The Full Weight and Darkness
The full weight and darkness of a bad diagnosis doesn't hit you right away.
You'd think that you'd have this soap opera style crisis moment -- a flood of tears in the doctor's office. Instead, it's like a terrific rushing roaring noise, a freight train in your head. It fills your brain with one word or phrase: "cancer" "MS" "ataxia" "ALS." The word blinks on and off, like a loud neon sign. You're trying to work around it. To see past the word's enormous, spreading, infectious, blob-like bulk.
To do this, you're attempting to form reasonable sentences. Things like "what kind of time frame are we talking about" or "what are the treatment options." The doctor is giving you answers, and you're trying, you really are, to follow what he is saying but this noise, this incessant rushing noise, the beating of this one word over and over in your head, it's drumming out your ability to hear clearly or think clearly or get your own words out in any kind of coherent, rational way,goddammit.
In the middle of it, you notice that you're feeling really, really sorry for the doctor. What a shitty day this is turning out to be for him. He woke up this morning, maybe banged his wife, maybe argued with his kids about dumping their bikes in the driveway (again), or leaving the lights on all night. He's got troubles with his staff -- you could tell from the receptionist's snotty attitude when she checked you in. He's got a really full schedule today, and he's overbooked by three patients. (And tonight he has to eat at his wife's brother's house, and his wife's brother can't cook.) So he wasn't looking forward to the best day of his life, mind you, but still it was going to be a typical day, a normal day, and now this. He walked down the hall to pick up the CAT scan results. He slid the report out of the manila jacket, not seeing what was around the corner, not suspecting a thing, and then wham! there it is, and now he's got to call you into his office, a real office with a desk not an examination table. Man, what a lousy day this is turning out to be for him.
So you're keeping it together, really, because we're all grownups here, and there is no reason to make him feel any worse about it. Besides, if you make him uncomfortable, maybe he won't like you anymore. At this point, he's all you've got, so you're not taking any chances.
You're listening to him go over treatment options. This is a relief to him -- you can see it as his jawline relaxes. You didn't break down, and now he's back on familiar turf. He's using words like "therapeutic agents" and "inhibiting cellular reproduction," and with every phrase he's putting more distance between himself and what he knows to be the truth, and he's feeling more comfortable. Diseases, he is trained to deal with; patients, not so much. He expects that all these technical words are making you feel better, too. Why not? Why wouldn't what makes him OK make you OK too? The doctor is grateful that all this structured language is creating a frame like a ladder, that you can use to look down on your disease from a great distance up, like he does.
Only thing is, this word pounding in your head, it doesn't really allow for that.
Then you get home. The news starts spreading. Some people you call and tell, because you know they'll be offended if they're not among the first to hear, and you don't need that on top of everything else. Some people, they call you, and you tell them. Lots of them hear it from someone else. Some of those people -- you never hear from them again. They vanish, as if the diagnosis was a magic colander that separates out the friends from the hangers-on. It surprises you, which ones take off, and which ones don't. Some that disappear, you'd have bet money that they'd stay. Some, you think maybe they stay only because they get off on the close contact with drama, and this great opportunity to gossip. They leech you. They are disappointed on days you are feeling better.
For a while, all this talking, all this notoriety, keeps the full weight and darkness of a bad diagnosis from sinking in. You're so busy telling about it that you're not really living with it yet. It doesn't help that half the people you talk to essentially deny it. They tell you of a friend who was diagnosed with a serious tumor but in the end it was only a harmless fatty cyst. They tell you of their own medical crisis -- the kidney stone for years ago, and how much it hurt, and how lucky you are not to be in pain like that. They tell you there's a 1-800 number where you can buy these crystals (or vitamins or miracle bracelets) and then they get mad at you a week later when the learn you didn't order anything. They make you casseroles or banana bread and they wait for you to thank them, because somehow the food was supposed to compensate.
In a day or two, or three, or thirty, the full weight and darkness of being ill -- really, really sick -- sinks in. You realize that it means you'll never, ever get better. No point in continuing to think "I'm sure I'll get my energy back once this medical crap is over" because there's not going to BE an "over." Not for you.
Here's the thing you need to know:
There are only two acceptable plotlines. You've seen this on TV since you began to wear big-kid clothes. Get sick; get worse; get REALLY worse; and then either get all the way better or die.
You aren't going to get any better, and you'll soon find out that if you don't have the good grace to die within a reasonable period of time, your audience will get bored. They will get sick of all the mini-crises that lead neither to dramatic cure nor to tearful tragedy. Essentially they will have to push out your drama and go on with their lives.
But rest easy. You'll get their attention back for the key scene. The one that you know from the first half-hour will come only after the last scheduled commercial break. The one where all their waiting for something to happen finally pays off. They might even buy a new dark suit for it.
You doctor won't be there, though.
He has more news to deliver.