A few days had passed, I think. I’ve never been very good with time. I was still waiting to find out when I’d get to go home. I was starting to get stronger. I figured that’s all I needed to do. Get better, go home. This is just a serious but minor setback.
That wasn’t right. That wasn’t right at all.
They came in that day and started talking about getting me moving. Like out of the bed? I was completely weighed down by tubes and wires. And what about the machine? I was attached to this giant machine. I still couldn’t look down. I wasn’t ready to see how it connected to me. I still didn’t have the courage. I thought I was the one on major pain meds but they’re the ones talking crazy talk. I couldn’t possibly get moving with everything I had going on.
They rolled in this little, carry-on luggage sized, black box with a handle. Just like a suitcase. “This is it!” What? What is it? I didn’t actually say anything out loud. Usually, I’d look to my mom and hope that she could read my mind. Luckily, she had the same question. It turns out it was a new machine. A portable machine. Basically a battery to the pump that was on my stomach. No no no! I don’t need that! A portable machine was too permanent. Too long term. No thank you, Sir, I will be going home soon.
I stared at my mom more intensely. She must know that I didn’t want or need that. I need to go home and go back to school and finish my year!
That also wasn’t right. It turns out I had to go up to a room. I wasn’t getting stronger. Well, I was, but my heart wasn’t. The machine I still couldn’t look down at had been pumping it for me. No-no-no. No. Why? Why won’t they let me go home? I can’t go to a room. I don’t want a room. Someone else can have it. I wasn’t staying. I cannot stay. I’m going to miss my first end of year high school trip. I just really can’t do that. Ok?
My mom tried to explain it to me gently. I felt this incredible weight over my entire body. It was as if I had a giant boulder on my chest. I stopped breathing for a moment. It was no longer the tubes and wires weighing me down. I was scared. I felt like I was suffocating. I felt so trapped. I just want to go home.
Switching me from one machine to another was a pretty big deal. I don’t know if they were making it dramatic for my benefit. Was this guy trying to make me smile or something? That wasn’t going to happen.
First, though, they had to clean my dressing. This wasn’t the first time. It had to be done a lot. It makes sense that you would have to keep holes in your body clean. To do this they would lift my gown and I would feel a cold feeling, some tugging, and a little pressure on my stomach, and that’s it. The first few times, I hid my gaze behind the lifted gown and disappeared into the world inside my head. Not this time.
I had to do it. What if it wasn’t that bad? What if I was going to be, ok? I had to find out. So, I looked.
That’s the first time I realized what really made me uncomfortable. Sure, I wasn’t happy seeing what happened to me. It was gory. This mechanical thing entered through my skin in two places. I don’t think I really understood it. It was so foreign and even bigger than I thought. There were wires stitched around it through distorted skin. It was a lot. But the thing that worried me more was everyone else. Not their reactions to my scary stomach. Their reactions to me, reacting.
One of the hardest things is being afraid to react. I didn’t want to be told I was going to be ok. I knew that. I knew that more than anyone else could. I almost never want to be told that things will be ok. It feels dismissive. Like what I’m feeling doesn’t matter because it’s temporary. One thing I’ve learned over the past 20 years is that it wasn’t temporary. All I wanted was to be able to scream and cry and be angry and afraid without hurting or scaring the people around me. But that’s impossible. I had to be ok.
I was ok. I really was. I still am. I always will be. I promise.