I’ve had epilepsy since I was a child. They were the small seizures, called absences or petit mal. During the delivery of my oldest son, I had my first tonic-clonic (grand mal) seizure. My seizures have been a part of my life for a very long time, yet my youngest son, now 21, has never seen me have a grand mal seizure.
With this in mind, it was ironic that, a little over a month ago, I had a “bad head day” at work that I can only describe as a day-long seizure. It wasn’t an absence seizure or a grand mal one. It was just a day of complete confusion, where I had trouble understanding people and even stringing a sentence together. One of my co-workers took me home, because my husband (my usual caregiver when my brain is not functioning properly) was in another city. This meant that my son, who happened to home, had to be my caregiver.
When I went upstairs to lay on the bed, my son came to investigate. Once he found out why I was home from work early, he sent a text to his father. Since my husband was taking his mother to an appointment in another city, I had not sent him a text to let him know what was going on. (Yes, my bad.) I knew my mother-in-law had no one else to take her to her appointment, and I was basically okay, just a little out of it. No big deal in my mind.
And so, it turned out, my son was caught between two worlds. In one city he was sitting with his mother, not sure what he should be doing while texting his father (outside of my sight) to give him status updates. My son was afraid. He was alone in a house with a mother who had multiple kinds of seizures and his father and brother (who have both seen my seizures) were in two other cities. No one knew if my next step would be a grand mal seizure. It was a waiting game. If it happened, I wouldn’t be aware of it, but my son would get to witness his first seizure, and he would be alone.
To his credit, he did an amazing job. In fact, we spent the afternoon together. He went and got his laptop and sat with me while we watched several old episodes of House, ironically, a medical drama. We laughed a lot, which was even better because we were doing it together. I didn’t feel any fear. I wasn’t thinking of what the next step might be. In my mind, everything was going to be okay. It’s my mantra. I try to believe that everything will be okay until proven otherwise. I did this during my cancer journey and I try to apply the same principle to my epilepsy.
As time passed, I actually enjoyed myself. I don’t remember the last time just the two of us spent so much time together. If epilepsy had not been part of the mix, it would have been the perfect afternoon for me. I felt loved and cared for. He was so attentive. I told him that my shoulder was starting to feel stiff from being in the same position for so long. He ran and got a pillow to try and make me more comfortable. I didn’t know at the time, but he had made plans to go out with a friend, but he never left my side. He stayed with me until my husband got home.
In some strange way, I’m glad it happened (especially with no grand mal seizure). I felt, and continue to feel, a closeness to my son that I’ve never felt before. You like to believe that people will behave in a certain way when put to the test, and he passed with flying colours.
On the other hand, it saddens me to know that my epilepsy puts my family in this kind of situation. I would love to be so-called normal, where I don’t have people around me who have to protect me and monitor me. I hate feeling like someone has to babysit me. I’ve used these exact words when talking to my husband and he always tells me it’s no big deal taking care of me from time-to-time; everyone just cares about me.
Again, I’m so lucky. Not everyone has the love and support of the people around them. Some people are alone and have no one with them when some kind of seizure takes place. So while I complain sometimes about wanting to have a normal life, the life I have is a very good one. There’s nothing like feeling that love to make a mother/wife feel overwhelmed with emotion. In fact, as I write this post, tears are streaming down my face. While epilepsy is my pain in the butt, it has shown me the good in people, even when they’re afraid.
Thank you to everyone who has ever been a part of one of my special experiences. You’re truly remarkable.
Over 30-years of writing experience, over five years as a cancer survivor, and a lifetime purveyor of wit and laughter.