Online Medical Information for Patients: Where Quality Beats Quantity

Trivia for the day: it is this, the Rod of Asclepius, that is historically the symbol for medicine. The caduceus, which has wings and two snakes, has been mistakenly used for over 100 years in the U.S.

I have been pretty lucky as a freelance writer. There have been very few times that I haven’t been paid for my work. In one of those cases, I was approached by a medical magazine in Canada — it’s always nice when they call you — about doing a guest column for medical professionals about online medical information. The editor and I discussed all of the details: pay, deadlines, bylines, residual rights, and so forth. One thing I forgot to bring up was a kill fee.

You guessed it. When I finished the column and submitted it, nothing happened. After a few months, I was informed that the magazine had been sold and the new editor wasn’t interested in my column. Since it was a relatively small amount of money, the magazine was in another country, and I had no kill fee in the contract, I never collected a dime from the column. It’s been sitting on my hard drive for the last nine years or so (I save everything), so I decided to post it on my blog.

I hope you enjoy the article. If you want another story about my lymphoma experience, take a look at Rodeos, beer, and cancer.

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I found an odd lump on my chest. Neither my family doctor nor the dermatologist he called in had ever seen anything like it. They took a biopsy, and called a few days later to tell me I had an appointment with an oncologist. It was a frightening time, but I assumed it would be a melanoma, and they would simply cut it out and send me on my way. I was wrong.

The oncologist informed me that I had a dermal large b-cell lymphoma—it had manifested in my skin rather than my lymph system. He took a bone marrow biopsy, and recommended immediate monoclonal antibody and chemotherapy treatments. I left his office reeling from the news. I walked out with a little informational pamphlet about lymphoma, a fistful of prescriptions, about a half-liter of barium sulfate for the next morning’s C-T scan, and a bloodstream full of Demerol.

I’m not afraid of anything I understand, but I knew nothing about lymphoma, Rituximab, or CHOP. I hadn’t checked into a hospital since I was seven years old. I was downright terrified. My immediate mission: find out everything there is to know about this cancer in my system and its treatment methods.

I knew I’d lose the hair on my head, but what about body hair? Would I be able to keep food down? Would I lose a third of my body weight, as a friend did when he went through chemo in the 70s? Were there new, more-effective anti-nausea drugs or would I have to use medicinal marijuana, as he did? With my ravaged immune system, how could I protect myself against infection when I worked on my ranch?

The pamphlet was only mildly useful. It was just too generalized. So I turned to my usual resource for first-line research: the Internet. I found a whole lot of highly technical information that was probably wonderful for an oncologist, but useless to me. I couldn’t understand it. I also found thousands of Web pages written by patients and their friends and families. Nice, but of questionable accuracy. There just wasn’t much to be found that met my criteria: it had to be authoritative, understandable, and comprehensive.

Had I been suffering from a common disease with a well-understood and long-unchanged course of treatment, things might have been different. Dermal lymphomas, however, are rare, and monoclonal antibodies are still becoming established as mainstream treatments. There is a lot of conflicting information online, and it’s very difficult for a layman to determine which information is truly authoritative.

Medical patients simply can’t get all of their information from friends, phone-in radio shows, and newspaper columns. We can’t rely on what some unknown author keyed in to their personal Web site—even if there is an “MD” after their name. Our lives are on the line here.

Medical journals are written for medical professionals, and that is as it should be. The information is carefully vetted and peer-reviewed. There is a crying need for trained medical professionals to produce a body of peer-reviewed medical information written for laymen, with a meaningful stamp of approval on the individual articles.

It would not be necessary for all of this information to reside on a central Web server, nor for a single administrator to oversee it. All that would be required is a central directory or search engine for information carrying the aforementioned stamp of approval.

I ended up getting the information I wanted. I used up a lot of my chemo nurse’s time (she’s not only an RN, she’s a cancer survivor), and asked my oncologist many questions. I read articles online and in magazines. I got data from cancer support networks. Eventually—that’s the key word—I learned about my disease and its treatment. But that was no substitute for what this scared and lonely patient needed the afternoon of my diagnosis: fast, clear, information I knew I could count on.

