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A couple of weeks ago I read an article on psychogenic non-epileptic seizures written by the senior editor of a major all-purpose Website for epileptics. I found it while searching for another topic associated with epilepsy. It triggered my curiosity, so I read it (and it’s not the one in the link above). The article shocked me with its misinformation and dangerous stereotypes. I reacted strongly, my Joan of Arc complex rearing its defiant head in response.
I decided to post a response with links to articles and to studies from institutions such as NYU, Mayo Clinic and Yale that would prove how wrong the information on this site was and how potentially dangerous it could be.
As I began to write, things snowballed. Have you ever had the experience of a situation growing so large that you felt overwhelmed and yet not really understanding how it got to that point so fast? There was so much information available. I became rather obsessed with double and triple checking everything to make sure it was correct and had good references. I worried about elements that I was unable to absolutely verify.
To make matters worse, the information I found threw migraine seizures into the mix along with non-epileptic seizures, drug resistant epilepsy and fibromyalgia associated with epilepsy. With each new piece of data, I became more and more frustrated at the amount of written material available until I reached a point where I just wanted to give up. I started to feel depressed, thinking that the whole exercise of trying to provide useful information in this venue mattered little compared to what was actually out there. If a major Website dedicated to epilepsy was carrying information that was problematic, why did I think my small voice would matter?
In other words, Joan had gone from leading the troops to being burned at the stake.
It was at this point that I saw a TED broadcast lecture by Oliver Sacks. This is the man who wrote the autobiographical “Awakenings”, as well as “The Man Who Mistook His Wife for a Hat” and “The Mind’s Eye”. Dr. Sacks is Professor of Neurology and Psychiatry at Columbia University Medical Center. I have listed his lecture on TED and his official Webpage. If you are not familiar with him and his publications, it is well worth your time to start with one of his books. The thing about Dr. Sacks that strikes me every time I come in contact with his work or his lectures is his compassion and his uncanny knowledge of what it is like to have TLE. And it is that compassion that knocked some sense to me.
Many times I am tempted to believe that I am alone in a sea of information, the vast majority of which never really matches my reality. The best I can hope for is to find sources that do not have wrong information even if they do not exactly have right information, either. I struggle with depression, denial and self-doubt each day, along with the inevitable lack of self worth. And then I will read something written by Dr. Sacks. His words and his views lift me to a level of hope previously missing from my day-to-day life.
This time, in reading and listening to Oliver Sacks, I realized that the whole point of my recent struggles had to do with personal acceptance. Let me explain in more detail before you decide I have opted for a greeting-card solution.
There are many, many types, or syndromes, of epilepsy and many types of seizures. Each person experiences them in his or her own way, which I have pointed out in earlier posts. What I am beginning to wonder about is the inclusion of many other conditions not previously thought to be connected to epilepsy. As science moves closer to understanding the brain, more things are revealed. We balance in a world that is somehow connected through unseen links, but denied as a result of a public stigma that is so ancient that no one really knows when it began.
Each of us affected by this condition must decide how to describe it to the world around us; but, more importantly, to ourselves. We have to make decisions that are not clear-cut or verifiable in many cases, going on faith in a physician or in our own ability to research. We have to decide if we are to accept or reject, embrace or hide the condition. These decisions are hard, often lonely and usually devoid of the very elements that Dr. Sacks provides: compassion and true understanding.
In my own life, I have chosen to accept what I am and to fight for the best information available. As much as I try, I cannot make sure every piece of good information reaches individuals in need of help and reassurance. I can’t change prejudices in physicians or in the general public. Some days, I cannot even pull myself out of a depression when I have experienced too much seizure activity. But, people like Dr. Sacks help me get to the next day. I would like to think that by sharing his information here, someone else can get through the hardness of today and into the hope of tomorrow.