French, Jacqueline A. MD
Dr. French is professor of neurology at the University of Pennsylvania, where she is an assistant dean for clinical trials and director of the Penn Epilepsy Center.
Epileptic • By David B. • 368 Pages • Pantheon 2005
It is not often that one comes across a 300-page graphic novel, let alone one that focuses on the impact of epilepsy on a family. This autobiographical novel, translated in 2005 from the original French version, L'Ascension du Haut Mal, takes the reader on a spellbinding and personal journey of one young man, David B., whose life changes when his older brother, Jean-Christophe, develops epilepsy at age 11.
The story, which takes place in post-war France, begins with both characters as young boys, and ends with David as a young adult, and Jean-Christophe trapped in an endless childhood by his devastating illness. The story focuses on David's relationship with Jean-Christophe, and how it changes as his brother's illness becomes more persistent and devastating.
Familiar fraternal squabbles turn into something much more heartbreaking as the author realizes that he is continuing to grow and mature, while his brother regresses. The brother he once looked up to is now an embarrassment to him, especially as the other children they used to play with now taunt him.
At one point he notes, “I can no longer distinguish my brother's illness as being separate from him.” David also begins to wonder if Jean-Christophe has chosen to succumb to his disease in an attempt to hold onto childhood, while David, in sharp contrast, is asked to grow up too fast, to help carry the burden of Jean-Christophe's illlness.
Although the epilepsy is described only through the eyes of a family member, one gets a fairly in-depth picture of the severity of Jean-Christophe's condition, literally in graphic terms. Sequential pages of illustration show Jean-Christophe falling over, with a vacant expression, drooling and shaking. The post-ictal period is depicted. We also observe the public's response to seizures. Looming, garish faces peer in on the family's anguish. Seizures wax and wane, often occurring several times a day. These occasional improvements are a mixed blessing in David's eyes, since they inject just enough hope to maintain his parents' endless trek from one healer to another.
THE SEARCH FOR HEALING
Figure. The book may...Image Tools
The effect on David and his family is not pretty. His parents become obsessed with finding a cure, at first seeking out physicians who are portrayed as poorly equipped either to find an effective treatment for the seizures, or to deal with the emotional issues of the family. They seek solutions outside of the medical profession, resorting to strange and unpalatable macrobiotic diets, which, along with a harsh lifestyle, are forced on both Jean-Christophe and his siblings. Those who promote alternative therapies are depicted as deluded believers in their own hype. The reader is taken on a tour of the cult philosophies of France in the 1960s and 1970s, including such strange groups and philosophies as Rosicrucians, alchemy, Swedenbergian spiritualism, magnetism, and exorcism. Even as a child, David is wise enough to realize the truth: His parents cannot bear the possibility that a path not explored would have been “the answer.” The endless searching, whatever the effect on the family, is ultimately less painful than the thought of that possibility.
Unfortunately, the people they meet in this other realm do not always act in the best interest of their followers, and the family is finally left no better off and utterly demoralized. In their zealous attempts to help their son, the parents cannot deal with the needs of their other two children. David and his sister become emotionally scarred, and in their own way are equally as afflicted as their epileptic brother.
There are no happy endings here. Eventually, David chooses art as an outlet for his pain, but the pain does not subside. He tells us that all his relationships are colored by his experiences with his brother. Some women cannot deal with his complicated feelings about his brother, and abandon him. Others worry about whether the epilepsy might be inherited by any offspring. He admits that many of his relationships are fueled by a desire to find an older brother. And, after many years of blaming Jean-Christophe for giving up, abandoning the fight against his disease, he finally comes to terms with the truth when in a dream Jean-Christophe tells him that as a result of his medication, he has gone through life half asleep, unable to fight.
A BITTER PILL
Families and physicians alike will recognize the emotional rollercoaster that this family endures. The progressive deterioration of Jean-Christophe's body until he is almost unrecognizable, bloated from medication side effects, and scarred from falls, may also be familiar.
This episode in the family's saga will certainly resonate: In 1996, near the end of the story, a drug “from America” finally stops the seizures. This most welcome miracle quickly turns into a nightmare, as the family realizes that Jean-Christophe is becoming paranoid and violent. The drug must be stopped, and the seizures return. This very frank look at what may be a very common experience among families with chronically ill children may be a difficult read for those who are facing this long road themselves. It may be considered a cautionary tale, but this particularly bitter pill should be prescribed with great caution.
The book may act as an eye-opener for the physicians who care for these patients and their families. As depicted by the author, physicians may find it all too easy to focus on the illness of their patients, without looking behind the curtain to see what's really happening in their lives.
We can only hope, as healers, that this novel depicts the extreme case, and not the typical one.