RankFamily Archives: July 2004
Monday, July 12, 2004
I've been hosed!! Literally. On the whole, it was one of the most pleasant hospitalizations I've ever endured. The feeding tube protrudes about 18 inches from right under the bottom of my sternum (actually, right below my xiphoid process, for you anatomy buffs). If I don't eat any solid food, 8 8-oz. cans of "food" (Jevity 1 Cal, to be precise) are supposed to provide all the nutrition this growing boy needs. But I usually eat at least two small meals a day, so right now I'm at about 4 to six cans per day. I also drink high nutrition shakes, so I'm getting plenty of vittles in one form or another. The tube is just under a centimeter in (external) diameter, and it has a plastic head at the free end fitted with a stopper. A can takes about two minutes to get down, and a feeding begins with drawing any air out of my stomach with the syringe, and concludes with flushing the tube with about 50 ml. of water. All the kids have seen it, and thier reactions were nonchalant. I'm self-conscious about it, though, and I don't want the neighborhood kids gawking at me. In fact, I didn't want that even before the tube, but you get my meaning. So the pressure is off, and mealtime anxiety is a thing of the past. If I eat, I only eat what I can easily swallow, and since I only eat for pleasure now, what I can easily swallow can just be dessert, if I choose. But those aren't the foods I crave. Biscuits, muffins, giant hamburgers, fajitas, meatsicles, pizza...things like that I miss. But remember, I'll get to eat them again someday. And accepting this tube in my gut pushes that ball way down field.
The doctor and his physician's assistant were very impressed with my attitude. Again, I suspect that my anticlimactic approach to the procedure was not the usual manner in which people handle it. I could see how losing one of your basic surival capabilities could be disconcerting. But it sure beats the alternative, which could be anything from aspiration pneumonia to choking to death. And you don't think of it as a milepost in your downhill slide to death. Shucks, I'd be upset, too, if that's how I viewed it. But, as I reported last post, I prefer to look at it as a tool, like a wheelchair. The tube and the chair are no more necessary evils than a bench press was when I was lifting weights and working out. They're all just tools I've used to get the most out of life. I may be in a wheelchair for the rest of my life, but I don't expect to be. I don't expect to die by lightning, but 43 people did last year in the US. What does that have to do with anything? Anyway, even if I never loose the chair, the tube, and whatever other defenses I adopt as time goes on, I will have lived better (and probably longer) because of them. I'm already reaping the benefits of the tube. I think I'm becoming a bona fide "glass half full" person.
Which reminds me to toot my own horn a bit. I know that I'm lucky and my disease is slow course. I know that the spectrum of human temperment is ignorant of ALS, and vice versa. I know that my outlook will probably change, and so may my attitude. But so far, I look at the way I've handled my diagnosis, specifically how I've let it affect my family and extended family, and I'm fairly proud of the way things have gone down. In fact, if I were dealing with a family member with ALS, I'd want him or her to behave just like I am. I have bad days and periods of regret, to be sure. But I'm seeing myself as someone who is rolling with the punches pretty well. I have areas to work on, but I am not seeing any of the "devastation" that I know accompanies the disease for many people. Obstacle avoidance? Directed distraction? Hard to say. Here comes bitterness...I think I'll start a band. Feeling useless...I'll write some short fiction. Don't lament the things you can't do anymore, find out how to derive sufficient gratification from the things you still can do. And that gratification is there—it always was—you just have to be "tuned" to pick it up.
It's all part of a transformation. Well-intentioned people always say, "...well, you're still the same person on the inside". Hell no, I'm not. If I were, I think I'd be in much worse shape than I am. I see the outside of me changing into a modality that I've always loathed...weak, dependent, needy. Without complementary changes on the inside, I'd despise the Joe Rank that I'm becoming on the outside. I've had to radically rework my definitions of "strong", "brave", and many other concepts. And I reckon that emotional, intellectual, and spiritual elbow grease is paying dividends now. I'm in the game, I'm moving forward, and I'm (largely) at peace with my situation. I'm patiently waiting for science to pull my cookies out of the fire (any time now, guys!), but I'm not so preoccupied with a cure that I forget to be grateful for the life I have. I'm not the person I used to be on the inside or the outside. Some of that's good, some bad. But I can say I'm much more appreciative of the growth I've experienced on the inside than I am worried about the deterioration I've suffered on the outside.
Follow the research, switch off your TV, and keep the faith.
Posted by joe @ 09:58 PM CST