Trauma & the Suicide Disease

(this whole article should have a trigger warning for sexual assault topics)

t one asks you what it’s like, but being diagnosed with a rare disease, especially one with painful neurological symptoms, is a trauma all unto itself. The suicide disease, also as trigeminal neuralgia, has impacted my life tremendously in just eight months since my first full-fledged attack.

But before I talk about that, because of who I am, and where I came from, I want to talk a bit about the nature of trauma itself.

As a survivor of trauma — sexual abuse, physical abuse, and rape — I often believed I’d lived through everything horrible. This gave me ways to move forward, and on a daily basis, put on a (sometimes fake) face of courage to prove that I’ve toughened up, and will continue to move forward.

Trauma is commonplace in my world. I live in a city with a lot of street violence and sexual violence, where many people (especially women, so very many women) are born into poverty and killed by it later on. I know a lot of hurt people, a lot of crime victims, a lot of sexual assault survivors, people I’ve met through therapy or support groups or even just out seeing music and being social. With some I discuss my trauma and explain my strange hyper-vigilance (PTSD of course) with a casual awareness that makes it seem more like I broke a toe, or lost my job. They nod; they understand it, too.

I reserve my sorrow for private conversations, for the most part, or moments alone. But the truth is, I lost my whole world and identity at the hands of sexual violence at a very early age. I spent many years lost, and many more years mourning. (Yes, sex abuse is violence. And no, I never really sleep when way from home and I will jump six inches in the air if you touch me in any way, in any place, from behind, ever. Announce yourself, please.)

When I’ve sensed similar pain in a neighbor or a childhood friend or a perfect stranger, I’ve shared it all — or at least, as much as my audience needed to know; it happens to many of us — yes, it happened to me, too — and yes, you can have your life back, and no, you will never be the person you were before again. But you can thrive. Or at least survive. You can at least wake up and strive every morning. And in that striving, you may find peace. Maybe. Just don’t quit, is my message. And it’s always sincere. I’m stubborn like that.

I’ve been moving like a turtle past the pain and the triggers and the relationship dysfunction and the flashbacks for many, many years. I’ve learned the rhythm of the moving forward walk and stayed in step like a soldier.

It’s become a part of my identity that I’ve always convinced was moving along, forging a new path. It was supposed to be replaced, with a newer, stronger, survivor-me that would accomplish some amazing shit.

But somewhere in the back of my mind, I’ve always thought it was bullshit in a way. There is no newer me, or better me, I will always be me, the 17-year-old girl who got drunk with some strangers and woke up vomiting in the dark with thick, sharp hands holding her down, not even letting her move to vomit farther away. The one who found the burn marks on her arms the next morning. The one whose daddy molested her. The one who got beat up by her older boyfriend in high school and later almost laid her life down to another guy who wanted to kill her. The one who valued herself less than almost every other person, for a very long time.

You can’t erase that version of yourself, not ever. Your past does not have to define who you become, but it does not easily forgive you, either. It follows you when you tell it to get lost.

That’s part of who I am for the rest of my days. But I am a whole person. A real person. I can look in the mirror and see the woman who lived through those things. I don’t hate her. I forgive her for a lot of things. I do not stutter when I talk, but I don’t talk very often, and especially not online, especially not anymore.

But here I am, today. A better version of me, maybe?

Online Violence and Trauma

I had hoped to become a great, vocal activist for other trauma survivors when the online shit hit the fan. In 2012 I learned about the online world and how there is no place for women here. I was quickly sent reeling by events I was too naive to ever predict or avoid. It started because of an online dispute about abortion. But it still hasn’t ended, not even today, not after four years, really, although I avoid looking my name up on the internet nowadays.

I got the threats that so many more-famous-than-me feminists have received, the insults, the rape threats and the rape ”jokes”. Swatting threats. I got hammered. Emails from strangers asking me where I got the nerve for this or that. Doxes with a photo of the women’s shelter I’d called home for a few months. The “What did you do?” from others, who couldn’t understand that the internet had transformed into a vastly expanding universe that sought to only harbor white male rage — and beat women and our goddamn opinions! off the internet as messily as possible.

To make a long story short, I ended up shutting down, keeping my opinions off the internet, being less of a writer and more of a nobody, spending more time in the real world. The terrorists won, but it seems they do a lot, these days. Did they really win, if my life was spared by them, or if I spared myself? I don’t know. But I can say: There was more color in my skin, less anxiety and shakiness in my veins. I was finally doing “fine” —I quit smoking after 19 years. I stopped feeling like I was going to be followed places or hunted down by a bunch of 4chan-type sociopaths. And that was something, anyway.

I’d started to strive again, spending much more time with my boyfriend, enjoying more time going out, seeing more friends in person, no longer glued to a screen, eating better, learning to cook more things, looking forward to the days ahead.

Trigeminal Neuralgia, aka the Suicide Disease

In December 2015, my life changed forever. Again.

A relentless pain on the right side of my jaw sent me to the dentist. It was searing, and felt deep, like it went all the way to my jaw. It was a dental infection, the dentist told me a few days later. Or maybe a tooth bruise. The x-rays were fine and he seemed baffled. He prescribed me an antibiotic and some pain pills. The pain didn’t budge.

