Earlier this week, photographs emerged of Pope Francis cradling a disfigured man in his arms. The powerful images of the Pope’s benevolent touch of blessing spread quickly around the Web. At first the caption accompanying the pictures indicated that the man was disfigured by boils. But many of us knew better as soon as we saw the pictures. More accurate reporting now confirms that the condition suffered by the man before Pope Francis is a form of neurofibromatosis or NF. It is a none too rare genetic disorder that afflicts up to 1 in 3,000 people in the U.S. to one degree or another. (The man pictured obviously has a pretty severe case—the scars of operations on his face are discernible in the photo.) NF is characterized by tumors (fibromas) that, though usually non-cancerous, nevertheless can have serious health impacts. The tumors tend to form along nerves, degrading vision, hearing, and cognitive abilities and causing chronic—and sometimes severe—pain; bones can be significantly weakened and deformed, and the skin blotched and sometimes disfigured. Because this is a genetic disorder, there is no cure, only procedures and protocols to help mitigate the consequences. NF can be fatal, but in the West, life expectancies approach just under seven years of the norm.
My six year-old nephew, who answers to “Bud,” has NF. So far his symptoms have been fairly mild, meaning that he passes for a normal-looking boy, but he copes with some significant challenges. My brother and sister-in-law—Bud’s parents—have been tireless in their efforts to get him all the help they can, including cognitive and speech therapies every day at school, medication to control seizures, frequent eye exams, other screenings, and etc. Coping with NF will be a life-time thing for their family. They are fortunate to live close to Salt Lake City and the University of Utah medical research centers where some of the most important research on NF is being conducted. (Dr. David Viskochil, for example, was on the team that found the location of the mutation that causes NF in the human genome.) They also have strong family support and the support of their ward. But there are burdens that don’t transfer easily to anyone else. My brother, Jim, writes:
When Bud was diagnosed, Andrea and I were in a depression for about a year. We were terrified by “if.” Parents watch and worry over their kids, whether they’re sick or not. Bud’s NF magnifies all of that, but it has also helped us consider the opportunities and responsibilities of parenthood. NF has motivated us to rummage through everything life has to offer and pick out the things that matter and leave behind a lot of useless crap. We weren’t far off before, but since the stakes are higher, we’re very deliberate.
The thing we worry about most is the social stuff. Disfigurements and social awkwardness affect how people make friends. Friends have a big impact on people’s happiness and the decisions they make. Our decisions sometimes have eternal consequences.
We know that Christ’s atonement and the resurrection will end the physical impacts of NF for Bud. But the spiritual impacts of NF have the potential to last forever. But today, he’s a happy kid with scabby knees, and we’re very glad it’s so.
In the modern medical environment, diseases of this sort raise some significant ethical/moral issues—ones that I had never imagined having to confront, but which are live issues now for members of my own, very Mormon family. For example, married adults who have NF in their gene pool have some serious reproductive choices to consider. Should they attempt to have children at all? Should they resort to selective invetro procedures that would result in the destruction of non-selected embryos, or should they take President Kimball’s famous counsel to “live together naturally and let the children come”?
And what about the management of chronic nerve pain caused by fibromas? Surgery of tumors growing along the nerves can be extremely risky. But the most common pain medications carry significant risks for addiction, all of which can make the use of medical marijuana—something that most of us in Mormondom, I think, find deeply problematic —begin to look more attractive. Medicinal dope is said to have lower addiction rates than, say, OxyContin, and can be grown much less expensively. But it’s still illegal in most places, including Utah. What can be said to suffering people with really no desirable options, for whom ongoing pain is a very real, debilitating thing?
I don’t have easy answers to any of these questions. My default in life is nearly always to defer to policy or protocol when decisions have to be made. I’m a play-it-safe sort of milquetoast, I’ll admit. But what about when the protocol doesn’t feel like it reaches far enough into the territory of suffering to carry us across to a place of resolution? It is easy to consider issues in the abstract and arrive at dispassionate pronouncements as to what should or should not be. But my love for a boy named Bud severely complicates that dispassionate, standoffish posture now. The image of the Pope drawing the sufferer in close is the only way I can imagine the Christ himself responding. He acquainted himself with grief personally, and will not issue judgments from a safe distance. His judgment will be rendered, I believe, not before or after, but during an embrace. There is nothing dispassionate about Christ’s evaluation of our hurts, our needs, or our possibilities. That is my faith.
And there are still no easy answers.