Carpe Diem: Seizing the Day, Over & Over

By Carly Martinez

This is the true story of an unimaginable diagnosis that would draw the lines of battle between life and death, forever changing those close. How losing hope and finding it again in unlikely places became a family understanding, while rejecting seizures that were invisible thieves a desperate plea. With every heartbreaking failure bringing painful

• Language: English
• Publisher: Carly Martinez
• Release date: Jul 14, 2022
• ISBN: 9798218029920

Book preview

1

The Blank

In my son’s words, epilepsy is the feeling of the zombies in your nightmare finally reaching your ankle in the last breathless moments as you scream yourself awake.

But it wasn’t always this way.

They started as little moments where we would be talking or watching a show or singing a song and I would notice an unusual pause, like a breath skipping lightly. Easily missed. If you weren’t paying absolute attention, you wouldn’t notice anything wrong. I sure didn’t. After all, he was nearing age thirteen. And what teenager doesn’t have a cracking voice?

Still, the moments started to add up. I would glance at him and see a strong yet unmistakable blankness in his stares. Suddenly we were no longer rocking to our favorite jam or watching whatever sports game on television, we were lost in a short but intense moment of nothingness.

Blank.

In the beginning it was sporadic and inconsistent, no pattern to them. Eventually once in a blue moon turned into once a month. Then once a week. Again, just small skips. Like when you’re listening to a song and you skip a beat but don’t lose the rhythm. He was still attending school normally, playing sports and hanging out with friends. I can’t say that I knew the seizures were really seizures at the time, but looking back, I probably knew more than I realized.

2

Spiderwebs

As crazy as it may sound, these didn’t distract from our conversations. We could still talk, just interrupted. His arms and hands would spread to the sides of his body, searching for stability, but then finding it again 2-3 seconds later.

It really started when the looks started – a glazed expression, the complete absence of awareness. A great void had taken over. We were separated from one another; he was separated from even himself. Spinning into the abyss. I was stationary, but we were both silently screaming for help.

That was how epilepsy started for the two of us.

People never talk about the burden that chronic disorders carry for those of us watching our loved ones suffer. People try, but no one can get the words lined-up into a sentence that really hits home, stuttering and apologizing when I’m looking for resonance and understanding. Pity is not the same as empathy. These are the looks of empty pain, knowing they want to offer support, yet entirely unsure of how. Communication proved to be another barrier.

Epilepsy started slowly and rapidly spiraled out of control for everyone involved -- close friends, neighbors, teachers. Seizures were like that feeling of walking into a spider web, nervously realizing you are trapped and intertwined, desperately doing anything you can to shake the web, helpless. Not to mention the powerlessness my son experienced. He would be laying in bed, reading a magazine, then wake up sweaty, confused, and tangled in the sheets. It was then I knew that epilepsy was taking over every moment whether my son was awake or not.

His condition began to get more distinct – different episodes had different symptoms. Some were more relaxed, dazey breathless moments. Then there were the ones that got a little darker, lost in a vast sea of nothingness, blankness of all sorts, with the added element of no hope, love or help for anyone lost in the void – those were the ones that usually came with screaming.

But if I could go back to these kinds of seizures, I would take them anyday. They were nothing in comparison to what happened later.

3

Ninjas for Christmas

The very first hallucinogenic seizure that scared me was Christmas evening. My son and I were visiting family and sharing a king-size bed in what was supposed to be a ‘Silent Night.’

But at four o’clock in the morning, I was violently awakened.

My son was screaming. He hit his head on the solid oak nightstand, and, incomprehensibly, started to attack me. Fists flying, he thought I was the enemy.

I’m trying to talk to him.

What? What is going on? What is this sheer and utter madness?!

He yells that he is trying to protect his mom from ninjas. He doesn’t understand he’s not protecting me, he’s hurting me.

It was then I realized we were dealing with something a lot deeper than I had ever imagined. This was no longer some sort of weird growth spurt.

The reality hit me like a brick wall… this was a seizure.

Epilepsy flashed across my mind; it wasn’t just another term on WebMD.

This was real.

We wrestled for what seemed like forever. No reasoning or yelling got through to him, eventually he passed out and I was able to put him back in the bed. I was entirely too hyped up on adrenaline, shaking and pacing, trying to make sense of what I had just experienced.

What time does the pediatrician open?

Closed on Christmas, obviously.

4

Rage

I’ve got to be honest, I don’t have much experience with this, said the doctor. The only other patient I’ve had with epilepsy I had to refer to a specialist.

Perfect. Of course even he doesn’t know.

Worse, he actually Googled the condition on his computer. Are you serious?!

He printed out a basic definition of what epilepsy is and what a seizure looks like. In truth, I think he was giving the information to comfort him rather than me. Like he was doing a better job with the diagnosis.

Still, he did hand us a prescription: Keppra. My heart sank.

Keppra is like the Tylenol of epilepsy. It’s the first time go-to prescription, if you will. Generic advice. You’re supposed to be our expert, our primary caretaker, and this is all you have to offer?

I was at a loss. This can’t be it, there’s got to be more.

Doctors are seen in society like gods.

This one was all too human.