A few days later, the whole right side of my face was pulsing. It felt like a hot knife being jabbed into my right eye all the way to my jaw. About every 60 seconds. For hours on end. There are no words for what this pain felt like; and it got worse when I talked, drank water, laid down or cried. A flash of lightning attacking my mouth, my eye, my cheek.

I spent nights up pacing, sloshing water around in my mouth to avoid crying out in pain. It made no sense but it helped; the pain would move with the water in my mouth. I could stand it a little better if it moved from place to place.

After four sleepless nights and days, exhausted, I went to the ER. A bad sinus infection, the nurse practitioner said, prescribing me a stronger antibiotic that almost killed me; I was allergic. She also prescribed me a very strong opiate. (It didn’t make a dent in the pain but my mood improved a bit.)

The Prednisone from the second ER visit for the allergic reaction seemed to bring the inflammation down. I was still getting stabbed, but the phantom trying to kill me seemed to be getting weaker. I went back to the dentist, who thought it was a jaw disorder called TMJ. They made me a mouth guard to prevent me from grinding my teeth, and the pain made me throw it across the room in the middle of the night. It came back, full throttle.

I became convinced that there was a tumor in my face, ready to explode, but the ear, nose and throat doctor laughed at me, shaking his head. (Crazy lady, he seemed to be saying. Fake pain.)

I went to my primary care physician, who really had no clue. I bounced from specialist to specialist, and finally got some relief from an antidepressant also used for pain. (It didn’t last forever, but subsequent prescriptions have provided some relief, but there is always “breakthrough” pain.)

This stabbing ice pick that attacks my right eye, cheek, nostril, teeth and jaw relentlessly is the result of a neurological disorder. I have a neurologist now, who explained that the MRI shows how a vein curled like a snake around my right trigeminal nerve, which controls all sensations on the right side of the face.

The first series of attacks began on December 28th, 2015. The last attack I had was literally about a minute before this sentence.

It doesn’t matter how many other traumas you might have had; disease can’t read your palm or scan your memory for all those moments in life where you cried out enough is enough. Disease has no “enough”, no breaking point, no point where it gives up because it’s worked too hard or you’ve cried too much or you’re too exhausted to cope. It doesn’t have to take a rest to catch its breath or regain it’s strength. And even if you’ve tried to kill yourself in the past, when you felt your very existence was a disease and sickness all on its own, the disease that wants you to die or give up knows no boundaries.

If you’ve lived through trauma, you’ll find that neurological disease, especially what I have, trigeminal neuralgia, has it own set of painful triggers, and they suck just as bad or worse.

These triggers are nothing like the triggers left by the scars of rape or abuse, but they are just as frightening. Now it’s wind on hot summer days. Shower water on your cheek. A quick kiss or a too-cold glass of water. Hot, windy summer days. Totally pleasant, beautiful moments ruined because of a terrible, confusing and painful disease that kicks in when you’re trying to just be.

Pain becomes an invisible wall between yourself and your real life, your old life, the one with all of your friends laughing at a dinner table and late nights going dancing or otherwise carousing and having good times.

You can’t do these things because the pain hitches a ride with you and it speaks up at the most inopportune times. It stands between you and everything that is real, that is experienced, that deserves to be experienced.

You fear getting an attack in public spaces, or without your meds, or worse than your meds can control. If the music is too loud and the air starts to vibrate, you have to get up and leave. If the wind is too hot or a drink is too cold, brace yourself, buck up, try not to cry in public — besides, crying hurts too. You can feel the cheek twitching as it begins to flare up and then the pain comes and goes faster than a hiccup. But it takes minutes to recover. And it might come back again.

This disease can’t be blamed on being too drunk or wearing inviting clothes or choosing a bad boyfriend. It wasn’t the effects of any drugs I used to dull the pain or any other decisions I have consciously or unconsciously made.

In other words, for the first time in my life, I am experiencing a trauma where no one blames me.

But it’s surprising to find that doesn’t make having the disease any better.

It’s completely out of the blue, just something that happens that’s not your fault , which is actually the reason almost everything traumatic happens, anyway.

Trauma and disease bring out the fighter in us, our strongest traits of resilience. They also bring out anger for some (yeah, me, too) alongside a bit more patience and empathy. I can’t imagine what else is out there that I could go through in life, but I sure as hell respect all of you who are going through any of it right now, anyway, anything that is painful or terrifying that you think you can’t get through. You can. I know it.

What I have learned about trauma and this disease, is that we, as humans, are stronger than we may ever know.

We are resilient, powerful, and brave.

This is not to say that our capacity for pain is limitless; the fact that trigeminal neuralgia is also known as the suicide disease is indicative of the limits this disease pushed past in many people. For a disease that doesn’t kill you, trigeminal neuralgia has left a lot of casualties in its wake.

But there are many, many treatments available before I lose hope. And that is true when it comes down to many diseases, as well as damage caused by trauma. There is never a lack of hope in the medical world, or the psychiatric world, and, as my young doctor told me with glittering eyes (I’m his first with this disease, it’s so rare) there’s always brain surgery when the treatments run out.

And that leaves something to strive to be strong for, in the future, no doubt.

But I’ll just take my pain-free moments for today.