Born ten weeks premature, Jesse Cooper suffered a brain hemorrhage, and survived – with cerebral palsy. In 2005, at age seventeen, he died.

During the course of my twenty-year career as a pediatric and neonatal intensive care nurse, I cared for thousands of babies and children, many who had cerebral palsy. I provided the best care possible – heeded their cries, exercised their rigid limbs, and carefully fed them pureed foods so they wouldn’t choke. But it was impossible for me to know what it was like to be a mother of a child with cerebral palsy, or any of the ill children I cared for.

But actress Marianne Leone knows. In her memoir, Jesse, Leone writes with stark prose, sharing with us her “mask of red rage,” and her “fuck-you double slather of red lipstick,” as she, and her actor-husband Chris Cooper, work tirelessly to navigate the hairpin turns of their lives caring for a child with cerebral palsy (185, 189). She lures us along in their trek, from Jesse’s endless days in the neonatal intensive care unit, through their frustrating odyssey in search of physical, occupational, and speech therapists who would treat Jesse with dignity, and their fevered commitment to convince the school system within their community to integrate Jesse into classes with what Leone calls “able-bodied” students. Leone reminds us that “Jessie wasn’t a CP kid first, and a kid second (57).”

Jesse is more than a mere telling of the speed bumps Leone and her family encountered along the way. It is a story of perseverance, and idiosyncratic family coping mechanisms in the face of Sisyphean challenges. It hurtles the reader into a better awareness of what it means to be a quadriplegic, and non-verbal – which does not equate with being an “idiot (31).” Leone’s memoir is a must-read for families, health care professionals, teachers – all of us – who are on a quest to do what is right for our children, whether or not they are disabled.

Jesse speaks to the human condition – in this case, internal conflict – and the human being in us: Even long after the death of her son, Leone admits she’d rather “stay inside and be alone (248).” But she also knows, in order to still feel connected with her son, she must reach out and talk to other mothers with “babies like Jesse (248).”

Jesse himself tugs at the human being in us. His humor, non-judgmental approach to others, and endurance – he was an honor roll student, and windsurfed and wrote poetry – impels us to take a long, hard look at ourselves and ask, “Who am I? Am I aware of what is happening around me? How do I treat others? How do I want to be treated? What meaningful contributions am I making to others? What if I were a quadriplegic and non-verbal?”

In an autobiography Jesse wrote in sixth grade, he says:

“The most important lesson I can teach/is to see people for what they can do/ and not for what they cannot do (82).”

How do individuals who are unable to walk refer to themselves on the page? Why do some choose handicapped while others choose disabled, or even crippled?

At age nineteen, Joshua Prager suffered a broken neck when a truck driver rammed into the mini bus he was riding in while  traveling through Jerusalem. He spent four years in a wheelchair. Now, he walks with the aide of a cane. Prager has written a memoir, Half-Life, in which he tells of his tragic yet hopeful story of self-awareness, identity, and the loss of physical potency.

Throughout the book, Prager employs a varied lexicon when referring to himself post-crash:

1) “I took comfort … in the thought that my body spent fewer days disabled than not (106).

2) “I was a hemiplegic and wanted to be whole again (156).”

3) “Let the doctor glimpse what it is like to be nineteen and paralyzed (146).”

4) “I wished to sit there forever and never get up and never remind Sheri that I was disabled (172-173).”

5) “If I was finally at peace with my disability, I had fallen for a girl who wasn’t (183).”

6) “And then I became a quadriplegic (189).”

7) “I … allowed myself mention of … a divided body (280).”

Why does Prager not settle on a single descriptor for his changed body? Depending on the circumstance, his preferred label (labeling is really what this post is about) changes. For instance, in number 2 above, he chooses “hemiplegic” when he talks about his need to be “whole again.” The contrast of hemi- and whole in the same sentence is stark. When we see the prefix “hemi,” we might think of the word hemisphere: half of the brain, or half of the earth. We can visualize the fissure dividing the brain in half, or the equator separating the northern and southern hemispheres. When we see the word “whole,” we might envision something intact, like a circle.

In example 3, Prager says “paralyzed” in the context of the scene in which his doctor tells him he cannot leave the hospital to attend a baseball game. Understandably, Prager is angry. “Paralyzed” might evoke the image of an individual in a wheelchair, but it also evokes emotional and spiritual paralysis. Prager looked forward to the baseball game, but the doctor’s decision slashes any promise of “openness and freedom” for his patient (145).

In example 4, Prager employs the word “quadriplegic” when he’s wondering how his family will get him home from Jerusalem after the crash. Quadriplegia affects the entire body below the neck. In a sense, the entire body is weighted down, and the burden is on others to help care for the individual. Such is the case when Prager’s family must figure out how to get him home, physically and financially. The burden is on them.

But why does Prager choose “divided body” in the last example, rather than hemiplegia? Just prior to this sentence, Prager is listening to the solipsistic soliloquy of the truck driver who ran into the mini-bus: financial troubles, loss of land, loss of work, etc. When the driver finally asks Prager about his hospitalization, Prager refers to his body as “divided.” Though his intention is not to forgive the driver, but to hear him apologize, perhaps Prager is now wondering if it was a good idea after all to meet the man who nearly killed him. Is Prager “divided” about what he actually wants? Does he really want to be sitting, face-to-face, with this self-absorbed man?

I saved examples 1, 4, and 5 for last for a reason: acceptance. Even though the girl Prager fell for does not accept his “disability,” as he claims to, and he wants to hide that he is “disabled” from Sheri, the overall tone of the three sentences come across as softer than the others listed. The C, P, and G in hemiplegic, the Q, D, G, and C in quadriplegic, and the P, Z, and D in paralyzed are all abrupt, harsh consonants. And, though the L in these words creates a liquid-like, more flexible sound, because they end in harsh consonants, there’s lingering turbulence, as there are turbulent moments in Prager’s post-accident life. The D and B in “disabled” are abrupt sounds, the T in “disability” is an angry sound, and the S is a hissing sound. But the emphatic sound of the two D’s that bookend “disabled” give the impression of certainty – certainty that Prager has accepted his changed body. And the Y at the end of “disability” resonates with a long E, creating an airy quality to the word, which carries the liquid-like sound of the L a long way.

Or maybe Prager inserts “disabled” and “disability” throughout the narrative because eventually walks again, albeit with a cane – his wheelchair days are temporary. Perhaps if he called himself “crippled,” the caustic C, the in your face tone would sound more permanent. It’s worth noting that Prager refers to himself as “crippled” one time throughout the narrative. He becomes angry and says, “A cripple rebuffed at the Jewish equivalent of the Lourdes” while he’s praying at the Western Wall for his left hand to heal. He had reason to be angry – a bird had just shit on his head.

Prager, Joshua. Half-Life. Byliner. 2014. Amazon Digital Services.