Betrayal

This is an archived post that was originally published at beyond-terminal.com

In this excerpt you’ll see that I ask Ms. Sweeney, my supervisor, for help when it’s more than apparent that Roger needs dedicated support.

Of course, Ms. Sweeney wasn’t aware that, ever since recovering from my childhood illness, I had made a pact with myself to be self-reliant from here until eternity. That I was going to be the one helping others, not the other way around. Because of this, she had no idea what a big deal it was for me to be asking for help.

Despite this, I still was shocked and crushed by Ms. Sweeney’s response.

In the excerpt below, you’ll discover that it’s the expectation that I continue to place myself and my students in one dangerous situation after another for six…more…months. And document everything in the process to justify that Roger needed support through an individualized educational plan (IEP). I was in absolute disbelief and felt utterly powerless.

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I skipped over the flashback that I’ve included in the chapter “Desperation” since you would have read about my experience with O.T. in my blog entry titled “The Gift of Movement” (October 11, 2021). What you’re about to read is from the chapter that follows “Desperation,” titled “Betrayal.”

As much as I had re-made myself into an independent, self-sufficient person, I was going to need to ask Ms. Sweeney for help the next time she was at school. I hated everything about this, but I didn’t see any other way forward. So when Ms. Sweeney returned to school in mid-November, I gave myself a mental pep talk and took a deep breath before walking into her office. 

It’s a good thing I had focused on my breathing ahead of time because the scene in front of me left me close to breathless. There were stacks and stacks of papers piled up on the desk, and in between those stacks was Ms. Sweeney with dark circles under her eyes, looking totally washed out. 

I didn’t want to impose on her, yet the fact that I was standing at the helm of her room – about to ask for help – meant that I was desperate. So I sat down in the chair across the desk from her and made eye contact with her through the narrow channel between the stacks of papers. And then I told her what had transpired and about the plan that Anne and I had implemented for Roger.

“It sounds like you’ve got it figured out,” Ms. Sweeney said.

“No,” I said with a shaky voice. “It’s not sustainable.”

“Well.”  She paused. “You’ll have difficult classes in the future, too, you know.”

Her words throttled me and left me speechless for a minute. I had expected compassion, empathy. As time elapsed, the channel between the two of us narrowed even more. I wanted to push the papers off her desk so she couldn’t block me out, so she could see me – and hear me. This is me asking for help, I wanted to shout. Do you realize how bad things must be if I’m asking for help?!

Instead of losing my cool, I said in a shaky voice, “I realize that. I know. But, Ms. Sweeney, this is different. This is dangerous. Roger needs a dedicated paraprofessional.”

“Well,” Ms. Sweeney said. “You’ll need to document everything for the next six months to make a case for that.”

“Six months?” I stammered. I needed to keep doing what I had been doing for six…more…months.

I couldn’t get another word out, so I bowed my head and left her office, the defeat settling like a cancer in my chest.

Rather than taking a left and going straight back to my classroom, I took a right and went outside. I sat down on the yellow curb, the one I had told my students to stay off of countless times as I walked them to their buses at the end of the day. Given that there was no traffic, it was safe to sit here. Despite this, the cold air vibrated with danger and betrayal and entered my lungs.

Betrayal. Betrayal. Betrayal. 

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Enduring this without extra intervention for six more months seemed unfathomable.

It was at this very moment that I felt more desperate than I had in my entire life. Even more desperate than I had felt when I was diagnosed with Hallervorden-Spatz. No joke.

Why did this hit me so hard? It was because my students – my students! — and their families were counting on me to make this work. And I didn’t want to let them down. I was interconnected to others in a way I hadn’t been as a child when I was on the verge of dying in the privacy of my own home.

And to add fuel to the fire, I felt more betrayed than I’d ever felt before. I had used my voice, I had spoken up, and it hadn’t made any difference. Apparently, Ms. Sweeney was one more “expert” joining the ranks of those other experts (e.g., Dr. Snow, Dr. Pierce) who was telling me to suck it up and deal with the reality in front of me.