My Childhood
“High” in My Childhood?…No way!
Back in 1968, at about one year of age, I received my vaccination. I later had a reaction to the vaccination which caused me to run a high fever. My parents then gave me a cold-water and alcohol bath and baby aspirin and put me down to sleep. In the meantime my parents had visitors who came to see me. When they approached the crib they found me having a convulsion due to the high fever. They immediately wrapped me up and rushed me to the hospital where my temperature was one hundred and eight degrees and could have been higher. Death at this time was a possibility. The next day I broke out with red spots which a blood test confirmed Roseola (Baby measles) due to a reaction to the vaccination. Ironically, though, according to my dad I went approximately six months before my first seizure took place which set the pace for ongoing seizures thereafter.
When I ran a fever, and most of the time they were very high fevers, my parents would always have a wet rag
soaked in rubbing alcohol to put on my forehead in hopes of getting the fever to come down. (To this day if I
smell rubbing alcohol or anything that mimics the odor, it takes me right back to those days) Since I was not
able to swallow an aspirin whole, my parents would dissolve one in a teaspoon with a little bit of water for me so
I could swallow it more easily. It tasted so gross that it took my mind off of the fever for a moment. When I ran
extremely high fevers, my parent’s wrapped my torso in a cold, wet towel and packed ice under my armpits,
knees and ankles. I screamed my head off it was so cold! If I had a more mild temperature, normally one
hundred and two degrees, my dad always went to the store and brought me back some toys. I broke them within thirty minutes, though, since I was so excited to get them as well as being rough back in those days
anyway!
My parents tried to modify my diet to see if anything was giving me a negative reaction to trigger a seizure.
My mom said that she felt really bad because I would cry out for food that I wanted but was not given during
this experiment. (I think that’s why I got so many Twinkies and Devil Dogs later on in my childhood!) My
mom was so routine, though. Every time we came back from grocery shopping, she would hide the goodies in
the exact same place…the far right closet in the dining room hutch. It was always easy to find. In today's
treatment regimen there are two dietetic treatments known as the Ketogenic diet and the Modified Atkins diet
which are modified diets as well.
Neighborhood Secrets
If I were playing or riding my bike in my neighborhood and felt the on-set of a seizure, I always ran back home. Not only did I not want other people to notice but because I had the thought of my parents packing there luggage and leaving me by myself and never returning again. I vaguely remember running up to my mother in the kitchen and hugging her in a sigh of relief that they did not leave me.
The kids in my neighborhood treated me a little differently than my school mates did. In my opinion due to them not knowing about my affliction. One time and the only time I urinated my self was when I was at one of my neighbor’s house. I was standing up and knew where I was but could not control myself. I saw him tell his mom and she secretly told him what was wrong. I ran home completely embarrassed and scared.
My Two Pals
Back in my younger childhood days, I had acquired two fictitious buddies that I always confided in when I needed to get my feelings out or just have someone to talk to. This usually happened when I was in my bedroom and everything around me was completely silent. I knew I was safe, had nothing to fear and was not threatened by the possibility of someone...anyone witnessing myself have a seizure.
One of the characters names was “Boy.” Boy was a little tan colored mouse that wore a Mexican hat, walked on his two back legs and stood about two inches tall. He always spoke to me on a supportive level and always lent an ear when I needed to talk about something.
The other character was a really weird looking guy named Powerman. He was a tough looking guy that had white hair, a really big head and stood about five inches tall. He always spoke very sternly to me and made sure I was “up to task” on what I needed to do such as take my medication on time.
School Days
As I approached the age of five, I was registered into school and began Kindergarten. This was when the downward spiral that I never would have dreamt about began to take place. As normal in Kindergarten, it’s always taught to children on how to interact with one another and be friendly. How to become social. Well, my epilepsy was mistaken for being a snob since I was introverted because of my condition and afraid of being ridiculed. My kindergarten teacher was under the impression, due to my different and hyper behavior that I was too immature to advance to the first grade. When I was willing to play with other kids in Kindergarten, my teacher accused me of being a bully because I wanted other kids to push me around in a wagon. My Kindergarten teacher wanted to leave me behind a year and take Kindergarten all over again but my dad refused and moved me onward to the first grade.
Moving forward to the first grade and beyond, I was always picked last on a team when kids got to pick who was playing on there side. The only time I was ever picked first…yes first…is when we played kick-ball out on the court. This is because I always scored home runs. This was probably the only time in my school days that I actually felt important and liked. Thinking about it nowadays is like people being used for there skills or physical appearance and not being liked or appreciated for who they are. When I took the bus to school, nobody wanted to sit next to me. When I got one of my seizures, I never wanted anyone to see me due to the blank look on my face so I stood away. Now don’t get me wrong. I did my share of kicking, biting and screaming but I know that my epileptic condition was the brunt of my issues in school. As you may have guessed by now, my grades suffered and I felt “stupid” as I was not able to acquire decent grades by concentrating fully on my school work. Instead, I would always be thinking about the bully that threatened to beat me up when class was over so my fear got the best of me and my class mates knew it. My attention span also lacked which is very common in epileptics because the brain has been affected or altered. This, too, contributed to my below average grades as well. I just slipped by every year with my grades to advance me to the next school year and it felt degrading. Energy is felt and seen by all of us and many don’t know it but it’s instinctual throughout every part of our lives. And our pets, too, feel our energy, our fears, our sadness, our happiness.
So that set the pace for the rest of my school days right up until I wore my purple cap and gown at graduation. And that, too, was lonely as I hadn’t a girlfriend to celebrate with. To my choosing, yes. But still very lonely.
“High” in My Childhood?…No way!
Back in 1968, at about one year of age, I received my vaccination. I later had a reaction to the vaccination which caused me to run a high fever. My parents then gave me a cold-water and alcohol bath and baby aspirin and put me down to sleep. In the meantime my parents had visitors who came to see me. When they approached the crib they found me having a convulsion due to the high fever. They immediately wrapped me up and rushed me to the hospital where my temperature was one hundred and eight degrees and could have been higher. Death at this time was a possibility. The next day I broke out with red spots which a blood test confirmed Roseola (Baby measles) due to a reaction to the vaccination. Ironically, though, according to my dad I went approximately six months before my first seizure took place which set the pace for ongoing seizures thereafter.
When I ran a fever, and most of the time they were very high fevers, my parents would always have a wet rag
soaked in rubbing alcohol to put on my forehead in hopes of getting the fever to come down. (To this day if I
smell rubbing alcohol or anything that mimics the odor, it takes me right back to those days) Since I was not
able to swallow an aspirin whole, my parents would dissolve one in a teaspoon with a little bit of water for me so
I could swallow it more easily. It tasted so gross that it took my mind off of the fever for a moment. When I ran
extremely high fevers, my parent’s wrapped my torso in a cold, wet towel and packed ice under my armpits,
knees and ankles. I screamed my head off it was so cold! If I had a more mild temperature, normally one
hundred and two degrees, my dad always went to the store and brought me back some toys. I broke them within thirty minutes, though, since I was so excited to get them as well as being rough back in those days
anyway!
My parents tried to modify my diet to see if anything was giving me a negative reaction to trigger a seizure.
My mom said that she felt really bad because I would cry out for food that I wanted but was not given during
this experiment. (I think that’s why I got so many Twinkies and Devil Dogs later on in my childhood!) My
mom was so routine, though. Every time we came back from grocery shopping, she would hide the goodies in
the exact same place…the far right closet in the dining room hutch. It was always easy to find. In today's
treatment regimen there are two dietetic treatments known as the Ketogenic diet and the Modified Atkins diet
which are modified diets as well.
Neighborhood Secrets
If I were playing or riding my bike in my neighborhood and felt the on-set of a seizure, I always ran back home. Not only did I not want other people to notice but because I had the thought of my parents packing there luggage and leaving me by myself and never returning again. I vaguely remember running up to my mother in the kitchen and hugging her in a sigh of relief that they did not leave me.
The kids in my neighborhood treated me a little differently than my school mates did. In my opinion due to them not knowing about my affliction. One time and the only time I urinated my self was when I was at one of my neighbor’s house. I was standing up and knew where I was but could not control myself. I saw him tell his mom and she secretly told him what was wrong. I ran home completely embarrassed and scared.
My Two Pals
Back in my younger childhood days, I had acquired two fictitious buddies that I always confided in when I needed to get my feelings out or just have someone to talk to. This usually happened when I was in my bedroom and everything around me was completely silent. I knew I was safe, had nothing to fear and was not threatened by the possibility of someone...anyone witnessing myself have a seizure.
One of the characters names was “Boy.” Boy was a little tan colored mouse that wore a Mexican hat, walked on his two back legs and stood about two inches tall. He always spoke to me on a supportive level and always lent an ear when I needed to talk about something.
The other character was a really weird looking guy named Powerman. He was a tough looking guy that had white hair, a really big head and stood about five inches tall. He always spoke very sternly to me and made sure I was “up to task” on what I needed to do such as take my medication on time.
School Days
As I approached the age of five, I was registered into school and began Kindergarten. This was when the downward spiral that I never would have dreamt about began to take place. As normal in Kindergarten, it’s always taught to children on how to interact with one another and be friendly. How to become social. Well, my epilepsy was mistaken for being a snob since I was introverted because of my condition and afraid of being ridiculed. My kindergarten teacher was under the impression, due to my different and hyper behavior that I was too immature to advance to the first grade. When I was willing to play with other kids in Kindergarten, my teacher accused me of being a bully because I wanted other kids to push me around in a wagon. My Kindergarten teacher wanted to leave me behind a year and take Kindergarten all over again but my dad refused and moved me onward to the first grade.
Moving forward to the first grade and beyond, I was always picked last on a team when kids got to pick who was playing on there side. The only time I was ever picked first…yes first…is when we played kick-ball out on the court. This is because I always scored home runs. This was probably the only time in my school days that I actually felt important and liked. Thinking about it nowadays is like people being used for there skills or physical appearance and not being liked or appreciated for who they are. When I took the bus to school, nobody wanted to sit next to me. When I got one of my seizures, I never wanted anyone to see me due to the blank look on my face so I stood away. Now don’t get me wrong. I did my share of kicking, biting and screaming but I know that my epileptic condition was the brunt of my issues in school. As you may have guessed by now, my grades suffered and I felt “stupid” as I was not able to acquire decent grades by concentrating fully on my school work. Instead, I would always be thinking about the bully that threatened to beat me up when class was over so my fear got the best of me and my class mates knew it. My attention span also lacked which is very common in epileptics because the brain has been affected or altered. This, too, contributed to my below average grades as well. I just slipped by every year with my grades to advance me to the next school year and it felt degrading. Energy is felt and seen by all of us and many don’t know it but it’s instinctual throughout every part of our lives. And our pets, too, feel our energy, our fears, our sadness, our happiness.
So that set the pace for the rest of my school days right up until I wore my purple cap and gown at graduation. And that, too, was lonely as I hadn’t a girlfriend to celebrate with. To my choosing, yes. But still very lonely.
A Place of Peace and Tranquility
Back in 1982, my parents acquired this beautiful lake house up in a little hamlet called Yulan. It was up just beyond a town called Eldred which is a town that a lot of people seem to be familiar with. The original house was a summer cottage as a lot of homes in Yulan are since nobody had heat. Well, my dad had a great idea. He turned that place into a peaceful haven that we could go to all year round. Why is this important? Because I was able to get away from it all and forget about school for a few days. It was my childhood “drugs”…if you will. Yulan gave me a lot of peace because I did not have to deal with anyone picking on myself. It was a place of security…a place of knowing that I could be who I truly was and not have any one judge me. Elderly people always took a liking to me and instinctively knew (goes back to energy as I stated earlier) that I have a lot to offer the world and that I am more valuable than I ever gave myself credit for in spite of my affliction with epilepsy. (It’s just like spousal abuse when a wife knows how valuable she is before she gets verbally beaten down enough times by her husband and slowly starts to feel worthless because he tells her she is. My abuse was both physical as well as mental from my schoolmates which brought me the same message.)
The absolute best part of those days was with my late dog, a Golden Retriever named Sam. He was the best and as all dogs do, gave me unconditional love no matter what. No judgments but pure love. A lot of times when I had a seizure, I would look around myself and Sam would be sitting right by my side as though he knew instinctively that I was sick. Sam loved to run, jump, play and roll in the snow. He made me freeze just watching him! He loved it. I would actually get scared in a good way when Sam went wild by running so fast that his rear paws went in front of his entire body as he was running if you can picture this. He must have been doing forty miles per-hour. So I knew that if he ran into me which by the way, he was heading straight towards me, that he would just bowl me over so I always crouched down when he chased me like that. Sam absolutely loved Milk Bones and Rawhide chews. I could make him bark for one when I teased him. When my dad and I went to a breeder nearby in Middletown to purchase Sam back in 1978, I picked him out. He was the only one sleeping and the darkest of them all. It was love at first site! My dad and I were hysterical laughing because on the way home from picking Sam up, he was chewing on my dad’s steering wheel. My dad asked him if he wanted to drive! Too funny. Sam also loved to chase his tail. I had thirteen great years with Sam. He supported me throughout my childhood and I am forever grateful. I now have Sam proudly displayed on my window sill…still watching over me.
