The Scaffolding of the Self

When you tell people you are looking "within" to find answers about yourself, they usually assume that you are embarking along an emotional or spiritual path. But there are more concrete ways to take a look inside: various medical tests, treatments, and procedures. For those of us with chronic conditions, acquired or congenital, this opportunity is routinely available—even to some extent required.

The artwork created by Laura Ferguson in The Visible Skeleton Series melds the reality and the emotions of how seeing inside one's body can affect one's soul. Because of my personal and professional background, my impressions of her work are complex. I was born 44 years ago with a two-sided cleft of my lip and upper gumline. I have two scars on my lip up through each nostril. My face is described with that politely vague euphemism: "different." Because I was born missing several upper teeth I got a permanent dental bridge at the age of 11. I am also the mother of three sons, and my youngest, who is now 10 years old, was born with a one-sided cleft of the lip, his gumline and palate also affected.

Professionally, I have been a clinical social worker since 1988 on a large multi-disciplinary medical surgical team at a pediatric hospital. My job is to help children and families through the process of discovery and treatment of all types of cranofacial anomalies. These diagnoses may be simple and affect only part of the face, or they may have influenced the growth and development of the entire skull and other parts of the body. I meet with patients and families over long periods of time. I may first meet with parents when the mother is pregnant if a problem has been detected on ultrasound. I sometimes have the opportunity to work with children I meet in infancy until they are young adults. Occasionally I work with other adults who have children with problems like their own.

Like Laura Ferguson, I sketch my self here as much for your benefit as for my own. Like Ferguson, I seek to understand and represent what my exterior and interior lives have to do with each other. I do this because I know that your image of your insides affects intimately how you make decisions, including decisions about es have the opportunity to work with children I meet in infancy until they are young adults. Occasionally I work with other adults who have children with problems like their own.

Like Laura Ferguson, I sketch my self here as much for your benefit as for my own. Like Ferguson, I seek to understand and represent what my exterior and interior lives have to do with each other. I do this because I know that your image of your insides affects intimately how you make decisions, including decisions about surgery. It is therefore very important that the impact of such images—"raw" X-rays and refined self-portraits like Ferguson's—and their interpretations not be discounted. Reflective reactions to Ferguson's work are the first indication I have seen that those who do not share our experiences may be able to gain some understanding of how such an experience of interior-exterior "difference" feels; but they will be able to understand it only if they are willing to take the time to emotionally experience this art—to take it in, so to speak.

The fact is that routine radiological encounters can lead to very important impressions on the part of the patient and family, even when the clinicians see nothing impressive. I know that because here is how many of...