Author’s Note on The Demon Duke
(This text appears in the back of The Demon Duke, but I’m sharing it on my site, as well, in order to further information and understanding about Tourette Syndrome and to express my sincere gratitude for everyone who’s purchased The Demon Duke.)
Authors often talk of the book of their heart, the book they just had to write. This is the book of my love. Namely, my love for my son, who, like Damon Blackbourne of The Demon Duke, has Tourette Syndrome (also called Tourette’s or simply TS). It was he who inspired this duke.
The Tourette Association of America defines the syndrome thusly:
“Tourette Syndrome is a neurodevelopmental disorder that affects children, adolescents and adults. The condition is characterized by sudden, involuntary movements and/or sounds called tics. Tics typically emerge between the ages of 5-7 years, most often with a motor tic of the head and neck region. They tend to increase in frequency and severity between the ages of 8-12 years. Most people with TS show noticeable improvement in late adolescence, with some becoming tic-free. A minority of people with TS continues to have persistent, severe tics in adulthood.
Tics can range from mild to severe and, in some cases, can be self-injurious and debilitating. Tics regularly change in type, frequency, and severity—sometimes for reasons unknown and sometimes in response to specific internal and external factors, including stress, anxiety, excitement, fatigue, and illness. Individuals with Tourette often have co-occurring conditions, most commonly Obsessive-Compulsive Disorder (OCD), Attention Deficit-Hyperactivity Disorder (ADHD), anxiety, and learning difficulties.”
Anybody who’s “different” knows the challenges of being so, especially when one’s differences manifest themselves in a visible manner. My son often insists he’s never getting married, because nobody will ever want him. While much of that is (hopefully) typical teen self-doubt, it breaks my heart. The first time he said it, I decided right then and there I’d write a book in which the hero has TS but finds true love—and acceptance.
I patterned this story somewhat after Beauty and the Beast not because I think people with TS are beastly in any way, but because (1) it’s my favorite fairy tale, and (2) many in the past (and present) have viewed people with Tourette Syndrome negatively.
Tourette’s is still not well understood, but at least we view it today through the lens of science. Medical advances allow us to understand it as a neurological disorder, not a psychological disturbance, much less the work of dark forces. In earlier centuries, when science was less advanced, people attributed many medical maladies to sinister causes. The first known mention of a person with tics—a priest—came in the Malleus Maleficarum, that infamous handbook for witch hunting published in 1486. It attributed the priest’s symptoms to possession by a demon. Not an auspicious beginning for anybody suffering from these unwanted behaviors.
Though people have speculated 18th century notables writer Samuel Johnson and composer Amadeus Mozart had Tourette’s, the first medically documented case was that of the Marquise de Dampierre, a French noblewoman whose tics physician Jean Marc Gaspard Itard chronicled in 1825. It was this case Georges Gilles de la Tourette used in 1885 as his primary example of what he called a “maladie des tics.” Tourette went on to study others who exhibited similar symptoms. From him, the syndrome took its name.
Today in the United States, one out of every 160 children (0.6%) between the ages of 5-17 has TS. Males are affected three to four more times than females. Though coprolalia, or “the involuntary utterance of obscene and socially unacceptable words and phrases,” is a common stereotype of people with Tourette Syndrome, less than 10% of those diagnosed with TS exhibit this symptom.
I am not a medical doctor. This book is a work of fiction and expresses my own research and experiences of someone with Tourette Syndrome. I have endeavored to accurately reflect how people in the Regency might have reacted to someone with tics, as well as to give a realistic portrayal of how the syndrome affects a person. However, as with many neurological disorders, TS can and does present differently in different people.
My hope in writing this book was to raise awareness of and compassion for an oft-misunderstood syndrome, one that continues to perplex the medical community and the general public today.
As of March 2018, contributions have totaled $1800 – and I owe it all to you, readers.
Thank you for giving The Demon Duke a chance, thank you for being able to show my love and support for my son in this way, and thank you to all who’ve written to me about their own stories of TS.
1 Tourette’s syndrome: from demonic possession and psychoanalysis to the discovery of genes. Francisco M.B. Germiniani; Anna Paula P. Miranda; Peter Ferenczy; Renato P. Munhoz; Hélio A.G. Teive. July 2012. (http://dx.doi.org/10.1590/S0004-282X2012000700014)
2 Famous People with Neurological Disorders. http://bandofartists.org/about-tourettes/famous-people-with-neurological-disorders/
3 Kushner, Howard I. A Cursing Brain? The Histories of Tourette Syndrome. Cambridge, Massachusetts: Harvard University Press. 1999.
4 Tourette Association of America. https://www.tourette.org/about-tourette/overview/what-is-tourette/