I'll Have What He's Having!
Okay, we all know the drill. Mom makes an appointment to see our favorite doctor due to a soar throat and low grade fever. While we are waiting for that magic hour to arrive, I am on pins and needles as though I'm being taken to the electric chair! So mom ties me down in the car (figuratively speaking) and gets me to the doctors office...in one piece. We proceed to check in and sit in the waiting area all the while asking my mom if I am going to get a shot because I do not want one. She always told me no but I knew as soon as my pants got taken down and my mom said “he just wants to examine you”...that it was coming. The dreaded spear. WHAM! A Penicillin shot right in my behind to fight off any possible increase in fever as that seemed to be the cause of a bad seizure. As soon as I was checked for an infection in my throat...better known as a soar throat, that is what depended on whether or not I received a shot. Since, as most if not all of us know...a fever is an automatic defense mechanism for children as that is what kills off infection since the immune system is not yet optimized. Hence the shots.
Back when I had acquired epilepsy, I went on one of my doctors visits with my dad. He said that I would not even let the doctor examine me at all. I got so scared that I would literally stand in the corner of the office crying and wiping both arms up against my nose because of all the tension giving me a runny nose and kept saying “no” to my dad and the doctor. That day, my dad just took me home because of being in such a rage and being so scared. There was no way the doctor could examine me.
Blood Tests
I always had these routine blood tests done at my doctor’s office to read my medication levels by a very nice nurse. (Funny how we remember things like that. I think I had a crush on her since she was so cute!) I actually have a scar on the tip of my index finger from all of the blood tests I had done during my childhood. I then got my choice of a lollipop. What makes me laugh about these visits exclusive to just getting a blood test is that my doctors office had two waiting areas. One for “sick children” and one for “well children.” Both sections were about ten feet away from each other located in the same room! That's the equivalent back in the day when restaurants had both smoking and non-smoking sections!) Seriously...does that create a barrier of defense? I think not.
Afterward, my mom and I were off to the pharmacist where I would then finagle my way to even more candy. The nurse wrote my mom two prescriptions. One for Phenobarbital and one for Dilantin which were my childhood drugs. The Dilantin tasted like spearmint since it was supposed to make children think it was candy. The Pharmacist stood so short; you could hardly see his face over the counter! While we were waiting on my prescriptions to be filled, I would always bug my mom to buy me Pez which was one of my favorite candies. I even got a five-pack of refills! I think I have one or two of those dispensers hiding away some place. Fred Flintstone was one of my favorites. Once in a while I got my mom to buy me an Almond Joy in addition to the Pez. I told you I would finagle her!
Later on in my adolescents, I graduated from pricks in the finger to getting a one inch needle stuck in my vein via my right arm. I am very muscular and one time in my adulthood after making the routine “fist” to find the vein, the nurse taking the blood felt my forearm (in a professional manner) and blushed afterwords. I was hysterical laughing to myself!
Medications
I’ve been on a lot of anti-epileptic medications but never any improvement. It’s safe to say that I’m a jack-of-all-medications; master of none! I’ve been on my fair share of anti epileptic drugs such as (not in any specific order) Depakote, Dilantin, Felbatol, Frizium, Keppra, Lamictal, Neurontin, Phenobarbital, Tegretol, Topamax, Trileptal, Vimpat, Zonegran. These medications had some annoying effects on me such as blurred vision, not being able to steady myself, dry-mouth, disruptive sleep. This is partly my reason of not doing well in school. I have learned through my own research that loss of memory and a very low comprehension go hand-in-hand with epilepsy.
I highly recommend doing research on any kind of medication you or your child is being put on. My epileptologist wanted to put me on an “experimental” drug if I would comply. It's very scary to think about what the potential complications as well as side effects can be with prescription drugs.
A Heart-Attack? It Can’t Be!
I do my best to try and keep up with research on medications that I want to try and what the side effects are for both the short term and the long term. A few of my medications gave me the run-of-the-mill side effects such as being unsteady and having blurred vision.
A few months after being put on Zonegran as another add-on drug during my adulthood, I began to get out of breath after twenty minutes or so of fast walking. Since I exercise every day this was not a normal reaction. I always had the occasional heart “thump” as I would call it but now I began to get winded on a daily basis if I increased my heartbeat in any way and would get minor discomforts in my back, tightening in my chest and pain down my left arm. These are all signs of a heart condition. At that time I was also being introduced to Vimpat which my friend takes presently. I called my epileptologists office (I have no faith in doctors…Period!) and he had the nurse call me back to take me off of the Vimpat immediately. That adjustment did not correct the issue so I did even more extensive research on the Zonegran I was presently taking before being introduced to Vimpat as an add-on drug to Zonegran. I was confident that the Vimpat was not the cause.
Sure enough after digging really deep and doing more extensive research, I read that Zonegran can cause heart issues leading to a heart attack. Once again, I called my doctor and told him that I wanted to get off of the Zonegran immediately. Not tapering me off. I want to get off of it right now! The nurse called me back and said that the doctor wanted me to go to the hospitals EMU (epilepsy monitoring unit) and get monitored for seizures while being rapidly taken off of the Zonegran and replacing it with Keppra at my request as I have taken Keppra in the past and know that it does not give me any ill side effects. To add insult to injury, the nurse relays a message to me that my doctor said, and I quote, “I seriously do not think it’s the Zonegran.” This is my current doctor and he has a very cold personality. He acts like he wants to get as many patients in and out of his office as quickly as he possibly can and shows no caring attitude what-so-ever. (Can you relate to this? I bet you can.) While I’m being taken off of the Zonigran in the EMU, he ordered a stress test and an EKG. (Echo Cardiogram) Thank goodness, all of my tests came back with flying colors and everything was fine which quite honestly, I was expecting but take nothing for granted. I’m grateful for every day and convey that to God in my prayers. Taking my self off of the Zonegran immediately stopped all symptoms of arm and chest pains. Before the tests were complete, one female doctor that I have never met in my life came into my room, pulled a chair up and spoke in a very soft voice as though she was going to tell me that I had one month to live and very softly asked me “how many flights of stairs can you run up without getting winded?” My response to her was “As many as you want me to!”
Before leaving the hospital, I told the doctor in charge of my care that I wanted to be put back on Depakote and taper myself off of the Lamictal as well.
Ladies and gentleman please...if you get anything out of this I want it to be this...always be yours and your childrens own advocate. You and only you know what your feeling.
Hospital Stays & Tests
Testing, Testing…1-2-3
My first and only pediatric EEG (Electroencephalogram) was done with old school technology where they took what I would call pins and stuck them in my head and earlobes. Every one that they put in my head was torture. My pediatric neurologist mistook my epilepsy for abdominal epilepsy as all of my EEG’s read normal as they do to this day and took me off of all my medications until I had a bad seizure soon thereafter at home. Via the doctors orders, my dad put me on a high dose of Dilantin. When we went back to see him a few days later he was embarrassed and said to my dad “I apologize. I don’t like to be wrong.” He then gave my dad his pager number and told him if he needed him for any issues about myself to page him. One time being confused as to why he gave my dad his pager number which was to be utilized in case of a bad seizure, I myself paged him for a medication adjustment which was not the protocol and he was in the middle of surgery. Yikes!
Today’s EEG technology is so advanced that you feel absolutely no pain as the probes are flat disks that are pasted to the head. Then your head is wrapped in a gauze bandage as though you are a mummy! There are also Neuro Caps that have the probes built in. Just slip the cap on your head and you’re ready to go.
I also had one Ambulatory EEG done which is where you clip a mini recorder to your belt and do your normal daily activities at home. It does not require a hospital stay. This, too, showed no seizure activity.
Over the course of the past two years, I’ve had a multitude of tests done. Most of which were EMU’s. (Epilepsy Monitoring Unit) Those are all done in the hospital while closely monitoring any seizure activity. I had my temperature and blood pressure taken twice a day like clock work along with my medications. (By-the-way, in case no one knows, I’m going to give you a heads-up. Hospital food is gross! I even ordered out a couple of times just to relieve the pallet!) Too funny.
During one of my hospital stays I get a knock on my door and in came this adorable Yellow Labrador Retriever. He smelt like “dog!” I got to pet him a little and chat with his owners who volunteered their time in the hospital with there dog. He even wore an identification tag!
Before I contemplated surgery, I was diagnosed with Temporal Lobe epilepsy. I did what I would call a battery of “pre-boarding” tests in preparation for brain surgery in case I decided to go through with it. In my opinion, these tests were done on me (and there were four I did and one I did not do) just to create income for themselves. After all, why put me through a battery of tests if I have not even made up my mind to go through with the surgery yet? These tests involved an MRI (Magnetic Resonance Imaging), a Pet Scan (Positron Emission Tomography) which I was not too happy about since it requires ingesting nuclear liquid, another EMU, an I.Q. test and a Wada test. I completed all of these tests except for the WADA test since I was having serious doubts about surgery at that point.
The reason behind the I.Q. test is that they want to compare your intelligence values before and after the surgery should you so choose to follow through with that option. See, it is not only because the surgery is supposed to stop the seizures completely. If that does not work out it is the hope of the patient to at least get the seizures down to less frequency then what was happening before surgery. And in turn allow the patient to decrease the medication as much as possible. (Some doctors like to keep there patients on a very low dose even after surgery with positive results.) Then you are given another I.Q. test approximately six months post-surgery. This allows them to compare notes to see how much, if at all, your memory and skills have improved.
All of my Neurologists were located in Westchester County, Poughkeepsie and Middletown, New York which is not too far from Monroe where I reside. My two pediatric neurologists were located in Westchester. My one adult neurologist was in Poughkeepsie and my present epileptologist (two more years of training in neurology specific to epilepsy) is located in Middletown, New York. Ironically enough, my epileptologist is the one I'm most unhappy with.
Beware of Doctors, Surgery & Implants
I’m going to give you some very important advice. I touched on this previously but I feel like I would be doing the reader a disservice if I did not expand on the subject.
There are surgeons lurking in the shadows…so to speak. I mentioned that I went through a battery of tests in contemplation for brain surgery. Now listen closely and read it again. My nurse up at my epileptologists office who is a really sweet lady said to me after I had my tests done just short of the Wada test…”Your going through with the surgery!”…with a smile on her face as though I had made my mind up to go ahead with the procedure which I had not. I told her that I had not made my mind up yet and that my epileptologist ordered the tests to be done in preparation for the surgery should I decide to do so. (In my opinion, he was giving me a gentle “nudge” to go through with the surgery after I thought about it.) She looked at me as if she was embarrassed because she was under the assumption that I was going through with the surgery. My point is this…Do not let anyone sway your decisions on what they think you should do. Doctors, neurologists, epileptologist and the like love surgery because they make a lot of money doing it. You are your own best advocate. Not your parents, not your grandparents, sister, aunt, uncle or cousin and most importantly, your doctor. You want your friends and relatives advice as I am sure we all do including my self and that’s important. But never let anyone make your decisions for you. The only people that are an exception to this rule are parents with children who are going through this decision-making process. And still…Please be objective!
Trials & Tribulations
The Big Secret
My entire life I always kept epilepsy a secret as though it would have been a crime to talk about in addition to its taboos and ridicule as a child. If I was in the company of people, especially when all of us were gathered around the dinner table where everyone could see me, I would always excuse myself from the dinner table and go into the bathroom until the seizure subsided which was rather quickly. A good example of what I just mentioned is when I came back from South Carolina. I was sitting at the kitchen table with my dad having dinner. All of a sudden I found myself “coming to” and realized I had acquired a seizure and just came out of it. I asked my dad exactly what had occurred during the seizure. He told me that I was picking at my shirt with my free hand and just aimlessly twirling my fork with the other. That’s when he recognized that I was not eating normally and observed me throughout the entire seizure.
I would have been completely devastated if anyone of an outside source, including friends had witnessed that. Ninety nine percent of my seizures are auras but just the thought of having that blank look on my face in front of everyone and getting embarrassed was horrifying. So I hid it as best I could and did a pretty good job at doing that, too. What’s worse is that most people, at least the ones I know, are ignorant on the subject and would have thought that something worse was taking place. If I gained any wisdom on the topic of epilepsy it is this. It’s the knowledge that a seizure looks worse than what is actually taking place.