Small Business and the Marketplace Fairness Act

If you listen to the scary emails being sent by massive online businesses like eBay, I should be panicking right now. They say that the “Marketplace Fairness Act of 2013” will hurt small businesses like mine. In actuality, I agree with the Washington Post editorial that says this bill is an excellent move, and I’m happy to explain why.

First, what is it? The Marketplace Fairness Act, in simple terms, says that all businesses that make $1 million or more per year in interstate sales must collect sales taxes on those sales, and that states have to simplify their sales tax rules and procedures to make that easier for the businesses collecting the taxes.

I think this is a good idea because it puts everyone on an even footing. If you’re living in a state with an 8% sales tax, why should some out-of-state business get an 8% price advantage over the local businesses? With this bill, everyone would have to live by the same rules.

It also eliminates the loopholes that some of the huge companies are using. Currently, a business that has a physical presence in your state must collect sales tax there. So big chains incorporate their online business separately from the brick & mortar business — or set one up as a subsidiary of the other — and the rule doesn’t apply to them. With the Marketplace Fairness Act, the business’ physical presence (or lack thereof) in your state is irrelevant. With the exception of the individuals and small businesses that eBay and Etsy were created to support, everyone collects the taxes.

Columnists like Jeff Jacoby rail against the Act, but they either misunderstand or intentionally misrepresent what’s going on. In the linked editorial, Jacoby claims that small businesses will have an onerous burden placed upon them in sales tax collection, but he’s ignoring factors like:

1. “Real” small businesses (those that do less than $1 million per year in interstate commerce) are exempted.
2. Even the bigger “small” businesses (those doing less than $10 million per year interstate) are unlikely to have developed their own software for this. The major shopping cart players, including eBay, PayPal, Google, and their ilk, take care of sales tax for their customers.
3. One of the requirements in the mandatory simplification of tax collection by the states is that each state have a single uniform tax base and a single point of contact within the state for sales tax collection. There aren’t going to be 9600 different jurisdictions to keep track of, as Jacoby claims, but 50.

Technically, you could say I don’t have a dog in this fight. My bookstore is in Montana, a state that doesn’t have sales tax. I still support the bill, however, because it bothers me to see the government effectively giving massive tax breaks to giant businesses like Amazon. I’m not just blindly following the position of the American Booksellers Association and all of the others who support sales tax fairness, though. I feel it’s the right thing to do.

When I travel, I like to stop in small local retail businesses wherever I go. It provides a local flavor that the chains don’t. When I go into a Barnes & Noble in Denver, it looks just like the ones in Orlando or San Francisco or Dallas. The independent bookstores, however, are dramatically different in all of those places, and I don’t like seeing them being killed off because the Federal government gives online booksellers a subsidy to compete with the established local businesses.

Do I have a problem with competition? Heavens, no. If a local store has a level playing field and can’t survive, that’s the way things work. But when their competition is offered an unfair advantage, I do have a problem with it. The Marketplace Fairness Act eliminates that unfair advantage.

The History of the Kilt

Time to pull another fun one from the archives! This article first appeared in issue #81 (November 2011) of Renaissance magazine. None of the photos here appeared in the magazine — they own their pictures.

There is no more recognizable symbol of Scotland than a man in a kilt. If you wish to celebrate your Scottish heritage at the next Renaissance festival you attend, a kilt is the obvious choice, and we all know the ladies love a man in a kilt!

If you look up one of the many suppliers of Celtic garb, you’ll find a dazzling array of tartans, and a length of accessories as long as your arm. Kilt hose, gillies, flashers, sgian dubh, sporran, kilt pin, belt, clan buckle, dirk–and that’s just what goes below your waist. If you have the cash, a modern kilt is easy to find, comfortable to wear, and easy to accessorize.

The problem is that the entire ensemble is an invention of the 19th century. If you wish to dress true to period, then you’ll need to dig a bit deeper into the history of the garment and the fabric it’s made from.

