Epilepsy and Me16:47 Jul 12 2018
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If you've noticed there's a lot of purple on my profile, there's a reason for that. Purple is the color for Epilepsy Awareness and I have epilepsy, a seizure disorder. I've had epilepsy since childhood but I was able to carve out a good 20 year career in ophthalmology and optometry. Back then, my seizures lasted only milliseconds which is less time than it takes to blink an eye. It was during a period of immense stress, between 2010 and 2014, that affected my neurological health greatly.
During that time period, I was dealing with a divorce, physical and sexual assault from my ex-husband, family deaths, death of pets, working overtime, continuing volunteer work, looking for a new employer, buying my first home, moving 100 miles away from the only life and family I knew, dealing with the transitional stress it put on my kids, a crappy rebound relationship, and driving 160 miles round trip, daily, for my new job. Those were just the major issues. My seizures went from milliseconds to full on minutes for each event (seizure) in just 6 months of gaining my new life of starting over as a single mother.
It was on the drive back from New Orleans, after attending continuing education classes for my ophthalmology certification, that I had a major seizure while crossing the I-10 bridge in Baton Rouge. Somehow, I was able to stave off the seizure until I crossed the bridge. Once I pulled over to the shoulder, out of traffic, I went into a convulsion. I was alone.
Upon waking, about 20-30 minutes later, I was suffering from severe post-seizure symptoms including the inability to recognize anything around me, including my own face in the rear-view mirror. I knew I was on my way home, I knew the exit numbers to get there, but I simply could not recognize anything around me much less road signs. I passed up my exit and was nearly half way to Lafayette before I realized I was somewhere I hadn't been before. The next six hours was scary but I eventually made it to my driveway.
I saw my neurologist a week later and was ordered to file my disability the same day. He was very unhappy knowing that I was driving by myself. I was a danger on the road with the amount of seizure activity I was having. It couldn't be helped though, I was on my own. No husband, no family and my rebound relationship may as well have never happened. I could rely on no one but myself. To have struggled through so much just to get to the place I was, only to be devastated further by epilepsy, crushed my ability to be self-sustaining. I went into a deep depression for a couple of years thereafter.
Despite the hardships of dealing with my daily seizures and my depression, I was still able to maintain my house and take care of my kids. The worst of it all was being put on the drug, Tegretol. I developed severe side effect issues including translucent skin (I would start to burn under the sun within minutes of stepping out into my yard), foggy brain, memory loss, severe muscle cramps, atrophy, imbalance, and stiffening of all my joints. I was unable to walk very far and had to use a walker just to get to the bathroom for 3 years. My disability went through after 16 months. Had it not been for the financial support of my ex-inlaws, I do not know how I would have managed to stay afloat during that time.
It was during the last 6 months of waiting for my disability approval that I reconnected with a man I'd known since the 7th grade. John came into my life again. We'd not seen each other for nearly 25 years, since our Freshman year in high school. He was my first boyfriend and first love and now he is my last. We've been together for four years now and his presence in my life has been a great blessing. After becoming reacquainted with John, I also reconnected with other high school friends from that period of my life, including one of my best friends, Mia.
Mia is also disabled but still as creative and awesome a lady as ever. She resides with me as my housemate and friend. She lost her home and had nowhere to go. So John brought her home to be with us. She helps me around the house and runs errands for me to the grocery store since I can no longer drive myself anywhere. John drives a tanker truck hauling caustic chemicals and comes home at least a couple of times a week.
Though happy together and having a support system in place, life has not been without its challenges. When is it ever without them? John nearly died twice last year. Once from anaphylactic shock and then from a chemical accident in Toledo, OH. Amazingly, despite the fact he should be blind and horribly burned, he walked away without any damage to his body, inside or out.
A month later, my son attempted suicide at his school but stopped himself and went to the principal for help. He was admitted to a psychiatric facility for about 5 days and referred to a clinic with an appointment. He is currently being treated for major depressive disorder with psychosis but schizophrenia has not been ruled out. He was unable to graduate with his senior class this year. Thus far, he is still struggling and we have yet to find the right combination of medications to treat his symptoms, but he's hanging in there. My daughter has been affected by all of this as well and is in treatment for anxiety and depression as well.
Regardless of these struggles, we are still here for each other and supporting one another, being present in our lives together. Stress is a major trigger for my seizures now, so we have all worked together to keep the atmosphere in our home peaceful and laid back. If any of us has a bad day, we turn to each other and talk about it or sometimes just sit with one another so that we're not alone. Our lives have changed completely, but that is what life is, ever changing and unpredictable.
I am thankful for the every day we have together. I have hope still that though each day presents a challenge, we can tackle and deal with them, one day at a time. Love is the center of our lives now and the push for positive energy is a present and conscious effort. Through it all, we face one problem at a time together.
From here on out, you will see articles on epilepsy, informative facts, my thoughts on the topic and how I deal with it each day. If you have epilepsy or know someone who does and need to talk about it or have questions, please feel free to comment or inbox me in those regards. I will answer as best I can to help educate and raise awareness of this unseen, neurological disability.
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