Jun 19 2012


Published by at 9:50 pm under Interviews

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.

Thanks for being my guest today! Please, tell the cool peeps about yourself.

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.

Amazon U.S.

Amazon U.K.


24 responses so far


  1. Sammy Suttonon 20 Jun 2012 at 3:30 am

    Congratulations, this is a fabulous and informative interview. Stuart and his wife Lisa are the “real deal,” their amazing support for authors and those with epilepsy is relentless and sincere.

    Stuart’s honest account of his own battle with epilepsy is an invaluable resource for those with epilepsy and their loved ones. It is also an uplifting story of courage for anyone, as we all face adversities in our lives.

    There is no doubt in my mind that Stuart’s journey as an advocate and wonderful author is just in its infancy. Often we discuss his story of experience, which is amazing, but Stuart is truthfully a very talented writer that portrays his story with ease for his reader’s enjoyment. I would be most excited to read his fiction.

    Thanks for sharing this wonderful interview; it made my day!

  2. Simon Hayon 20 Jun 2012 at 5:01 am

    Hi Ross & Molly 😉

    Great interview and, Ross, I know what a gentleman you are. We use social media in a similar fashion. I believe it’s important to do more for others than yourself. Building a community of like minded people is what creates marketing.
    Snappy dresser! That made me smile. I’m a terrible shopper and rely on others to buy my clothes. 🙂
    I have your book on my to read list. 8 to go and I’m ordering again!
    Much love to you both, Simon 🙂

  3. Gareth Stokeson 20 Jun 2012 at 8:23 am

    Thanks for an open and candid interview, Ross… I can’t imagine what it must be like to live with this particular incapacity, but God Bless ya fella… take care and good luck with all your writing projects.

    Regards / Gareth

  4. Maria Savvaon 20 Jun 2012 at 12:53 pm

    A very interesting and informative interview, Molly and Ross! As you know, I loved the book and it was educational to me and inspirational. I am happy to hear you may try your hand at fiction writing, Ross!! I will look forward to reading your future work! 🙂

  5. Beth Hoffmanon 20 Jun 2012 at 4:22 pm

    This is a wonderful interview! Ross is an extraordinary man — a man I’m privileged to call “friend”. He has great integrity, compassion, and speaks with an honesty that is rare and refreshing. When I read his book, I was taken on a ride through many emotions, and I learned so much about epilepsy and its myths. In a word, Stuart Ross McCallum is an INSPIRATION.

  6. Leigh Ann Wilson, Ph.D.on 20 Jun 2012 at 5:01 pm

    An incredible interview with an amazing subject. Ross, your book and interview give insight and hope to so many who would otherwise not know which way to turn. Thank you for your contribution!

  7. Sheri Wilkinsonon 20 Jun 2012 at 5:28 pm

    Great interview. I learned so much about epilepsy from Ross’ book. I agree with him on the (ignorant) misconception of swallowing ones tongue during a seizure, although they are frightening to who witness I find it best to just clear the way and let the seizure ride its course. But what do I know I am no doctor!

    Ross I do hope you write more, you know I will be one of the first to read your books. You are a courageous man, and I know what you mean about debating on writing the embarrassing parts, but I feel it is crucial in getting your story out. Loved your book, and I HIGHLY recommend to everyone.
    Love your sis across the pond Sheri

  8. Anne Barbanoon 20 Jun 2012 at 6:47 pm

    First of all Molly, good questions! Stuart was so thoughtful in how he answered them too. I’ve been struck by Stuart’s intimate nature in relating to people and genuine interest in others. He encourages your exploration into knowing why. He should be on everyone’s short list to interview. I’m so glad to have been invited into your writer’s club. Good work Molly. You gave us another angle into Stuart’s story. Best wishes, ANNE

  9. Stuart Ross McCallumon 20 Jun 2012 at 8:41 pm

    Just from the beautiful and sincere comments alone confirms the amazing friendships which have developed since publishing my story.

    Sammy, you are the real. Your life hasn’t been without medical hardships to conquer, but your fighting spirit will be victorious. Thank you for your support and true friendship.

    Simon, I thought you might like my take on social media. As I often see you online supporting good people and friends. You are indeed a gentleman, and I can see you wearing a suave; Italian made suit! 🙂

    Gareth, great to see you hop-on-board. I found your interview highly entertaining and informative. All the best, Ross

    Maria, thank you your sincere support and friendship. I do have a work of fiction in progress at the moment. Hopefully, one day it will actually become a book! 🙂

    Marta, we definitely do have a kinship which has developed since publishing my book. It is truly fascinating how (in this day and age) we can reach people across the globe and make lifelong friendships.

    Beth, your honesty and genuine friendship are something I will always treasure. We immediately hit-it-off as we share the same values in life. Our love for everything with fur has become well known online. 🙂 Thank you for coming into our lives.

    Leigh Ann, thank you for your wonderful comment. Where I mentioned in the interview about the fascinating people, we met on our trip to the US last year, well, you are definitely right up there. 🙂

    Sheri (sister), you have made an incredible impact on our lives. For someone who struggles with pain (daily) your fighting-spirit is truly awe-inspiring. I hope next time we make it across the water we will be knocking on your door. 🙂

    Anne, it is a delight to have you in our circle of friends. Your strength and compassion to make our world a better place for people living with a disability, makes me very proud to call you my friend.

    Thank you, Ross

  10. Cindy Schuerron 21 Jun 2012 at 3:43 am

    This is a wonderful interview, Stuart and Molly! Stuart, you are one of the most sincere people I have ever met on social media. I love your thoughts about Twitter and those who only show up to promote themselves without leaving anything behind for others.

