Life with PTSD
There are an incorrect number of arms, tips of knees, bobbing of feet, all wet, all red, blood-colored with fluid and a dim light moving slowly and steadily in my brain. The sounds of distant quiet crying and groans flood my mind. It’s all so fucking wet and sticky. I try to push my way out, but it all keeps going, it wells up the harder I fight. I am not there. I am in bed, alone. It’s not a dream though, every time I try to drift to sleep this cross between soup and sex and death fills up my mind, like it’s being pumped in from from some lower hell. My heart pounds and I shake, and muscles around my throat close in to choke me. Pushing it away doesn’t work. I float above it, neither paying undue attention to it, nor stuffing it away. I let it run its course. And I wonder, for the millionth time, why do we even have muscles that can choke us? What’s the point of that?
As stupid as this sounds, I think of Dune almost every single time.
“Fear is the little death… I will face my fear. I will permit it to pass over me and through me.. Where the fear has gone there will be nothing. Only I will remain.”
Fuck it, it works.
I first lived with PTSD before I had it. The mental illness runs in my family. My Vietnam vet father had PTSD, never formally diagnosed. He could mostly maintain a face during the day. He was loving and funny, smart and confident of his opinions. I could see it fray around the edges sometimes, but that was all. Also, his life was in shambles, but as a little kid, I didn’t understand that. Nights were different — with no ability to put up a shield, the disease ripped lose. I would wake to him screaming in fear and pain, all in his sleep. Not every night, but enough of them.
You will probably be unsurprised to learn that studies have shown that children living with parental PTSD are more likely to develop the disease themselves. Not all, but certainly more than the norm. Of course, repeated exposure to traumatic events ups the odds. A range of traumatic events, not of a single type, also puts up the odds. Put those together and you get me.
I have a good friend who is a doctor. He’s not my doctor, but we talk about medical stuff, so he knows what I have. I was talking about sleeping disorders (not mine) with him one day and he mentioned meditation. I quickly said, “I can’t do that.” He laughed, (not unkindly) and said “Oh yeah, you have a dissociative disorder.” I shrugged, and smiled. It’s true — for my condition meditation is medically contraindicated. Life with PTSD is weird. It’s topsy turvy, and what helps others often hurts us. It’s not what people think, and it’s often not what people think of. It took years, and several diagnoses, to land on PTSD. My psychiatrist and I agreed that it was obvious in retrospect, but retrospect took decades to find.
I continue to get more. I’ve gotten some of my PTSD on the job. Sometimes when I close my eyes and relax too much, the police horses in their riot shields are bearing down on me in the wet and gray DC winter of 2012. They are terrifying. They can walk into any room, no matter how small or how far it is from DC.
It’s not the horses, per se. Their moment is like a talisman linked to all the violence and broken dreams and beaten bodies I’d seen — all the shrines and libraries I’d seen destroyed, turned into foul-smelling mud — over the last months. And before that, earlier in the fateful year of 2011, the constant fear and fighting and chaos that shredded my life while being investigated by a federal prosecutor. I did great work that year, and I did my best, but all of it gelled into the moment the horses bore down on me. I can remember that I felt very little when it happened. I took pictures, recorded sounds, I had a little notebook in my thick jacket’s pocket to jot things down. That eviction took over 12 hours, every one of them terrible, every one of them wearing me down. I wish I could make them go away, that I could go back into therapy and take away their power. But I’m a freelancer, and like most people with PTSD, I don’t have the time or money. And anyway the idea of filing a workman’s comp claim for PTSD as a journalist sounds like a way of getting laughed out of journalism, so for now, I just wait them out.
“Intrusive imagery” is the disease’s best tell. The horses come in the room, and everything shakes inside me. It’s funny that I respond that way to the intrusion because I know I am calm when it happens. Was calm when it happened. I’m not sure. This is a disease of tenses, of simultaneity. This disease doesn’t make any sense.
I do know the answer to this one. I was calm when it happened because my body’s response to danger made sense then. It doesn’t now, when I’m in an Ikea swivel chair, fretting over an adjective. I worry that I keep going back out there, on riot lines and near fires and screaming and playing witness to pain and violence, because it’s the only place my body and mind make sense. It’s the only place they feel useful.
We think of PTSD as something soldiers get, but it’s not that simple. It’s likely one of the causes of more PTSD in America than war is life-saving medical treatment, like the procedures used to arrest cancer. As a cancer patient, you spend months or even years with your body being torn apart and poisoned while a threat of death hangs over you, all of which you can do very little about. This is a perfect recipe for PTSD.
