Deeply disturbing information was disseminated, and stereotypes were reinforced last night during a television interview. On September 10,2011, University of Minnesota football coach--Brad Kill--had a seizure during a football game. His players, and colleagues knew of his seizures. I have not met Coach Kill. I report regarding what I understand of him. Media coverage.
I do understand what it is to have a seizure. I have had seizures since childhood. I am 51. Each individual's seizures are different. Yet, I am compelled to respond to the misinformation given, and stereotypes reinforced by a neurologist last night.
Most disturbing of what the neurologist said? Something to the effect of, "People with epilepsy foam at the mouth."
This is not true. Case closed.
"Seizures are frightening."
Yes. Both for the observer, and for the person having the seizure.
However, fright is not an excuse to stand by--panic. You can help.
First, it is possible that an individual having a seizure may be able to hear what is being said during a seizure. Often, I am. Yet, the excessive electrical activity in the brain--the anatomical thunderstorm--drains me of the energy that otherwise I would use to respond.
Second, not holding an individual during a seizure may be too extreme of a directive. Beyond getting the medical attention I need, the most helpful--reassuring--action ever taken was from a colleague. While my right leg was convulsing--shaking violently--she caressed my leg. She told me I had done nothing wrong, I had no reason to feel embarrassed, and I would be OK.
She caressed my leg.
My colleague trusted what I had said--valued what preferences I had expressed to her regarding my seizures--such that she resisted the nurse who said not to hold my leg. She was not restraining me from movement. She was touching me firmly--reassuringly. There is a huge difference. Never have I heard a medical professional make that distinction. There is a difference--a huge difference.
As to embarrassment--being embarrassed by having a seizure--I understand.
Yet, far more embarrassing than any seizure could be ever is not telling someone how you prefer to have your seizures handled, if you have seizures.
Early in my career, my loved ones were concerned about I would say during an interview that I had seizures. I understand. I appreciate their advice. Fear existed, and exists yet today. I assure you, I did not walk into job interviews and say, "Hi, I am Patty Thorsen. I have seizures. Can I have a job?"
I did inform my supervisors, and colleagues that I had seizures. I gave them the basic emergency contact information. I took one more important action. I informed my supervisors, and friends how I preferred to have my seizures handled. Embarrassment, or fear I felt in doing so was mitigated by the knowledge that they would know how to handle my seizures.
Embarrassed by having a seizure? Yes and no. Yes, the times I have had a seizure in public are not my proudest moments. Yet, once I have a seizure, I need to channel every ounce of energy I have, and every ounce that I don't have toward staying as calm as possible during the seizure--praying that the words I spoke about my seizures were heard. During a seizure, I pray that people around me--people who have the energy to take constructive action--are courageous enough to do so.
Whatever embarrassment we well may feel, we--any of us who have seizures--need to channel that embarrassment into helping other people to help us. We need to make an investment in creating calm understanding--not fearful chaos.
Friends and family may offer their loving questions as to how someone with seizures how they wish to have them handled. Whether it be a reassuring word or touch, humor or whatever. Honesty is the only way to dispel awkwardness, fear, and chaos.
I have serious doubts about some medical professionals I have known, and with whom I have had interactions. I have had, and continue to have the benefit of extremely helpful, competent medical professionals.
Yet, the comments made by the neurologist this week made necessary my response.
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