Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body (2011)

This is the name of the care facility that Martin spent much of his life after falling ill. Martin describes his experience at Alpha and Omega as a mixed bag, as some of his memories allude to callousness and carelessness, while other memories stand out in his mind as genuine reminders of the care he received at the home. Thus, his relationship with Alpha and Omega is complicated, a delicate combination of gratitude and dread. As Martin writes, “Each time I was left there, I felt terrified I would never be taken home again, and my anxiety would build day by day as fear took control of me” (41).

Central to Martin’s story, this term essentially refers to various means by which an individual with significant speech or language impairments can communicate. Martin describes the world of AAC as such:

the place where the mute can find a voice through everything from the most basic forms of communication, such as pointing, blinking, or staring at symbols held up by another person, to high-tech speech-generating devices and computer programs that one person uses alone (45).

Through AAC, Martin was able to once again communicate with the world around him. Martin also explains:

Most people who learn to communicate via AAC are either children who have been born with problems like cerebral palsy, autism, or a genetic disorder, or older adults who have lost their speech through illnesses such as strokes or motor neuron disease (101).

Therefore, Martin’s use of AAC is particularly interesting to experts.

Martin uses this term in two different ways to convey a significant aspect of his experience. On the one hand, Martin is stuck in the box of his own body, which he alludes to being a tomb, a “useless shell” (15). This is the box defined by confinement, a prison that he could not escape. The other main use of “the box” is the notion that people are placed into convenient categories, “fixed ideas of each other even though the truth can be far removed from what we think we see” (17). As Martin watched his life through the veil of silence, he became increasingly aware of his own box, as he explains, “it [the box] was the one marked with a single word: ‘imbecile’” (18). As his narrative unfolds and his communicative abilities progress, the box itself shifts its meaning and its impact in his life.

Though doctors did not diagnose Martin with cerebral palsy, many of the children at Alpha and Omega suffered from this condition. Furthermore, many of the AAC users Martin came into contact with also had cerebral palsy. When Dr. Diane Bryen from Temple University encourages Martin to dream despite his physical limitations, she alludes to a man named Bob Williams, whom she refers to as “one of the best bosses I ever had […] who worked in politics and had cerebral palsy […] he was living the life he dreamed of, and I’ve met many more people like him” (93). This analogy serves as an encouragement to Martin, as an apt parallel to his own condition and the possibilities that exist in spite of it. The primary symptomatic similarity between Martin’s own condition and cerebral palsy is the spasticity of the limbs, which was a commonly shared symptom with the other patients at Alpha and Omega, as well as a common bond between other AAC users.

This is the term Martin assigns to himself, the image of a boy who is invisible to those around him. This image is so strong and prevalent throughout the book that it serves as the book’s title, a snapshot of Martin’s own conception of himself for so long. Martin first refers to himself as the “ghost boy” in the opening paragraphs of the prologue, as he writes, “my mind was trapped inside a useless body, my arms and legs weren’t mine to control, and my voice was mute. I couldn’t make a sign or a sound to let anyone know I’d become aware again. I was invisible—the ghost boy” (x). Martin goes on to explain that being a ghost boy also had its share of limited privileges, such as access to other people’s private worlds, when they thought no one could hear or bear witness to their joys or pains. Martin recalls, “the unexpected side to being a ghost boy was that people inadvertently showed me their secret worlds” (97). By stark contrast, however, Martin also reveals that his life as a ghost boy meant that the people who physically and sexually abused him treated him as such as well, a body devoid of consciousness.

This word, Afrikaans for “love,” is what Joanna calls Martin. For Martin, liefie is more than a term of endearment—it’s a reminder that love was actually still possible for him, that the years he spent in isolation and solitude were now behind him, replaced by a new life with the woman he loves. As Joanna and Martin talk about the difficult nature of explaining their love to others, and the ripples that their love might cause in their social circles, Joanna refers to Martin as “my liefie.” Martin’s own conception of himself changes, as he writes, “That is my new name now: my liefie, my love” (208). From calling himself “ghost boy” to now embracing his new identity as someone else’s beloved, Martin’s self-transformation reaches a new apex. He is no longer the invisible teenager sitting alone, silently witnessing the people around him at Alpha and Omega, but the man who can speak to Joanna, the woman who will eventually become his wife. In fact, as Martin recalls his proposal on a hot air balloon, Joanna replies by saying, “Yes, my liefie […] I will be proud to be your wife” (257). Martin has shed the ghost boy to become, among many other things, Joanna’s liefie.

As Martin first comes into contact with the world of technology-based communication, he is shown the Macaw, which Martin describes as “a black box […] divided into small squares by an overlying plastic frame, and inside each one […] a symbol” (28). For Martin, the experience of seeing the Macaw for the first time unlocked a world of possibilities in his mind. He saw a glimpse of an alternate way of living, where he could actually give voice to his choices and desires. As he remembers the computer voice that came from the Macaw in his initial introduction to the device, he writes, “it [the voice] comes from the box. It’s a woman’s voice. I stare at the Macaw. Could this small black box give me a voice? I can hardly believe that anyone would think me capable of using it” (28). The Macaw therefore holds representative value for Martin, as the device served to catapult his own thinking into a life where his previous limits in communicating would become nothing but a distant memory.

This is the computer voice that Martin selects for himself. The decision to use “Perfect Paul” was intentional, an extension of Martin’s own idea of who he was. As he deepened his practical knowledge of how to work the various software programs that helped him communicate, Martin had to choose a voice that would best represent him. He could not avoid the monotone nature of the voice, but Martin’s intentionality is evident: 

I also had to choose which voice to use: just as some people pick from a list of fonts when they type, I was able to select one of a dozen voices contained in my computer software. The one I chose I called ‘Perfect Paul’ because he sounds like a good fit for me—not too high, not too gruff (85).

This computer voice began to unlock new worlds of possibility for Martin, as seen for instance in the following passage, after speaking through Perfect Paul to a group of people: “[…] people came up to congratulate me when I had finished. Then they turned to discuss what I’d said with each other, and it was strange to know they were talking about words I’d spoken. It was the first time that had ever happened” (85). Perfect Paul, therefore, becomes much more than a casual choice of setting for Martin—the voice allows him to connect with the world in a way that will forever change him.