Monday, September 09, 2002

September 9-13, 2002


It's beginning to look as though I have enough personalized address labels to last me well into the next century. I didn't buy them, of course; they come daily, unbidden, free but with a catch. I suspect that everybody who has ever donated to so much as one charity is in the same boat, and that that boat is about to sink under the weight of tiny slips of sticky paper. Donate to one charity and you'll hear from ten more, and all will want you to enjoy their lovely gift of return address.

I don't know when address labels became the charity come-on to end all charity come-ons. My parents certainly had to buy their address labels, and there are still catalogs that offer them as though they were something to spend money on. But the idea to give them away for free-ish is sure a good one, for they put the potential donor in a potentially beneficial bind. It seems wasteful -- and maybe dangerous, in this day and information age -- to throw out something useful with your name written all over it; and while it seems coercive to pay for something you didn't ask for, it also seems dishonest to use something provided by a charity without providing something in return.

And so, good-hearted sucker that I am, I usually do send a donation. But it's starting to get out of hand. I have more of these things than I can possibly use, and still they come and come and come. It's about to the point where I'll challenge any charity to send me a come-on without address labels, and I'll double my donation. Wouldn't surprise me if threats of that nature -- "Donate immediately, or we'll send you 500 address labels!" -- start cropping up in dunning letters any day now.

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SEPTEMBER 10, 2002

In honor of the new health guideliness issued by the National Academies' Institute of Medicine (see today's Hot Health Headline), I started yesterday morning with a little bit o' fitness in the form of following an early-morning exercise show. I was pretty proud of myself for getting up early, and pretty glad that the workout wasn't hard, until I realized that perhaps this was a workout show in name only; the exercises were few, and the shots of the bikini-clad female instructors shaking their anatomy at the camera were many. I'm thinking that lumpy middle-aged women trying to trim down are not the demographic for this show; I'm thinking it's guys who've been up all night drinking or studying and want to look at jiggly babes before falling into a coma.

Of course, even if the half-hour workout had been vigorous, it wouldn't have been enough to get me off the hook with the National Academies' Institute of Medicine. The new recommendations propose an hour or more a day of moderately intense physical exercise, and ... an hour? a day? are they NUTS? They're saying it will give me good cardiovascular health, but I'm pretty sure it would cause full cardiac arrest. Besides, who has an extra hour lying around, or the energy to fill it with exercise? And what counts as "moderately intense"? Probably not a walk with my son, which involves momentary bursts of speed broken by long minutes of staring at leaves or interacting meaningfully with bits of trash by the side of the road.

So forget those guidelines; if I make it out of bed for thirty minutes of televised calisthenics, I'm going to call that a darn fine fitness commitment. And tomorrow, I'm going to try the TV show that comes on half an hour later. I don't know if the workout's any more intense, but at least there's a muscular guy among the instructors.

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SEPTEMBER 12, 2002

As a mom to kids with special needs, I sometimes feel as though I'm always doing the wrong thing: If I react to everything and try to micromanage their care or their education, I feel like I'm doing too much; but if I sit back and assume that things will be okay and everybody will do their jobs, I feel neglectful and foolishly trusting. I've been having those feelings about the start of the school year -- wondering if things weren't getting done because people resented my overinvolvement, and then noticing that they still didn't get done if I stayed out of it -- and now, in a different way, I'm feeling it about a health issue.

Yesterday morning, when I went to wake my son up, I found him on the floor. I asked if he fell out of bed and he said yes, and shook off my attempts to help him up. But it soon became apparent that he couldn't get up by himself. Every effort found him flopping back down on his left side. He didn't seem to be able to move his left arm and leg, which were if possible looser than their normal loose muscle tone. At first I thought he might have injured them in the fall, but he denied any pain (although, since he doesn't feel pain very well, I couldn't be too sure). With great effort I got him up on the bed, and after about 20 minutes he was able to move the limbs again, and after about an hour any residual weakness was gone, leaving only an extra helping of silliness in his behavior and some extra slurriness in his speech.

I probably could have sent him to school, since he was ambulatory by school time. I probably could have just added this to the list of things to mention to his neurologist when he sees her next Monday. I could have taken a calm, wait-and-see view. But instead, I kept him home and took him to the doctor, who on the basis of my account scheduled an MRI and EEG for today. And there, I think, is the root of the problem: On the basis of my account. Everything I do for my son has to be based only on my observation and articulation. He can't say what's going on, and I can't trust his report if he does, because it's liable to be either fanciful or an echo of what I've said to him. I can't even entirely trust that he couldn't move his limbs because he says he didn't. He seemed scared, and I put weight on that; but the rest is guesswork. And because of my guesswork, my guy has to be sedated and put through tests. What if I'm just making too much out of nothing, turning every little thing into a crisis to manage?

That same problem -- excessive reliance on my own observation and guesswork in the face of communication disabilities -- seems to face me everywhere I turn with my kids. Doctors grill me on my observations but share precious few of their own, and what they do share seems so heavily based on their interpretations of my interpretations that it's hard to put much credit in them. School teachers and officials seem to distribute honest information on a need-to-know basis, and even when you can prove your need to know, there's always spin, even from the very best, most concerned teachers. So I'm left to create scenarios in my head, and act accordingly, without knowing if I'm solving problems or making them. It's enough to make me want to crawl under the blankets and hide ... if I thought anybody would do anything in my absence.

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SEPTEMBER 13, 2002

Three things I learned from my son's visit to the hospital for an MRI and EEG yesterday:

Never accept an afternoon appointment for a test that requires a child not to eat or drink anything. Because my guy was being sedated, he was on strict orders not to eat anything for six hours before the test. Last time he had an EEG, it was first thing in the morning, and no eat/drink was no problem. This time, the test was at 1 p.m., which meant no eating and drinking through a very long morning of "Mooom, I'm staaaaarving." Never mind that there are many mornings in which I have to force my son to eat breakfast and drink something with it. You always want what you can't have.

Never accept an appointment that falls around lunchtime. Did I say the test was at 1 p.m.? That might have been true had the entire staff of the hospital not apparently taken their lunch break from 12:30 to 1:30. The woman in admitting didn't really want to find out why nobody could find record of our appointment or the referral our pediatrician's office had faxed; she just wanted us to go away so she could go to the cafeteria with her girlfriends. And once we did get to the MRI front desk, we gave our names to the just-about-to-go-to-lunch receptionist and then saw nobody else for an hour. The anesthesiologist showed up about the same time the receptionist came back. Folks, if you have an appointment with McDonald's at 1 p.m., make your appointments with patients for 2.

Never forget that one or two competent people can make the difference. I was in a panic by the time the doctor arrived, because if this hospital couldn't even register people competently, how were they going to sedate and test my boy? But in fact, while the little things in our visit were frustrating to the extreme, the big things went fine. The actual medical professionals in charge of his care were confident and competent and ran us through the two procedures smoothly and expertly. Once they showed up, I had no complaints about the process whatsoever. Too bad we had to slog through two hours of bureaucracy to get to them.

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