36 Pills: Living With Temporal Lobe Epilepsy

Every morning, I see four porcelain bowls on the kitchen counter along with juxtaposed sticky notes that have the time of day written on them. In these bowls, there are pillscapsules of all shapes, sizes, and color. 36 pieces of medicine are given to me daily.

I wish that I did not have to swallow these chemicals, but unfortunately, I must because autism and epilepsy have created a maelstrom of neurological imbalance in my brain. My wiring is on continuous hyperdrive, so my synapses need to be replenished with soothing neurotransmitters.

Autism has been described as a spectrum, which means that those of us who are on the spectrum are very diverse from one another. There is a saying that “if you’ve met one person with autism, you’ve met one person with autism.” We are all unique. We come in all ethnicities, genders, and countries, and all of us have an underlying desire to communicate.

Some of us are nonverbal, and some of us can speak, but are we really communicating with others? Can we demonstrate our passions about life and can we actually aspire to fulfill our hopes and dreams? It is all of the associated conundrums that interfere with our ability to achieve these goals. This is why I have to take 36 pieces of medicine so that I can function in the neurotypical world.

Numerous studies show that around 50% of people with autism have some form of epilepsy. I am included in that number, as I have been diagnosed with Temporal Lobe Epilepsy. In fact, I take four oblong-shaped pills to soothe my nerves and keep the electrons and protons of my brain in an even charge. Additionally, eight capsules of the 36 pills I consume every day keep my neurons in check from the massive electrical storms that are known as seizures. Each capsule is colored half red and half white.

How appropriate is this, as red represents the rage I experience during a horrific seizure while white is the calm of the ictal period following the epileptic event.

At an early age, I was diagnosed with epilepsy as part of the workup for autism. My parents sought the help of experts in the field, even though nobody knew a lot about autism when I was a kid. The medical community still does not know a lot about it because no one can identify a cause, and there certainly is no cure for it. The workup for epilepsy included being fitted with electrodes to measure brain waves over a 24-hour period. I supposed they found out that I really had a brain and one that was quite active. I traveled to Miami, Chicago, Washington, D.C., Baltimore, and Boston to consult with physicians who were “in the know.”

The physician from the Dan Marino Center in Miami was the first one to say that I had epileptic activity. I was three years old at that time and was strapped to electrodes, which scared the hell out of me. Following this attempt to cure me, my parents sought the advice of a pediatric epilepsy specialist in a northern suburb of Chicago. I did the 24-hour electroencephalogram with my hair full of electrodes, glue, and gauze wrap, which made me look like someone who had a lobotomy.

These sessions made me feel like some laboratory animal that was being studied. Too bad they just could not put jumper cables on me to restart my brain with the hopes of ridding me of autism. The doctor said that I had Temporal Lobe Epileptiform Aphasia. I wish I knew what he meant, but I still could not speak.

Unfortunately, the epilepsy worsened as I entered puberty, which was when the generalized grand mal seizures began. Was it a coincidence that my first grand mal seizure occurred shortly after I made my bar mitzvah in which I was highly critical of God for allowing me to be autistic? Was this Zeus from atop of Mount Olympus throwing bolts of lightning at my head, or was it just another sucky part of being autistic?

At the end of the day, there was really nothing that I could have done to prepare for that first explosive electrical storm.

The only thing to do was to just let it happen since I was not on medications at that time. One day, it happened in school during a science class of all classes. It occurred in a room full of seventh graders who were fortunate enough to watch me fall out of my desk, hit the floor, and shake as if I was a piece of bacon in a frying pan.

Later, I was told that the seizure lasted about two minutesor probably longer for my schoolmates who witnessed this embarrassing event. I didn’t just blackout in front of my classmates but I watched them cover their mouths as they saw me soaked in urine and feces! Was it not bad enough that I feel isolated over being autistic? But throw in a co-conspirator in epilepsy, how fucking lucky could I be?

Temporal Lobe Epilepsy affects people in many different ways. Reports show that people may experience emotional disturbances, especially since the seizure activity occurs in the limbic regions or emotional areas of the brain. Some have described hypersexual behaviors in this group. Unfortunately, I was unlucky enough to be a part of this group.

