The Yale Journal for Humanities in Medicine

Comprehending Tyler

Patricia O'Hara
patricia.ohara@fandm.edu

Having found a spot for the car some distance from the entrance to the park where we are to meet our group, we walk past clusters of people to find my husband’s sister Lisa, her husband Tim, and the boys. I see Tim sitting on a bench, filling in a form, a pile of folded tee-shirts to his side. “Here, take one of these,” he says, tossing it, white cotton with turquoise lettering on the back:

Summer Stroll for Epilepsy

June 2000

Located on the front left side appears the phrase Tyler’s Team printed over a small flame.  My ten-year old nephew Tyler—the occasion of our gathering for this fund-raiser—is over with other members of the extended family, more aunts and uncles and cousins and grandparents. Among the group are a few women, unfamiliar to me, but whom Tyler appears to know very well.

But it’s hard to know what Tyler knows. Having lived for seven years with an intractable generalized seizure disorder, Tyler manifests a constellation of cognitive deficits. He might say your name or take you by the hand to show you a thing that interests him, but he can’t perform the speech acts necessary to have a conversation with you.  He will beam smiles at you, but they appear, to a stranger, unnatural, as if invisible fingers were pulling his lips to the sides. His gait is sometimes that of a person whose body hasn’t quite located its center of gravity. With all these misfiring of his central nervous system, Tyler nonetheless communicates with the people around him. It’s just hard to say how.

In addition to coming together to raise money for the underfunded Epilepsy Foundation of Eastern Pennsylvania, we are here to mark a leave-taking. Tyler, his toddler brother, and his parents will be leaving Philadelphia to move to Connecticut. Not a vast geographical relocation, but a move attendant with considerable changes. Tim will take up the position of headmaster at a private school in Fairfield County. Lisa will give up a position practicing labor law. 

 After the fundraiser we meet at Lisa and Tim’s recently-sold house for a party. Tim takes a few minutes to address us all. He thanks each of the women who I learn are Tyler’s educators and assistants: his special ed teachers, the speech therapist, the teaching assistant who has worked one-on-one with Tyler, every school day, for three years. While thanking this last woman, Tim loses his composure.  My mother-in-law sits across from me at the picnic table in the company of her quiet sadness that her grandson will be moving farther out of reach.

But the mood lightens. Tyler’s Team has, Tim announces, won first prize for raising the most money, and we applaud ourselves. Tyler’s illness narrows the future but hopefulness broadens it.  This move gives them much to anticipate.

Two weeks later, their house emptied of its furnishings and a loaded mover’s van in their driveway, Lisa and Tim would be poised to head north when Tyler would start seizing so intensely and unremittingly that, in a high-risk effort to prevent more thoroughgoing ravage to his already hurt brain, a neurological team at Children’s Hospital of Philadelphia turns off the electricity traveling wildly through his neurotransmitters, thereby inducing him into a coma. 

Most people know somebody--or somebody who knows somebody--with epilepsy. Except for those who are in the medical profession, most people’s knowledge is of the more-easily managed form of the disorder.  I am a literature professor, not a health care professional, and until my nephew developed epilepsy, I knew little about the disease. I didn't know that over twenty different kinds of epileptic seizures have been identified, or that an estimated 2.3 million Americans experience a recurrence of one or more types of seizures, or that in seventy percent of sufferers, the cause of epilepsy is indeterminate. A disorder of the central nervous system, epilepsy is defined as the recurrence of seizures that take place when the brain’s neurons misfire and lead to a surge of uncontrolled electrical discharges.  But I am not a neurologist and therefore cannot grasp in any palpable way what that means. So I try to picture it in images.  Is a seizure like a flaming Fourth of July sparkler, spitting points of light in random directions? Or chain lightning on a hot summer’s night?

Eighty-five percent of epileptics can, according to the Centers for Disease Control, “achieve good control of their seizures and lead successful lives.” Phrased the other way, fifteen percent of those with seizure disorder will never achieve good control of their seizures nor will they lead what is conventionally considered successful lives. Tyler falls into the less sanguine percentile.

Tyler was successfully brought out of his coma, that long summer three years ago, and his family is now well established in their Connecticut community. And he makes some advances.  In reading and music he possesses “splinter skills”—abilities that far exceed his skills in the delayed areas of development. His facility with computer software programs is amazing. He assembles puzzles on sight with few, if any, missteps. His progress, however, can be wavering and uncertain, and for the professionals who treat and teach him, comprehending Tyler is as much a challenge as ever, an ongoing process of skills assessment and program revision.

Still, some things are not so hard to comprehend at all. To watch Tyler dance and sing is to know that he possesses a musician’s soul. To see him look up in satisfaction when he puts the final piece of a puzzle in place is to know that he takes pride in accomplishment. To see his eyes light up with joy or fill with tears is to know that his emotional life--like everyone else's --is rich and complex. 

While vacationing together at Disney World last spring, we all went to a Winnie the Pooh character breakfast. At such events, employees in cumbersome costumes circulate through the dining room, signing the autograph books that parents purchase at Disney’s ubiquitous gift shops.

When Eeyore came to our table, Tyler hugged him, unwilling to let go. It was a hug given with the fullness of love—true and unmediated. Eeyore rubbed Tyler’s head, nuzzled him, and held him in a lumbering embrace. Eeyore of the buttoned on tail. The patched-together pessimist. The morose donkey with the tear-drop eyes.

I know it’s not the real Eeyore who Tyler met at the Magic Kingdom, but a man or woman inside a hot donkey costume.  And I know that even the real Eeyore isn’t real but just a fictional character in children's books and movies. But witnessing the exchange of tenderness between the medically-disabled child and the donkey-suited stranger, I came to understand—as Tyler’s parents and doctors and teachers have always understood—the power of amazing grace.

Published: March 28, 2004