I also took the precaution that if I felt a seizure coming on, especially if I was using something that could do harm to myself such as a tool or stove, I immediately stopped what I was doing until the seizure subsided.
When I did anything that required memory from my childhood right on up to adulthood, I always had a bad comprehension level due to the epilepsy in and of itself. I always assumed it was due to my medications entirely but that proved not to be the case although medications do play a roll in bad comprehension. (That’s why my school teachers thought I lacked completely on my level of intelligence since they knew nothing about my affliction.) Going back to my school days, my concentration in class was interrupted by being picked on by other students. I always kept in the back of my mind that I was going to get beat up on due to threats before class so my concentration on my school subjects was compromised.
I’ll Be The Judge of That!
Since my adulthood, I was always self-conscious of what others may have thought if they knew I was epileptic. This same mindset stood with me my entire life as I would always ask my self what people think of me as a middle aged adult still not married or even have a girlfriend by his side wherever he goes? Is he gay? Is he a loaner? I always felt down on my self and wondered why I could not do what the masses were doing. Find love in my life, get married, live in a beautiful house and have a family of our own. The thing is that I could do anything I wanted to do but chose not to because of the stigma attached to epilepsy that still exists to this day.
So if we all get just one thing out of this scenario, it’s that we, ourselves, have no right to judge anybody regardless of what we think. There is most likely a reason why adult children are living at home just like some of us are for a said amount of time. If we stop for just a moment and be objective, we will come to realize that judging anyone is never practical nor is it Godly. Just go look in the mirror and ask “do I want anyone judging me?” You already know the answer. We all do.
Later on in my adulthood I realized that, as I am sure the reader can relate to, I’m my own person who should not be concerned about what anybody thinks about myself, right? Well that also pertains to us reflecting our opinion on anyone else as well.
Wasn’t The Light Green?
Around 2001, I had my one-and-only auto accident due to epilepsy because of my “minor spell” as I appropriately called it. The seizure was more intense than an aura and in a matter of seconds, took my attention away from what I was doing. As I was approaching a red light, someone was coming to a stop right in front of me waiting for the light to change. I knew instinctively that she was there but did not know what to do. I stepped on the accelerator instead of the brakes. I told the police that I was changing my CD and did not see her! Even though I got away with what really took place, I refused to come to my senses and take responsibility for my life and the safety of others so I continued to drive. I drove from the age of seventeen.
Independence
When we're independent, we know that we will have more than enough money to pay our bills and buy some things we would like because we we're getting paid every week from our job or earning an income from our very own business.
Ironically, to this day, I do not miss driving. From the car payment to the insurance cost to the high prices of gasoline, car maintenance, public car washes as well as car products such as car wax and the like.
I do, however, miss my independence. Things like taking my self Christmas shopping, grocery shopping, going to McDonalds for my favorite coffee, going to one of my favorite Italian delis for the best bread in town, taking myself target shooting on a beautiful Autumn day and so many other things. (I miss the sport of recreational shooting. To be clear, the reason for this is not due to my epilepsy directly, but indirectly as I am unable to drive to and from the shooting range. And I am very self conscious about having someone drive me to and from the range I used to be a part of because it’s about forty minutes round-trip. I even used to reload my own ammunition.) It’s these little things which are blessings in and of them selves that I took for granted until I was forced to relinquish my driver license for my own good and the safety of others. I took everything in this God-given universe for granted and it was a shame that I had to “hit a brick wall” in order to realize this. It really got me down when I wanted to go somewhere on my own just thirty miles away and I couldn't because the price of a taxi would of been astronomical. Taking public transportation is frustrating because I had to wait. (Imagine that!) And if they forget to send a non-smoking taxi for myself, I had two choices. One would be to wait another fifteen minutes for another taxi or suffer through the nicotine stench and take the first one home. Things like that mad me realize how grateful I needed to be and am now since my accident. I became very close to God and appreciate everything he put me through because the bad things made me stronger.
When we're independent, we know that we will have more than enough money to pay our bills and buy some things we would like because we we're getting paid every week from our job or earning an income from our very own business. However, whether we're at the age of fifteen or ninety, we're used to having our freedom and realize at this point in our lives that we were given the most amazing gifts we could of ever acquired, we come to realize that yes indeed, we take everything in our lives for granted. What's more queer about this scenario is that the old clique that goes “the best things in life are free.” Well it's true. And to me I regret not enjoying the beautiful Autumn trees and wind on my face and the sunshine when I could because of always being in a rush to get to some fruitless destination.
What bothers me more on a personal level is that there is no personal or intimate time to spend in a car or any public form of transportation with the one we love. Everything is seen, heard and emotionally felt by the neutral party in the drivers seat. That, too, is something that was taken for granted.
Dinner and a Movie?
As far as girlfriends go, I’ve had very few as I was afraid of rejection and being judged. There are a lot of (forgive me ladies; but I’m speaking from a man’s point of view, of coarse) shallow and short-sighted women out there. I was always one to gravitate towards on line dating because it was my “safe zone.” If it bothered a lady that I had epilepsy due to my profile stating so, there would never be a response. Did I feel bad? To an extent but the real-life rejection would have been horrifying. I was, to this day, never able to ask a lady out in real life even if I knew she was flirting with me because I am so self-conscious due to being rejected. I gravitate more towards the on line dating scene.
My one and only long-term relationship was with a really sweet lady that I met the evening she moved into the co-op across the hall from me. She knocked on my door to borrow a hammer so she could unpack. Being the introvert that I am, I asked her out by leaving a greeting card by her door. She accepted my invitation but I never divulged my epileptic affliction until three months into the relationship for fear of the same thing…the dreaded rejection as well as testing the waters as to whether or not she was dating me for myself or would have rejected me immediately without getting to know me. This is not a healthy way to live but it’s the reality of a lot of epileptics. I only started divulging this information up-front over that last two years via on line dating and the results show how shallow people can be about something they are not educated on.
Now my life is like a double-edged sword because even though I am starting to talk about epilepsy after a long forty-one years of silence, habits are hard to break and take approximately two weeks to form. The point I am making is that I still have a hard time making eye contact with women in public to this day. And not to brag but woman’s eyes are all over me in grocery stores. And I psychologically have no way of gaining the confidence of making and keeping eye-contact with any lady other than the elderly because they, obviously, do not hold an interest in dating me.
Income
After being diagnosed with grand-mal seizures back in 2007 when all of the walls came tumbling down, I had to stop driving and therefore, go on disability due to no transportation to and from work. When I got paid through Social Security on the 3rd of each month, ninety percent of the money had already been allocated as to how it would be used with only a little left over. Prescription drugs, doctor visit co-pays, food, vitamin supplements, etc. Sometimes the 3rd of some months would fall on a Saturday or a Sunday. If this did occur, Social Security would always pay me on the Friday before the third. Not the Monday after.
I always grocery shop on my computer and have it delivered right to my door which is a God-send since I would have to inconvenience someone to take me shopping if this option was not available. I always shop on the morning I get paid just to be sure the money is there. Common sense, right? Well this particular holiday week I wanted to get my groceries delivered in the morning so I decided to place my order the day before they were to be delivered with some reservation that my money may not be in the account that following morning to pay for my food. On July first, which landed on a Friday, I looked in my bank account online at 2am and realized that my money had not been deposited by Social Security. So I proceeded to call my bank and asked them when the money would be deposited; Friday or the following Tuesday since July 4th was that Monday. The lady told me that the updates are completed by no later than 6am. Sure enough, I set my alarm and checked my bank account at 6am and my money was indeed deposited.
South Carolina… What Was I Thinking?
Leave My Problems Behind? Yeah Right!
Around the beginning of 2007, I had decided to move down to South Carolina. I was doing it for all the wrong reasons and my anger was flaring due to where my life was headed. Nowhere! And nowhere fast. I was fed up with my entire family life because there was no structure with my family. I was also fed up with taking countless amounts of medications for my epilepsy that was giving me absolutely no results other than side effects so I took myself off of all of them without the assistance of my neurologist at the time since I knew he would not comply. I had a minimal amount of money in my bank account and still thought that somehow I would be able to go down to South Carolina and make a life for myself. (To this day I still do not know why I picked South Carolina as I like Florida better.) I was going to build a brand new home and get on with my life. Little did I know at the time that I was living a pure fantasy. I was invincible and nothing could stop me. Beyond that point, after ten months down in South Carolina, I ran out of money. This was just the beginning of what was waiting around the corner.
I called my dad and told him my situation and he assisted me to get back home. (Funny how we say “home” when things don’t work out!) My dad gave me the money to ship all of my belongings back home to New York. I drove myself back with the car I had purchased down in South Carolina.
It Must Be Short-Term Memory
After arriving back to Monroe I immediately acquired a job driving an armored car. I acquired my hand gun permit back in January of 1992 as well as worked multiple armored car jobs in the past so I was fully qualified.
One day about a month into the job, I had dropped my partner off at a stop as he was the messenger. (The person that delivers and picks up monies from specific drop-off points) When I awoke I realized that I was in the passenger’s seat and my partner was driving. I had no clue what happened and was so confused that I did not even ask my partner what had happened. My boss called me into his office after arriving back at base and asked me to go for a physical to make sure everything was alright but allowed me to continue working in the interim. With that, I went home that evening and went through my normal routine.
The following morning is when my world started to implode on me and I would never be the same mentally again…in a very positive way! I was on my way to work and, once again, awoke not knowing what had happened. Only this time with my personal car smashed up against a tree and a New York State Police Officer standing by my side with the driver’s door opened. From what I remember, I do not recall divulging to the police that I have epilepsy. I called my job up after going home with my dad and my boss asked me “Alexander, are you epileptic?” I told him yes and asked him how he came to that conclusion. He said his sister was also epileptic. (This is so important to take note of because it tells us that we are far from being alone. Epilepsy affects quite a few people in society but we are too ashamed or embarrassed for fear of being ridiculed by the vast majority.)
The Walls Came Tumbling Down…In a Very Good Way
Dependent? No Way!
I became home-bound directly after my accident as I could not drive. I had my dad take me everywhere from the grocery store to my doctors appointments, to the pharmacy to the deli. And it started to take its toll on me. My dad, due to my late mother’s demise, was enraged with frustration and his built-up anger showed in his driving as well. It became uncomfortable for me to drive with him as he was unsafe on the road.
Soon afterwords, I started to keep a seizure diary. I also became very self-conscience of what people that lived around me in my neighborhood would think since I was driving when I came back to New York and ceased driving after I had my accident which, of coarse, they knew nothing about. I was afraid of what they would ask me in the way of why I was not driving so I stayed out of sight. Even when it came to getting the mail and putting the trash out, I waited for night fall. I was virtually holding myself hostage in my own home.
I became very depressed for the very first time in my life and the thought of never being able to lead my own life was devastating. Even my dad said to me from seeing my depression “I want the old Jr. back.” He would also state to my neurologist in the past “If I could take it away from him, I would.”
Little did I know I was about to become a much better person and help thousands of people due to Gods divine plan for myself. I realized what was happening and took total comfort in this. I was slowly but surely being torn down by God and re-built into the person he wanted me to become. For the very first time in my life, I became very religious. I started to read the Bible on a daily basis. I memorized The Ten Commandments, memorized three pages of quotes out of the Bible, prayed two times a day and prayed on my knees in the evening just before I went to bed. I started to appreciate Gods bounty. The simple, precious gifts God has given us all that we, including myself, take for grated every day. I started to appreciate the birds, the trees, the wildlife, the oceans, the streams and the lakes, the stars, the sun, the moon, my family and friends and most of all…God! It’s amazing how much I saw of myself when I read the Bible. It was like I was looking into a mirror.
After my accident, I soon applied for disability which bothers me to this day because I am a more-than-capable individual. After being accepted for disability payments, I also inquired about transportation services via Medicaid. To my delight, they provided me transportation, free of charge, both to and from any medical services I needed. This allowed me to go to my epileptologists office by myself and avoid having to deal with my dad’s road rage. This also freed up his time as well. I was also able to have my groceries delivered right to my door. (Not a benefit to Medicaid but allowing me to acquire food without the assistance of my dad when he was out of town) These benefits were a life-saver for a few reasons. My dad went down to Florida quite frequently to spend a month or so at his home. And I did not have to feel guilty about him waiting on me in the parking lot of the grocery store until I finished my shopping as well as waiting on me when I went to my epileptologists office. My dad never said anything negative to me and was always supportive but it was instinctual that I was cramping his style of his normal daily schedule. Plus this left his mind clear that I was able to live at home without his assistance when he traveled. Unfortunately, this benefit did not exist with Medicare once it took the place of Medicaid.
