In 2008, when Radovan Karadzic, the notorious war criminal, was arrested in downtown Belgrade after many years of hiding successfully, I helped the NY Times research his methods of concealment. The secret of his invisibility was simple: he had become a medical quack.
Radovan Karadzic, mastermind of the Srebrenica slaughter, had become Dragan “David” Dabic, an alternative medicine guru. He associated with the lethally stricken, wrote articles about about herbs and meditation in specialized magazines, and even dared to give well attended lectures in popular places all over Serbia.
In private life before the war, Karadzic had been a psychiatrist, so he had an eerie affinity for those who suffered mental or lethal illness. Cancer wards, obscure associations of the humiliated and insulted were the places he haunted. I visited many of his favorite spots, where I talked to his patients and followers, editors and friends.
These people were not his accomplices. He duped them with great ease, for these people were often dying, and it is part of human condition to trust life and hope for a cure.
Salvatore Iaconesi is my friend and sometime collaborator, a Roman hacker engineer and artist. Recently he went out public with the private crisis of his brain cancer. He hacked the illegible format of the hospital documents and put the scans online. He then invited the online community to help him in finding a cure. I applauded his bravery.
Salvatore wanted to be proactive rather than to seen as passive and pitied, as the ill so often are seen in a society that dreads mortality, and seems to fear a mortal contagion from cancer. Italy’s very long-lived population has many opportunities for slow-building maladies like cancer. Salvatore wanted to handle his own body, his self, politically, medically and privately. Hundreds of volunteer opinions poured onto his website. From mainstream prominent doctors to alternative, even forbidden treatments.
Thirty years ago the famous Italian anti-psychiatrist Basaglia, made a similar attempt to change the stigma of the traditional approach to the illness in Italy. Even a law, still in force, was passed with Basaglia’ s name. In Basaglia’s day ( stricken by brian cancer himself), there was no Internet, no easy brain scans, no hackers activists, and brain cancer was even more fatal than it is today. Here is now Salvatore thirty years later, seeking a happier end.
When my bridesmaid Xeni Jardin learned she had breast cancer in December 2011, the data given to her in LA were just like Salvatore’ s in Italy, in a specialized medical format she could not open. Being one of the most prominent bloggers with a little help from her hackers pals she opened her files only to find out that her opaque locked files were those of a man — some guy with a tumor and also a ghostly, scanned penis! It was as tragicomical as babies swapped in a maternity ward.
Xeni told the world on her Twitter stream:
@Xeni: I call a hacker pal. “That, Xeni, is a dick.” Look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS. 3/3
@Xeni: I don’t even know how I should feel. Today was a day of other new hard news, a Big Day in the fight. And—I have some other guy’s dickscan.
@Xeni: Called the clinic, they’re not open. Now calling an attorney to make sure I handle it appropriately. I don’t want anyone else’s data!
@Xeni: Any legal experts out there care to share advice on what I do, now that I’ve realized I’m in possession of someone else’s data?
Most likely some other patient had Xeni’ s scan! We never heard what that gentleman had to say for himself. Perhaps he wasn’t on the Internet.
Salvatore with his activist approach to The Cure is trying to create a new situations: after numerous interviews in the major mainstream italian press, he has become a celebrity patient. There is an initiative in the parliament to make the lessons of his case into new Italian law: open source data for all patients.
I find myself unnerved by this seeming epidemic of cancer that surrounds me. Intimates of mine seem to be getting it like a flu. These people aren’t chain-smoking, drinking effluent or pursuing unhealthy lifestyles. They’re young and old, often in apparently perfect health.
I spoke to Salvatore, I spoke to Xeni, I also spoke to Magda Bandera, another friend of mine, an activist and journalist from Spain who went public with her cancer. They chose honesty, they valued openness, they took the responsibility for their dark state. And they have survived, to the extent that any of us mortals survive.
One can choose otherwise, like, for instance, Steve Jobs. The worst is to be kept in the obscure ignorance, where your body becomes the object, the victim, the target of an obscure menace. Disease may take your life but superstition and obscure protocols is where you lose your dignity, strength and social power.
When cancer knocks on our body, we become refugees within our own selves. Forces stronger then we can control seem to guide our being towards death. But there is a lucid moment when we realize that these forces can be understood: you cannot FIGHT cancer, win wars on cancer, battle cancer as a mystical otherness or just alien part of your body, because then you become part of that evil scheme. Cancers are part of US, aspects of our metabolism gone astray, and parts of the human body, an entity that should be treated with love and care. One can’t fight cancer with panic, fear, silence and hatred, any more than one makes peace during war by doubling the demonized resentment. Wisdom, science, politics of free information and activism is the path to survival: the internet is a new presence in the ancient house of pain.