said – the darker things are just emerging. Is their emergence a welcome diversion? Let me know your thoughts.

 

Rape culture and the fate of Brock Turner

“I don’t claim this to be fact but I see a pattern emerging in rape culture that suggests that women have a past, while men have a potential. When women are violated, we’re asked ‘what did you do to deserve this?’ and often our past is looked at for clues. When men violate women, they’re asked ‘what do you have to lose?’ and their future is looked at for clues.” – Facebook, Louisa Curry.

When I was nine, I had a pack of Brock Turners. Sometimes there were three of them, sometimes they invited friends. When we moved two years later, I was free. One of them looked astonishingly like Brock Turner – so much so that in my brain, their faces are melding. This has the effect of me seeing the face of my own abuser everywhere. I cannot look at the news without seeing those eyes staring at me, asking me just how I’m enjoying my life now.

PTSD is an incredibly difficult illness. This is known. I have, by and large, conquered the beast. I can get up every morning, move about the world relatively unfettered by flashbacks or feelings of revulsion, make an impact – until something like this happens. I know the woman who wrote the amazing, courageous letter that Buzzfeed published, will have a similar experience. Something will flash remind her of what she wants never to be reminded of. Like me, she may smell pine needles and dirt and need to bite down on something so that she doesn’t cry. She may hear whispers in the night that tell her that the word Love is synonymous with Captivity. Her stomach will flip inwards every time she hears of another woman hurt, another body violated.

Nine years old cannot consent. Unconscious cannot consent. Neither have a past that has anything to do with their rapes. Nobody has a past that has anything to do with their rapes. Rapists are the sole cause of rape.

These things seem to be simple facts. I’m not sure where the confusion lies.

The problem with people like Brock Turner is that they feel they are entitled to whatever they want. These are the men and boys who cannot conceive that a woman wouldn’t be interested in their dicks. These are the men who catcall women, and then say “fucking bitch” when the women tell them to get away. They post rape threats on social media platforms, behind screens where they feel safe and all-powerful. They cannot handle rejection. They believe Woman is the right of Man and Man needs to claim Woman, so that all is right with the world. They believe Woman is a thing that can be claimed. They believe that scoring happens on the field and wherever they appear.

As children, they aren’t taught empathy and they aren’t taught about consent. They don’t understand that what they are doing, forcing their fingers into someone against their will, imposing their body upon another’s, an insidious marking that leaves a stain on the heart of their victim no matter how many times she tries to wash herself clean, is an act of violence. And beyond that, it’s an act of war. It’s war against the right of self. When they are caught, they claim she wanted it. When they are caught, they claim she never protested. They don’t understand that we, as women, have to fear more than just this sex. We are afraid for our lives.

When you are pinned beneath a man you do not want to be having sex with, part of your brain shuts itself off. It does this to make way for the part of your brain that is concerned with your survival. You think to yourself, if I hold still, will I live through this? You think to yourself, if I close my eyes, will it be over soon? You think to yourself, will I see my mom ever again? Or you think to yourself, will they make good on their threats to kill my baby siblings? If I am a very good girl, if I hold very still, if I do what is asked, can I keep them alive?

You do not think to yourself, “Get off me you fucker.”  You do not think to yourself, “I have a right to have you not do this.”

No. That comes later.

A rapist’s potential should never be taken into concern when sentencing. The judge, Judge Aaron Persky, decided that the rapist would never commit rape again. The rapist just had too much potential for this one incident to ruin his life. He sentenced the rapist to six months, of which three will likely be served.

Ironically, had he sentenced the rapist to six years in jail, the news would likely not have blown up and the rapist would’ve lived his life in relative anonymity once his jail term was over. Instead, justice was not served by the courts. In the court of the media, justice came to find Brock Turner. The only way he can salvage his humanity now is to dedicate his life to educating men not to rape. He can go to schools and talk about how he raped a woman, how consent is so important. He can stop blaming it on binge drinking culture, and instead say he is a rapist, and he is sorry. He can help raise funds for victim services. He can atone by preventing rapes through using his voice for good – but to do that, he’s got to stop being an apologist. He can call out his father for his horrible excuses. It will take a lifetime.

But that judge has to go.

