Re: “I believe this openness at the source will become a critical element in a new, linked ecosystem of news, as institutions and individuals will be expected to provide maximal information on the web.”

This is merely a form of totalitarianism, and you don’t any more legitimately push totalitarianism on people just because you are sick than you can if you were well. You cannot shield yourself from criticism of this really bad ideology just by claiming that anyone criticizing it would be trolling an ill man. It’s wrong.

Individuals are not required to be part of a collectivized hive mind forced to reveal information about themselves in an online police state.

I’d also like to encourage men to have regular PSA tests (regardless of age). Demand them if necessary. Baseline test results — if cancer is detected down the road can illuminate the nature of the cancer i.e. speed of growth and other characteristics that can make a course of treatment that much more effective.

Thank you for your candor on this subject. You’ll undoubtedly help many men in the process.
Best wishes–
Paula

However, I could use some clarification on this:

First, you write: “It’s not privacy that concerns me, but control. I must have the right and means to keep my disease secret if I choose.”

But later, you say that “I predict a day when to keep such information private will be seen by society as being selfish.”

So are you saying want people to have the right to keep an illness secret if they want, yet you want a society in which people would feel pressured to give up that right? Personally, I would NEVER want to see such a society. If being totally public and transparent about your illness works for you, great. But I won’t want a society where such a personal decision is basically already made for you and you would be seen as “selfish” to go against it. Isn’t this akin to pinning a scarlet letter on someone? And for what? Not talking about their illness in public? Hope I never see that day.

Come for the community, be picked off by the ones that make it profitable.

Hope you are well. Nance

wish you all the best!

Franz from Germany

Second, Brian makes a great point. Transparency exists in many communications, a blog or other Google searchable material is only one such communication. I have posted on my own blog about “My Google Reality”. It was prompted by a search I did on the word “pharmaclout”.
I thought maybe I had coined it, but I found a web page were it had already been used. Then I realized that “pharmaclout” may have been used dozens or even hundreds of times in media that is not Google searchable. I had succumbed to the idea that if it isn’t found on the net, it does not exist.

Third, consider this: Just as some transparency (as in your example regarding your family members) may not work for you. Other things like disclosing diseases may not work for someone whose job prospects could be torpedoed or health care could be imperiled. Not only that, but I believe it was Samuel Johnson who wrote “Every man has thoughts that would shame the devil”. Even those of us who are quite “transparent” are still hiding a lot, and it is often a good thing that we do.

Thanks for the interesting post.

I finally got around to picking up What Would Google Do and I’m about a third of the way through it so far. I’m enjoying it, but a single criticism keeps popping up in my head, and I see it again here in this Guardian article. So if you’ll forgive a guy for arguing with you about something as sensitive as your prostate cancer, here goes:

The long tail that you describe so well in your book is a one-way phenomenon. Recipients of the aggregated effects of millions of small bloggers/merchants/journalists/etc. feel the impact as if they were a competitor with the combined force rivaling (or even surpassing) the more traditional competitors. BUT, participants in the long-tail can have vastly different experiences. Many a blogger has written a ” Sucks!” post and received no response from the company or from fellow bloggers, and affected exactly zero change. An entrepreneur who takes your advice and bases his business on abundance rather than scarcity may very well find out that no one cares about his business and will ignore him even if he/she is free and highly available to customers. Hard to quantify traits like credibility, visibility, celebrity and dumb luck all factor into what goes “viral” and what sits out there dormant.

You’ll forgive the goulish segue, but the same is true of your decision to be transparent about your cancer. As I’m sure you know, there are thousands of people who have blogged openly about their cancer or similar ailment. Most do not receive “an instant and lasting shower of good wishes and some good advice about my choice of surgery . . . [and] shared experiences with generous candour.” Most receive similar sentiments from a very small population (regular blog readers, family, friends) and perhaps an occasional hit or two from Google. Your “pre-existing condition” of noteriety/celebrity is what’s driving this outpouring (the chairman of the UK Prostate Cancer Research Foundation? Wow…).

My point is this: for most people, the choice to be transparent might involve a series of phone calls and e-mails, rather than a public blog post. Sure, this method doesn’t put another drop in the vast Google-indexed ocean, but that hardly means that this choice is “selfish,” as you suggest above. Celebrities who go public about illnesses/ailments do the world a lot of good – they raise awareness; they associate a familiar face to what might otherwise be a cold and impersonal condition. You are to be commended what what you’re doing, but if we’re being honest here, we need to recognize that this phenomenon predates the Internet by several decades…

Again, best of luck in your treatment.

How can I, if you didn’t actually say anything about it?
“In the company of nudists, no one is naked and there is nowhere to hide.”
That means that in a blog where you talk about yourself through your opinions you would feel “fake” if you didn’t talk about the most important part of you.

“It’s one matter for me to disclose my business relationships, politics, religion, and stock ownership on my blog’s “about” page; it’s another to do this.”
You couldn’t just NOT talk about it, because you know that is something “men don’t like talking about penises “while you know that it is illogical not to.
If you think why not, then it must be.

Your posts are good because one can feel that they are true and “lived”.
This is what real journalism should be.
People do not want to read about a “story” they want to read about “people” who make the story.
People want to be part of the “news” and in order to do so the good journalist has to write more about feelings than events.
Communication is mostly sharing the joy of living and the fear of death we all have inside.

My best wishes to you for a speedy recovery. My father got prostate cancer when I was 16. They gave him five years. I’m 30 now and I gave him a hug last week.

I do hope that your transparent approach can help change how we look at this disease and will motivate people to end it.

I just started your book, FYI. It’s good, but just know that Dell isn’t as nice a company as they come across sometimes. I love Lionel, but the company needs to be composed of 30k Lionels. Very few people here in Austin are excited about working there.