AIDS?

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

Our book club recently read a book that referenced AIDS and how in the early ‘80s the disease was initially referred to as “gay cancer.” The book also mentioned how some health practitioners refused to treat patients with this disease. Similar to the early months when COVID-19 was first detected, there was uncertainty as to how AIDS was transmitted when the disease emerged.

However, by 1986, when the scene included below takes place, the mode of transmission was documented and understood.

That said, even if there was a lot of misinformation still floating around, what would you have heard? That AIDS can be transmitted by kissing? Or hugging?

Keep in mind that I’m an 11-year-old girl in the passage below. In addition, keep in mind that, because of the metal in my nervous system, with deposits especially concentrated in the basal ganglia, I was having difficulty walking. Am I thinking about kissing anyone? No. It’s not anywhere on my radar. Nor will it be for years and years to come. I’m trying to remember how to put one foot in front of the other.

My social life was nonexistent. Outside of school, my network included all of my specialists, my therapy team, my parents, and my brother Peter. I did not have friends. I was trying my best to retain the few skills that I still had left. That was it.

_________

This is an excerpt from Chapter 7, “The Threat.” This is the segment that comes after the excerpt that I posted last week.

It’s the end of the school day. Like usual, Peter is doing sports after school and I’m the only one coming home. If I were him, I’d busy myself in all the after-school activities I could. Anything to escape from all the heaviness. Not that he acts like he doesn’t want to be here when he gets home. He’s his normal, happy self, telling one funny story after another.  

“How was your day?” my mom asks as I close the door behind me.

“Fine,” I whisper, the same response I always give.

I sit down on the kitchen stool and scoot closer to the counter. When I do this, the legs catch on the grain of the hardwood floor. That’s when I notice a smell. I sniff a couple times and realize that what I’m smelling must be the lingering smell from the varnish that was applied to our floors last week. I don’t necessarily mind it, but it’s definitely a strong smell.

“Want me to help you with your homework?” my mom asks.

I nod. 

My mom reaches into my backpack, pulls out my planner, and sits on the stool next to me.  

“Let’s see,” she says. “Fill in the names of the states.’”  

I look over her shoulder at Jenny’s loopy handwriting in my planner.  

“Okay, I’m going to point to a state and you tell me the name.” My mom points the sharpened end of the pencil at the northwestern-most state.

“Wash-ing-ton,” I say, each syllable punctuated by a breath.

When we reach the states in the Midwest, the phone rings. “Oh, that could be the hospital calling with your latest blood results.” My mom rushes over to her desk where the phone rests.

“Hello?” my mom answers, her voice hopeful. 

I’m looking at the states that cluster around Minnesota, reminding myself of their names, when I realize there’s an eerie silence. My mom hasn’t said a single word after “hello.”

I look over at my mom, and there she sits, totally still, not making a single movement, not saying a single word.  And then, all of a sudden, she collapses, the top half of her body folding down onto the desk.

“Mom?” I croak.

She doesn’t move.

“Mom!”  I grab the counter and push back so forcefully my stool falls over. “Mom!” I place my head inches away from hers and rub her back.

She pushes herself back up with the palms of her hands, and in the process, many of her organized papers fall to the floor.

“Mom?” I ask.

“Honey,” she says, her voice strained. “I need to be by myself. I’ll be back.”

I watch my mom walk out the door that leads to our garage. Where’s she going? Did she get the results back from my recent blood draw — and are the results that bad? So bad that she can’t even tell me?

I sit in the chair that my mom was sitting in when she took the call. Only then do I notice that the phone hasn’t been placed back in its cradle and it’s making a busy sound. My mom’s sobs coming from the garage are that loud.

I wish I could comfort my mom, but that’s not what she wants right now. I look around at all the scattered papers. My mom is such an organized person. It will be hard for me to coordinate both sides of my body, but maybe she’ll appreciate it if I tidy things up? I set to work, my heart hammering harder and harder inside of my body with each passing minute.

Later that afternoon, when I’m on the dark blue couch in the family room and dozing off, I hear the phone ring.

Given the sky has gotten darker, I’m guessing it’s my dad calling, telling my mom that he’s about to head home from work. Because of this, I push myself upright to better hear the conversation. I need to know what happened earlier. I can make out bits and pieces: “…prank call…” my mom says. “It was a…”  

I stand up and take a few steps toward the kitchen, walking as quietly as I can, knowing that if I’m overheard my mom will start talking about something different. And I will be left clueless. I’m not quite sure why I feel a need to find out what the call was about, especially when it clearly wasn’t good. Maybe knowing what I’m up against is better than not knowing? I don’t know. I’m up against quite a lot already.

My mom continues. “It must have been a mom from school. She…the woman screamed, ‘Get your child out of school!’”

I picture my mom, just hours earlier, hearing these words yelled through the phone. Oh. My. God. There are people out there who are this afraid…of me?

I take another step forward — and another. Why does this mom — and perhaps others — think I shouldn’t be in school? Believe me, I’m painfully aware of how different I am. But how am I a threat? A big enough threat that this woman thinks I shouldn’t step into school?

“John,” my mom pauses. “She accused Megan of having…AIDS.”

_________

This scene still haunts me to this day. How could it not?

How does being seen as “the other” impact the way I live today? Well, today it’s got me thinking about politics. The world of politics has become explosive. Why do we have to villainize the other party? Why can’t we have civil discourse? Why can’t we approach people who identify with another party with curiosity? With an interest in better understanding why their affiliation is what it is?

We recently elected new school board members for the Minnetonka Public Schools. Prior to the election, I came across some of the progressive candidates’ signs that were knocked down. Seeing this, I felt sick to my stomach. While these are the candidates I supported, I also would have been discouraged had I discovered that the other candidates’ signs had been knocked down. I worry that this behavior – on either side – keeps people from being curious about and interested in understanding why other people endorse different candidates than they do. It reinforces an us-versus-them mentality. How do we grow when we’re locked in this paradigm?

Let’s have our opinions – and teach respect of “the other” at the same time.