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PTSD Means ...

Updated: Jan 10, 2020

Post Traumatic Stress Disorder. When trauma and loss collide, such as in the unexpected death of your healthy child, such as in the finding of their lifeless body, such as in the utter implosion of your life and being, PTSD is the natural outcome. But nothing about living with PTSD feels natural. We think of it as the misfortune of soldiers, and my compassion and empathy for our veterans is tenfold now that I have a taste of their torment, but PTSD is not only a military disease. It is the afterbirth of trauma. When you are asked, body and soul, to absorb the shock of an impact too great for your cells to contain, you break. It is that simple. PTSD is where the cracks show.

I don't know what PTSD means to a man who has returned from war, though I've read many descriptions and try to imagine. I know only what it means to me as a grieving mother.

PTSD means my mind is not my own.

In the early months, it was caught in a continuous cycle—replaying the events of finding Evelyn back to back without end. Here is when I touched her foot and first felt the coldness of her body. Here is when I shook her, shouting her name over and over, to no avail. Here is when I rolled her over. Here is when I screamed. Here is when I ran. Here is when I cried. Like an audio feedback loop, the sounds of my horror and heartbreak were picked up somewhere in my brain, amplified, and forced out again, only to be picked up again, amplified again, forced out again. You wouldn't believe the constancy with which my mind devoted itself to this singular task, as if in the telling and retelling and retelling it might eventually come to a different, acceptable conclusion. It never did.

Have you ever experienced an intrusive thought? Of course you have. It's the whisper that you're too fat, too stupid, too old, too scared. It's the memory that comes flooding back when you smell a shampoo you haven't used since high school, or hear a song on the radio that you used to sing all the time. It is the thought that chooses you, rather than the thought you choose.

But have you ever experienced a flood of intrusive thoughts? An overwhelming tsunami of memories and feelings so entangled you could never sort them, look each one full in the face, and name it for what it is. They come over you like rapid fire, each drudging up the next and the next. They ascend with such ferocity and violent speed that you barely register the feeling of the world dropping out from under you before you are lost. Like a riptide, you are sucked under, bashed again and again by wave after wave with no pause for breath in between. Until you are utterly reduced. Until you are no longer a person, but a hysterical frenzy of emotion and agony.

PTSD means I can be ambushed at any moment.

Today, it is the sudden and intrusive memory bubbling up from the miasma of my mind. Maybe it's the shadow sliding across her cheek. Or the phone call I had to make to my husband. Or reading the wretchedness of my condition in a friend's expression. Or the contents of her stomach in the autopsy report. Or the sounds I make when I cry for her. It can be anything. There are a million memories now that my mind can torture me with. Some of that day. Some of days before. Some of days after.

Tomorrow, it might be someone's insensitivity or indifference toward my grief ("Why are you upset? Did something happen?" Yes, something happened. My kid died. Remember that? That happened.). Or seeing a quote that used to be on one of her favorite t-shirts. Or hearing a siren. Or driving past the place where we held her memorial. An unexpected phone call that sends my heart plummeting. The stillness of my son sleeping. The girl with her haircut in the supermarket. The smell of rain. The sound of wolves.

The next day, it may be nothing particular at all. I might simply be driving, or washing dishes, or reading a book, when my body begins to buckle and shake. When the tears flow without mercy and my lungs burn, calling for air, and the sorrow that lives inside of me escapes in long, slow peals between gritted teeth. These are the times when my body has its own kind of flashback, each muscle reliving the torment of that morning in August, like a seizure of the heart.

PTSD means everything hides its own brand of danger.

Every smiling face conceals a knife behind the back. Every laugh is courting disaster. Every car ride, or night out, or moment alone is only a hair's breadth away from devastation. It means the worst case scenario is not only possible, but plausible. When something as innocent and benign and mundane as sleep is a killer, then how much more unsafe is everything else? Eating. Walking. Driving. Speaking. Each of these can kill you—or more importantly, your loved ones—in its own way. It means that every sharp word is as powerful and violating as a fist to the face. And every stumble, or injury, or illness is a near-death experience. The world is infinitely bigger and scarier and meaner than you've ever encountered before. You are never safe. You cannot hide. You cannot rest. You cannot forget.

