Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.
I have a unique understanding of what it is like to have epilepsy. I had seizures for 50 years before surgical intervention by those who I call my angels at Massachusetts General Hospital put an end to the chaos that was destroying my life.
While having seizures, I couldn’t understand what was happening to me but now, with a clear mind, I can look back over all those years and understand what it is like to live with epilepsy and the damage done to the individuals having the seizures, as well as to those close to them.
Epileptic seizures occur when the mind goes to war with itself. There are different intensities of neuron warfare, ranging from cold war skirmishes and firefights to all-out assaults. As in any warfare, there is always damage done. Some memory is always destroyed while the fight rages on, and this alters our perception of realty. At times, memory loss may be minute and other times significant memory loss may occur. When we come back into reality from a neuron battle that raged in our minds, we will receive your gifts of love, compassion and understanding with heartfelt thanks. Witnesses or first responders to someone regaining consciousness after a seizure should understand this and always act in a gentle, caring, non-threatening manner.
All of us must endure difficulties, some more than others. For people with epilepsy, it is very damaging when we are made to feel like we did something wrong. Remember that we did not do this on purpose or do something wrong. We couldn’t help it. Our damaged brains made us do it. Try not to make us feel worse than we already do. We are burdened with so much guilt knowing that something happened to us that is incredibly disruptive to others. No matter how groggy we are, we appreciate and are comforted when met by a gentle, caring person.
To some people, this may sound selfish. However, I can’t help feeling the way I do. The more I think about what it is like to endure the full fury of a seizure, the easier it becomes to humbly ask for help from others.
When I was in the epilepsy ward at Massachusetts General wired to fire, having seizures monitored to trace their origin and determine if I would be a good candidate for surgery, I was always greeted by a kind and caring person when coming out of a seizure. Feeling comforted and secure helped make the monitoring ordeal bearable.
There are many other difficulties that often plague a person with epilepsy. Like many others, I have been diagnosed and treated for anxiety disorders, depression, PTSD, ADD, just to mention a few. Other psychiatric and psychological disorders are too complicated for me to describe. I used alcohol as self-medication to control stress and anxiety that often triggered my seizures. Alcohol helped for a while but inevitably led to alcoholism, which aggravated my anxiety disorder and pushed me into depression. When I stopped drinking and no longer took my medicine, my seizure activity increased dramatically in both frequency and intensity. The seizures could not be controlled by prescription medications and I eventually ended up at Massachusetts General in the care of my angels who intervened to fix my brain and save me from the disastrous place I was headed to. I think of it as starting my life over with a new, fixed and improved brain. I no longer must live with the conscious and unconscious fear of having seizures. Epilepsy has a huge negative impact on both the victim of the disease as well as others associated with the unfortunate.
— Written by by Bill Maier