12:48am April 9, 2013

It’s weird the way people try and comfort me.

Like there’s this really nice nurse on the night shift right now. No seriously, really nice. Not sarcastic. He’s gone out of his way to make me and my roommate more comfortable.

Anyway, he seemed to think that he needed to convince me that I wouldn’t really need the feeding tube for long. This isn’t indicated anywhere in my medical records. He didn’t even quite know why I was using it. He just wanted to reassure me that I’d be back to eating regular food in no time.

Given everything else cool about him, I can forgive him for that. But it’s strange. It seems as if everyone around me is more uncomfortable with my tube than I am. Then they want to make me comfortable, because they assume I’m uncomfortable with it as they are. So they pull reassuring but inaccurate information out of nowhere and try to feed it to me.

The thing is, I’ve known for months that I’d need a feeding tube eventually. It seemed like nobody else wanted to know, but I knew, because of the way the gastroparesis has progressed. I’ve had it for ages, but in the past few years, it’s progressed really fast, with no warning, and no correlation to anything else I was doing in life. Right at this instant I weigh the same amount I weighed before I became unable to exercise and gained a bunch of weight. (No, this isn’t good. It’s very bad. Losing weight because you quit ice cream is one thing, losing weight because you can’t eat is another. I’ve done both. There’s a difference. Not that anyone has to lose weight, it’s just one is a sign of healthier eating and one is a sign of profoundly unhealthy eating, and they have different effects on the body.)

Anyway, it’s rare that a person can reverse gastroparesis. It’s even more rare that a person can reverse severe gastroparesis. And given the effects of the aspiration, I doubt that even getting the stomach pacemaker would make it safe for me to eat again.

And so far I’m okay with this. I mean parts of this really suck. But I came to terms with most of them awhile ago. It was during my fall hospitalization last year that I got through the stage where I cried every time I saw food on TV. I’ve developed a deep appreciation for the smell of food. And my brain has gained the ability to dream about amazing feasts that taste and smell as good as they look.

I expected to miss food once I went on full time tube feeding. But I don’t. Maybe one day I will. I can’t predict that. Emotions are weird. But right now I’m just fine with not eating. It’s a relief to not have things in my stomach. I no longer even have the desire to eat soup to give myself different flavors. Maybe the soup thing was as much as anything a reaction to being forced to eat the same three sweet flavors every day.

I guess I’ll find out a lot of things and how I feel, once I’ve been on tube feeds longer. But I’m surprised how little it bothers me. The only thing bothering me is the unrelenting pain. And the fact that people keep trying to comfort me with unrealistic things. I’d love to just eat again but right now I’m beyond even imagining doing so. And that’s not a problem so far. If it becomes one I will deal with it as it comes.

I don’t know what makes the difference. I know a lot of people who are desperate for food because of gastroparesis. But when given proper nutrition otherwise, there’s just not such a strong urge to eat the normal way. I don’t think I’m stronger than anyone else for feeling like this, it just is what it is. And telling me I’ll be eating again in no time is…. kinda annoying, however well meant. Because he doesn’t know that. Nobody knows what course this will take and I’d rather not pretend that I do.

I’m just glad the technology exists for me to stay alive, if anything. Hope for me looks totally different than the standard platitudes. It has to do with sticking around in the world, not so much with my body functioning one particular way in order to do it. Maybe that will change but for now it’s how it is.

8 notes