When I was in high school, an aid was supposed to be with me the entire time. The episode that I will describe occurred without the supervision of my aid, which retrospectively saved my ass because my Individualized Education Plan (IEP) required him to be with me. Instead of being with me, he left me in the hands of an occupational therapist, who was on crutches. She was an older lady who couldn’t handle me anyway, but put her on crutches with a lame leg and she had no chance. From what I was told, I escaped to the sixth-grade classroom and proceeded to drop my pants and masturbate to the bewilderment and screams of the teacher and students.

Parents of these students claimed that I caused irreparable damage to their kids, especially the girls.

A hearing was held by the public-school system, and they decided to expel me. The hearing took place at the school system office with my parents, my attorney, the school principal, the offended teacher, the aid, and the lawyer for the school board. I didn’t have much of a chance at this hearing, as the decks had already been stacked.

The prosecution and judge, a profusely sweaty, middle-aged lawyer, made me sound like a serial rapist. According to her, the entire school was terrified of me, especially the poor teacher whom I jerked off in front of. Even the teachers’ union had it out for me as if I was “Public Enemy Number One.” I bet my picture was probably posted in their lunchroom with the word “Beware” on the bottom. “I cannot let Benjamin back into Haynes for the safety of all the faculty and students,” the lawyer said with a grimace toward me.

At this point, the attorney who represented me asked my aid, “Where were you during all of this?” My aid testified, “I only left him for five minutes.” Notably, if he had not divulged this statement, my life might not be what it is today. “Do you realize that the school system has to obey the IEP exactly?” responded my attorney. “The Alexanders can sue the school system because of your negligence and noncompliance,” he emphasized strongly.

As a result, I was placed into the homeschool program for the public-school system while my epilepsy was being treated. This was the beginning of a new anticonvulsant, my red and white capsules that would control the grand mal seizures and keep my penis in my pants.

I have been asked by physicians and others what is it like to have a seizure and can I tell when it may happen. I have no clue when these events may happen and the only way to describe them is to utilize metaphorical language as well as visual imagery to explain how epilepsy affects me. If I had to depict the events that metaphorically describe what happens during a seizure, it would be like the following:


The calm before the storm can only be described as a beautiful setting. It could be the crisp blue skies of a Colorado mountain with the yellow and purple wildflowers swaying in the wind. Maybe, it is sitting in a rowboat in the middle of Fallen Leaf Lake, staring and touching the cold ice melt water or possibly hiking a narrow winding mountain trail only to see tall trees and wildlife. Calm could be staring out of a window, not especially looking for anything in particular, or maybe listening to the sounds of a soft summer rain beating against my window as I lay in bed pondering my plans for the day.

Calm can include the softness of voices like Annie Lennox or Jon Anderson, or it can include the images expressed in the music of Yes as one travels the seas and the valleys. Calm is knowing that you are loved and at peace with oneself. Calm is the peace of being alone on the field, not anticipating what events are about to occur.

Then the unthinkable occurred to that young man who was left alone standing in that field. Ominous dark clouds infiltrated the calmness of the day. Strong gusts of wind swirled about almost lifting the boy into the air. The ground began to rumble, toppling the lad off of his feet. Intense spastic shaking started with the eyes rolling backward as if they were staring directly at the brain. The tongue protrudes itself out of its cave-like mouth, getting pierced by sharp canines, spewing out blood. The circuitry of the brain is overloaded and releases enormous watts of energy to all parts of the young man and unlocks the terrors that are attacking and breaking the calm.

The body loses all control as limbs become tense with rapid movements that are strong enough to break bones especially the bones of the young man. The calm is disturbed by the guttural sounds that emanate from the fast twitch of buccal muscles that are crying out for help. Control is lost as bodily waste products are released throughout the young man’s attire which adds further insults to him and proclaims to the world that he is different. Calm is disturbed by the screams of those who witness this horrifying event as the young lad turns a scary shade of blue as the oxygen is deprived from the young man’s brain. “What do we do?” “What do we do?”

Slowly the ravages of the powerful electrical storm that overloaded the young man’s brain begins to diminish and the devastating effects are noticeable to all. The young man is in a dazed and confused state with no idea of whom or where he is. It is as though a thief swiftly extracted all of his thought processes and left him in the gutter to lie in his excrements. Bit by bit, oxygen enters his airways, which changes his skin coloring from the pale blue to a pinkish hue. The eyes scan the surroundings in an attempt to familiarize himself with the environment in addition to who he is.

