Judge not, from the kingdom of the well
Leonard Stern firstname.lastname@example.org
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” wrote Susan Sontag, the American essayist, in 1978.
Sontag herself was an unhappy traveller in the kingdom of the sick, having endured cancer twice, once as a young woman and then again in middle age. The disease struck a third time, when she was 71. This time, it was a lethal blood cancer. She died nine months later, in 2004.
Almost to the end, Sontag believed that she would emerge whole and healed, as she had always done so before. “She was no more reconciled to extinction at 71 than she had been at 42,” her son, David Rieff, would later write. Then, the doctors told her the bone-marrow transplant had failed and, finally understanding, she screamed, “But this means I’m going to die!” Sontag’s son recalled: “I will never forget that scream, or think of it without wanting to cry out myself.”
The will to live, to be healthy, to return to the security of the kingdom of the well, is unspeakably powerful. In Canada, we have seen this will collectively expressed by the masses of people afflicted with multiple sclerosis, who are demanding access to a controversial and experimental treatment developed by an Italian doctor.
The theory underlying the treatment is unproven, and the evidence that it works is mainly anecdotal. Some basic research is needed before doctors start inserting balloons into people’s necks, as the treatment calls for.
(The procedure, called “liberation therapy,” is based on the idea that MS is caused by clogged veins leading from the brain).
The debate over liberation therapy has been an agonizing one, not least because the plight of MS sufferers is heartbreaking. Progressively debilitating illnesses are among the worst to have, because they don’t just rob us of life’s pleasures, they do so slowly and cruelly.
The kingdom of the sick is a terrifying place, and when you are imprisoned there, you will do anything to escape — or to help those you love escape. There is a cinematic genre of “parental anxiety” movies, where ordinary suburban parents race against the clock to find a cure for their sick child. These movies are emotionally effective because the audience identifies completely with the maniacal crusade of the parents. Who wouldn’t quit their jobs, empty their savings, lunge at any branch no matter how thin — try any treatment, even if you have to invent it yourself — to save a child?
Medical researchers are typically pleased when one of their academic papers attracts media attention. Maybe they identified a gene responsible for a terrible disease, or discovered how to slow tumours in mice. Yet it can be a depressing experience for these scientists when they find themselves deluged with calls for help from people who are dying — right now. The researchers have no cure to give them, not yet, just data from the laboratory.
From what I’ve read and seen, autism is among the most difficult childhood disorders for families to cope with. What’s most moving about stories of autism is not the child’s difficulties but the sheer helplessness of parents, and their understandable desperation to pursue any and all avenues of relief. This desperation makes families vulnerable to entrepreneurs who offer expensive and untested cures. Throughout history, people have always been willing to pay big ransoms to escape the kingdom of the sick.
No one has suggested that Dr. Paolo Zamboni, the physician who developed “liberation therapy” for MS, is a charlatan. By all accounts, he’s a serious doctor, and a good man, who was motivated to find a cure because his own wife is a sufferer. For that very reason, he may not have sufficient scientific distance to properly evaluate his own claims.
All of this is the intellectual part of my brain speaking. If I had MS, or someone close to me did, I’d likely be pleading for Zamboni’s balloon-in the-neck. The procedure is not without risks, as the skeptics note, but the risk assessment is different for someone who has the disease than it is for a detached policy-maker. That is why it was such a difficult decision for the government to put the brakes on and say that pan-Canadian clinical trials should wait until there is evidence linking blocked veins to MS.
Canadian MS patients who have the means will still travel to places like Poland where they can pay doctors to perform Zamboni’s procedure. And no one who hasn’t borne the burden of sickness should judge them for it.