It is a struggle living with seizures, period. What Is harder is handling productive relationships while dealing with the inevitable.
Every relationship in my life has been impacted by my seizures. Just like every decision I make is impacted by my reality.
I believe anybody who has a debilitating disorder worries In the back of their mind how others will handle your reality and If they are strong enough. Of course, we have no choice but to handle It however we can. The blessed ones have people that stick by their sides through all of it.
Anxiety is a huge part of my life for many factors. Never knowing when a seizure could strike and ruin my day and possibly others or ending up in the hospital.
I was married for 16 years. The man never raised a hand to me and rarely yelled. Although, the words he supposedly joked about at one Doctor appointment, will forever haunt me. Being slapped or yelled at would’ve hurt much less. Regardless, the gut punch I received that day was the beginning of the end. He jokingly said, “Maybe I should find someone younger and healthier, a ‘newer model’.” Laughing, he said just teasing. That was when I learned there is truth behind every “just kidding”. He had indeed already found his younger and healthier person, while deployed. I just didn’t know this for a little while longer. Divorce was final within a year.
My three daughters have basically grown up watching me shake and bleed (from biting my tongue). Although, they didn’t have a choice about dealing with it either, they did great at stepping up to the plate when momma had a seizure. They knew what to do and always respected my wishes of keeping it low key. Often in public, they would find a way to hide me from others so nobody had to freak out. Like one time in Gatlinburg, I had a seizure while standing in line for an attraction. We had just left the Ripley’s Believe It or Not museum. They knew exactly what was happening when their never cursing momma accidentally said a cuss word. They banded together and tackled me against the wall. Not only to hide from others but also to keep me standing. Not an easy feat for a full blown tonic clonic seizure. When it was over, they took charge of everything I had been planning. The girls made a plan of how to deal with our tickets, money, food and getting me back to the hotel to rest it off. Always supportive, they have become great at working as a team. They were all teenagers at that time.
After the divorce, I constantly was being told to move back to my home state so Family could be close. Being the strong, stubborn, independent woman that I am, I refused (for a few years anyway),
I wanted to ‘show them’ that I could take care of myself. Yes, this caused some bad Incidents where I had nobody to help me. Then trying to date was like always having a bombshell to drop before they got too close. Most people were understanding and helpful. I had a few relationships, including a second failed marriage. His gut punch to me was saying he could maybe give me fiveteen years (after we got married). Of course I was shocked and confused. Why get married then? His biggest fear was growing old and not being able to take care of each other. I understand the fear of where my seizures will lead and how bad my future could look. I don’t hold It against him.
It sure feels nice to be in a relationship now where he is quick to cover my eyes and quickly notices my actions or words. Even after being together over a year, he has only seen a couple of bad ones. Although, they scared the crap out of him, he adjusted to it. He thinks with each one, he will only get better at handling them. It really is a lot to ask of someone to watch your violent body movements, hear scary sounds of teeth grinding, gurgling and stopping breathing. I can’t even imagine wiping the blood and sputum, then documenting everything, while hoping I wake up afterwards.
I think the fear and anxiety will forever be there. Wondering when someone cannot take it anymore. Wondering when another person will give up on me. That underlying fear keeps me humble and strong.