“Are you alright?” “Are you alright?” The young lad sloppily makes an attempt to stand, as if he was a foal just rising for the first time. Gingerly, he takes a couple of steps with wobbly knees that require assistance from a helper. Fatigue invades the body rapidly as eyelids become heavy as if a sedative was administered. The young man’s body becomes flaccid, and there is nothing in this world that will disturb the new calm that has overtaken the young man.

A new day has come with an awakening of the mind. Like a computer that needed to be rebooted, so has the brain of the young man. New words flow out like those of the child discovering a world that is unfamiliar. The focus on tasks has never been keener. A bright light emanates from the eyes of the young man who has no recollection of the horrors of the previous day.


My description is inspired by the visual imagery of the graphic novel Epileptic by David B, which provides an in-depth look on the effects of epilepsy on not only the individual but also the extended family members who care for the one with the disease. Epileptic demonstrates a crisis for the mother of Jean-Christophe, the child afflicted with epilepsy, who appeared to be devastated by the child’s latest seizure.

This frame visually displays the worries that the mother has for her son as the graphic metaphor shows her sitting on top of the head of her son while probing the brain of the epileptic child in order to figure out the crisis. This frame also has a monster in it who is licking the boy as if it was a mother animal licking her cub, which is another graphic metaphor for epilepsy. The novel is black and white, which indicates the darkness of epilepsy suggesting the evilness of the disease.

David B: Epileptic – Image Source

I too can relate to this as my family has endured the hardships and witnessed the ravages that epilepsy has placed on me during the years. Graphically, there is a frame in this novel that depicts the epileptic child as the Frankenstein monster who is being chased out of the village as though this child is evil. I too have felt like this isolated being whenever a seizure would take over my body and turn me into this fiend.

In my case, the jury who banished me from school were the villagers and I was the Frankenstein monster that was removed so as not to harm any girl. Fortunately for me now, there are the red and white pills that have added color to these dark frames and this has changed the story ending to a happier one.



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36 Pills: Living With Temporal Lobe Epilepsy

Every morning, I see four porcelain bowls on the kitchen counter along with juxtaposed sticky notes that have the time of day written on them. In these bowls, there are pillscapsules of all shapes, sizes, and color. 36 pieces of medicine are given to me daily.

I wish that I did not have to swallow these chemicals, but unfortunately, I must because autism and epilepsy have created a maelstrom of neurological imbalance in my brain. My wiring is on continuous hyperdrive, so my synapses need to be replenished with soothing neurotransmitters.

Autism has been described as a spectrum, which means that those of us who are on the spectrum are very diverse from one another. There is a saying that “if you’ve met one person with autism, you’ve met one person with autism.” We are all unique. We come in all ethnicities, genders, and countries, and all of us have an underlying desire to communicate.

Some of us are nonverbal, and some of us can speak, but are we really communicating with others? Can we demonstrate our passions about life and can we actually aspire to fulfill our hopes and dreams? It is all of the associated conundrums that interfere with our ability to achieve these goals. This is why I have to take 36 pieces of medicine so that I can function in the neurotypical world.

Numerous studies show that around 50% of people with autism have some form of epilepsy. I am included in that number, as I have been diagnosed with Temporal Lobe Epilepsy. In fact, I take four oblong-shaped pills to soothe my nerves and keep the electrons and protons of my brain in an even charge. Additionally, eight capsules of the 36 pills I consume every day keep my neurons in check from the massive electrical storms that are known as seizures. Each capsule is colored half red and half white.

How appropriate is this, as red represents the rage I experience during a horrific seizure while white is the calm of the ictal period following the epileptic event.

At an early age, I was diagnosed with epilepsy as part of the workup for autism. My parents sought the help of experts in the field, even though nobody knew a lot about autism when I was a kid. The medical community still does not know a lot about it because no one can identify a cause, and there certainly is no cure for it. The workup for epilepsy included being fitted with electrodes to measure brain waves over a 24-hour period. I supposed they found out that I really had a brain and one that was quite active. I traveled to Miami, Chicago, Washington, D.C., Baltimore, and Boston to consult with physicians who were “in the know.”