I knew full well that Keppra was stereotypically horrible and was petrified to give that deadly pill to my son. Having gone to school for pharmaceutical technician training years prior to my son's diagnosis, I recalled particulars from those classes. Keppra rage was a real concept, being listed among the other fine printed side effects within the pill inserts.

The knowledge was nerve wracking to say the least - was that what was going to happen to my son? Would the pill work and help, defying the stereotypes? Were we going to be opening the door to a deep, more complicated box of misery?

I do remember taking the time to read the insert again, making sure that I was clear as to what the major side effects could possibly look like. The list was extensive. Even with all of my prior knowledge, I was shocked to read that seizures were a side effect of Keppra, thinking how can a drug potentially cause what it's meant to fix?

Other side effects included extreme fatigue and rapidly decreasing appetite, along with irritability and aggression listed as well. That didn’t even include the separate list of side effects caused by withdrawal, on the chance that the pills didn’t work! The faith that was needed for the pill to work for my son was barely there to begin with and getting smaller with every line I read.

Unfortunately, though I gave the pills to him as prescribed, the worst I feared came true. My sweet, calm and relaxed son was suddenly screaming, fighting and throwing rage fits to bring the walls down - literally. There was a confusion in his eyes that was not natural, a redness that seemed to radiate from his pupils that could not be calmed or cooled, no matter what efforts we put forth.

Keppra was not stopping the seizures, but it was increasing a rage that was not manageable. Knowing that stopping prescriptions pills cold turkey was a dangerous, even life threatening problem that we were risking, I took the warning and leapt.

That would be the first of what would eventually become dozens and dozens of difficult and occasionally questionable decisions along this long journey.

With silent seizures still happening, and some seizures that were more convulsive but with sporadic frequency yet none as violent as the initial ninja fight night, this disorder was already showing the relentless unpredictability.

5

Horribly Bad Mom

I started to research the proper type of doctors and specialized doctors that would be the best for my son, no more Google dependent pediatricians. I learned that there were two types; the neurologist, the first go-to that people send you towards when dealing with most, if not all, brain disorders. The second was an epileptologist, the doctor who specializes in epilepsy, seizures specifically and what causes them. Knowledge and research being a passion of mine for as long as I can remember, I knew there was more to offer my son than a one time, generic solution that made everything worse.

With a determination that any desperate person can relate to, I began calling. I called numerous places in cities up and down our long, illustrious state, areas that were notorious for cutting edge medical advancements as well as top notch doctors. Finally finding a name that came attached to rave reviews from other parents as well as a recommendation from the national hotline for individuals with seizures, I came to the doctor I would lay my hope in next.

I was ecstatic, my hopes were high and my son’s world was going to be set correct again. I built my sons hopes up higher than my own, in retrospect a huge parenting mistake because the let down was only that much harder. From the moment we heard the diagnosis, I was simultaneously researching alternative methods to healing as well as following the conventional western medicine route. A small thread led to a few articles that were buried deep in a Google search that said that ‘maybe’ medical marijuana (mmj) would work, but nothing was concrete for anyone to hang their hat on - but I don’t wear hats, storing the knowledge away.

On a beautiful Friday, before heading out of town, we met with the top-of-the-line epileptologist that I had scoured the earth to find. I had been honest, we were scared of more pills; Keppra had caused a severe rage with no help with seizures whatsoever, however the CBD we were trying did seem to help, if not slowly. Brushing me off as if my ideas were nothing more than dark specks on her pristine white coat, CBD was rapidly dismissed. I was meant to be seen and not heard as a parent and this doctor was clear on that approach - her way or no way.

He was prescribed Trileptal.

I filled the prescription, all the while the voice in my mom gut, my wiser self, the voracious reader within me - the ‘voice’ I should have listened to - said to wait. In part to the severity of the medication, he was needed back in the office to test for his blood levels within a few days.

But why lie and allow them to poke my son if the pills weren’t even in his system? They would find out eventually anyways. While I knew that (at the time) medical marijuana in all forms were illegal and frowned upon, especially in regards to the youth, I was willing to take a risk. I mean this was California and it was after the new millennium after all. So, three days after the prescription was filled, we were back in the fancy office, in the fancy neighborhood, in the fancy area code and surrounded by not-so-fancy frowns.

That was where my mothering skills, my competency and my confidence would be, for the last time, questioned then shattered.

At just the mention of the prescription not being taken immediately as per her instructions, she instantly became a different person. The same doctor who praised me for finding her was now hissing in my face, spitting each word out - I was a ‘horribly bad mom’ for waiting to dose my son with the prescription she had written. The shock on her face was audible; her already sour, frowning demeanor turning sharper as her tone dropped, to cut me in the only place I will ever admit stings my pride - mothering.

Past experiences left me highly distrusting of people, regardless of their title earned. I knew that no matter who was behind the title, there was always a mask that dropped and revealed a normal, everyday, usually overly opinionated human.

She berated me for many long minutes about how I was costing my son precious moments of his life, that if he died that it would be all my fault and my fault solely. With no regard for my son, she loudly reiterated that death was imminent now and that it was solely because I had decided to postpone her