Friday, April 8, 2011

GUEST POST-- STUART ROSS McCALLUM

Some writers can tell a great story, other writers are the great story.  When you have both, you have Stuart Ross McCallum.  I met Stuart on Twitter and found him to be genuinely engaging. There was something personal about his tweets which stood out among the, "I think I'll have cheesecake for dinner," posts.  When I looked into his background I discovered a fantastic story lurking under all of that persona.  I'll let him tell you a little about it and his book, "Beyond my Control, One Man's Struggle with Epilepsy, Seizure, Surgery and Beyond." I think you'll agree, his story is remarkable.  

Thank you Gary, for the opportunity to share with your readers the reason why I wrote, Beyond my Control, One Man’s Struggle with Epilepsy, Seizure Surgery and Beyond.


I believed there was a need to write a story about epilepsy that was not necessarily geared exclusively towards the medical community. The many books I had read on the subject were overly clinical and difficult to fully grasp. I hoped to write a story, which would make epilepsy real and not some abstract medical disorder. The feedback from readers with and without epilepsy has exceeded anything I could have ever hoped for.

My story begins when I was a 17-year-old and started to experience déjà vu sensations followed by severe headaches. I set out in search of a diagnosis which proved to be an arduous undertaking. I received many wrong diagnoses. An example is when a psychiatrist (of sorts) declared that I was suffering psychological episodes and given mind-numbing doses of antidepressant medication. Eventually leading to (incorrectly) being placed in a sanatorium for my mental health. My mystery condition (finally) revealed itself when I had a full-blown convulsion at the side of the road.

Beyond my Control spans over a 20-year period. During this time epilepsy caused a significant, often frightful, impact on my life and the lives of everyone close to me. For 15 turbulent years, I operated my own business, managed staff with ever increasing seizure frequency. This created an unstable and at times, highly dangerous working environment. The magnitude of my condition escalated, resulting with a post seizure response of a menacing and sinister nature, prone to violent outbreaks.

One of the early episodes occurred in my stained glass studio. The moment I shouted, "I'm having an aura (a warning sign that many sufferers of epilepsy experience)," our seizure plan was immediately activated, and I was locked inside my studio. The seizure passed, and I entered my postictal state (lose touch with reality). In a trance-like condition, I began aimlessly walking around the showroom, glaring at the display of fragile glass and lighting. After a few minutes, I clenched my hand into a fist and randomly lashed out, striking the glass panels. With my fist bleeding, I focused on the doors, kicking them over. As my postictal state was beginning to end, I calmly walked into the manufacturing area and lay down laughing and smiling. Once I finished laughing, I sat down staring and wondering why my hand was bleeding. I heard Rhonda unlocking the back door. She went straight to the first aid box and attended to my hand. Fortunately, my hand wasn't too bad and Rhonda kindly cleaned the cut, and dressed my wound. Ashamed and hesitant I asked, "What have I done this time?" Rhonda explained the ludicrous rampage, walking around my showroom, breaking glass.....I felt extremely gutted. As always, I had no recollection of the episode once the seizure had passed.

Whenever a frightening situation occurred not only was I in danger, my staff, and often customers were as well. Individuals perception and understanding of epilepsy clearly showed, which had surprising results. My socially unacceptable behaviour ultimately influenced me to undergo two major brain operations, in the hope of gaining seizure freedom.

My story provides an honest, emotional, and (sometimes) humorous look into living with the world’s most misunderstood serious brain condition. Thankfully, since successful surgery I am now free from (the invisible enemy) and no longer fear when or where the next seizure may strike.

Here's a link to Stuart's Web Pagehttp://www.beyondmycontrol.net/

13 comments:

  1. Great Stuff, Stuart. I read the book many moons ago and still marvel that you were able to conduct a stained glass business. You must have had a very understanding staff. By creating this book, which is highly readable, you are doing a great service in educating those who have little knowledge of this particular problem.

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  2. Thank you Stuart, I read your book and then find every so often that I must read it again or find a particular passage that helps enlighten me or get me through a particular situation.
    It is an inspiration to me and in my life.

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  3. Great post, Stuart. I commend you on writing a work of such a personal nature and fear that I'm going to have to read it. :)

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  4. Stuart, your story is one of hope. Having lost a family member to epilepsy without fully understanding the myriad implications of what living with it may have been, I found your story to be informative, humbling, and inspiring. Also I couldn't agree more with Gary you are among the jewels in social media.

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  5. Hi Stuart, I think you already know how I feel about your writing and the very personal story you shared with us. You are awesome and I love you and Lisa for what you have endured.

    I enjoyed this post so much! Thanks for giving of yourself, yet again.

    Warm wishes,
    Cindy

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  6. You give so much of yourself, Stuart, and this post is another reminder of your remarkable spirit. I'm so proud to call you friend!

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  7. Wonderful, Ross. I think your statement that you wanted to write a story that would make epilepsy real, and not some abstract medical disorder, is the key to the wonderful book you have written. Your engaging, personal, and highly educational story continues to help so many people find the courage they need in difficult situations of all kinds. Ditto what Beth said, I am so proud to call you friend.

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  9. Thanks Gary, and all the marvellous friends who have visited your blog to leave such uplifting comments. I have thoroughly enjoyed being here with you on, Strong Scenes. To friendship!

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  10. Stuart, you're an inspiration to all of us who complain about the smallest setbacks in our lives. Plus, you're an amazing writer. I wish you all the best

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  11. Wonderful interview, Stuart. You are and will always be an inspiration to my life.

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  12. Great post, Stuart. You're an inspiration to people everywhere due to your optimism through such scenarios as you've endured during your life. Thank you for sharing your hardship with us all.

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  13. Just wanted to thank you, not just because the nice post, but pretty much more because my grandfather is nearly recovering from his surgery and he has almost nothing to do but staying on bed all day, his best source of entertainment has been this blog and I feel this is something good for him and his recovery.

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