Jun 19 2012
This week, my special guest is Stuart Ross McCallum, author of Beyond My Control: One Man’s Struggle with Epilepsy, Seizure Surgery & Beyond, an honest, easy-to-read, and compelling account of his struggle with temporal lobe epilepsy.
Thank you for inviting me today, Molly. It is a delight to be here on my favourite character blog. I am married to the most awesome girl in the universe (Lisa; my wife will be reading this) with two wonderful kids and a couple of fine furry pooches. (Just kidding about Lisa, she is truly the love of my life!) ☺
Your memoir, BEYOND MY CONTROL: One Man’s Struggle with Epilepsy, Seizure Surgery & Beyond is a very personal story and couldn’t have been easy to tell. What made you decide to make your story public and write a book?
It is an extremely personal story and (truth be known) during the final editing stages, there were divisions within the book that I considered removing, as many passages, which were described in detail are deeply shameful, embarrassing, and frightening experiences. However, by relaying the story exactly the way things happened is what makes Beyond my Control a very real account of living with epilepsy. There are several reasons why I believed my story should be told. I hoped by sharing my experiences written in a manner, which is not geared exclusively towards the medical community would create greater awareness. The many books I have read about epilepsy are heavy and overly clinical, and I believed there was a need for a human story that people with and without epilepsy could relate to. After all, as people we all share experiences, which are beyond our control.
Did you have thoughts about how the book would be received? Were there any surprises along the way?
To be perfectly honest I had absolutely no idea how well my book would be received. My only aspiration was that it would be read and people would find it an enjoyable and an educational book. Not too heavy as there is no shortage of humour throughout. The feedback I have received from people is humbling indeed. One particular occasion was receiving a thank you email from a lady, who had just finished reading my book. She suffered many similar, ultimately bizarre experiences that I did, and believed she was slowly going insane. My story reassured her that she wasn’t losing her mind, and she couldn’t thank me enough. We have been good friends ever since.
I was deeply honoured when the world’s leading online resource for epilepsy chose my book (out of the many written on the subject) as their first book to review. It is a thousand words in-depth review, so I will just share a small part with you here. To quote: Robert S. Fisher, M.D., Ph.D. Director Stanford Epilepsy Centre.
Beyond My Control, 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 time bomb; 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. 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, humour and honesty. It is a strongly recommended read for people with epilepsy and those who care about them.
I know you have a great interest in the genetic side of epilepsy, yet you didn’t discuss it in the book. Can you tell us a bit about it here?
I would love to shed some light on the genetic side of epilepsy. Temporal lobe epilepsy (TLE) was once considered an acquired form of epilepsy and wasn’t listed among the presumably hereditary. Our daughter, Lucy, had her first seizure at the tender age of twelve-months. Lisa and I both thought that there must be a link to my condition; surely, it couldn’t be just a coincidence. A few years later our family was asked if we would like to take part in a study looking into the possibility that (TLE) could be inherited. After extensive testing here in, Melbourne, a gene was detected in our family and a family in America. Since the discovery, many families have shown to carry the gene. Interestingly, my father carried the gene yet never had a seizure in his life. Being a carrier doesn’t necessarily mean you will end up having full-blown epilepsy, it will raise its ugly head in some people and not others. Which doesn’t surprise me as epilepsy is an insidious condition which often strikes without warning.
What do you think people most misunderstand about epilepsy?
Epilepsy has been shrouded by myths and misunderstanding for centuries. The lack of awareness and understanding has allowed many of these myths to flourish in some communities. To name just a few: Epilepsy is contagious. People with epilepsy are disabled and unable to work. You can swallow your tongue while having a seizure, which is physically impossible. Epilepsy is a form of mental illness, and the list goes on…. Even today many sufferers are afraid to speak out about epilepsy in fear of ridicule or rejection. I must add, all over the world there are many organizations and epilepsy advocates working diligently to dispel these, and many more myths. It will take time to educate people and remove the stigma which has been unfairly attached to people with epilepsy for centuries. However, today, we are much better equipped with the advances in technology (social media) to spread awareness than ever before.
