Title: Beyond My Control: One Man's Struggle with Epilepsy, Seizure Surgery and Beyond
Author: Stuart Ross McCallum
New York 2008, 95 pages paperback
Synopsis: Stuart McCallum wrote this book to tell the story about his life battling epilepsy. It starts on a cold day in October of 2003, in Melbourne, Australia, the day of his brain surgery. But before describing the surgery and its challenging aftermath, the story reverts to his upbringing in the far northeast of England. At age seventeen, he began to have his seizure auras: déjà vu sensations, nausea, and headaches. In retrospect, since he describes himself as being "dazed," some of these were probably full complex partial seizures. He saw many doctors, obtaining few answers. Some of the answers he did receive were wrong: for example, the one that declared him to be having psychological episodes and in need of placement in a sanitarium for his mental health. He was put on mind-numbing doses of antidepressant medication. His father rescued him, and Stuart returned to his family home in Australia. Once home, he had his first full convulsion and his diagnostic mystery was solved. Stuart had epilepsy.
The rest of the story tells how Stuart struggled to live his life with epilepsy, with many successes, but also with significant problems. He opened a stained glass and building supply shop in Melbourne. He came under the care of leading epilepsy specialists in Melbourne, who began altering his medication regimen with partial success. But all was not easy, for someone who would work on a ladder installing windows, and might suddenly awake on the ground. He did well enough that his business prospered and he was able to successfully propose marriage to his wife, Lisa, eventually leading to two beautiful children.
After some years, the character of his seizures began to change and Stuart would become abusive or even violent in the aftermath of a seizure. He would recall none of this later and would be profusely apologetic. Then his explosive outbursts also started occurring between seizures. He would throw a returned [product at a customer, or speak rudely to those in his shop. In one post-seizure outburst, he stomped about his own store smashing his glass panels. Together with a downturn in the industry, Stuart's weekly seizures and antisocial behaviors led to deterioration of his business. It was clear to Mr. McCallum that his life could not continue on this trajectory.
Stuart's physicians at the Austin Hospital in Melbourne recognized that medications, even the ones that were achieving temporary control, were not going to be long-term answers to Stuart's uncontrolled seizures. They began to consider whether he was a candidate for brain surgery to cure his epilepsy. As extreme as this may sound at first, brain surgery is a standard and relatively safe therapy for epilepsy, provided that medications fail, that the seizures begin in a well-localized region of brain, and that the region can be safely removed. A key step in the surgical evaluation is video-EEG monitoring to record the brain's electrical (EEG) pattern at the start of a seizure. Mr. McCallum describes his video-EEG monitoring experiences in some detail in the book, and also in an article in the journal
Epilepsy: Insights & Strategies. The many other steps for surgical evaluation were completed, including, in his case, seizure-tracking electrodes implanted directly into his brain. The findings were that he did seem to be a good candidate to have surgery.
A temporal lobectomy—removal of a piece of brain from the temporal lobe on the side of his brain—was performed in October of 2003. Stuart takes us through confusing hallucinations he had during his hospitalization and his postoperative pain. But he was soon headache- and seizure-free. His sister gave him a Dictaphone to record his recovery progress. It notes his insomnia and a cleaning obsession that came over him during his recovery. He had an insatiable desire to talk and would telephone old friends overseas and regale them with never-ending chatter. He became very focused on John Lennon's music. Few people have these particular reactions after epilepsy surgery, but everybody's reaction is different. Stuart's reaction to surgery and the cessation of his seizures was obsession and mood swings. Over time, these improved and he became himself again, but a Stuart McCallum without seizures.
Commentary: To learn facts about epilepsy and epilepsy treatments, people should read medical sources (like epilepsy.com) and talk to doctors. To learn about epilepsy itself and the effect that it has on people's lives, it is necessary to talk to people with epilepsy or read books written by them. Beyond My Control is one fine example of the latter. Mr. McCallum puts the bewilderment, frustration, fear and anger surrounding having seizures into language that everyone can understand. When he says things like "I felt like a walking timebomb; always thinking, when is it going to explode?" he makes epilepsy real and not an abstract medical disorder. For people with epilepsy and their families, reading the book may help to decrease the sense of isolation brought on by a chronic medical illness. And, Mr. McCallum makes it abundantly clear how critical the support of friends and family can be. But epilepsy affects many people differently. Some with epilepsy will observe that they do not become violent after a seizure, do not always have an aura to warn of an oncoming seizure, or do not have seizures like the ones described in the book. Some who take the journey through epilepsy surgery sadly will have ongoing seizures or complications of surgery. Therefore, the book is not a compendium of what someone with epilepsy should expect for themselves. It is one person's story, an example of how epilepsy can be faced with courage. The tale is told with sensitivity, humor and honesty. It is a strongly recommended read for people with epilepsy and those who care about them.
Reviewed by Robert S. Fisher, M.D., Ph.D.
Director, Stanford Epilepsy Center
June 26, 2009