“Reduction of Extinction”
Extinction is a funny term in psychology. It’s when anyone, human or animal, stops responding to stimulus because the reason to respond is gone. If I ring a bell, and then give you a cookie repeatedly, you’ll start grabbing a napkin and smiling when you hear the bell. If conversely, I ring a bell and then hit you, you will start to hunch over, flinch and protect yourself when you hear the bell. If I keep ringing the bell, but don’t give you a cookie or hit you, eventually you will stop reacting — it’s just gone back to being the noise of a bell. There are, however, some creatures who don’t respond this way. Souls for whom, for reasons unknown, the bell never sheds its meaning. It rings and rings and despite everything changing, they keep reacting, trapped without the ability to let the stimulus go extinct. The “Reduction of extinction” haunts the hearer, never fading the way it’s supposed to.
Everyone experiences the PTS part of the disease. Being upset, hurt, grieving, experiencing anger, frustration, and even powerlessness after a trauma is normal. We are so geared up to see every pain as pathological that we self-diagnose as soon as we’re deeply unhappy about something, without considering this may be the sanest reaction. Over time we integrate tragedies, they change us, and we move on. Six months after a major life event, most people are back to their baseline level of happiness. It doesn’t mean you never have bad nights, and that you don’t miss your loved ones, and so on — you do, but it’s a human scale missing. You get on with your life, albeit changed, but it’s still your life.
This is what happens to most people most of the time, whatever the trauma. You integrate terrible events into your world, into your mind, and time softens them. Trauma fades, the memories don’t hurt as much as months and years go by.
The D part of PTSD is when this assimilation of your history and fading of memory doesn’t happen correctly. No one knows why it happens to some people and not others. There are some genetic correlates that seem suggestive. It seems to run in families, and women get it at higher rates — though in both cases it’s not clear whether that’s basic physiology or that the lives of some families and more women are filled with the kind of trauma that causes PTSD. There might be a level of trauma that overcomes our ability to cope, but there seems to be survivors of everything, even genocide, who don’t develop the disease. There are others who come back from a single traumatic event and their own mind replays it for them, constantly, until they die of it. There doesn’t seem to be anything in the disease about the strength of one’s mind or character. For most people memories fade, and for some, they stay strong, and they intrude.
On the upside I am a bit of a ninja among my friends, which is fun. When something happens I am the first to be ready to react. I spot things better. Sometimes I even catch things falling before anyone else. I feel a little super-heroish this way. Once, while my daughter and I were staying with a friend, I woke to a gunshot in the distance. I was up and out of bed and looking around before I knew what I was doing. My friend and my daughter were all asleep in their own beds around me. There really wasn’t much to do, so I went back to bed and tossed and turned. Useless ninja. I am quite good in an emergency, but there’s never enough emergencies for me to get to be that kind of good.
I don’t like crowds when I’m not working. I don’t like large noises. I rarely go to parties, and almost never go to concerts. Except — it’s all different when I’m working. Sometimes, if I have to go to some crowded and large place, I bring a camera and pretend I’m working. I try to remain my friends’ cool ninja. It helps — I can go to events, and I can work them, and there’s no intrusion.
My therapy go-to — and I’ve tried just about everything there is — is called EMDR. It’s somewhat controversial, but it has a decent success rate. It was discovered by accident, and every explanation of how it works sounds like bullshit to me. Often I have thought: why, in science, can’t you just say we don’t know and get on with it? We don’t know why EMDR works for some people. Other people like CBT — Cognitive Behavioral Therapy — and its alphabet soup of variants. What Paul Atreides is doing is a classic example of CBT:
I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.
This is using a cognition and a behavior to modify feelings, and to endure. Most of the variants of CBT are just different ways for people to do the same thing, the same way I get out of those horrible thoughts that ensnare me, and Paul manages to obey the Reverend Mother Gaius Helen Mohiam and live.
But for me, this is all CBT does, lets me live. To overcome, to not be intruded on, I have to do EMDR. I sit down in a therapist’s office, put on a light set of headphones and put little vibrating buzzers in my hands. They go back and forth, buzzing and vibrating, and my therapist and I step through the memories of trauma as they come up. We change the ending, comfort the younger me, understand what should have happened. We make the past safer for me to visit. But it’s never entirely safe.
Despite all this, I don’t think I would want another brain. Mine is not easy to live with, but I have a secret I will tell you now. I can do it the other way. I can drop into memories so happy and real they make me cry. I can drown in my imagination, have adventures all bound up in my own limbs, lying on a couch. I have dreams that are like whole movies, as good as any I’ve ever seen. Above all my mind is vivid in every way it touches imagination and memory — and this is what makes me a writer.
You take the downs with the ups.
If you think you are suffering with PTSD, get help. Appropriate therapy can make your life much better. Those therapies include not only what I’ve mentioned above, but other talk therapies, medications, short and long term. It can take a while to find what therapy is right for some patients, but keep trying. It helps. Some resources for Americans can be found here: http://www.ptsd.va.gov/public/where-to-get-help.asp and in the UK here: http://www.nhs.uk/conditions/post-traumatic-stress-disorder/pages/introduction.aspx Everywhere else, google it. It’s worth getting help, even if sometimes the journey takes a while.