    However, this interview is about so much more. You are such a giving soul and offer so much to your readers. Your heart is felt in every line you write, so please write us a novel. As much as Beyond My Control offers a reader, I know a fiction work of yours will be quite a treat.:-)…….

  11. Sheri Wilkinsonon 21 Jun 2012 at 8:47 am

    Ross you truly are amazing and Molly you have picked some awesome people to interview. Thanks for sharing Ross’ story.

  12. Dorothy Dreyeron 21 Jun 2012 at 9:17 am

    Great interview, Stuart and Molly. Very inspiring.

  13. Glynis Smyon 21 Jun 2012 at 12:20 pm

    Loved the interview. Your honesty and genuine nature are such a breath of fresh air, Stuart.

  14. Stuart Ross McCallumon 21 Jun 2012 at 5:50 pm

    Cindy, great to see you posting here. Thank you for your kind words, I had a wonderful time sharing some fresh information. I look forward to chatting soon.

    Sheri, you put the zing into amazing! Your interview last week was truly fabulous.

    Dorothy, I am delighted to see that you made it here on Molly’s blog. Wishing you all the best with your writing.

    Glynis, fabulous to see you here. Great to hear that your new book is getting some exciting media attention.

    Thank you all for stopping by and leaving wonderful comments.

    Best, Ross

  15. Laura Schultzon 23 Jun 2012 at 9:20 pm

    Ross, this is a wonderfully insightful interview that shows both your depth of character, the difficult journey you have transcended and your passion for giving to others. You have inspired me and many others. I hope we will be lifelong friends!

  16. Stuart Ross McCallumon 23 Jun 2012 at 9:58 pm

    Laura, I can say as a certainty that we will be lifelong friends. The short time we had meeting-up in LA late last year has given me many wonderful memories which I will cherish. Thank you, for stopping by my friend. xx

  17. Rob Dinsmooron 24 Jun 2012 at 4:18 am

    Kudos to Molly and Ross on a great interview. I have read and enjoyed Beyond My Control but this interview was filled with new information (not to mention humor!). I was particularly interested in the misinformation surrounding epilepsy and I, too, was guilty of buying into the “swallow the tongue” myth. I also enjoyed the comments about social media and the people who use and abuse it.

  18. Stuart Ross McCallumon 24 Jun 2012 at 4:52 pm

    Rob, fabulous to see that you dropped by. We had a marvellous time sharing fresh news and shedding some light on a few age-old myths that have surrounded epilepsy. Interestingly, many people were taught the ‘swallow the tongue’ myth. Some people do bite their tongues during a seizure, but I am sure all would agree; it is far-removed from actually swallowing!

  19. Ruth Nina Welshon 09 Jul 2012 at 12:46 am

    Thanks so much for this revealing interview Molly – you asked some things which I was longing to ask Ross. Ross, we have only just recently met but your memoir moved me very deeply. It was an unflinching portrayal and that kind of exposure takes such courage. When you talked of how you felt after the operation and that you couldn’t be a ‘man,’ I found this particularly revealing and moving as I know how hard it is for men to speak up and get help when it is needed. Your memoir is not just helpful for those with epilepsy or those who want to understand this terrible condition, but it offers a beacon for other men who find it so hard to talk about what they have lost. I’m thrilled to have met you. My very best to you Ross, Ruth.

  20. Stuart Ross McCallumon 09 Jul 2012 at 4:17 pm

    Ruth, thank you for dropping by Molly’s blog and leaving such an encouraging and detailed comment. I agree; it appears more difficult for men to speak out and seek help (if necessary) about highly personal matters. Thankfully, I found my inner-strength when I needed it most. I too am delighted that we met on Twitter. My very best to you always Ruth, Ross

  21. Pamela Noldanon 10 Jul 2012 at 10:40 am

    The more I read about Ross, the more I look forward to reading his book. The mailman needs to hurry!

    I feel the same way about most books that mention epilepsy – they are very clinically written and rarely empathize with a person new to epilepsy (whether the patient or the caretaker). I’m really looking forward to reading something that talks to the average person rather than the doctor. As Ross said, it is *so* important to get people talking about their condition to help dispel the many myths and superstitions about the disease, especially since it seems to affect differently everyone who has it.

    PS, Ross, I love your use of the word insidious to describe epilepsy. It’s perfect.


  22. Stuart Ross McCallumon 10 Jul 2012 at 7:51 pm

    Pami, Run postman run! 🙂 Thank you for dropping by Molly’s place. Today, we are much better equipped (the Internet) to spread awareness about epilepsy, and hopefully in time dispel the numerous myths.

    I do hope that you enjoy ‘Beyond’ and find it comforting that many of us are fighting this battle together.

    Best, Ross

  23. RJ McDonnellon 12 Aug 2012 at 9:37 am

    Thanks for sharing that inspirational interview, Ross. The older we get the more we encounter medical conditions, be they personal or through family and friends, that seriously test our character. Our clinical response to bad news is usually laid out by our doctors, but our emotional response is frequently left untreated. I believe your book does a great service in addressing this need. I applaud Dr. Fisher for recognizing its value and bringing it to the attention of his colleagues and patients.

  24. Stuart Ross McCallumon 13 Aug 2012 at 1:52 am

    RJ, I am delighted to see that you dropped by, Molly’s blog. Not that you are a stranger to this wonderful site. I remember fondly of the interview you had with, Molly.

    At the time of Dr Fisher’s wonderful review, he was volunteering his services as editor-and-chief of epilepsy.com. Who are undoubtedly, the worlds most up-to-date resource for people living with epilepsy.

    Thank you, Ross

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