There are so many petitions for this judge to be removed. His colleagues say that his judgements have been fair and balanced.  I’d like to see some statistics. How many rape cases has he tried? What was the sentence in each case? What factors impacted the sentence? In every case. I want the judge tried – I want him to explain how he feels six months is an adequate time. Because Brock has ruined his life, and Judge Persky has contributed to that ruination. Judge Persky, through deciding that a rapist’s potential swimming career is more valuable than a woman’s bodily autonomy, has sent a message to the women who are being victimized now. That message is simple: the judge doesn’t care about you. If your rapist is an “upstanding man” – you will be blamed for your rape. If you wore a dress – you will be blamed for your rape. If you drank alcohol – you will be blamed for your rape. If your rapist can’t enjoy a good steak anymore – you will be blamed for your rape.

The message needs to get out to the legal community that if you sentence a rapist to a slap on the wrist, you will be removed from the bench. Your career will be over. If you sentence a rapist to a slap on the wrist, and an old man to ten years for growing his own pot, your career will be over. If you impose harsher sentences on property-related crimes than war crimes against the female body, your career will be over. His fellow judges need to stand up and say no. You do not represent us. You do not speak for us. In this way, the legal community can help end violence against women and girls.

Mothers and fathers need to show their sons this case, the twelve page letter written by the victim, the petitions against the judge, and the mob that will never let the rapist have a life again, and say, “This is what happens when you engage in rape. Do not rape. Consent is the most important thing. Respect other people’s bodies and their right to decide what happens to them.” Show them the words of Brock’s father. Tell them just how unimportant Brock is in this equation – he made a horrible decision, and he will now live with this decision, as will his victim. Tell them Brock’s father is wrong. Tell them you will always love them, and they must never do this. You will not be an apologist for rapists, even if that rapist was your own son. Teach your boys that enthusiastic consent is what matters, that sex isn’t a dirty thing to be hidden away and never to be engaged in. Teach them realistically that they’re going to want to have sex and that’s okay. Teach them that masturbation isn’t a sin. Teach them that sex should be experience shared with enthusiasm by both partners. Teach them to never have sex, especially with a person who isn’t their established, long time partner, when they’re drunk. In this way, perhaps the most important way, mothers and fathers can help end violence against women and girls.

And to Brock’s victim: thank you for your letter. Thank you for speaking up. I pray that the love that surrounds you helps you heal. I pray that your sister can forgive herself, as the blame falls squarely on your rapist and is not hers.

And to my Brocks: I worked for over twenty five years to forgive you, not for your benefit, but for my own.

It’s still a work in progress.

An Interview with Sundress Author, Jill Khoury

An interview with the editor of Rogue Agent Journal about her new book, Suites for the Modern Dancer. Jill is not only one of my closest friends, she’s one of my inspirations in my own writing.

The Sundress Blog

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Jill Khoury is the author of Suites for the Modern Dancer, which was released this month from Sundress Publications.

Sundress: What is it about the body and disability that inspires your poetry?

Jill Khoury: From a young age my body was an object of the normalization efforts of others. At the same time, it was made clear that the body was a private thing. So I was told to be like the other kids, and be quiet while I was at it, and I internalized that message for a long time. So I do it because I was told not to. Nor are notions of normalization and privacy something that our society has moved beyond, so I guess I also write about these things because I want other people to tell their stories of difference and tell it loud.

Sundress: Did you ever read a work about either that really…

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The victimization of Bill Cosby – or a question of choice after all

I had totally missed when this was posted on Thank You For Swallowing. I’m so glad I went through to read – if you’re not already following this site, I highly recommend you do!

THANK YOU FOR SWALLOWING

His wife wants to know who the real victim is.
The answer is obvious – he’s the victim.

Yes, now we can believe because
he has spoken, admitted he procured

prescription Quaaludes so women
would find themselves fucked. He’s just

the latest victim of oppressive feminism.
We women have created rape culture.

We trap the men with our cunts.
They are simple, and they need a place

to rest their needful dicks, a hot mouth,
a sleeping hand, a listless vessel to bend and fuck.

More than 50 women accused him,
but who would believe – they can’t really have been

raped by such an all-American dad. His wife wants
to know who the real victim is.

Why – is it a crime if they are asleep? If a vessel, they
cannot feel pain. If a buoy, they are designed to float.

It’s a woman’s choice after all to be seen…

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