If I had to go any other place instead of my doctor’s appointments, I called a taxi. I always had the same lady pick me up as she was super-friendly and nice to talk to. (I think she just wanted a good tip) This also made the time go by faster. I would use taxi service to go to the bank and pick up my prescriptions. I always chuckled because even though the taxi service had good rates, I spent more money on that than I did for my medication co-pay!
I Hear A Rattle
When I went on disability due to epilepsy, my entire world changed in many ways as discussed in this book. However, one of my biggest issues was lack of funds. When someone is on disability, the monthly income is limited to a fixed amount per month. What's worse is that I got a decrease after a year for some reason. After a while, I was scraping the bottom of my pockets just for some change to tip the lady who delivered my groceries with. Talk about embarrassing when you spend over one hundred dollars in food via a debit card but do not have five dollars in cash to tip the delivery woman with.
At the beginning of each month, I would go on line and spend nearly one third of my monthly income on things I've been waiting to purchase for three weeks. Whether they were for business or for myself. This was my way of “living it up” for a few on line purchases that virtually made me excited to receive when the delivery man finally brought them to my door. In the past it would of been “I get it when I get it.” Now it's like “another day! When are they going to deliver my stuff already? It's been three days!” You can't miss what you've never had but in this case, I miss my cash and pocket change. Every red cent!
Craigslist became my friend because I could sell items right out of my garage that I no longer needed. When someone off of Craigslist buys something from you, they come to your home to pay you in cash and pick the item up. It was the perfect solution to extra pocket money. I had a lot of items to sell but only a few actually sold. Society thinks that just because something is on Craigslist that they can steal it from you. I heard of giving people a bargain but some people are totally unrealistic. They think they are buying a used car!
One of the worst aspects of being put on disability is knowing in the back and forefront of your mind that you want nothing less than freedom...financial freedom. This is where you become vulnerable so please take notes. If you are like myself, you are tired of going to what we call the J.O.B. (Just over broke) because of never being paid what we are worth. This is endemic of all people with an entrepreneurial mind-set. Except now we have a reason for pursuing our goals. However, we are not seasoned on doing our “homework” to be sure we are investing our time and money into a company that is legitimate.
What Was That?
I never acquired a grand mal seizure until I got back home from South Carolina. However, I had a multitude of them while staying with my dad. My family became very concerned as to what was triggering them. My first incident since arriving home was when I noticed my brother-in-law putting my jacket on when I “came-to.” I had no clue as to what was going on at all. He, my dad and my oldest sister took me to the hospital. I remember nothing more about that day at all.
My next Grand Mal seizure happened one evening while I was on my computer. I awoke and found myself lying face down on the floor out of breath and moaning. I felt something on my face and it was my dad wiping blood off of my face that came from my forehead. Here’s a little foot note for those who have never experienced a Grand Mal seizure: After you “come-to,” you are so out of breath due to the deprivation of oxygen to the brain that you feel like your heart is going to come out of your chest because it is beating so fast. After I got up on my feet, my dad guided me to the couch and tried to speak to me. I was unable to think straight and had a hard time gathering words to form a sentence. After a few minutes, I slowly got up off of the couch by myself to go to the bathroom and my dad jumped up, grabbed me by my arm and said “are you alright?” I said yes and that I had to go to the bathroom. But in actuality, I just wanted to go look at my face and head in the mirror. My face looked like someone had beat the crud out of me from rubbing my face on the rug; my right knee was bruised and my head had a gash in it from falling on the corner of my computer desk tray.
Do the neighbors know?
After arriving home from South Carolina and getting into my auto accident with my personal car on my way to work was a turning point that became a struggle to this day. That struggle is always worrying about what my neighbors were thinking when they saw me home day after day. Now, my neighbors may not even notice that I am always home. Nor do most of them even know that I have epilepsy since most of my neighbors are new to the neigborhood. But the psychology behind my own thinking is that since I m home bound due to epilepsy, I do not want them asking me whay I am always home or if I work a job. This is probably the furthest thing from the truth as far as what they are thinking but this self-inflicted stigma has limited me to some extent.
Even when it comes to house chores. I always waited until night-fall to get the mail or to put the trash to the curb so I would not come into contact with any of my neigbors and give them a chance to tap into my personal life. I started having my lawn mowed and driveway plowed by an old school-mate to avoid being seen.
Take Good Care of Yourself
I became a very good cook and baker after I became home-bound. I was always able to cook when I lived on my own. I even managed to woo my ex-girlfriend with some really nice dishes! However, before moving back to New York, I had never baked. Now I make a really good cakes, pies and cookies. (My favorite is apple pie.) The main reason for this is that I do not eat preservatives. I also drink alkaline water and virtually live in the produce isle and buy organic food. If I choose to eat any sort of chicken or lamb, it is always grass-fed and never soy-fed. See http://dogtorj.com/ for specific details.
As far as exercise goes, I do a pretty good amount on a weekly basis including fast walking seven days a week (Done in my garage so I do not have to bother my dad,) sit-ups, push-ups and weight lifting three times a week… occasionally missing a weight lifting work-out due to time constraints. When I do my weight-training, I will never attempt to do a bench press when I feel the onset of a seizure for fear of the weights dropping on my neck which would probably prove fatal since I am lifting over two hundred pounds and do not have a spotter.
So as you can tell, I take very good care of myself while also being very cautious. I never try to defy what the outcome could possibly be. And that is where parents have to become very cognizant since children consider themselves invincible.
Cold is Safer Than Hot
After I prepared Cream of Wheat for lunch one afternoon, I went to sit in my living room chair where I always have my meals, said Grace and then started to eat. All of a sudden I realized that I had another seizure; not a grand mal; but a seizure that made me black out for a moment just like I did on the job. After I awoke I realized that I had three of my fingers on my right hand submerged in the bowl of Cream of Wheat that had just been taken off of the stove. I have no clue how long I had my fingers in the Cream of Wheat after I blacked out but I know one thing for sure; And that is when you take Cream of Wheat off of the stove, it’s over one hundred degrees and very sticky; Sticky enough to stay on my fingers when I took my hand out of the bowl. I immediately knew something was very wrong because of the excruciating pain so I put my fingers under cold water and called a friend as my dad was in Florida at the time. She took me straight to the hospital emergency room. On the way to the hospital, I told her to not call my dad and tell him about the incident. She asked me why and I told her because I did not want him to worry as there was nothing he could do anyway. They diagnosed it to be second degree burns, bandaged them up, gave me some extra bandages and cream to take home and I was on my way back home. The worst part is they asked me if I was suicidal and needed my insurance before treating me! The next morning I almost fainted when I saw what one of my fingers looked like. It looked like a mini inflated balloon that took up the entire pad of my finger filled with liquid like you would see on a water blister when using a rake with no gloves; but ten times as big!
Do You Believe?
Since the time I was home from South Carolina, I've had four angelic experiences. I’ve never had anything like this happen to me in my entire life so I knew these experiences had everything to do with finding God and allowing people and pets from my past back into my life. I truly believe they were watching over me due to my situation at hand.
“Visited By Sam”
On May 18th, 2008, I had gone to sleep at around 12:30 AM. I heated a half of a pizza for myself that I had made a few weeks earlier and since it was my day off when I allow myself to eat anything I want, I treated myself to a late-night snack. I was tossing and turning later that morning when I went to sleep and could not get comfortable. I had a strange feeling come over me at one point. I decided to turn over and face the left side of my bed where I would enter and exit. To my amazement, my late dog, Sam, a Golden Retriever that my family had for 13 years (October of 1978 – September of 1991), had his head resting on my mattress. I saw his face in silhouette and reached out to pet him as I always did when he was alive. I proceeded to ask him if he wanted to come on the bed. He then jumped up and laid down on the right side of me. He had his head facing away from me and turned on his side to fall asleep. I pet him a little and proceeded to go back to sleep. Even when I went to slide my hand under the covers, Sam stopped me from moving as his body was next to me. A minute later, Sam started to wag his tail while still lying on his side. I asked him what the matter was and he proceeded to jump off of the bed and walked towards my bedroom door which was opened. I followed Sam out of the bedroom and he stood at the door that led to my dad’s office with his tail still wagging. I opened the door for us and followed Sam out towards my dad’s office. To my surprise, my late mother was looking in my dad’s coat closet. I asked her what she was doing and she replied “Oh…just looking around.”
At this point, my heart was beating so fast that I felt like someone was pulling it out of my chest. I found myself lying back in bed and felt like my chest was going to explode so I proceeded to get out of bed and head upstairs to call on my dad so he could take me to the hospital. I went up approximately 3 steps and immediately woke up and found myself in bed. I then got out of bed, turned my TV on and went to sit on my couch. I proceeded to cry from the event that just took place. I realized that this was not a dream. Instead, this was an experience of my dog Sam’s spirit, his angel, coming back to visit me. I never felt such a true connection from the afterlife.
When I met my dad upstairs in his kitchen for breakfast later that morning at about 7AM, he immediately knew that something was on my mind. As I told him what happened that evening, I began to get extremely emotional and was amazed at the entire recollection of events that had taken place.
My first dream about Sam (Not an angelic experience), was when I was sitting by my desk with my feet up. I looked to my right and Sam was sitting right there by my side with his chin on my leg as though he wanted to be pet. (How ironic…Sam always put the bottom of his chin on me for attention. Then when I started to pet him he’d pick his head off of my leg.) From what I remember, I believe I reached out and began to pet his head. I now have Sam’s urn on my window sill as we had him cremated. I can actually stand by Sam’s urn and my chin fits perfectly on the top of his urn without crouching
My other dream about Sam is when I was doing lawn work and he would not go inside but instead, sat in the garage never taking his eyes off of me as he did when I had a seizure in front of him.
“To Britain and Back”
On July 17th, 2009 at about 4:45 in the morning, I had my second experience with angels. I had been dreaming that evening. Nothing too big. One dream I recall was helping a young lady clean a kitchen. I was actually getting in her way after a while so I left. During the evening while I was sleeping, I had woken and my neck was hurting so I decided to roll my pillow up and stick it under my neck for better support. This meant that I would have to sleep the balance of the evening flat on my back with my toes straight up in the air under the covers.
The setting was in a hospital where I overheard the nurse’s station receive a phone call for me and I decided that I did not want to take it so I faked being asleep. When the nurse came to give me the phone, she kept calling my name but I did not answer to avoid taking the call. All of a sudden I felt the nurse nudge my two big toes and whisper to me in a British accent, “Mr. Lodi.” My only response to her, because I could hear myself, was a slight groan. I then felt, who I assumed was a nurse, nudge my two big toes very gently once again and whisper to me, “Mr. Lodi.” I then groaned to this voice once again, feeling my mouth wide open. At this point in time I was no longer in a hospital but, instead, back in my own bedroom. That is when I had this most amazing experience and saw what looked like the outline of a lady with a bun in her hair. Kind of like a women will do to keep her hair neat. Then I could almost swear I heard her try to say something else but I could not understand it. Then I saw this smoke-like image come before me and then she was gone. This upset me a bit because as she was disappearing, I wanted to ask her what she had just said. Through this entire experience, I actually felt like I was paralyzed.
I then woke to my real state of being and shortly thereafter realizing what had taken place, put my lamp on while still lying down and relived the entire experience over and over again in my mind. As I was looking off to the left side of my ceiling thinking of this awesome experience, I shed but one tear as I know through my strong Catholic faith that angels do exist and I was looking forward to my next “angelic” visit.
“Carried by God”
Back on August 6th, 2009 I had my third Grand Mal seizure and believe that I had an intervention with God and was carried by him but could not remember the experience ever since coming out of the seizure. That is the day I believe the experience to have occurred. Before I realized what the experience was, I found myself on the floor sandwiched between my coffee table and my couch due to the Grand-Mal seizure. No one was home to help me so this is what makes this experience so awesome and realistic.
As the days, weeks and months ahead progressed beyond the seizure I had acquired, I kept getting these intermittent flashbacks of that day but could not gather the entire scene in my mind no matter how hard I tried. This was really nagging at me but I just let it go. I only had one of my one minute seizures which cause me to zone out on August 11th, 2009 beyond the grand mal seizure and that happened on August 6th, 2009. As I was typing an Email to my friend, I stopped and immediately jumped six feet back in my desk chair as I realized the amazing intervention that followed the grand-mal seizure on August 6th. I put my head down, stared at the floor and visualized God carrying me on the sand. I started to cry right there in the chair and realized that everything…as I already knew…was going to be just fine. God was carrying me through that entire seizure as he always is by my side. I then got up from my chair, went in my bedroom, shut the door, put my light on, got down on my knees and started to pray really hard. I even prayed for God to take away my friends seizures if that was a sign that I had become seizure free. No matter what, I knew everything was and always is okay because God is always by our side and watching over us…our entire universe!
