While commenting on Kurt Eichenwald‘s excellent diary about his experiences with (and new book on) epilepsy, I found I had written something that probably should be a diary rather than a comment… so here it is. I hope in some small way this will help to expand the coverage on this subject as it really can’t be distributed wide and far enough.
When I was quite young, I was enrolled in a progressive/alternative school (troublesome child with “issues with authority”). Basically, I had an aversion to taking orders from idiots just because they were “teachers” or “adults"... but at that time (and at that age) we were just supposed to shut up and do what we were told, and I always rebelled against that. Never had trouble with the good teachers/administration, just the morons.
During one of our projects, we were paired up with other students we did not know well. I was paired with a small girl that had been quiet and a bit withdrawn for the few months I had been there. She didn’t seem to have any friends, and that was compounded by the fact that she was often absent from school. In the process of working on our project, I found out that she had some rather severe medical issues, including epilepsy, and was dealing with a kidney transplant. The school had been informed of her condition, but the rest of the class was not told about it as she had apparently been ostracized by both the staff and students at her last (public) school. I remember thinking how bizarre and stupid it was to put down someone for something they have absolutely no control over… and that was at 10 years old. Yet another reason to look down on stupid adults. She and I became fast friends during that project, and I counted myself quite lucky to have met her.
Several months later, this wonderful young girl had a Grand Mal seizure in class and the response was amazing (both good and bad). The teachers jumped to the rescue. Our teacher immediately acted to restrain her and yelled for the other teachers to come and help. Two other teachers ran in and while one was moving the desks away from her the other called for the school nurse. The “bad” was the students, several ran screaming from the class and the rest seemed to be either stunned or began to berate and laugh at her for acting like a “spaz”. I see now, with the benefit of maturity, that this response from the students was to be expected, but at the time I really hated all those who were making fun of her. She didn’t return to school for several days, and then I was called down to the school office where my mother and the principal were waiting for me. Wondering exactly what I had done now (I had a favorite chair at the office at my last school, as did my mother, and we used them often), I was devastated to be told that my wonderful new friend had passed away due to complications with her transplant aggravated by her seizures. It was my first direct experience with untimely death (and sadly not my last) and it struck me like a blow to the chest.
I demanded to be allowed to attend her funeral (I was invited, but my parents had doubts), and I am so glad I did. As soon as her mother spotted me she ran up and hugged me so hard I could hardly breathe. She told me, between sobs, that I was her daughter’s only real friend and that I had made her little girl’s last few months of life so much better just by being there for her. The feelings that rose up in me at that time were a muddled mess of sorrow, loss, compassion for her parents, and a burning fire of anger directed at anyone that would deign to dismiss such a beautiful person due to a medical issue.
I was only called to the office one more time after that day, and it was because I whacked the idiot kid that had the temerity to suggest that my little friend deserved to die because she was a “freak” over the head with a plastic lunch tray (painful, but no damage). I vividly remember the look on the principal’s face when he heard what happened… sort of a faint smile coupled with understanding. He read me the riot act (as he should) and then patted me on the head and said quietly in my ear “well done”.
Loved that school.
Somewhere, in a box stashed away in my basement, is a yellowed and unopened Christmas present for my friend that I have been unable to throw away for the 40+ years I have had it. And it still brings a tear to my eye to talk/write about this.
I miss my friend.
For those looking to purchase Kurt’s new book, it’s called A Mind Unraveled.