The physician from the Dan Marino Center in Miami was the first one to say that I had epileptic activity. I was three years old at that time and was strapped to electrodes, which scared the hell out of me. Following this attempt to cure me, my parents sought the advice of a pediatric epilepsy specialist in a northern suburb of Chicago. I did the 24-hour electroencephalogram with my hair full of electrodes, glue, and gauze wrap, which made me look like someone who had a lobotomy.

These sessions made me feel like some laboratory animal that was being studied. Too bad they just could not put jumper cables on me to restart my brain with the hopes of ridding me of autism. The doctor said that I had Temporal Lobe Epileptiform Aphasia. I wish I knew what he meant, but I still could not speak.

Unfortunately, the epilepsy worsened as I entered puberty, which was when the generalized grand mal seizures began. Was it a coincidence that my first grand mal seizure occurred shortly after I made my bar mitzvah in which I was highly critical of God for allowing me to be autistic? Was this Zeus from atop of Mount Olympus throwing bolts of lightning at my head, or was it just another sucky part of being autistic?

At the end of the day, there was really nothing that I could have done to prepare for that first explosive electrical storm.

The only thing to do was to just let it happen since I was not on medications at that time. One day, it happened in school during a science class of all classes. It occurred in a room full of seventh graders who were fortunate enough to watch me fall out of my desk, hit the floor, and shake as if I was a piece of bacon in a frying pan.

Later, I was told that the seizure lasted about two minutesor probably longer for my schoolmates who witnessed this embarrassing event. I didn’t just blackout in front of my classmates but I watched them cover their mouths as they saw me soaked in urine and feces! Was it not bad enough that I feel isolated over being autistic? But throw in a co-conspirator in epilepsy, how fucking lucky could I be?

Temporal Lobe Epilepsy affects people in many different ways. Reports show that people may experience emotional disturbances, especially since the seizure activity occurs in the limbic regions or emotional areas of the brain. Some have described hypersexual behaviors in this group. Unfortunately, I was unlucky enough to be a part of this group.

When I was in high school, an aid was supposed to be with me the entire time. The episode that I will describe occurred without the supervision of my aid, which retrospectively saved my ass because my Individualized Education Plan (IEP) required him to be with me. Instead of being with me, he left me in the hands of an occupational therapist, who was on crutches. She was an older lady who couldn’t handle me anyway, but put her on crutches with a lame leg and she had no chance. From what I was told, I escaped to the sixth-grade classroom and proceeded to drop my pants and masturbate to the bewilderment and screams of the teacher and students.

Parents of these students claimed that I caused irreparable damage to their kids, especially the girls.

A hearing was held by the public-school system, and they decided to expel me. The hearing took place at the school system office with my parents, my attorney, the school principal, the offended teacher, the aid, and the lawyer for the school board. I didn’t have much of a chance at this hearing, as the decks had already been stacked.

The prosecution and judge, a profusely sweaty, middle-aged lawyer, made me sound like a serial rapist. According to her, the entire school was terrified of me, especially the poor teacher whom I jerked off in front of. Even the teachers’ union had it out for me as if I was “Public Enemy Number One.” I bet my picture was probably posted in their lunchroom with the word “Beware” on the bottom. “I cannot let Benjamin back into Haynes for the safety of all the faculty and students,” the lawyer said with a grimace toward me.

At this point, the attorney who represented me asked my aid, “Where were you during all of this?” My aid testified, “I only left him for five minutes.” Notably, if he had not divulged this statement, my life might not be what it is today. “Do you realize that the school system has to obey the IEP exactly?” responded my attorney. “The Alexanders can sue the school system because of your negligence and noncompliance,” he emphasized strongly.

As a result, I was placed into the homeschool program for the public-school system while my epilepsy was being treated. This was the beginning of a new anticonvulsant, my red and white capsules that would control the grand mal seizures and keep my penis in my pants.