“Hand of Mom”
I did not have the best relationship with my mother while she was alive. We always had enthusiastic battle with each other and got under each others skin. However, when times were tough, we were there for one another. It’s just a shame it took times to be tough for us to get along.
On March 14th, 2010 I had dreamt of myself looking at a piece of furniture…just the corner of the furniture where the two pieces of molding meet and are nailed together. I am not sure why, but I made the correlation that it looked like my parents’ furniture other than the fact that the furniture in the experience was much lighter in color.
In an attempt to remove one of the nails from the furniture myself, all the while only seeing my hand and the corner of the furniture…nothing else…I realized that one of the two nails was missing because I could see daylight through the hole. I then began to take the other nail out by hand and realized that the nail was not a nail…it was a wooden dowel stained in the same color as the furniture. When I almost completely finished pulling the dowel out of the furniture, my late mothers hand…and only her hand…reached down and very softly grabbed my finger or fingers (I am not clear on this point) that were holding the dowel and held them until I awoke.
This reminds me of how a newborn child reaches out and grabs their parent’s finger because there hand is too small to hold the entire hand. It was a strange but somehow comforting experience to realize my late mother was watching over me. It brings me comfort to know that every time I see 9:07 on my clock (The month and day of her birthday)…and I see this quite often…it is indeed my late mother watching over me. In fact, just as I punched the first letter “H” to write “Hand of Mom” for the title, the time read 9:07! Angelic or coincidence? I do believe! I just realized that I finished this writing at 9:41! My late mothers’ birth month and year!
Visited by Mom:
Saturday - June 22, 2019
I had a rough morning yesterday starting with a rude comment from a guy on Facebook which instituted a very bad anxiety attack on myself. I’ve never suffered such high anxiety from something that was meaningless from a person I don’t even know. I wound up deleting his comment and blocking him from my profile comments. I also got off of my computer, went on my tablet and started reading the Holy Bible on my tablet. Afterwards, I spied the book from Joyce Meyer, “Battlefield of the Mind “ on my living room end table and started to re-read that book. It really resonated with me in where I am in my life and I felt a kind of peace come over me. I think God was talking to me and was finally able to get my attention. That evening I went to bed in fear of having a nightmare, propped myself up on two pillows and left my lamp on. I then, at 11:20 PM, had an angelic experience where my mom came to comfort me. I was sitting on the foot / pillow of my sofa next to the door when I realized I was hugging mom tight as she was laboring her breathing. The next thing I knew, I was back in bed and felt her kiss me on my lips and then she disappeared. I opened my eyes wide and realized that for the first time since mom passed that she came to visit me directly. We may have had a lot of differences here on earth but I always loved you, mom. I always will. See ya soon up in Heaven. Keep watching over us all. 💗🙏🏻🙏🏻💗
Revisited by Sam:
Tuesday - June 2, 2020
About 8:50pm, I had a beautiful experience with my beautiful Sam while I was taking a nap on my sofa in the basement of my dads house. We were upstairs in my dads family room, I do believe and there were a bunch of pre-wrapped toothpicks in clear wrappers on the floor. I turned my back to get a broom to clean them up and to my surprise, Sam came to my side with all of the toothpicks in his mouth, tail wagging to acknowledge he was helping me; not stealing them or chewing on them. I thanked him. I then saw Sam get one more toothpick off of the floor and deposit it directly into the garbage can. Sam then walked over to me, I knelt down, hugged Sam with his face nuzzled into my chest and I said “l love you so much, Sam. I love you so much.” Sams tail was wagging very slightly as if to acknowledge that he knew that and that he loved me, too. I do believe this was a beautiful angelic experience. Thank you so much, Sam. I will always love you.
These experiences mean something to me and are very sacred. These experiences happened…and I cannot emphasize this enough…after I got back to New York. This is when my transformation began to take place. In all of my previous forty years of my life on Earth, I have never had an angelic experience. I knew from these experiences that from now on…everything will take care of itself as long as I continued to believe in my faith. And I do!
My Take on Society
Are We An Experiment?
Did you ever feel like you were nothing more than an organized experiment for doctors to work on in order to better understand epilepsy but don’t quite know the answers on how to effectively treat it? This pertains to some things I’ve already mentioned such as doctors advising implants and surgery before we even do any other research on epilepsy ourselves.
This reminds me of when I returned back to New York from my brief stay in South Carolina. My dad never told me he was having heart problems. At any rate, his doctor recommended surgery to unblock his arteries. He went right along with this and immediately had his chest cracked wide opened. Let’s look at this from a realistic standpoint.
My dad was having minor side effects for a couple of weeks pointing to a possible heart problem before deciding to see a cardiologist (And this happens ALL the time because it is human nature for human beings to deny that there may be something wrong) and was told to get surgery immediately the coming week.) If my dad had gone to the cardiologist the very first time he began to get discomfort in his chest, (two weeks before his initial visit,) what do you think would have been the cardiologist’s recommendation? He then would have been into surgery two weeks before even deciding to get checked out. He was still alive, wasn’t he?
Did you ever watch a popular television series as well as other medical shows when the doctor declares that a person has a specific number of months to live and the person is still alive…years later? Then they have the audacity to declare that “it’s a miracle” just to get out of what they misdiagnosed. Why? Because the standard “medical book” is followed to the letter!
My point is this, ladies and gentleman and I will say it until you get sick of hearing it. Be your own boss and your child’s advocate when it comes to epilepsy and trust your gut instincts. Doctors love surgery because it makes them wealthy. Just like Oncologists love Radiation and Chemotherapy despite that they have a very low success rate. (Another subject entirely but you get the picture…I hope.) It’s not rocket science once it’s learned and it’s up to all of us to take a stand. Doctors will NEVER recommend naturalistic remedies simply because there is no money in it for them and it’s not “proven.” What a joke!
When it comes to people in society at large, we need to educate them on epilepsy and that there is nothing to be scared about when a seizure occurs. The trick here is for them to recognize a seizure and to know how to treat someone who may be having, for instance, a Grand Mal seizure.
The absolute best part of those days was with my late dog, a Golden Retriever named Sam. He was the best and as all dogs do, gave me unconditional love no matter what. No judgments but pure love. A lot of times when I had a seizure, I would look around myself and Sam would be sitting right by my side as though he knew instinctively that I was sick. Sam loved to run, jump, play and roll in the snow. He made me freeze just watching him! He loved it. I would actually get scared in a good way when Sam went wild by running so fast that his rear paws went in front of his entire body as he was running if you can picture this. He must have been doing forty miles per-hour. So I knew that if he ran into me which by the way, he was heading straight towards me, that he would just bowl me over so I always crouched down when he chased me like that. Sam absolutely loved Milk Bones and Rawhide chews. I could make him bark for one when I teased him. When my dad and I went to a breeder nearby in Middletown to purchase Sam back in 1978, I picked him out. He was the only one sleeping and the darkest of them all. It was love at first site! My dad and I were hysterical laughing because on the way home from picking Sam up, he was chewing on my dad’s steering wheel. My dad asked him if he wanted to drive! Too funny. Sam also loved to chase his tail. I had thirteen great years with Sam. He supported me throughout my childhood and I am forever grateful. I now have Sam proudly displayed on my window sill…still watching over me.
I'll Have What He's Having!
Okay, we all know the drill. Mom makes an appointment to see our favorite doctor due to a soar throat and low grade fever. While we are waiting for that magic hour to arrive, I am on pins and needles as though I'm being taken to the electric chair! So mom ties me down in the car (figuratively speaking) and gets me to the doctors office...in one piece. We proceed to check in and sit in the waiting area all the while asking my mom if I am going to get a shot because I do not want one. She always told me no but I knew as soon as my pants got taken down and my mom said “he just wants to examine you”...that it was coming. The dreaded spear. WHAM! A Penicillin shot right in my behind to fight off any possible increase in fever as that seemed to be the cause of a bad seizure. As soon as I was checked for an infection in my throat...better known as a soar throat, that is what depended on whether or not I received a shot. Since, as most if not all of us know...a fever is an automatic defense mechanism for children as that is what kills off infection since the immune system is not yet optimized. Hence the shots.
Back when I had acquired epilepsy, I went on one of my doctors visits with my dad. He said that I would not even let the doctor examine me at all. I got so scared that I would literally stand in the corner of the office crying and wiping both arms up against my nose because of all the tension giving me a runny nose and kept saying “no” to my dad and the doctor. That day, my dad just took me home because of being in such a rage and being so scared. There was no way the doctor could examine me.
Blood Tests
I always had these routine blood tests done at my doctor’s office to read my medication levels by a very nice nurse. (Funny how we remember things like that. I think I had a crush on her since she was so cute!) I actually have a scar on the tip of my index finger from all of the blood tests I had done during my childhood. I then got my choice of a lollipop. What makes me laugh about these visits exclusive to just getting a blood test is that my doctors office had two waiting areas. One for “sick children” and one for “well children.” Both sections were about ten feet away from each other located in the same room! That's the equivalent back in the day when restaurants had both smoking and non-smoking sections!) Seriously...does that create a barrier of defense? I think not.
Afterward, my mom and I were off to the pharmacist where I would then finagle my way to even more candy. The nurse wrote my mom two prescriptions. One for Phenobarbital and one for Dilantin which were my childhood drugs. The Dilantin tasted like spearmint since it was supposed to make children think it was candy. The Pharmacist stood so short; you could hardly see his face over the counter! While we were waiting on my prescriptions to be filled, I would always bug my mom to buy me Pez which was one of my favorite candies. I even got a five-pack of refills! I think I have one or two of those dispensers hiding away some place. Fred Flintstone was one of my favorites. Once in a while I got my mom to buy me an Almond Joy in addition to the Pez. I told you I would finagle her!
Later on in my adolescents, I graduated from pricks in the finger to getting a one inch needle stuck in my vein via my right arm. I am very muscular and one time in my adulthood after making the routine “fist” to find the vein, the nurse taking the blood felt my forearm (in a professional manner) and blushed afterwords. I was hysterical laughing to myself!
Medications
I’ve been on a lot of anti-epileptic medications but never any improvement. It’s safe to say that I’m a jack-of-all-medications; master of none! I’ve been on my fair share of anti epileptic drugs such as (not in any specific order) Depakote, Dilantin, Felbatol, Frizium, Keppra, Lamictal, Neurontin, Phenobarbital, Tegretol, Topamax, Trileptal, Vimpat, Zonegran. These medications had some annoying effects on me such as blurred vision, not being able to steady myself, dry-mouth, disruptive sleep. This is partly my reason of not doing well in school. I have learned through my own research that loss of memory and a very low comprehension go hand-in-hand with epilepsy.
I highly recommend doing research on any kind of medication you or your child is being put on. My epileptologist wanted to put me on an “experimental” drug if I would comply. It's very scary to think about what the potential complications as well as side effects can be with prescription drugs.
A Heart-Attack? It Can’t Be!
I do my best to try and keep up with research on medications that I want to try and what the side effects are for both the short term and the long term. A few of my medications gave me the run-of-the-mill side effects such as being unsteady and having blurred vision.
A few months after being put on Zonegran as another add-on drug during my adulthood, I began to get out of breath after twenty minutes or so of fast walking. Since I exercise every day this was not a normal reaction. I always had the occasional heart “thump” as I would call it but now I began to get winded on a daily basis if I increased my heartbeat in any way and would get minor discomforts in my back, tightening in my chest and pain down my left arm. These are all signs of a heart condition. At that time I was also being introduced to Vimpat which my friend takes presently. I called my epileptologists office (I have no faith in doctors…Period!) and he had the nurse call me back to take me off of the Vimpat immediately. That adjustment did not correct the issue so I did even more extensive research on the Zonegran I was presently taking before being introduced to Vimpat as an add-on drug to Zonegran. I was confident that the Vimpat was not the cause.
Sure enough after digging really deep and doing more extensive research, I read that Zonegran can cause heart issues leading to a heart attack. Once again, I called my doctor and told him that I wanted to get off of the Zonegran immediately. Not tapering me off. I want to get off of it right now! The nurse called me back and said that the doctor wanted me to go to the hospitals EMU (epilepsy monitoring unit) and get monitored for seizures while being rapidly taken off of the Zonegran and replacing it with Keppra at my request as I have taken Keppra in the past and know that it does not give me any ill side effects. To add insult to injury, the nurse relays a message to me that my doctor said, and I quote, “I seriously do not think it’s the Zonegran.” This is my current doctor and he has a very cold personality. He acts like he wants to get as many patients in and out of his office as quickly as he possibly can and shows no caring attitude what-so-ever. (Can you relate to this? I bet you can.) While I’m being taken off of the Zonigran in the EMU, he ordered a stress test and an EKG. (Echo Cardiogram) Thank goodness, all of my tests came back with flying colors and everything was fine which quite honestly, I was expecting but take nothing for granted. I’m grateful for every day and convey that to God in my prayers. Taking my self off of the Zonegran immediately stopped all symptoms of arm and chest pains. Before the tests were complete, one female doctor that I have never met in my life came into my room, pulled a chair up and spoke in a very soft voice as though she was going to tell me that I had one month to live and very softly asked me “how many flights of stairs can you run up without getting winded?” My response to her was “As many as you want me to!”