THE TARTAN

A tartan pattern, known as a “plaid” in the United States, consists of alternating colors at right angles to each other, creating anything from simple checkered patterns to complex collections of colored bands.

Tartans have actually been around at least as long as the Celts, and many centuries before Scotland existed as a nation. A proto-Celtic population known as the Hallstatt culture produced textiles similar to modern tartans. The earliest-known tartan in Britain dates back to the third century. Known as the “Falkirk tartan,” it was found in a pot full of Roman coins near the Antonine Wall in what is now Stirlingshire, Scotland.

The Falkirk tartan was a basic checkered design using natural (un-dyed) dark and light wool in an alternating pattern. It is less complex than modern tartans, but it shows that the tartan was, indeed, worn well before the Renaissance began.

Not much is known about how the tartan evolved or how it was worn through most of the early history of Scotland. The earliest known picture of Scottish men wearing tartan fabrics is a woodcut from the early fifteenth century.

Modern tartan cloth is made much the same way today as it was made centuries ago. The wool is spun and pre-dyed. Generally speaking, when the loom is set up, the same pattern of colored thread (known as the “sett”) is used for the warp and the weft. The threads for the warp are arranged and stretched, and the weft follows the same pattern. Where threads of the same color cross, a solid color results. Where different colors cross, a diagonal pattern of a blended color emerges.

In some tartans, the sett is simply repeated across the width and length of the fabric: so many threads of the first color, followed by so many of the second color, and so forth. In most tartans, though, alternating setts are reversed so that the tartan looks the same when reversed or rotated.

Master weavers developed their signature tartan using natural dyes found in their area, and the tartans came to identify specific islands or regions. By looking at a tartan, you could tell where it was made. Men made no effort, though, to dress like their kinsmen. Early paintings show that not only did groups of Scots not all wear the same tartan, but each Scotsman was likely to wear more than one tartan at a time, depending on his taste.

It was not until the Victorian era in the mid-nineteenth century that tartan registries were established and the clans chose tartans that were unique to their members. Each clan today is likely to have at least two registered tartans. The “modern” tartan uses synthetic dyes with bright colors, and the “ancient” tartan either uses authentic natural dyes or synthetics with muted colors to simulate aging. Some clans will also have a “hunting” tartan with more earthy or subdued colors, and occasionally a “dress” tartan, where one of the prominent colors in the sett is replaced with white.

What does all of this mean to you? It means that matching your highland garb to a particular era does not require selecting a tartan to match a clan, or even a region. Choose what you like, as long as you go with an “ancient” tartan pattern. Avoid the bright colors, especially bright green, which was difficult to produce. Natural colors (gray, brown, beige) were very common, as were yellow, red, purple, and blue.

THE BIRTH OF THE KILT

This picture of me from the Robert the Bruce museum wearing the Bruce’s crown and mail has nothing whatsoever to do with this article. I included it because I like it.

If you have seen the Mel Gibson movie, “Braveheart,” about Scottish patriot William Wallace, please forget everything you saw. The common garb of Scottish and Irish men in the late 11th century would have been a saffron-dyed knee-length tunic known as a léine. In colder weather, they would add a cloak known as a brat. There were no kilts at the Battle of Stirling in 1297.

The brat was a cumbersome heavy woolen garment. It may have been plain wool or tartan, and some men used fur or leather. Typically worn over the shoulders, it could be pinned in front or draped loose.

At some point, probably in the 1500s, someone came up with the idea of draping the brat around the waist and fastening it with a belt, and thus was born the “breacan an feile” or belted plaid, typically known today as a great kilt. The first written reference to the great kilt comes from 1594. By that time, the Scots had a distinctive look, no longer the same as the Irish.

Looms of the day typically produced fabric about 25 to 30 inches wide. To make a belted plaid, they would start with a piece of fabric about nine yards long. The actual unit of measurement then was called a “Scottish ell,” and was about 37 inches—the length of a man’s arm. They would cut the fabric in half and stitch it together to form a piece 4-5 feet wide and roughly 4-1/2 ells long.

