Living With Epilepsy

I decided this would be a good time to implement the testimony of my almost lifelong struggle with Epilepsy. There were brief mentions of the condition in Parts 1 & 2 of my testimony, this post will give you the entire story. Next week in Part #4 I’ll pick back up concerning my journey of Faith in Jesus Christ my Lord and Saviour.Partial Complex Frontal Lobe EpilepsyI was 7 years old tossing some snowballs at my old man in the yard. It was the winter of 1993 in the great state of Indiana. My Dad and I were having a blast chucking these white balls, the size of baseballs and tennis balls, at each other. It was just a typical winter day, but that day would be unique, one that 33 years later I still remember as though it happened just minutes ago. I just got a good whack around the left shoulder by my old man. I shook it off and was about to let my next ball rip, then it happened. I suddenly was in like a fog, my vision got a bit blurry, hearing got faint, and I was not able to respond physically on my own accord. I dropped the snowball in my right hand and started slowly walking towards Dad. He immediately asked me if I was okay, but I could barely hear him. I began wondering where I was and who this man talking to me. Everything is missing from that point on, I cannot recall anything.Fortunately for me, Dad recognized that some of my reactions were similar to those of my grandmother. My mother’s mom was hit in the head during a softball game and began to have Grandma Seizures from that day forward. Shortly after my incident in the yard, my parents decided to have me tested, by a neurologist, the same fellow who was treating my grandmother. The first EEG examination came back negative, and all my brain waves tested as normal. After some more occurrences, primarily at night while I was asleep, my parents asked that I be tested again. This time, I was kept up for 24 hours before doing the EEG examination, and my abnormalities were found. Shortly afterwards, an MRI exam was done on my brain, clarifying those abnormalities. I was 7 years old, midway through my 2nd grade year of school, and officially diagnosed with Partial Complex Epilepsy. No reason for the condition could be determined by the neurologist aside from possible issues that happened during my birth. A C-section was needed during my birth, and in the process, I lost roughly around 90 seconds of oxygen. That is still the best guess that has been concluded to this current day. Tegretol was the medication I was prescribed to help control the seizures. I would go on that school year of 1993 and would only occasionally have seizures while at school. I can specifically remember like 3 or 4 occurrences. I basically was just sent down to the office and was made to wait it out. I seem to remember a couple of times my dad was contacted and came to the school. I grew up in Eaton, IN, and the elementary school was barely 5 minutes from where we lived. I remember sitting there in either the counselor’s or principal’s office, feeling cold and not knowing anything for a period of time. Simple things such as my name and age were forgotten until roughly a 10-minute span passed since the seizure happened.Most of the seizure activity was still occurring at night while I was sleeping. I can’t recall the countless times I’d wake up from having one, typically thinking I had a bad dream, and would just end up sleeping on the floor next to my parents’ bed. Occasionally, I would hop into bed with them, but simply having them in the room was enough comfort. I felt terrified after a seizure and my dreams practically seemed real, like my senses became extreme from seizures. Multiple nights of having at least one seizure were typically normal. This would continue for the following 3 years, roughly after I was diagnosed with Epilepsy. Now, the daytime seizures began to dissipate to the point where we were not concerned about them. I’d go the rest of my grade school years not having any issues with the seizures, provided I was taking my medication correctly.When I was 9 years old and about to begin 4th grade, my parents decided to move down to Westfield, IN. The move was job motivated, it would put my dad closer to His job in the Indianapolis area, and my mother would have better job opportunities. I seriously disliked that decision to move, and I never particularly liked living in that area around Indianapolis, however a blessing would develop from it. The move forced us to change Neurologists and it was Bradford Hale that we decided to see. I liked the fella immediately that first time I had an appointment with him. He was actually a pediatric neurologist, and the way he interacted with me was an obvious difference from Dr. Wolf in Muncie, IN. Hale was also not satisfied with the seizures just being controlled during the day. Wolf seemed as though the job was finished once the daytime seizures got under control. After 2 years of seeing Dr. Hale, a simple change was made to an extended-release version of my medication, which, within a few months, got the seizures completely under control. I was 10 years old, about to turn 11, and finishing up the 5th grade before I finally was getting a normal night of peaceful sleep, and not feeling fearful about going to bed.My parents decided that living around the Indianapolis suburbs wasn’t for them after about 2 years. We moved back to Eaton, IN just before I finished up 5th grade. Eaton, IN would be our permanent hometown for the remainder of my grade school years. I would continue to be seizure free throughout all of Jr High and High School. I was already a fanatical lover of baseball. It was the game I was truly devoted to playing and watching. I began playing Football in Jr High and continued playing until my junior year of high school. I played baseball until my sophomore year of high school. One would never know I had epilepsy unless I told them. There were only a couple of times seizures occurred during that 7-year time span. We experimented with the possibility that I’d lose the condition as I got older into my mid teen years. Removal of the medication was the only way to find out, and it did not work. Seizures occurred within 24 hours of being off my medication. They actually were more dangerous because I was bigger and stronger. The adrenaline glands open up real wide during my seizures, so I get a huge burst of strength and energy. Once when I was 12, and we tried removal of the medication for the first time, I seizure and literally dragged my dad for about 10 to 15 yards be he was able to tackle me.I began working and driving in high school, everything seemed fine, and I was planning on having the ability to live like everyone else. Right after graduation from high school I underwent an 8-month battle with Thyroid Cancer. Once that ran its course I went right back to working, got a job at a furniture warehouse working full time. After roughly 11 months on the job, I almost had a seizure while putting together