Before leaving the hospital, I told the doctor in charge of my care that I wanted to be put back on Depakote and taper myself off of the Lamictal as well.
Ladies and gentleman please...if you get anything out of this I want it to be this...always be yours and your childrens own advocate. You and only you know what your feeling.
Hospital Stays & Tests
Testing, Testing…1-2-3
My first and only pediatric EEG (Electroencephalogram) was done with old school technology where they took what I would call pins and stuck them in my head and earlobes. Every one that they put in my head was torture. My pediatric neurologist mistook my epilepsy for abdominal epilepsy as all of my EEG’s read normal as they do to this day and took me off of all my medications until I had a bad seizure soon thereafter at home. Via the doctors orders, my dad put me on a high dose of Dilantin. When we went back to see him a few days later he was embarrassed and said to my dad “I apologize. I don’t like to be wrong.” He then gave my dad his pager number and told him if he needed him for any issues about myself to page him. One time being confused as to why he gave my dad his pager number which was to be utilized in case of a bad seizure, I myself paged him for a medication adjustment which was not the protocol and he was in the middle of surgery. Yikes!
Today’s EEG technology is so advanced that you feel absolutely no pain as the probes are flat disks that are pasted to the head. Then your head is wrapped in a gauze bandage as though you are a mummy! There are also Neuro Caps that have the probes built in. Just slip the cap on your head and you’re ready to go.
I also had one Ambulatory EEG done which is where you clip a mini recorder to your belt and do your normal daily activities at home. It does not require a hospital stay. This, too, showed no seizure activity.
Over the course of the past two years, I’ve had a multitude of tests done. Most of which were EMU’s. (Epilepsy Monitoring Unit) Those are all done in the hospital while closely monitoring any seizure activity. I had my temperature and blood pressure taken twice a day like clock work along with my medications. (By-the-way, in case no one knows, I’m going to give you a heads-up. Hospital food is gross! I even ordered out a couple of times just to relieve the pallet!) Too funny.
During one of my hospital stays I get a knock on my door and in came this adorable Yellow Labrador Retriever. He smelt like “dog!” I got to pet him a little and chat with his owners who volunteered their time in the hospital with there dog. He even wore an identification tag!
Before I contemplated surgery, I was diagnosed with Temporal Lobe epilepsy. I did what I would call a battery of “pre-boarding” tests in preparation for brain surgery in case I decided to go through with it. In my opinion, these tests were done on me (and there were four I did and one I did not do) just to create income for themselves. After all, why put me through a battery of tests if I have not even made up my mind to go through with the surgery yet? These tests involved an MRI (Magnetic Resonance Imaging), a Pet Scan (Positron Emission Tomography) which I was not too happy about since it requires ingesting nuclear liquid, another EMU, an I.Q. test and a Wada test. I completed all of these tests except for the WADA test since I was having serious doubts about surgery at that point.
The reason behind the I.Q. test is that they want to compare your intelligence values before and after the surgery should you so choose to follow through with that option. See, it is not only because the surgery is supposed to stop the seizures completely. If that does not work out it is the hope of the patient to at least get the seizures down to less frequency then what was happening before surgery. And in turn allow the patient to decrease the medication as much as possible. (Some doctors like to keep there patients on a very low dose even after surgery with positive results.) Then you are given another I.Q. test approximately six months post-surgery. This allows them to compare notes to see how much, if at all, your memory and skills have improved.
All of my Neurologists were located in Westchester County, Poughkeepsie and Middletown, New York which is not too far from Monroe where I reside. My two pediatric neurologists were located in Westchester. My one adult neurologist was in Poughkeepsie and my present epileptologist (two more years of training in neurology specific to epilepsy) is located in Middletown, New York. Ironically enough, my epileptologist is the one I'm most unhappy with.
Beware of Doctors, Surgery & Implants
I’m going to give you some very important advice. I touched on this previously but I feel like I would be doing the reader a disservice if I did not expand on the subject.
There are surgeons lurking in the shadows…so to speak. I mentioned that I went through a battery of tests in contemplation for brain surgery. Now listen closely and read it again. My nurse up at my epileptologists office who is a really sweet lady said to me after I had my tests done just short of the Wada test…”Your going through with the surgery!”…with a smile on her face as though I had made my mind up to go ahead with the procedure which I had not. I told her that I had not made my mind up yet and that my epileptologist ordered the tests to be done in preparation for the surgery should I decide to do so. (In my opinion, he was giving me a gentle “nudge” to go through with the surgery after I thought about it.) She looked at me as if she was embarrassed because she was under the assumption that I was going through with the surgery. My point is this…Do not let anyone sway your decisions on what they think you should do. Doctors, neurologists, epileptologist and the like love surgery because they make a lot of money doing it. You are your own best advocate. Not your parents, not your grandparents, sister, aunt, uncle or cousin and most importantly, your doctor. You want your friends and relatives advice as I am sure we all do including my self and that’s important. But never let anyone make your decisions for you. The only people that are an exception to this rule are parents with children who are going through this decision-making process. And still…Please be objective!
Trials & Tribulations
The Big Secret
My entire life I always kept epilepsy a secret as though it would have been a crime to talk about in addition to its taboos and ridicule as a child. If I was in the company of people, especially when all of us were gathered around the dinner table where everyone could see me, I would always excuse myself from the dinner table and go into the bathroom until the seizure subsided which was rather quickly. A good example of what I just mentioned is when I came back from South Carolina. I was sitting at the kitchen table with my dad having dinner. All of a sudden I found myself “coming to” and realized I had acquired a seizure and just came out of it. I asked my dad exactly what had occurred during the seizure. He told me that I was picking at my shirt with my free hand and just aimlessly twirling my fork with the other. That’s when he recognized that I was not eating normally and observed me throughout the entire seizure.
I would have been completely devastated if anyone of an outside source, including friends had witnessed that. Ninety nine percent of my seizures are auras but just the thought of having that blank look on my face in front of everyone and getting embarrassed was horrifying. So I hid it as best I could and did a pretty good job at doing that, too. What’s worse is that most people, at least the ones I know, are ignorant on the subject and would have thought that something worse was taking place. If I gained any wisdom on the topic of epilepsy it is this. It’s the knowledge that a seizure looks worse than what is actually taking place.
I also took the precaution that if I felt a seizure coming on, especially if I was using something that could do harm to myself such as a tool or stove, I immediately stopped what I was doing until the seizure subsided.
When I did anything that required memory from my childhood right on up to adulthood, I always had a bad comprehension level due to the epilepsy in and of itself. I always assumed it was due to my medications entirely but that proved not to be the case although medications do play a roll in bad comprehension. (That’s why my school teachers thought I lacked completely on my level of intelligence since they knew nothing about my affliction.) Going back to my school days, my concentration in class was interrupted by being picked on by other students. I always kept in the back of my mind that I was going to get beat up on due to threats before class so my concentration on my school subjects was compromised.
I’ll Be The Judge of That!
Since my adulthood, I was always self-conscious of what others may have thought if they knew I was epileptic. This same mindset stood with me my entire life as I would always ask my self what people think of me as a middle aged adult still not married or even have a girlfriend by his side wherever he goes? Is he gay? Is he a loaner? I always felt down on my self and wondered why I could not do what the masses were doing. Find love in my life, get married, live in a beautiful house and have a family of our own. The thing is that I could do anything I wanted to do but chose not to because of the stigma attached to epilepsy that still exists to this day.
So if we all get just one thing out of this scenario, it’s that we, ourselves, have no right to judge anybody regardless of what we think. There is most likely a reason why adult children are living at home just like some of us are for a said amount of time. If we stop for just a moment and be objective, we will come to realize that judging anyone is never practical nor is it Godly. Just go look in the mirror and ask “do I want anyone judging me?” You already know the answer. We all do.
Later on in my adulthood I realized that, as I am sure the reader can relate to, I’m my own person who should not be concerned about what anybody thinks about myself, right? Well that also pertains to us reflecting our opinion on anyone else as well.
Wasn’t The Light Green?
Around 2001, I had my one-and-only auto accident due to epilepsy because of my “minor spell” as I appropriately called it. The seizure was more intense than an aura and in a matter of seconds, took my attention away from what I was doing. As I was approaching a red light, someone was coming to a stop right in front of me waiting for the light to change. I knew instinctively that she was there but did not know what to do. I stepped on the accelerator instead of the brakes. I told the police that I was changing my CD and did not see her! Even though I got away with what really took place, I refused to come to my senses and take responsibility for my life and the safety of others so I continued to drive. I drove from the age of seventeen.
Independence
When we're independent, we know that we will have more than enough money to pay our bills and buy some things we would like because we we're getting paid every week from our job or earning an income from our very own business.
Ironically, to this day, I do not miss driving. From the car payment to the insurance cost to the high prices of gasoline, car maintenance, public car washes as well as car products such as car wax and the like.
I do, however, miss my independence. Things like taking my self Christmas shopping, grocery shopping, going to McDonalds for my favorite coffee, going to one of my favorite Italian delis for the best bread in town, taking myself target shooting on a beautiful Autumn day and so many other things. (I miss the sport of recreational shooting. To be clear, the reason for this is not due to my epilepsy directly, but indirectly as I am unable to drive to and from the shooting range. And I am very self conscious about having someone drive me to and from the range I used to be a part of because it’s about forty minutes round-trip. I even used to reload my own ammunition.) It’s these little things which are blessings in and of them selves that I took for granted until I was forced to relinquish my driver license for my own good and the safety of others. I took everything in this God-given universe for granted and it was a shame that I had to “hit a brick wall” in order to realize this. It really got me down when I wanted to go somewhere on my own just thirty miles away and I couldn't because the price of a taxi would of been astronomical. Taking public transportation is frustrating because I had to wait. (Imagine that!) And if they forget to send a non-smoking taxi for myself, I had two choices. One would be to wait another fifteen minutes for another taxi or suffer through the nicotine stench and take the first one home. Things like that mad me realize how grateful I needed to be and am now since my accident. I became very close to God and appreciate everything he put me through because the bad things made me stronger.
When we're independent, we know that we will have more than enough money to pay our bills and buy some things we would like because we we're getting paid every week from our job or earning an income from our very own business. However, whether we're at the age of fifteen or ninety, we're used to having our freedom and realize at this point in our lives that we were given the most amazing gifts we could of ever acquired, we come to realize that yes indeed, we take everything in our lives for granted. What's more queer about this scenario is that the old clique that goes “the best things in life are free.” Well it's true. And to me I regret not enjoying the beautiful Autumn trees and wind on my face and the sunshine when I could because of always being in a rush to get to some fruitless destination.
What bothers me more on a personal level is that there is no personal or intimate time to spend in a car or any public form of transportation with the one we love. Everything is seen, heard and emotionally felt by the neutral party in the drivers seat. That, too, is something that was taken for granted.
Dinner and a Movie?
As far as girlfriends go, I’ve had very few as I was afraid of rejection and being judged. There are a lot of (forgive me ladies; but I’m speaking from a man’s point of view, of coarse) shallow and short-sighted women out there. I was always one to gravitate towards on line dating because it was my “safe zone.” If it bothered a lady that I had epilepsy due to my profile stating so, there would never be a response. Did I feel bad? To an extent but the real-life rejection would have been horrifying. I was, to this day, never able to ask a lady out in real life even if I knew she was flirting with me because I am so self-conscious due to being rejected. I gravitate more towards the on line dating scene.
My one and only long-term relationship was with a really sweet lady that I met the evening she moved into the co-op across the hall from me. She knocked on my door to borrow a hammer so she could unpack. Being the introvert that I am, I asked her out by leaving a greeting card by her door. She accepted my invitation but I never divulged my epileptic affliction until three months into the relationship for fear of the same thing…the dreaded rejection as well as testing the waters as to whether or not she was dating me for myself or would have rejected me immediately without getting to know me. This is not a healthy way to live but it’s the reality of a lot of epileptics. I only started divulging this information up-front over that last two years via on line dating and the results show how shallow people can be about something they are not educated on.