To wear a belted plaid, men would lay their belt on the ground or on a bed and spread the fabric over it. They then gathered the center of the garment into pleats. The word “kilt” is actually derived from the old Norse word “kjalta,” which means pleat or fold. These distinctive pleats down the back of the kilt are what differentiate it from earlier garments. Once enough fabric had been pleated, the remainder could be wrapped over the front and the belt fastened.

Upon standing up, the upper part of the kilt would fall over the belt, creating double thickness of fabric and leaving the léine uncovered on the upper body. In warm weather, the highlander would leave it this way, or gather the ends of the upper fabric and tuck it into the belt to create two big pockets. In cooler weather, he would pull the upper fabric up over one shoulder and pin it. In rainy weather, it could be pulled all the way up as a hood.

If you are dressing for the latter part of the Renaissance era, the belted plaid is the most appropriate form of kilt to wear. As I mentioned above, there’s no need to worry about the particular tartan. Choose one that you like, or be a true Scotsman and find a cheap one on sale!

THE MODERN KILT

Your humble author in a Prince Charlie with a Clan Gunn weathered modern kilt, toasting the haggis at a Rabbie Burns supper in 2008.

A short kilt, known in Gaelic as the feilidh beag (meaning “little wrap”), was effectively the bottom half of a great kilt. It was most likely developed sometime in the late seventeenth century. The name was Anglicized to “philabeg,” an inexpensive and lightweight alternative to a great kilt. They were still untailored, with the fabric loosely gathered, pleated, or folded in back.

In 1746, following the Jacobite uprisings, the British Parliament enacted the Dress Act, which forbid the wearing of kilts or tartans, along with other aspects of Highland culture. When the Act was repealed in 1782, the tartan kilt became the de facto official outfit of Scotland.

The kilt as we know it today came about shortly thereafter. The Scottish Tartan Society has a kilt from 1792 that is tailored, with the pleats stitched down. If you are attending a fantasy faire or a ren faire that doesn’t worry much about historic accuracy, a philabeg is probably your cheapest alternative, as it only requires half the cloth of a great kilt and uses no tailoring. A good modern kilt is substantially more expensive.

The term “short kilt” does not refer to the length when worn. Whether you have a great kilt, philabeg, or modern kilt, it should come to the middle of the knee. Above-the-knee tartan skirts are for women only.

ACCOUTREMENTS

Highlanders in the Renaissance were poor people. Few could afford shoes, and those that had them wore them only in cold weather. Traditional shoes or boots for a Highlander were thin leather with no heels, and may have either leather or cloth uppers laced together. The sporran of the era was a simple pouch strung around the waist.

The question most frequently asked when I’m wearing a kilt is what I have on under it. Much is made of the “correct” way to dress under your kilt, but there is no mandated answer. It’s like asking a modern man, boxers or briefs? On a warm day, you may wish to wear as little as possible. On a cold day, you’d want a bit more for warmth. Scottish athletes almost always wear undergarments to avoid exposing themselves.

My advice is to wear what you’re comfortable with, and if the ladies ask what’s under your kilt, ask them what’s under their dress!

My son, Douglas, is on the left showing off a modern American kilt (also known as a “MUG” or Mens Unbifurcated Garment) with a stylin’ Clan Gunn t-shirt. That beauty in the middle is my wife, Kathy. This article is about men’s clothing, so I won’t describe her traditional outfit. And finally, that’s me on the right sporting a modern kilt (modern Gunn tartan), ghillie shirt, and obviously 19th century wristwatch.

Finding buried treasure — that you buried!

It’s a rather surreal experience. Here I am, going through a bunch of my writing archives looking for a book proposal template, and I stumble upon an old proposal from 2005. I remember coming up with the book idea. I remember doing the research and sending out proposals. What I didn’t remember was actually writing a few chapters of the book to include in those proposals.

Sometimes, looking at my old work is exciting. I found a 20-year-old magazine with one of my articles in it, read the article, and thought, “Hey, I’m good!” Other times, it’s the opposite. I was looking for some clips on a particular topic and came across one of my old articles. I actually cringed. I couldn’t believe someone actually paid me for that and published it.

