Walker Henry Schneller Brown is a child of modern medical science. Born with the rare genetic condition, cardiofaciocutaneous syndrome, he is medically complex and fragile and would not have survived his first months of life had nature been left to take its course. Now, at 13 years of age, Walker functions like an 18 to 24 month old. The Boy in the Moon, written by Walker’s father, Globe and Mail journalist Ian Brown is the deeply moving account of a father’s search for his disabled son. Brown likens Walker to the man in the moon “you see the face of the man in the moon, yet you know there’s actually no man there. But if Walker is so insubstantial, why does he feel so important?” His search is one “for the value of a life … lived in the twilight and often in pain and … the cost of his life to those around him?”
Brown treats readers to an enlightened account of human potential and worth. While conveying the gravity of Walker’s life and life with him could overwhelm a reader, in the gifted hands of Brown the reader feels, but does not suffer his anguish. Through juxtaposing accounts of his despair with quirky, sometimes black humour and poignant moments between father and son, Brown lifts us and in so doing draws us deeper into his search for the value of an imperfect life. Brown’s style is exemplified in the following account: A neuroradiologist shows Brown an MRI contrasting a normal corpus callosum to Walker’s; Walker’s was just a fraction of the normal width. Brown is devastated, “Its hard to describe how quickly it crushed me … ” Continuing, the physician explains, “So that means there’s a lack of connectivity in your son’s brain.” Recognizing that … “the corpus callosum is the information highway of the brain,” Brown concludes that “… Walker’s brain subscribed to a crappy Internet service that constantly broke down and misdelivered messages …” The MRI revealed nothing about Walker that Brown had not already known, but through this offbeat account Brown ponders the profound: “Without a knowable brain, was Walker a knowable boy? If he wasn’t what was his value?”
Many of the physicians Brown encountered were confounded by Walker’s case and distanced themselves from him and their inability to offer a cure. Others like Paul Wang a developmental pediatrician and cardiofaciocutaneous syndrome researcher from Philadelphia’s Children’s Hospital, admitted the limitations of medicine, and engaged in Brown’s search for meaning. Wang delivers the devastating diagnosis of significant developmental delay and the necessity for life-long support, but doesn’t conclude the interview, instead he asks for questions. Brown queries whether he will ever be able to explain to Walker about the profound peace that the family’s remote northern vacation spot brings him [Walker]. While Wang admits that it is unlikely that Walker would respond to such an explanation, he continues, “But … it sounds like he already understands it. … The Buddhists say the way to enlightenment, to pure being, is by getting your mind out of the way. I’m not trying to be trite, but Walker already knows how to do that … in that way he’s already miles ahead of us.” Wang suggests there is something uniquely valuable about Brown’s Boy in the Moon; he provides an insight into how Walker’s mind might work, and importantly, his place among the rest of us.
Through his investigative visits to prominent genetics research laboratories and clinics, Brown learns the limits of medical genetics. In doing so, he takes to task knowledge transfer efforts that simplify genetic cause and effect relationships. “Does an oversimplified model of how a human being comes to be result in an oversimplified model of what a human being is?” While seemingly disillusioned with the science of medical genetics, Brown unexpectedly learns something more valuable that facilitates his search for meaning. “Genetic tests are a way to eliminate the imperfect, and all the pain and agony that comes with that imperfection. … Now that I know Walker, I am relieved there was no such test … because on his good days, Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human,” a sentiment he found echoed by physician, Bruce Blumberg, a geneticist on the team that identified cardiofaciocutaneous syndrome. Blumberg described the problem to Brown as: “… our unwillingness to accept that a handicapped life has real value … The trick is to give up the idea of the potential child and accept the actual child … We’re arrogant enough to believe that sentience is all that counts. A sequoia is not a sentient being, but they count. There is nothing more magnificent … It isn’t just great minds that matter, its great spirits too …”
Brown’s search for meaning takes him to medical specialists, to other families of children with cardiofaciocutaneous syndrome, and even to Jean Vanier’s L’Arche communities for adults with intellectual disabilities. But ultimately, it is Walker himself who answers his father’s questions. Walker shows him “… what I would never have seen without him — his capacity to make a passing moment memorable, and my capacity to appreciate its significance. … I have begun to simply love him as he is, because I have discovered I can; because we are who we are, weary dad and broken boy, without alteration or apology, in the here and now. The relief that comes with such a relationship still surprises me.” A relief we might all come to feel if like Brown, we try “ … to step from time to time into Walker’s world … to face my fear of the broken people who are the Other — not to fix them or even save them, but merely to be with them until I stop wanting to run away.” Reading The Boy in Moon brings us one step closer to doing so.