PTSD means I'm not in command.

My mind has its own agenda. My body has its own agenda. They have stopped consulting me about most things. My sphere of influence within my own physical being has shrunk to a dot as small as the one at the end of this sentence. Outside myself, it is even smaller. The delusion of control has lost all hold on me. I am aware that as easily as I can act upon the world, so the world can act upon me. For better. For worse. The only power I have is choice. And every choice is as likely to lead to something horrible as it is to something beautiful. You cannot know what you don't know. We are only, ever shooting in the dark. Even when we believe the sun is high, the mark is clear, and our aim is good. We are masters of nothing but self-deception.

PTSD means I have a brain injury no one can see.

The similarities between what someone who has experienced traumatic brain injury endures in recovery and what I often contend with were shocking to me at first. I didn't hit my head. I wasn't thrown from a moving vehicle or tossed like a ragdoll in an explosion. But every day I deal with debilitating memory loss, cognitive challenges, and difficulty with attention and focus. I often become confused or have spells of disorientation. My short term memory is faulty at best. Everything must be written or set as an alarm if it is to be remembered at all. My notes need notes. And I must set alarms to remind myself to actually read them.

My long term memory is lost to a fog. I can recall so few details about our life before Ev died. And the months following her death are like a terrible dream that flees upon waking. I will go to speak a word, say a name, or perform a task and find that it is gone. I feel like I live with a kind of amnesia no one wants to name. Sometimes, it seems there is some method to the madness, as in the multiple instances where I have literally forgotten the month of August exists. But most of the time, it feels pointless. Random. Scattered.

My verbal filter has blown apart and I hear myself saying things I would never have said before to people I would never have said them to. Time does not exist anymore. I have lost all sense of it. I have more than one calendar to help me, but I usually forget to check them. It's difficult for me to string my thoughts into any kind of cohesive order. That means all the tasks I performed before take much more concentration and energy to perform now. I tire quickly. I hit my wall ... daily.

My therapist tells me repeatedly to remember that my brain has endured a literal injury, even if the offending blow was not physical. Trauma lives in the body. It changes it. It rewires our circuitry. I don't actually have the same brain I woke up with the morning I found our daughter. There are no bandages wound around my skull. No scars across my scalp. But the frustration of being trapped in an uncooperative mind is something I am all too familiar with. I wonder what this will mean for my mental function as I age. Will it decline more rapidly? Will my surviving children have to step in and take over in a decade or two, rather than three or four? They often tell me stories about our life before Ev died to help me feel connected to who we were. It's strange to hear my own history from someone else's lips as if I had no part in it. Stranger still to see the concern and compassion in their eyes when I show no recollection. I know all the stories of who we were are in there, somewhere. But the roads to access them have been closed, deemed impassable.

PTSD means, at its core, that I am not like everybody else. Nor am I like I once was. I am changed in ways that still surprise and frighten me, that frustrate and exhaust me a year and half later. I require the patience and compassion of a Buddha as I continue to work on developing coping mechanisms that actually work for the person I am now, an annoying process of trial, error, and disappointment. And I must contend myself with a world that has surprisingly little to offer for this condition, even though up to 8% of our population experiences it.

It means that I grieve my daughter with only a portion of the mind and heart I once loved her with. My memories of her are all scrambled and hard to reach. They slip away when I grasp for them. I tuck things away in my brain for safekeeping only to find they are not there later when needed. I am always in the present moment unless and until I am in a flashback. Neither feel very hospitable.

I live with PTSD because I live with the death of my child. It is not who I am, but it is a significant part of what I face every day now. I imagine, with time, it can improve. And in some ways, it already has. But unless you can scrub the image of her corpse from my mind or bring her back from the dead, then you cannot expect me to "heal"as though this never happened. As long as I live and Evelyn doesn't, that trauma is part of me, and PTSD will remain part of me too.

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