Today’s experience is different. The proposal I found was for a book about the mathematical side of poker. As I read through these sample chapters, I honestly don’t remember writing them. But I like them! I have two other projects in the works right now (the Myths & Legends of Tea and another Who Pooped in the Park? book that I’m not talking about yet), but I do believe I’m going to come back to this idea.

The advantage of being a packrat

Go ahead. Be a packrat. Packrats are adorable!

Everywhere you turn for advice these days, people are telling you not to be a packrat. Simplify your life! Throw away your old junk! If you haven’t used it in a year, get rid of it!

It’s different when you’re an author. You never know when that old idea that went nowhere might be exactly what an editor is looking for. Having a book or article turned down repeatedly can sap your enthusiasm. That’s what happened to me with this book on the mathematics of poker. After having it shot down a few times, I gave up and filed it. Now that I go back through my notes (you do keep notes on your old projects, right?) I feel my enthusiasm returning. I’m going to finish up what I’m working on while this percolates in the back of my head and then blast it back out in a different format.

This isn’t the first time this has happened to me. Once upon a time, I wrote an opinion piece about computer hacking. I didn’t find a market for it and this was before the days of blogs, so I stuck the article on my website. Lo and behold, it became the most popular page on the site, by a pretty hefty margin. The more emails I got about it, the more I thought I should turn it into a book about hacking and phreaking. I put quite a bit of time into the book, but I had a full time job and I ended up shelving it for a while.

Technology inexorably marches onward. While the partially-completed book sat untouched, it became swiftly more obsolete. When I came back to it, I just couldn’t bring myself to start my research over from scratch. But re-reading it showed me that the history section was still relevant and still interesting. When a computer hacking magazine called Blacklisted! 411 contacted me and asked to reprint the essay from my website, I made them a deal: I would turn that history section into two feature articles. If they paid their going rate for those two features, they could have reprint rights on the essay for free. They jumped at the offer, and I ended up making $1,125 from that “useless” manuscript.

For anyone that’s interested, you can read one of those feature articles, The Origins of Phreaking, on my website in either HTML or PDF format.

The moral of the story

It’s not enough just to keep your old notes, articles, essays, manuscripts, poems, proposals, and ponderings. You need to go back and look at them every now and then. Think about whether any of it has suddenly become relevant. Perhaps that magazine you just wrote an article for might be interested in one of your old unsold pieces. Perhaps that editor who sent the “we don’t want this but keep trying” rejection might like one of your old ideas better.

Don’t just archive your old stuff on a CD, either. You will never get around to loading that CD back up and looking at it. You also might lose it. The dog might eat it. Keep those files on your hard drive where searches will pull them up. You might be surprised at how you end up finding one.

Censorship Talk at the Forum for Provocative Issues

Book burning in Nazi Germany. Click on image for description at “The History Place.”

The First Amendment to the U.S. Constitution seems very straightforward when it says “Congress shall make no law … abridging the freedom of speech, or of the press.” That means in this country, we won’t be subjected to things like the book burnings of Hitler’s Germany or the death sentence imposed on Salman Rushdie (author of The Satanic Verses) in a fatwa by the Ayatollah Khomeini. Censorship and book banning is not so straightforward, however.

On June 11, I will be talking at the Red Lodge, Montana Forum for Provocative Issues about the ethics, morality, legality, and reality of book banning in the United States. I’ve been compiling real-world examples, and I’d love to get additional examples and feedback from my readers about the subject as I prepare for this talk. The subjects I’ll be covering include:

• What types of books the Federal Government can actually ban
• What other government entities can and cannot ban books
• Book burning in the United States (more recently than you think!)
• Books that have been banned or challenged in Montana
• How book banning affects authors and publishers
• The process of banning a book
• Banned Book Week and the ALA/ABA fight for the freedom to read

I will bring backup materials for attendees to peruse after the talk, including lists of banned and challenged books.