March is Epilepsy month with Purple Day for Epilepsy Awareness on the 26th of the month. I pondered on what my expectations were when I was diagnosed with epilepsy. I remember sitting on an examination table in a hospital room or the doctor’s office, gown on and a doctor (was it Dr. MacDougall or Dr. Weiss) standing in front of me. I don’t remember even thinking of what epilepsy over a life time would mean. My only concern was an expectation from the 1960’s and earlier. That a woman with a chronic disease or being pregnant or married would be dismissed from nursing school. At the time, I was a young nineteen year old mom, so societies rules had begun to change about the marriage and pregnancy issues. But epilepsy? I had only ever seen my older brother have a seizure and didn’t know much about his life. I didn’t know about managing a personal health condition - only for others. I only remember feeling very sad. My life was so messed up!
I went to, or was called in, speak with the Director of the Nursing School. Her words have stayed with me over these last many decades - ‘As long it doesn’t affect your work’ I would not be dismissed. The next ten years were not pleasant for me or for my young husband or my children: my epilepsy did seriously affect my family and friends. The unconscious nature of seizures as well as the confusion and memory loss for sometimes days following made me unaware of the impact that my health condition had on anyone else.
Education came slowly to me about managing this damaging chronic disease. Education and support is available now at many local and provincial epilepsy organizations for any age, for individuals with epilepsy or for a family member of someone afflicted with this disease.
Addendum (August 25, 2024)
What I didn't know then was that epilepsy can affect every day of an individual's life, if care is not taken to avoid risk factors. What are they? Each one is individual, but briefly it can be certain lighting, some sounds, environmental.......so many that are truly individual. We each need to know our bodies, our minds and our life in general.
“The roots of education are bitter, but the fruit is sweet.”
~ Aristotle
No longer valid:
In Victoria:
Headway - Victoria Epilepsy and Parkinsons Society
http://www.vepc.bc.ca
No comments:
Post a Comment