The public life

The Guardian asked me to write a column about the transparent life and my writing about my prostate cancer. Here it is:

* * *

In the company of nudists, no one is naked and there is nowhere to hide. In this space and on my blog, I have been arguing that with the internet, we are entering an age of publicness when we need to live, do business and govern in the open. So I was left with little choice when I learned I had prostate cancer. I had to blog it.

So far, no regrets. Oh, one troll tweeted that in my blog post, I had merely used my cancer to plug my book (which, by the way, is entitled What Would Google Do?). But my Twitter friends beat him up on my behalf. I got emails pushing nutty cures on me – yes, there is cancer spam – but Gmail’s filters killed them for me. And I have had to be mindful not to bring my family into my glass house; my transparency shouldn’t necessarily be theirs.

But it has all been good. On my blog, on others’, in Twitter, and in email, I received an instant and lasting shower of good wishes and some good advice about my choice of surgery. My brothers in malignancy have shared their experiences with generous candour. I even inspired a few of them to blog their own stories. They joined me in urging men to have the PSA blood test that revealed my cancer.

After my blog post sharing the diagnosis was republished last week in the Guardian, I heard from Emma Halls, chairman of the UK Prostate Cancer Research Foundation, who said the disease affects almost as many men as breast cancer does women, but it gets less funding and little attention.

That stands to reason. We men don’t like talking about penises – certainly not when they malfunction. Discussing one’s incontinence and impotence post-surgery – both temporary, we hope – well, it doesn’t get much more transparent than that. 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.

So I think I’ve become about as transparent as a man can. I am living the public life. There are dangers here. I risk becoming merely a medical and emotional exhibitionist. And I know I have violated my own privacy to an extreme.

But I think we need to shift the discussion in this era of openness from the dangers to privacy to the benefits of publicness. It’s not privacy that concerns me, but control. I must have the right and means to keep my disease secret if I choose.

By revealing my cancer, I realise benefits, and so can society: if one man’s story motivates just one more who has the disease to get tested and discover it, then it is worth the price of embarrassment. If many people who have a condition can now share information about their lifestyles and experience, then perhaps the sum of their data can add up to new medical knowledge. I predict a day when to keep such information private will be seen by society as being selfish.

Collectively, we will use the internet’s ability to gather, share and analyse what we know to build greater value than we could on our own. That is the principle of transparency that I want companies and governments to heed: that openness in their information and actions must become their default, that holding secrets only breeds mistrust and robs them and us of the value that comes from sharing.

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. Such open intelligence also allows an unlimited number of watchdogs on those in power, helping to bring about a new, collaborative – and ultimately, I hope, more effective and efficient – system of journalism.

So for me, transparency is a necessary ethic of the age. That is why I used my medium, my blog, to share my prostate cancer. If I believe in the value of publicness, how could I not?

  • Hi Jeff
    I wanted to add my best wishes for your recovery and also thank you for being so open about your illness. I have a relative going through this who finds it completely impossible to talk about. Reading your experience has given me a little more insight into what he might be going through.
    Good luck to you and yours, Sarah.

  • I admire your courage, Jeff! You invest a lot to propagate human values. Thank you and all the best!

  • Best wishes for a speedy recovery. And thank you for sharing.

  • Jeff,

    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.

  • Del Norvin

    Best wishes. We’re all praying that you’ll recover and be in fine fettle in no time at all.

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  • Hi Jeff
    Welcome to the prostate blogging club.
    I’ve been doing mine since April 1 and after writing about 25,000 words on my own “adventure” I now spend a lot of time finding and trying to translate the medico-speak laden writings of the medical profession.
    Keep it going.
    Best wishes
    Jim Tucker
    Wellington, NZ

  • Hey jeff
    How do I get an RSS feed from this.

  • Communication, (which in my opinion is the heart of blogging) is not sharing information’s, but how we LIVE the information.
    That is what a journalist does and is expected to do.
    I do not read what you write to KNOW, I read what you write because I like the WAY you write it, and the feeling of the story you are telling me.

    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.

  • Jeff,

    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.

  • First and foremost, I pray for a speedy recovery and full remission.

    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.

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  • Franz Müller

    Hi Jeff,

    wish you all the best!

    Franz from Germany

  • The most shocking attribute of our society is I was pulled from Twitter to read your blog post (and wish you well), and on your blog was pelted with Google ads advertising cures, surgeons and hospitals with GREAT PROSTATE SURGERY FUN! kind of ads.

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

    Hope you are well. Nance

  • First, Jeff, I wish you a speedy recovery. Best of luck.

    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.

    • I”m saying that there is a collective good and that people will want to contribute to it. When you see a crime, do you not feel some internal compulsion to report it, even if you’d rather not? I’m talking about an ethic, a moral of openness, not a mob demand.

  • Paula Moore

    Jeff, wishing you a swift and complete recovery. A close family member went the radiation route @Stanford. My family and I are grateful for his successful treatment completed four years ago.

    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–

  • I admire your courage in choosing transparency to raise awareness of this “hidden” male cancer. I hope that you will keep informing all of us for a very long time to come. Very best wishes from South Africa, Fred

  • It’s too bad for your sake that transparency about cancer in public doesn’t kill cancer or necessarily prolong your life.

    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.

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