3 am. Again. What was this? The tenth night in a row? I didn’t know for sure. I had lost track. I simply was unable to sleep. By now, I was exhausted, too exhausted to think straight anymore. I sat on the recliner, staring at my hands and feet, crying, trying to eat a snack after not eating most of the day before, nearly hyperventilating in my panic. I knew I had coping strategies for when a flashback got this bad, but I was too exhausted to think of them.
Finally, in desperation, I posted on Facebook in a support group for people with C-PTSD: “I need help. I need to calm down. I know I have tools to help me, but I can’t think of them right now.” A few of my fellow PTSD sufferers posted their own helpful strategies in reply: “Breathe. Listen to music. Pray. Feel something soft.” Their prompts started my brain, and soon I calmed myself and then fell asleep.
Later that day, after sleeping nearly all morning and part of the afternoon, I sat down to talk with the part of myself that was trying to protect me by not letting me sleep. “Why can’t I sleep? What’s wrong? This has been happening for weeks, and I don’t understand.”
Silence. I know the part is there. I know both parts are there, a terrified child and the child’s protector, but neither are speaking to me. That’s when I see it, on the bed, a hump in the blankets. The hump is shaking. I crawl onto the bed and ever so slowly lift the blankets.
There, burrowed towards the foot of the bed, lies a petite, four-year-old girl. She is face down, her face pressed against her arms. She is shaking, her body literally trembling with terror. Beside her sits a little, wizened, old man. His body is the size of a 5-year-old, but his skin is shriveled like that of an ancient, ancient man, his face stern, his eyes dark and unblinking. He sits beside the trembling girl, his arms locked around his knees. With one hand, he holds down the blankets that cover both of them. His other hand holds a flashlight. He doesn’t move or speak or look at me or even at the girl. He just sits there, holding the blankets and the flashlight, its faint beam dimly lighting the darkness beneath the blankets.
I stare at them for a little, then crawl under the blankets with them, pulling them down over all three of us. The little girl starts and burrows even further towards the foot of the bed, pressing her face harder into the mattress. The little wizened man still doesn’t move. I watch them for a moment, unsure what to do or say. Then I ask them, “How long has it been since you slept?”
Silence. Then, in a thin voice rusty from disuse, my little wizened man spoke. “Never.”
“What?” I ask, startled that he had even spoken.
“Never. I never sleep and neither does she.” He gestures toward the girl. “Neither us have ever slept.”
I can hardly believe my ears. “Never?”
A terrified girl, alone all these years, unable to sleep, with only a protector beside her. Between my tears, I ask, “Why? Why haven’t you ever slept?”
This time he looks at me. “Your hands and feet. You were looking at them last night. You tried to feel things with them. You held ice cubes in your hands and rubbed them on your feet. Why?”
“Because my hands and feet are numb. The chemo I’m getting right now causes numbness in my hands and feet. They don’t feel like they are attached to my body anymore. They kind of feel like lumps of wood. I needed ice cubes to remind my brain that my hands and feet are still attached, and that I’m okay.”
He nods. “Remember? Do you remember how it felt when you were her?” He gestures again towards the girl, still trembling and still silent.
And then, I do remember. I remember the terror of my four-year-old self. My hands and feet often felt as if they had swelled to immense proportions. I’d look at them, like they were alien, not a part of me, perhaps connected to a robot instead. They felt so huge, and I could barely move them. Night after night, I’d go crying to my mom, terrified, showing her my hands and feet, telling her they were too big. Again and again, she’d tell me that they weren’t huge, that I was okay.
I’d go back to bed and lie there trembling, my hands balled into fists, my eyes screwed shut. Inevitably, I’d open my eyes, and now not only had my hands changed sizes, my room had gone crazy too. The furniture was ten times too big while the room itself had tilted crazily and elongated itself. The ceiling descended to crush me as I lay on the top bunk of the bunkbeds I shared with my sister. Shadows cast by the glow of the nightlight turned to hideous monsters. I’d lie there, frozen in terror, unable to fall asleep. I was only four, but already I wondered if I was crazy. Every night, the same terrors held me frozen under the covers.
I snap my eyes open. Sometime in the middle of my memories, I’d closed my eyes and become again that four-year-old burrowed into the covers, shaking in terror. My wizened protector is watching me. “You do remember,” he says softly. I nod and look down at my hands. They are wet with my tears.
“You were scared. You were scared that sometime, some morning, you would wake up and you wouldn’t be you anymore. You were scared that, if you slept, your world wouldn’t be real and that you wouldn’t be real either. Some morning, the room might still be twisted crazy and your hands would still be huge. So, I stayed awake for you. I stayed awake for you so that you would know that you wouldn’t lose yourself. I stayed awake to make sure you didn’t disappear or go crazy. I stayed awake so you didn’t have to.”
He pauses, and then his voice sinks to a whisper, “But Ellen, I’m really, really tired. I’ve been tired for so looong. I’ve been awake for so many years I’ve lost count. I just really want to sleep, but I can’t. I daren’t.” As he speaks, his eyes droop. He shakes his shoulders and opens his eyes wide, lifting shriveled hands to pull on his eyelids and slap himself awake. “Please,” he whispers. “I’m so tired. Can you help me?”
Still crying, I wrap my arm around him and pull him against my shoulder. The little girl is still shaking, but now she creeps to my other side, her face still buried against the mattress. Gently, I lay my hand on her shoulder, but her shaking doesn’t stop. She still hasn’t spoken. I begin to wonder if she will ever speak.
To Be Continued…
The feelings I experienced when I was a little girl–of swollen, misshapen hands and a crazy, unreal room–are called depersonalization and derealization. They are both forms of dissociation. Depersonalization often results in the feeling that the body is alien, not real, not belonging to oneself. Sometimes, it feels like the body has split into two or that the person is hovering above his body looking at it. Often, body parts feel disconnected, as if a robot is controlling them. Body parts can also feel like like they are out of proportion or much larger than normal.
In derealization, the world around a person doesn’t feel real. Sometimes, things such as walls, stairs, or furniture appear to change size or proportion. Often, there is a dreamlike quality to it, as if everything is happening in slow motion. Derealization can also cause the feeling of living in a bubble, like a clear film between the person and the world. Inside the bubble, sounds are muted and distant, and colors are grayed out.
As a child, I experienced both quite often and found them very disorienting. That’s why I had the flashback when the chemo caused the peripheral neuropathy–numbness and tingling–in my hands and feet. The numbness made it feel like my hands and feet were disconnected to my body, which triggered a flashback into the terror I felt as a child.