Now my life is like a double-edged sword because even though I am starting to talk about epilepsy after a long forty-one years of silence, habits are hard to break and take approximately two weeks to form. The point I am making is that I still have a hard time making eye contact with women in public to this day. And not to brag but woman’s eyes are all over me in grocery stores. And I psychologically have no way of gaining the confidence of making and keeping eye-contact with any lady other than the elderly because they, obviously, do not hold an interest in dating me.
Income
After being diagnosed with grand-mal seizures back in 2007 when all of the walls came tumbling down, I had to stop driving and therefore, go on disability due to no transportation to and from work. When I got paid through Social Security on the 3rd of each month, ninety percent of the money had already been allocated as to how it would be used with only a little left over. Prescription drugs, doctor visit co-pays, food, vitamin supplements, etc. Sometimes the 3rd of some months would fall on a Saturday or a Sunday. If this did occur, Social Security would always pay me on the Friday before the third. Not the Monday after.
I always grocery shop on my computer and have it delivered right to my door which is a God-send since I would have to inconvenience someone to take me shopping if this option was not available. I always shop on the morning I get paid just to be sure the money is there. Common sense, right? Well this particular holiday week I wanted to get my groceries delivered in the morning so I decided to place my order the day before they were to be delivered with some reservation that my money may not be in the account that following morning to pay for my food. On July first, which landed on a Friday, I looked in my bank account online at 2am and realized that my money had not been deposited by Social Security. So I proceeded to call my bank and asked them when the money would be deposited; Friday or the following Tuesday since July 4th was that Monday. The lady told me that the updates are completed by no later than 6am. Sure enough, I set my alarm and checked my bank account at 6am and my money was indeed deposited.
South Carolina… What Was I Thinking?
Leave My Problems Behind? Yeah Right!
Around the beginning of 2007, I had decided to move down to South Carolina. I was doing it for all the wrong reasons and my anger was flaring due to where my life was headed. Nowhere! And nowhere fast. I was fed up with my entire family life because there was no structure with my family. I was also fed up with taking countless amounts of medications for my epilepsy that was giving me absolutely no results other than side effects so I took myself off of all of them without the assistance of my neurologist at the time since I knew he would not comply. I had a minimal amount of money in my bank account and still thought that somehow I would be able to go down to South Carolina and make a life for myself. (To this day I still do not know why I picked South Carolina as I like Florida better.) I was going to build a brand new home and get on with my life. Little did I know at the time that I was living a pure fantasy. I was invincible and nothing could stop me. Beyond that point, after ten months down in South Carolina, I ran out of money. This was just the beginning of what was waiting around the corner.
I called my dad and told him my situation and he assisted me to get back home. (Funny how we say “home” when things don’t work out!) My dad gave me the money to ship all of my belongings back home to New York. I drove myself back with the car I had purchased down in South Carolina.
It Must Be Short-Term Memory
After arriving back to Monroe I immediately acquired a job driving an armored car. I acquired my hand gun permit back in January of 1992 as well as worked multiple armored car jobs in the past so I was fully qualified.
One day about a month into the job, I had dropped my partner off at a stop as he was the messenger. (The person that delivers and picks up monies from specific drop-off points) When I awoke I realized that I was in the passenger’s seat and my partner was driving. I had no clue what happened and was so confused that I did not even ask my partner what had happened. My boss called me into his office after arriving back at base and asked me to go for a physical to make sure everything was alright but allowed me to continue working in the interim. With that, I went home that evening and went through my normal routine.
The following morning is when my world started to implode on me and I would never be the same mentally again…in a very positive way! I was on my way to work and, once again, awoke not knowing what had happened. Only this time with my personal car smashed up against a tree and a New York State Police Officer standing by my side with the driver’s door opened. From what I remember, I do not recall divulging to the police that I have epilepsy. I called my job up after going home with my dad and my boss asked me “Alexander, are you epileptic?” I told him yes and asked him how he came to that conclusion. He said his sister was also epileptic. (This is so important to take note of because it tells us that we are far from being alone. Epilepsy affects quite a few people in society but we are too ashamed or embarrassed for fear of being ridiculed by the vast majority.)
The Walls Came Tumbling Down…In a Very Good Way
Dependent? No Way!
I became home-bound directly after my accident as I could not drive. I had my dad take me everywhere from the grocery store to my doctors appointments, to the pharmacy to the deli. And it started to take its toll on me. My dad, due to my late mother’s demise, was enraged with frustration and his built-up anger showed in his driving as well. It became uncomfortable for me to drive with him as he was unsafe on the road.
Soon afterwords, I started to keep a seizure diary. I also became very self-conscience of what people that lived around me in my neighborhood would think since I was driving when I came back to New York and ceased driving after I had my accident which, of coarse, they knew nothing about. I was afraid of what they would ask me in the way of why I was not driving so I stayed out of sight. Even when it came to getting the mail and putting the trash out, I waited for night fall. I was virtually holding myself hostage in my own home.
I became very depressed for the very first time in my life and the thought of never being able to lead my own life was devastating. Even my dad said to me from seeing my depression “I want the old Jr. back.” He would also state to my neurologist in the past “If I could take it away from him, I would.”
Little did I know I was about to become a much better person and help thousands of people due to Gods divine plan for myself. I realized what was happening and took total comfort in this. I was slowly but surely being torn down by God and re-built into the person he wanted me to become. For the very first time in my life, I became very religious. I started to read the Bible on a daily basis. I memorized The Ten Commandments, memorized three pages of quotes out of the Bible, prayed two times a day and prayed on my knees in the evening just before I went to bed. I started to appreciate Gods bounty. The simple, precious gifts God has given us all that we, including myself, take for grated every day. I started to appreciate the birds, the trees, the wildlife, the oceans, the streams and the lakes, the stars, the sun, the moon, my family and friends and most of all…God! It’s amazing how much I saw of myself when I read the Bible. It was like I was looking into a mirror.
After my accident, I soon applied for disability which bothers me to this day because I am a more-than-capable individual. After being accepted for disability payments, I also inquired about transportation services via Medicaid. To my delight, they provided me transportation, free of charge, both to and from any medical services I needed. This allowed me to go to my epileptologists office by myself and avoid having to deal with my dad’s road rage. This also freed up his time as well. I was also able to have my groceries delivered right to my door. (Not a benefit to Medicaid but allowing me to acquire food without the assistance of my dad when he was out of town) These benefits were a life-saver for a few reasons. My dad went down to Florida quite frequently to spend a month or so at his home. And I did not have to feel guilty about him waiting on me in the parking lot of the grocery store until I finished my shopping as well as waiting on me when I went to my epileptologists office. My dad never said anything negative to me and was always supportive but it was instinctual that I was cramping his style of his normal daily schedule. Plus this left his mind clear that I was able to live at home without his assistance when he traveled. Unfortunately, this benefit did not exist with Medicare once it took the place of Medicaid.
If I had to go any other place instead of my doctor’s appointments, I called a taxi. I always had the same lady pick me up as she was super-friendly and nice to talk to. (I think she just wanted a good tip) This also made the time go by faster. I would use taxi service to go to the bank and pick up my prescriptions. I always chuckled because even though the taxi service had good rates, I spent more money on that than I did for my medication co-pay!
I Hear A Rattle
When I went on disability due to epilepsy, my entire world changed in many ways as discussed in this book. However, one of my biggest issues was lack of funds. When someone is on disability, the monthly income is limited to a fixed amount per month. What's worse is that I got a decrease after a year for some reason. After a while, I was scraping the bottom of my pockets just for some change to tip the lady who delivered my groceries with. Talk about embarrassing when you spend over one hundred dollars in food via a debit card but do not have five dollars in cash to tip the delivery woman with.
At the beginning of each month, I would go on line and spend nearly one third of my monthly income on things I've been waiting to purchase for three weeks. Whether they were for business or for myself. This was my way of “living it up” for a few on line purchases that virtually made me excited to receive when the delivery man finally brought them to my door. In the past it would of been “I get it when I get it.” Now it's like “another day! When are they going to deliver my stuff already? It's been three days!” You can't miss what you've never had but in this case, I miss my cash and pocket change. Every red cent!
Craigslist became my friend because I could sell items right out of my garage that I no longer needed. When someone off of Craigslist buys something from you, they come to your home to pay you in cash and pick the item up. It was the perfect solution to extra pocket money. I had a lot of items to sell but only a few actually sold. Society thinks that just because something is on Craigslist that they can steal it from you. I heard of giving people a bargain but some people are totally unrealistic. They think they are buying a used car!
One of the worst aspects of being put on disability is knowing in the back and forefront of your mind that you want nothing less than freedom...financial freedom. This is where you become vulnerable so please take notes. If you are like myself, you are tired of going to what we call the J.O.B. (Just over broke) because of never being paid what we are worth. This is endemic of all people with an entrepreneurial mind-set. Except now we have a reason for pursuing our goals. However, we are not seasoned on doing our “homework” to be sure we are investing our time and money into a company that is legitimate.
What Was That?
I never acquired a grand mal seizure until I got back home from South Carolina. However, I had a multitude of them while staying with my dad. My family became very concerned as to what was triggering them. My first incident since arriving home was when I noticed my brother-in-law putting my jacket on when I “came-to.” I had no clue as to what was going on at all. He, my dad and my oldest sister took me to the hospital. I remember nothing more about that day at all.
My next Grand Mal seizure happened one evening while I was on my computer. I awoke and found myself lying face down on the floor out of breath and moaning. I felt something on my face and it was my dad wiping blood off of my face that came from my forehead. Here’s a little foot note for those who have never experienced a Grand Mal seizure: After you “come-to,” you are so out of breath due to the deprivation of oxygen to the brain that you feel like your heart is going to come out of your chest because it is beating so fast. After I got up on my feet, my dad guided me to the couch and tried to speak to me. I was unable to think straight and had a hard time gathering words to form a sentence. After a few minutes, I slowly got up off of the couch by myself to go to the bathroom and my dad jumped up, grabbed me by my arm and said “are you alright?” I said yes and that I had to go to the bathroom. But in actuality, I just wanted to go look at my face and head in the mirror. My face looked like someone had beat the crud out of me from rubbing my face on the rug; my right knee was bruised and my head had a gash in it from falling on the corner of my computer desk tray.
Do the neighbors know?
After arriving home from South Carolina and getting into my auto accident with my personal car on my way to work was a turning point that became a struggle to this day. That struggle is always worrying about what my neighbors were thinking when they saw me home day after day. Now, my neighbors may not even notice that I am always home. Nor do most of them even know that I have epilepsy since most of my neighbors are new to the neigborhood. But the psychology behind my own thinking is that since I m home bound due to epilepsy, I do not want them asking me whay I am always home or if I work a job. This is probably the furthest thing from the truth as far as what they are thinking but this self-inflicted stigma has limited me to some extent.
Even when it comes to house chores. I always waited until night-fall to get the mail or to put the trash to the curb so I would not come into contact with any of my neigbors and give them a chance to tap into my personal life. I started having my lawn mowed and driveway plowed by an old school-mate to avoid being seen.
Take Good Care of Yourself
I became a very good cook and baker after I became home-bound. I was always able to cook when I lived on my own. I even managed to woo my ex-girlfriend with some really nice dishes! However, before moving back to New York, I had never baked. Now I make a really good cakes, pies and cookies. (My favorite is apple pie.) The main reason for this is that I do not eat preservatives. I also drink alkaline water and virtually live in the produce isle and buy organic food. If I choose to eat any sort of chicken or lamb, it is always grass-fed and never soy-fed. See http://dogtorj.com/ for specific details.
As far as exercise goes, I do a pretty good amount on a weekly basis including fast walking seven days a week (Done in my garage so I do not have to bother my dad,) sit-ups, push-ups and weight lifting three times a week… occasionally missing a weight lifting work-out due to time constraints. When I do my weight-training, I will never attempt to do a bench press when I feel the onset of a seizure for fear of the weights dropping on my neck which would probably prove fatal since I am lifting over two hundred pounds and do not have a spotter.
So as you can tell, I take very good care of myself while also being very cautious. I never try to defy what the outcome could possibly be. And that is where parents have to become very cognizant since children consider themselves invincible.