a nightstand. I’m actually not sure what kept me from going fulling going into the seizure, but all the after-effect symptoms happened. I was 19 years old, approximately, 10 plus years had gone by since I had a seizure during the day while my medication was being taken. I scheduled an appointment with a neurologist, new EEG tests were done, nothing new was found. Unfortunately, after the EEG tests, I was suddenly fired from my job without any warning. No more than 6 to 8 weeks went by after that first incident in May of 2005, when suddenly I was back to having daily seizures.The seizures were occurring very randomly day or night. The seizures became more violent in physicality. The next 3 years would be terrible as no answers were in sight. I bounced from one Neurologist to another, nobody had a clue why the Epilepsy seemed to evolve. I couldn’t keep a job, so I was never under any insurance coverage. The medical bills just began racking up to the point I was over $50,000 in debt just in medical fees. One neurologist even tried to convince me that I never had the condition and was just having night terrors and anxiety attacks. So, He prescribed to take me off the 2 medications I was taking. Shortly after, in the spring of 2007, I had a seizure unlike any other. Honestly, I don’t remember anything for like a 3-day period. My Dad witnessed it, had to call the EMT, and had me sent to the emergency room at Ball Hospital. I don’t really even remember being in the hospital. Dad said I flopped around on the front room floor violently like a fish out of water, drifted in and out of consciousness, and ultimately, He thought I was dying. Apparently, I went into like a coma like state, which was something my parents witnessed my grandmother do more than once.Once I got out of the hospital, my dad was put in contact with a Neurological Specialist at the IU Medical Center in Indianapolis. I was immediately placed back on my medications, scheduled for new EEG and MRI exams, which resulted in a 3-night stay at the Medical Center. Dr Sabau was the specialist, and He wanted to observe me for a 3 day period while the exams were done. Obvious abnormalities were found in the Frontal Lobe area of my brain. The activity was so sporadic that it could not be determined if it was occurring in the left or right frontal lobe. Partial Complex Frontal Lobe Epilepsy was the final diagnosis. It can also be known as CPS. I was 21 years old and being told that I needed to begin planning for a continual future with the condition.Now I’m 40 years old and still battling with the condition daily. Most of the activity has gotten back to being mostly at night, but seizures during the morning after waking up or late at night before going to bed are not uncommon. The physicality and violence of the seizure vary from day to day. Falling out of bed is not uncommon. I have hit my head on nightstands, floors, walls, and bedframes. Obviously, my arms and legs go through a good beating weekly. Anything can become an object that I throw, toss, or beat up. The seizure can cause me to think that I’m being attacked by someone. My head becomes extremely sore just from multiple seizures occurring, the stress on my brain makes my head very sensitive. Washing my hair can become painful if I have multiple nights with multiple seizures. The cold chills, lack of awareness, not knowing who I am or who my wife is, and the fear that comes upon me are debilitating. It truly is hard to put into words these sensations I get that become hypersensitive. My hearing and sight can be lost just before the seizure and take time to come back after the seizure. I lose my ability to talk for at least 5 to 10 minutes.The first hour after I wake up is a crucial time for me, so I am typically alone in the house. I don’t go outside for roughly one hour after waking up. I try to keep my distance from my wife and son, that way I don’t danger them if I have a seizure. The bedroom doors stay shut until at least 30 minutes pass, unless I have a seizure, then there is nothing more to be concerned about. The daytime currently is smooth for me most days, the biggest issue is fatigue, and it results in me needing to sleep during the day. I simply feel constantly worn out, so there is always the chance, after sleeping, of having a seizure during the daytime. I have typically one day a week where I’m in bed sleeping for a good 14 to 16 hours. The past 12 years have simply deprived my body of too much solid, peaceful rest.I lose total consciousness while the seizure is occurring, and it takes roughly 10 to 20 minutes for me to regain awareness. I will not know my name, age, where I live, or who my wife and son are, though they are talking to me after one occurs. The aftereffects of the seizure such as fatigue, cold chills, muscle pain, and muscle strain are simply part of the condition that I live with daily. The best thing one can do while the seizure is occurring is to just leave me alone until it is over.I was forced to file a disability claim, nobody would hire me because of having seizures on the job. Last time I worked a full-time job was in 2008. I eventually had to leave because I was having seizures daily while on the job site. My only hope for full time work again is being able to somehow work for myself. That has been a major burden on me as a man. I grew up surrounded by men in my life, most importantly my own dad, who provided full time work income for their families or themselves. I’ve been reduced to being basically a home caretaker, food maker, cleaner, and all the other duties typically seen as for women in our society. That mindset is even more dominant among the Christian Church Culture that I have been a part of since I was 14 years old. My options in the line of ministry work for the Church have been limited by those in charge. Most people don’t want an Epileptic as a Pastor, Elder, Chaplain, or Evangelist. I’ve seen this as simply a lack of understanding that I can explain in a different post. Fortunately, I discovered an Assembly approximately 3 years ago that has worked well with me and welcomed me to serve the assembly despite my medical condition.I strive to fervently live the best life I can and use the abilities, energy, and talents that I do have for a testimony that can benefit others. You can have this condition and persevere. I will encourage anyone to seek out ways to better themselves. Don’t stop living and learning because of Epilepsy.I hope this posting simply brings more awareness to the condition of Epilepsy and the effects it has on both the one with the disability and the family. Feel free to ask me any questions, and I’ll do my best to answer.Thanks for reading The Bowdell! This post is public, so feel free to share it.The Bowdell is a Publication supported by You the Reader, Listener, and Viewer. If You want to receive frequent new posts weekly and support my work, consider becoming a Paid subscriber ! 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