Death and Mortality

[dystrophian]

Mom, I think I’m immortal.” I told her as I sat on the toilet. This made perfect sense in my 10 year old mind. Why wouldn’t it? Death seems so silly to a ten year old. What, you actually stop living? That’s crazy talk!

“Why?” she said through furrowed eyebrows.

“Because I can’t die!” I proudly proclaimed. How does she not get it? I’ve never died before, so why would I ever die?

“Everybody dies eventually, Dystrophian.”

“Not me!”

***

Failure to thrive, that’s what the doctor called it. It sounds like being kicked out of college, like I got too many F’s or something. This was completely foreign to me, what the hell did he mean failure to thrive?

“If he’s not tolerating his food, then you really need to bring him in. He’s having too much reflux and it’s affecting his ability to eat. We’re really skirting the line with him.” I’d been having trouble eating for about a month. I would feel the liquid come up from my stomach, coat my esophagus and make it’s entrance into my airway. Sometimes it felt cold, other times it burned. I’d cough, choke and get this pain in my throat. But I couldn’t stop eating, I knew that would only make everything worse. I’d lose weight and weaken my immune system.

So I forced myself to eat. Everyday, I’d wake up with a dry throat, dry mouth and stare at the wall. How much longer can I do this? How long until my body just gives in?

It’s weird, I’ve always had health problems, but I was either too young to realize how serious they were or they came and went too quickly for me to care or think about them too much. I had trouble eating when I was 12, that’s when I had my feeding tube put in. But I don’t remember much from it, just the starchy taste of ensure and warm release of morphine after the surgery.

But this time… this time I knew what was happening and it scared me. I’d been to the ER fives times at that point, I know because I started collecting the wristbands. They’re still hanging in my room. Out of five times I was hospitalized three. Or was it two? I don’t even remember. All I know is that they kept sending me home because they didn’t know what to do. I would get these humongous mucus plugs that would clog around the trache. When we changed it, it would come out dry and bloody. A few times it even had crusted food in it.

They took me in at the hospital and ran one test. They tried to run more, but the weekend was coming up and all the departments were closing. So they scheduled me for an outpatient test and sent me on my way.

“Not good for you to stay in the hospital if we can’t do anything for you.” said the Doctor.

The outpatient test was the very next Tuesday. They wanted to check how fast my stomach was emptying. I googled it before hand to learn more about it. They do the test to check for delayed stomach emptying, this makes the stomach keep food in it longer, making food go up through the stomach. To do the test, they put radioactive material into my stomach and point a geiger counter at it. They then measure the rate at which the material disappears from the screen. They put the screen right in front of me and I could tell after a an hour that was what’s wrong.

The procedure to fix it is simple, make the feeding tube longer so that it goes into the beginning of my small intestine in addition to my stomach. I wasn’t extremely worried about that, though it did suck. It was how my problems were escalating. From not walking to not breathing to my stomach slowing down.

This problem represents a worsening of my condition, how long until other stuff gets worse? How long until my heart starts giving out? How long until I stop being able to do the things I love? I don’t know. The more I thought about it, the more I realized that, “Holy shit, I’m going to die sooner than most”. It’s strange because I knew that before, but it never really hit home. And now it did. It left me in complete shock for a while. I would play video games instead of writing. I stopped listening to music. I would stare at my computer screen with a total lack of interest. Days were foggy and boring. I didn’t know who I was anymore.

I want to do so much, it’s not fair.

And that’s when I caught myself. The self pity was too much. I can’t live like that. I don’t want to be that person. That person that wallows in self pity and wastes his life. That’s not how I’m built and I promised myself a long time ago that that’s not who I’ll become.

***

“Dystrophian, everybody dies eventually. You’re no exception, but don’t worry, you’re not going to die for a long time.”

“Hmm…” I thought about it for a second, “Okay!” I didn’t really believe her.

criplife.wordpress.com/2012/08/03/death-and-mortality/

[Emma]

Thanks for sharing. It was interesting to read your perspective.

[janewheeler]

I really enjoyed this. I hope to read more of your writing soon!

[BA]

I don't know what to say, because I can't conceive of how you (or some others on this board) live their lives daily. You have shown me that there are only two choices. To be busy living as much as fully possible or to die. Thank you for sharing.

[Inigo Montoya]

I love the way you expressed that. The matter of fact tone. Your determination to make your mark.

I have now wandered over to your blog. Good stuff.