I’ve been in the hospital three times in the last three weeks. When I used to go as a kid, my parents had all the control. They, of course, consulted with me on every decision, but they always had final say. Now, when I go, I have final say on everything. And I’m slowly realizing how much doctors and nurses underestimate me. How, after they take one look at me, they make a laundry list of assumptions: I can’t talk, therefore my parents make all the decisions. I can’t move, so obviously I can’t feel anything. I look feeble, so I am.

Every time I go it’s a struggle to have them take me seriously. I can see it in their faces. They try to pretend that they are listening but, their actions betray them.

“How does he usually get his feedings?”

“I take 300ml 4-6 times a day with 100ml of water.” They nod along very slowly and then turn right back to whoever is with me as soon as I finish talking. It’s as if nothing I said made any sense. I’m just a crippled kid that’s too sick to have any semblance of a rational thought.

“Does he get bed sores?”

“Can he be off the ventilator?”

“How does he get transferred?”

Always “he”, never “you”. They don’t act like I’m human.

***

On my second hospital visit, the ER doctors ordered my very first CT scan. I’d never done one before, so I had no idea what to expect.

“Can I stay with him?” asked my dad as the doctors wheeled me into the room. There was a large tube shaped machine in center of the room. It looked like something out of a Sci-fi series. I half expected to get transported to Mars where an alien would tell me the meaning of life.*

“No, you can wait outside.” said the nurse.

“But you won’t be able to understand him.”

“Don’t worry, we’ll take good care of him.” Apparently, it doesn’t matter that they can’t understand what I’m saying. As long as they can see my vitals, everything is fine. Never mind that I know more about myself than they do or that I can tell them what’s going on without them having to waste time figuring out if something is wrong. That doesn’t matter to them. They obviously know better than me.

So my dad went outside and they slowly wheeled me under the alien transportation machine while being very careful not to pull on my IV or trach. The machine whirred to life and made lots of whiny noises that gave me hope for my alien theory. I watched it flash and spin and wondered if this was all there was to the procedure. It wasn’t.

I saw one of the nurses walk up next to me, grab my IV and inject what felt like a very hot liquid into my vein.

Oh, you’re not going to tell me what that was? Thank you.

He casually walked away as the liquid coursed through my arm and spread to my chest. The initial hotness of it turned to a searing burn. It moved from my chest to my other arm and pretty soon engulfed my whole body.

I imagine this is what being on fire feels like.

My chest tightened, my breathing got shallower and my heart started racing. Calling the nurse would have been useless because she couldn’t hear me anyway. And even if she did hear me, she wouldn’t be able to understand me. I wanted to freak out. I wanted to scream, “I think I’m dying here guys!”. But that wouldn’t have helped anyone.*

“Are you okay, honey?” The other nurses’ voice blared through the intercom.

“Uh… no.”

“Okay, you’re doing great, honey. We’re almost done.”

You clearly understood exactly what I said. I get snarky when my life is in danger.

The machine kept whirring and I kept hoping that my heart wouldn’t explode. The burning slowly subsided and they pulled me out.

“You did great! Are you feeling okay?”

“No, my heart rate is really high and that medicine you gave me burned a lot.”

She looked around confused to the doctor and technician. “Let me get his dad, I can’t understand him.”

I’m right here, lady! I rolled my eyes, but she didn’t see. She came back in with my dad, “I can’t understand him.”

I repeated what I said to my dad and he repeated it to her, “Oh yeah that was the IV contrast, it helps the CT machine see everything. He did have apnea and an elevated heart rate, but it wasn’t too bad.”

It felt pretty bad.

I was scared, exhausted and I had been throwing up for about 8 hours, so I let it go. I wasn’t about to make a show about something that wasn’t going to affect me right then and there , but this should never happen to anyone. If I was any other patient they would have had the decency to tell me, “Hey, we’re injecting your vein with this thing that’s going to make your body feel like you’re on fire and might make you feel like you’re dying”. They might have the decency to talk to me instead of at me. But they don’t. Because, to them, I’m just a frail crippled boy.

*It’s 42, I don’t need aliens to tell me that.

*Pro-tip: Freaking out doesn’t help a high heart rate.