Blog Posts | Brentuximab | Flashbacks | Internal Family Systems | Triggers

The Little Old Man Who Never Slept Part 2

August 1, 2018

Part 1 of this story is here.

Then, gently, I start talking. I tell them about who I am now, the big Ellen who lives by herself in her own nice house. I name all the things in the room, my room: my many books, my organ, my bold, striped couch, and my pretty red and pink lamps. I tell them how everything isn’t funny-shaped or shrinking or growing huge. It’s normal-sized, and it’s a nice room. I touch my hands and feet and make fists and curl my toes and tell my audience that they are normal now. My hands and feet never became huge, and even though they now feel numb, they are still connected to my body. I can still feel things: my soft recliner or the shocking coldness of ice cubes. I’ve slept every night for the past twenty-six years (well, not quite every night), and I always wake up to myself. I’ve never lost myself and never will. I’m a big girl now, all grown up, and finally safe.

By the time I finish talking, the little girl has stopped shaking, and my little wizened protector is leaning against me, his eyes drooping shut, his body relaxed. I quit talking and his eyes snap open again. “It’s okay,” I whisper. “You can sleep.”

“No, I can’t,” he protests. “I need to stay awake to protect you.”

“No,” I reply. “You don’t. I can take care of myself now.”

His eyes are sad. “I wish I could believe that. I know you’ve told me all this, but I need to stay awake for you.”

My eyes are sad too. “I’m sorry. What can I do to help you sleep?”

“I don’t know. Just don’t leave. Keep talking to us. It helps.”

“I will. I’ll keep talking to you and telling you about myself. Maybe soon we can find a way to let you sleep.”

“I hope so.” He yawns. “It’s okay. You can sleep. I’ll stay awake and protect you. I’ve stayed awake this long one more night won’t matter.” I fall asleep that night, part of me, the wizened old man part of me, still awake and on edge, but at least I sleep.

The next week is a week of constant triggers. Every day, sometimes every other hour, my brain screams on the edge of its precipice, my numb hands and feet constantly triggering the terrified four-year-old part of me still shaking under the blankets.

And then, I know what to do. A week later, I sit in the exam room with my oncologist and tell him. Kind, grandfatherly, caring man that he is, he listens without judgement or comment as I tell him that I cannot keep on with this chemo. I tell him of the memories of a little girl disconnected from her body and the triggers that keep me from sleeping. He asks a few questions to gain clarity and unequivocally agrees with me. “Okay. Let’s stop treatment.” The quivering tension inside me eases.

A few days later, I check in with the wizened old man and the shaking four-year-old. It catches me off guard. There are no blankets, no shivering hump, no wizened old man holding a flashlight. Instead, a tiny toddler with dark hair damp against the pillow sleeps peacefully, one arm flung out, relaxed, fingers uncurled. The look on her toddler face is one of peace and total security. Surprised, awed, I look at her and gently stroke her out flung hand. She stirs only slightly and then resumes her deep breathing.

I hear a chuckle behind me and spin around. My little old man is leaning against the door jamb, smiling at me. He’s still wizened and stooped, but his skin is no longer so withered and shrunken. He smiles at me with bright, wide awake eyes. “That’s a beautiful sight, isn’t it?”

“It definitely is. Why aren’t you sleeping too?” I ask him.

He laughs. “Oh, I did. Believe me, I did. I don’t know how many hours straight I slept.” He yawns, his jaws cracking. “I think it’ll take me years to catch up!”

“What did I do? Why are you able to sleep now?” I ask, puzzled.

He chuckles again. “You fought for us.”


“You believed us. You heard us. You cried for us. You cared for us. And then you did something about it. You spoke up. You used your voice to say that you needed to stop the chemo. You didn’t keep telling us it wasn’t real. You believed yourself, realized that you needed to care for yourself, and fought for yourself. In doing so, you fought for us.”

“So now what?” I ask.

“This will be the last you see of me,” my wizened protector says. “You don’t need me anymore. You don’t need to stay awake. You can hear yourself and care for yourself and believe yourself and use your voice to do what’s best for you. My only role was to stay alert and to protect you until you could do it for yourself. Now, you can, so I won’t be showing up anymore.”

I turn to study the sleeping girl in the bed. “That’s why she never spoke to me, isn’t it?” I ask.

“Yes,” he says simply. “She wasn’t four. Not really. That’s why she couldn’t speak. She was trapped without any words. Now you’ve freed her, and, in the process, freed yourself. She couldn’t tell you. That’s why she needed me. Now, you and she are one person again. She doesn’t need me. She has you. You don’t need me because you love yourself and care for yourself. Honestly, I’m so proud of you I could burst!”

I laugh. “Please don’t! The thought of my hands bursting was bad enough!” We both laugh in earnest then.

Our laughter wakes up the girl in the bed. Her face puckers for a moment, as if about to cry. Then she spots me. She smiles and stands up. She starts bouncing, the mattress springing her into the air and plopping her back down. Soon, she’s giggling until she bounces one time too far, and I quickly catch her before she hits the ground. Through the open door, she sees her toys. Intent on playing, she squirms for down and toddles off.

My protector and I smile at each other. “See ya later,” he says, and leaves the room, his step brisk and smile wide. I plop down on the bed and look at my hands. Gently I rub my numb fingers across the palms of my hands. No triggers. No screaming brain. No shaking little girl. All is well.

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The Little Old Man Who Never Slept Part 1

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