How has your life changed since publishing Beyond My Control? What kind of impact has social media made?
My life has changed remarkably since publishing my story. Before I put pen to paper (literally) I did write Beyond my Control by pen; many pens and reams of paper! I have become much more aware of the challenges people face with epilepsy and an array of adversities that affect human beings today.
Social media has played a huge role, and through the various online networks, I have connected with some of the most genuine, talented, and sincere people I have ever known, many of whom will become lifelong friends. Late last year Lisa and I had the opportunity to visit America and meet up with some of our online friends. We had the time of our lives as the people we met were even more fascinating and wonderful in person.
While we’re on the subject, I’m always fascinated by the way people use (and misuse) social media. What have been your observations on the social media beast?
Perfect analogy, Molly, social media can be a beast at times. I am active on Twitter and Facebook, and I have found (personally) Twitter to be the most beneficial way to reach new readers. However, I do have a love/hate relationship with Twitter. I love the camaraderie I have with like-minded people genuinely wanting the best for each other. Never expecting anything in return, I take pleasure in sharing tweets which I find interesting, informational, and beneficial for a good person or organization. I am a strong supporter of other writers (indie and mainstream published) who I like as a person. I enjoy shouting out about great books which I have read, or definitely plan to read. This leads me into something I truly loathe; the all-about-me people on Twitter. And disappointingly, there are countless writers in this group. They are under the illusion that Twitter is the place to – constantly – shout out about their own work and precious little else. A pet hate of mine is people I follow back who immediately send me a direct message with a link attached to purchase their product. This annoying behaviour prompted me to add a motto to my bio: e-converse before e-commerce! Thankfully, the vast majority of people have grasped the communal side of social networking. And I do find my time spent networking most enjoyable.
What are your plans for the future?
My future, now that is a loaded question, as I have found that happenings in my life have often created pathways into new areas of interest. I can foresee that I will continue being an advocate for epilepsy awareness. It is immensely rewarding knowing that you are able to assist people who are going through a very difficult time in their lives. Writing will always be a part of my life; and I hope to write more books on a variety of topics. I would also like to try my hand at writing fiction.
Can you share with us your feelings about the ever-evolving publishing landscape. What are the pros and cons? Any predictions?
The publishing industry has changed dramatically since I published Beyond my Control. Interestingly, everyone I speak to seem to have an opinion on the way publishing is heading, and I suppose I am no different. We have entered a new publishing era, and I predict electronic books will continue to increase their market share, opening doors to unknown writers worldwide. Readers (like me) are embracing this new technology, as books have become more affordable and accessible than ever before. I don’t believe printed books will at any time be phased out entirely; however, their competition is fierce. I grew up reading printed books and I will always buy the printed edition written by my favourite authors.
I’ve been forever called picky, but I maintain that we’re all picky creatures. What are you picky about?
Yes. I agree. As human beings we are all a little quirky and picky about something. Mine would have to be clothing. I love wearing quality clothes and shoes. I often browse through thrift shops and pick up amazing bargains. Admittedly, I have a ridiculous number of suit jackets, which I periodically donate to a worthy cause. I look at it as a form of recycling. ☺
What do you hope to know in five years that you don’t know now?
Great question, Molly. As scientific research and development into finding a cure for epilepsy is happening daily, I (among millions of others) would love nothing more than to hear a cure has been found for this insidious neurological disorder.
What do you know now that you wish you knew five years ago?
Finally, I can now type quicker than write. I would – never – consider using multiple pens and paper for my next book! ☺
Where can people find you in cyberspace?
I have embraced cyberspace with gusto, and I am practically everywhere online. I can often be found mooching about on facebook, Twitter, and Goodreads. ☺
Any parting words for the masses? Any shameless plugs?
Thanks again for inviting me here today, Molly, I have had a delightful time. I would also like to thank all the wonderful people I have met online and readers (with and without epilepsy) who have appreciated my story.