I have been asked by physicians and others what is it like to have a seizure and can I tell when it may happen. I have no clue when these events may happen and the only way to describe them is to utilize metaphorical language as well as visual imagery to explain how epilepsy affects me. If I had to depict the events that metaphorically describe what happens during a seizure, it would be like the following:


The calm before the storm can only be described as a beautiful setting. It could be the crisp blue skies of a Colorado mountain with the yellow and purple wildflowers swaying in the wind. Maybe, it is sitting in a rowboat in the middle of Fallen Leaf Lake, staring and touching the cold ice melt water or possibly hiking a narrow winding mountain trail only to see tall trees and wildlife. Calm could be staring out of a window, not especially looking for anything in particular, or maybe listening to the sounds of a soft summer rain beating against my window as I lay in bed pondering my plans for the day.

Calm can include the softness of voices like Annie Lennox or Jon Anderson, or it can include the images expressed in the music of Yes as one travels the seas and the valleys. Calm is knowing that you are loved and at peace with oneself. Calm is the peace of being alone on the field, not anticipating what events are about to occur.

Then the unthinkable occurred to that young man who was left alone standing in that field. Ominous dark clouds infiltrated the calmness of the day. Strong gusts of wind swirled about almost lifting the boy into the air. The ground began to rumble, toppling the lad off of his feet. Intense spastic shaking started with the eyes rolling backward as if they were staring directly at the brain. The tongue protrudes itself out of its cave-like mouth, getting pierced by sharp canines, spewing out blood. The circuitry of the brain is overloaded and releases enormous watts of energy to all parts of the young man and unlocks the terrors that are attacking and breaking the calm.

The body loses all control as limbs become tense with rapid movements that are strong enough to break bones especially the bones of the young man. The calm is disturbed by the guttural sounds that emanate from the fast twitch of buccal muscles that are crying out for help. Control is lost as bodily waste products are released throughout the young man’s attire which adds further insults to him and proclaims to the world that he is different. Calm is disturbed by the screams of those who witness this horrifying event as the young lad turns a scary shade of blue as the oxygen is deprived from the young man’s brain. “What do we do?” “What do we do?”

Slowly the ravages of the powerful electrical storm that overloaded the young man’s brain begins to diminish and the devastating effects are noticeable to all. The young man is in a dazed and confused state with no idea of whom or where he is. It is as though a thief swiftly extracted all of his thought processes and left him in the gutter to lie in his excrements. Bit by bit, oxygen enters his airways, which changes his skin coloring from the pale blue to a pinkish hue. The eyes scan the surroundings in an attempt to familiarize himself with the environment in addition to who he is.

“Are you alright?” “Are you alright?” The young lad sloppily makes an attempt to stand, as if he was a foal just rising for the first time. Gingerly, he takes a couple of steps with wobbly knees that require assistance from a helper. Fatigue invades the body rapidly as eyelids become heavy as if a sedative was administered. The young man’s body becomes flaccid, and there is nothing in this world that will disturb the new calm that has overtaken the young man.

A new day has come with an awakening of the mind. Like a computer that needed to be rebooted, so has the brain of the young man. New words flow out like those of the child discovering a world that is unfamiliar. The focus on tasks has never been keener. A bright light emanates from the eyes of the young man who has no recollection of the horrors of the previous day.


My description is inspired by the visual imagery of the graphic novel Epileptic by David B, which provides an in-depth look on the effects of epilepsy on not only the individual but also the extended family members who care for the one with the disease. Epileptic demonstrates a crisis for the mother of Jean-Christophe, the child afflicted with epilepsy, who appeared to be devastated by the child’s latest seizure.

This frame visually displays the worries that the mother has for her son as the graphic metaphor shows her sitting on top of the head of her son while probing the brain of the epileptic child in order to figure out the crisis. This frame also has a monster in it who is licking the boy as if it was a mother animal licking her cub, which is another graphic metaphor for epilepsy. The novel is black and white, which indicates the darkness of epilepsy suggesting the evilness of the disease.

David B: Epileptic – Image Source

I too can relate to this as my family has endured the hardships and witnessed the ravages that epilepsy has placed on me during the years. Graphically, there is a frame in this novel that depicts the epileptic child as the Frankenstein monster who is being chased out of the village as though this child is evil. I too have felt like this isolated being whenever a seizure would take over my body and turn me into this fiend.

In my case, the jury who banished me from school were the villagers and I was the Frankenstein monster that was removed so as not to harm any girl. Fortunately for me now, there are the red and white pills that have added color to these dark frames and this has changed the story ending to a happier one.



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