The Danish Girl
The Danish Girl lacks an immediacy and vibrancy, as well as a genuine sense of emotional connection.
First posted in 2011. Reposting now in response to this story.
As an aficionado of industrial design, I find the G-tube admirable. A small tunnel is opened above the belly button and leads directly into the stomach. Food passes through the tube. I dine. No fuss, no muss. In earlier years I would have found this idea horrifying. Not so much now that I need it to stay alive. Invention is the child of necessity. In this invention, common sense was more important than genius. The Egyptians first hit upon the notion of tubes for feeding people centuries ago.
I learn on this site "the ancient Egyptians used reeds and animal bladders to supply patients with a mix of wine, chicken broth and raw eggs." Indeed, "after President James Garfield was shot in 1881, he stayed alive for 79 days on a mix of beef broth and whiskey."
I am one of about 350,000 Americans with a feeding tube. You probably know one of us. Six times a day, a can of liquid food is dripped into me from a plastic bag on a pole. It takes maybe 15 minutes. I continue to write, read, or watch TV. My care-giver Millie Salmon performs the process so easily that sometimes, half an hour later, Chaz will ask me if I've eaten and I'm honesty unable to say.
The sight of me eating in this way is presumed to be offensive. At film festivals Chaz or Millie will squirrel me away in a private place. On airplanes I go into the toilet and use a syringe to feed myself. In a dispassionate analytical sense, a discreet G-tube is more subtle than someone chomping their way down on an ear of corn or sliding a doubled-up pizza wedge in sideways, but believe me, it isn't nearly as much fun.
Chaz and Millie buy raw vegetables and steam them a little and put them into a juicer. They must be liquid enough to run through the tube. Millie loves to recite long lists of the veggies in my supplementary mix, but they're all the same to me. She goes berserk at the produce counter. There's a web site online encouraging the use of "live food," and I'm sure it's good for my health. But the bottom line remains the canned stuff. I've lived on it in one version or another since the summer of 2006, and my doctor has a patient who has prospered for 30 years this way.
Of course we're not talking about the kinds of dietary substitutes you see advertised in weight loss regimes. G-tube users don't want to lose weight. We want to stay alive. These are specialized preparations, and Doc Havey has a booklet listing hundreds. Chaz has Millie carefully make a note of every time I'm fed, because oddly enough, along with my sense of taste I also seem to have lost my feelings of hunger. I go hours without a meal and don't notice it. As this stuff drips into me I feel like a goose being prepped for foie gras.
I obtain adequate protein from vegetable sources. I have blood tests from time to time which produce a print-out of two and a half pages of blood components, and it's a rare test when even a single reading falls outside the "recommended" range. That's what I mean when I say my numbers are great. A lot of fat people say their numbers are great, but that's according to them. My cholesterol has been low enough for years to reverse the buildup of plaque, just as Pritikin and Ornish claim. I'm not bragging. This is an accomplishment that has been forced upon me.
In a blog entry named Nil by Mouth, I wrote poignantly about the many ways I miss eating. I find these days I don't miss it as much. I miss the social occasion of dining, but that's another matter. I've grown out of the habit of eating. I've also outgrown the compulsion of trying to kid myself; in the hospital, reading Suttree by Cormac McCarthy, I once developed such an obsession for an ice cold carbonated Nehi Orange that I talked them into buying a can and pouring it in. It might as well have been tap water. I do perhaps once a week use a little tea, coffee, Coke or Pepsi for the caffeine. Being perverse I insist it be Lapsang Souchong tea, although it makes no difference.
Of course I have no memory of receiving my first G-tube. I've had the tube replaced four or five times since. They take you into the OR, give you a little local anesthetic, remove the old tube and guide the new one into place using X-rays. Fifteen minutes. The tube has a little flap on the top that opens and closes, and a little balloon inside that's inflated with distilled water by ingenious means and holds the tube in there.
A couple of times my tube came out. This doesn't hurt. The balloon has probably leaked. The problem is that you don't want the tunnel to grow closed. We keep some tubes of the correct diameter on hand for an emergency, and once at night Millie carefully slid one back inside and inflated the balloon. This is not recommended, but it worked just fine. What an exciting life I lead.
I received a comment from a blog reader whose mother found her G-tube chronically painful. I am not a doctor, and all I could advise is that she find a good G-man to check her out. A correctly inserted tube should cause no pain. Of course you keep the entry area clean.
Now why am I writing about this in the first place? Because so many people don't understand it. Every day my radar picks up subtle signs of people who wonder what the deal is. How do I eat and drink? What's going on? Do I actually have a tube going into my stomach? Yes, and they do too. It's in their throats.
I feel the that the less mystery we make about life and illness, the better. When people know what's going on with me, they're not nearly as freaked out as you might imagine. My body may be ready for the Texas Chainsaw Museum, but I'm here, and it's a beautiful day, and my numbers are just great.
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