Cold is Safer Than Hot
After I prepared Cream of Wheat for lunch one afternoon, I went to sit in my living room chair where I always have my meals, said Grace and then started to eat. All of a sudden I realized that I had another seizure; not a grand mal; but a seizure that made me black out for a moment just like I did on the job. After I awoke I realized that I had three of my fingers on my right hand submerged in the bowl of Cream of Wheat that had just been taken off of the stove. I have no clue how long I had my fingers in the Cream of Wheat after I blacked out but I know one thing for sure; And that is when you take Cream of Wheat off of the stove, it’s over one hundred degrees and very sticky; Sticky enough to stay on my fingers when I took my hand out of the bowl. I immediately knew something was very wrong because of the excruciating pain so I put my fingers under cold water and called a friend as my dad was in Florida at the time. She took me straight to the hospital emergency room. On the way to the hospital, I told her to not call my dad and tell him about the incident. She asked me why and I told her because I did not want him to worry as there was nothing he could do anyway. They diagnosed it to be second degree burns, bandaged them up, gave me some extra bandages and cream to take home and I was on my way back home. The worst part is they asked me if I was suicidal and needed my insurance before treating me! The next morning I almost fainted when I saw what one of my fingers looked like. It looked like a mini inflated balloon that took up the entire pad of my finger filled with liquid like you would see on a water blister when using a rake with no gloves; but ten times as big!
Do You Believe?
Since the time I was home from South Carolina, I've had four angelic experiences. I’ve never had anything like this happen to me in my entire life so I knew these experiences had everything to do with finding God and allowing people and pets from my past back into my life. I truly believe they were watching over me due to my situation at hand.
“Visited By Sam”
On May 18th, 2008, I had gone to sleep at around 12:30 AM. I heated a half of a pizza for myself that I had made a few weeks earlier and since it was my day off when I allow myself to eat anything I want, I treated myself to a late-night snack. I was tossing and turning later that morning when I went to sleep and could not get comfortable. I had a strange feeling come over me at one point. I decided to turn over and face the left side of my bed where I would enter and exit. To my amazement, my late dog, Sam, a Golden Retriever that my family had for 13 years (October of 1978 – September of 1991), had his head resting on my mattress. I saw his face in silhouette and reached out to pet him as I always did when he was alive. I proceeded to ask him if he wanted to come on the bed. He then jumped up and laid down on the right side of me. He had his head facing away from me and turned on his side to fall asleep. I pet him a little and proceeded to go back to sleep. Even when I went to slide my hand under the covers, Sam stopped me from moving as his body was next to me. A minute later, Sam started to wag his tail while still lying on his side. I asked him what the matter was and he proceeded to jump off of the bed and walked towards my bedroom door which was opened. I followed Sam out of the bedroom and he stood at the door that led to my dad’s office with his tail still wagging. I opened the door for us and followed Sam out towards my dad’s office. To my surprise, my late mother was looking in my dad’s coat closet. I asked her what she was doing and she replied “Oh…just looking around.”
At this point, my heart was beating so fast that I felt like someone was pulling it out of my chest. I found myself lying back in bed and felt like my chest was going to explode so I proceeded to get out of bed and head upstairs to call on my dad so he could take me to the hospital. I went up approximately 3 steps and immediately woke up and found myself in bed. I then got out of bed, turned my TV on and went to sit on my couch. I proceeded to cry from the event that just took place. I realized that this was not a dream. Instead, this was an experience of my dog Sam’s spirit, his angel, coming back to visit me. I never felt such a true connection from the afterlife.
When I met my dad upstairs in his kitchen for breakfast later that morning at about 7AM, he immediately knew that something was on my mind. As I told him what happened that evening, I began to get extremely emotional and was amazed at the entire recollection of events that had taken place.
My first dream about Sam (Not an angelic experience), was when I was sitting by my desk with my feet up. I looked to my right and Sam was sitting right there by my side with his chin on my leg as though he wanted to be pet. (How ironic…Sam always put the bottom of his chin on me for attention. Then when I started to pet him he’d pick his head off of my leg.) From what I remember, I believe I reached out and began to pet his head. I now have Sam’s urn on my window sill as we had him cremated. I can actually stand by Sam’s urn and my chin fits perfectly on the top of his urn without crouching
My other dream about Sam is when I was doing lawn work and he would not go inside but instead, sat in the garage never taking his eyes off of me as he did when I had a seizure in front of him.
“To Britain and Back”
On July 17th, 2009 at about 4:45 in the morning, I had my second experience with angels. I had been dreaming that evening. Nothing too big. One dream I recall was helping a young lady clean a kitchen. I was actually getting in her way after a while so I left. During the evening while I was sleeping, I had woken and my neck was hurting so I decided to roll my pillow up and stick it under my neck for better support. This meant that I would have to sleep the balance of the evening flat on my back with my toes straight up in the air under the covers.
The setting was in a hospital where I overheard the nurse’s station receive a phone call for me and I decided that I did not want to take it so I faked being asleep. When the nurse came to give me the phone, she kept calling my name but I did not answer to avoid taking the call. All of a sudden I felt the nurse nudge my two big toes and whisper to me in a British accent, “Mr. Lodi.” My only response to her, because I could hear myself, was a slight groan. I then felt, who I assumed was a nurse, nudge my two big toes very gently once again and whisper to me, “Mr. Lodi.” I then groaned to this voice once again, feeling my mouth wide open. At this point in time I was no longer in a hospital but, instead, back in my own bedroom. That is when I had this most amazing experience and saw what looked like the outline of a lady with a bun in her hair. Kind of like a women will do to keep her hair neat. Then I could almost swear I heard her try to say something else but I could not understand it. Then I saw this smoke-like image come before me and then she was gone. This upset me a bit because as she was disappearing, I wanted to ask her what she had just said. Through this entire experience, I actually felt like I was paralyzed.
I then woke to my real state of being and shortly thereafter realizing what had taken place, put my lamp on while still lying down and relived the entire experience over and over again in my mind. As I was looking off to the left side of my ceiling thinking of this awesome experience, I shed but one tear as I know through my strong Catholic faith that angels do exist and I was looking forward to my next “angelic” visit.
“Carried by God”
Back on August 6th, 2009 I had my third Grand Mal seizure and believe that I had an intervention with God and was carried by him but could not remember the experience ever since coming out of the seizure. That is the day I believe the experience to have occurred. Before I realized what the experience was, I found myself on the floor sandwiched between my coffee table and my couch due to the Grand-Mal seizure. No one was home to help me so this is what makes this experience so awesome and realistic.
As the days, weeks and months ahead progressed beyond the seizure I had acquired, I kept getting these intermittent flashbacks of that day but could not gather the entire scene in my mind no matter how hard I tried. This was really nagging at me but I just let it go. I only had one of my one minute seizures which cause me to zone out on August 11th, 2009 beyond the grand mal seizure and that happened on August 6th, 2009. As I was typing an Email to my friend, I stopped and immediately jumped six feet back in my desk chair as I realized the amazing intervention that followed the grand-mal seizure on August 6th. I put my head down, stared at the floor and visualized God carrying me on the sand. I started to cry right there in the chair and realized that everything…as I already knew…was going to be just fine. God was carrying me through that entire seizure as he always is by my side. I then got up from my chair, went in my bedroom, shut the door, put my light on, got down on my knees and started to pray really hard. I even prayed for God to take away my friends seizures if that was a sign that I had become seizure free. No matter what, I knew everything was and always is okay because God is always by our side and watching over us…our entire universe!
“Hand of Mom”
I did not have the best relationship with my mother while she was alive. We always had enthusiastic battle with each other and got under each others skin. However, when times were tough, we were there for one another. It’s just a shame it took times to be tough for us to get along.
On March 14th, 2010 I had dreamt of myself looking at a piece of furniture…just the corner of the furniture where the two pieces of molding meet and are nailed together. I am not sure why, but I made the correlation that it looked like my parents’ furniture other than the fact that the furniture in the experience was much lighter in color.
In an attempt to remove one of the nails from the furniture myself, all the while only seeing my hand and the corner of the furniture…nothing else…I realized that one of the two nails was missing because I could see daylight through the hole. I then began to take the other nail out by hand and realized that the nail was not a nail…it was a wooden dowel stained in the same color as the furniture. When I almost completely finished pulling the dowel out of the furniture, my late mothers hand…and only her hand…reached down and very softly grabbed my finger or fingers (I am not clear on this point) that were holding the dowel and held them until I awoke.
This reminds me of how a newborn child reaches out and grabs their parent’s finger because there hand is too small to hold the entire hand. It was a strange but somehow comforting experience to realize my late mother was watching over me. It brings me comfort to know that every time I see 9:07 on my clock (The month and day of her birthday)…and I see this quite often…it is indeed my late mother watching over me. In fact, just as I punched the first letter “H” to write “Hand of Mom” for the title, the time read 9:07! Angelic or coincidence? I do believe! I just realized that I finished this writing at 9:41! My late mothers’ birth month and year!
Visited by Mom:
Saturday - June 22, 2019
I had a rough morning yesterday starting with a rude comment from a guy on Facebook which instituted a very bad anxiety attack on myself. I’ve never suffered such high anxiety from something that was meaningless from a person I don’t even know. I wound up deleting his comment and blocking him from my profile comments. I also got off of my computer, went on my tablet and started reading the Holy Bible on my tablet. Afterwards, I spied the book from Joyce Meyer, “Battlefield of the Mind “ on my living room end table and started to re-read that book. It really resonated with me in where I am in my life and I felt a kind of peace come over me. I think God was talking to me and was finally able to get my attention. That evening I went to bed in fear of having a nightmare, propped myself up on two pillows and left my lamp on. I then, at 11:20 PM, had an angelic experience where my mom came to comfort me. I was sitting on the foot / pillow of my sofa next to the door when I realized I was hugging mom tight as she was laboring her breathing. The next thing I knew, I was back in bed and felt her kiss me on my lips and then she disappeared. I opened my eyes wide and realized that for the first time since mom passed that she came to visit me directly. We may have had a lot of differences here on earth but I always loved you, mom. I always will. See ya soon up in Heaven. Keep watching over us all. 💗🙏🏻🙏🏻💗
Revisited by Sam:
Tuesday - June 2, 2020
About 8:50pm, I had a beautiful experience with my beautiful Sam while I was taking a nap on my sofa in the basement of my dads house. We were upstairs in my dads family room, I do believe and there were a bunch of pre-wrapped toothpicks in clear wrappers on the floor. I turned my back to get a broom to clean them up and to my surprise, Sam came to my side with all of the toothpicks in his mouth, tail wagging to acknowledge he was helping me; not stealing them or chewing on them. I thanked him. I then saw Sam get one more toothpick off of the floor and deposit it directly into the garbage can. Sam then walked over to me, I knelt down, hugged Sam with his face nuzzled into my chest and I said “l love you so much, Sam. I love you so much.” Sams tail was wagging very slightly as if to acknowledge that he knew that and that he loved me, too. I do believe this was a beautiful angelic experience. Thank you so much, Sam. I will always love you.
These experiences mean something to me and are very sacred. These experiences happened…and I cannot emphasize this enough…after I got back to New York. This is when my transformation began to take place. In all of my previous forty years of my life on Earth, I have never had an angelic experience. I knew from these experiences that from now on…everything will take care of itself as long as I continued to believe in my faith. And I do!
My Take on Society
Are We An Experiment?
Did you ever feel like you were nothing more than an organized experiment for doctors to work on in order to better understand epilepsy but don’t quite know the answers on how to effectively treat it? This pertains to some things I’ve already mentioned such as doctors advising implants and surgery before we even do any other research on epilepsy ourselves.
This reminds me of when I returned back to New York from my brief stay in South Carolina. My dad never told me he was having heart problems. At any rate, his doctor recommended surgery to unblock his arteries. He went right along with this and immediately had his chest cracked wide opened. Let’s look at this from a realistic standpoint.
My dad was having minor side effects for a couple of weeks pointing to a possible heart problem before deciding to see a cardiologist (And this happens ALL the time because it is human nature for human beings to deny that there may be something wrong) and was told to get surgery immediately the coming week.) If my dad had gone to the cardiologist the very first time he began to get discomfort in his chest, (two weeks before his initial visit,) what do you think would have been the cardiologist’s recommendation? He then would have been into surgery two weeks before even deciding to get checked out. He was still alive, wasn’t he?
Did you ever watch a popular television series as well as other medical shows when the doctor declares that a person has a specific number of months to live and the person is still alive…years later? Then they have the audacity to declare that “it’s a miracle” just to get out of what they misdiagnosed. Why? Because the standard “medical book” is followed to the letter!
My point is this, ladies and gentleman and I will say it until you get sick of hearing it. Be your own boss and your child’s advocate when it comes to epilepsy and trust your gut instincts. Doctors love surgery because it makes them wealthy. Just like Oncologists love Radiation and Chemotherapy despite that they have a very low success rate. (Another subject entirely but you get the picture…I hope.) It’s not rocket science once it’s learned and it’s up to all of us to take a stand. Doctors will NEVER recommend naturalistic remedies simply because there is no money in it for them and it’s not “proven.” What a joke!
When it comes to people in society at large, we need to educate them on epilepsy and that there is nothing to be scared about when a seizure occurs. The trick here is for them to recognize a seizure and to know how to treat someone who may be having, for instance, a Grand Mal seizure.
