My Rebirth

by Nicole Afra

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Have you ever, as an adult, considered asking one of your parents to sit in the bathroom while you showered? The first time I had to, I made the wrong choice. I was already bloody, covered in my own saliva, and could taste the dirt in my mouth from the Earth. My eyes and brain could not decide which way we were spinning. My Father was enraged with me, and I could not find it in myself to care why. I wanted a cigarette and against his pleas, snuck out to have one while he used the restroom. He found me outside the front door, cigarette crushed in a death grip, partly on the cold concrete, but mostly in the dirt. He could not understand my indifference toall the dangers I constantly put myself around. I could not understand how he did not see that dangers could not be avoided. No matter where I was, the seizures would find me like the monsters under a child’s bed. I just wanted a cigarette. I should have asked him to sit in the bathroom while I showered. I did not. I woke in the ER later that night, covered only in a sheet from my younger sister’s room. Something had to give. Something would have to change. I would have to. 

Nowadays, my rebirth begins again everyday just before dawn. Every night, I always make sure to set my alarm, but it is rarely ever needed. My body seems to wake minutes before it ever has the chance to go off, and it is often that I have already untangled myself from my sleeping husband and made my way to the kitchen for coffee. The mornings are mine. Before the morning birds rise to find their worms, the world is silent, and giving me my chance to put my mind in order. A series of stretches and small exercises allows my body to prepare for the day, while I make sure my mind is in need of nothing. After waking my husband an hour later with coffee and his vitamins, I take my small and anxious rescue dog for a short walk before returning home to grab my headphones for my walk. This walk is longer, taking about an hour. Before leaving the house, I am always sure to put sunscreen on my face, put my medical alert necklace on, and grab the magnet that activates my Vagus Nerve Stimulator. 

I have learned to treat all parts of myself as children I am caring for, giving each part individual attention and care. I have affectionately named parts of my mind, body, and soul, treating them as their own characters in an epic adventure story of love and loss. When walking, I imagine Nicole, the forefront of my mind, to be lounged back in a lawn chair armed with only her sunglasses and magazine. She will lead the day but for this hour is simply enjoying the sun. Nicolina, my soul, is granted the gift to dance around every corner of my mind and wander where she wills herself. She dances through memories both good and bad, creates dreams, and soars with hope. Nikki, my wolf like instinct and impulsive chaos, is leaning relaxed against a wall wearing her notorious leather jacket. She used to run this operation but has since been demoted to captain of the army only during times of war. There is no fight or fear here, but she is alert and waiting for her moment. I am aware Nic, my body, is in love and on autopilot with conviction of completing this 3-mile walk with control and power. It is morning but the day is already hot and humid. Nic is habitually breathing twice in and one long breath out, holding a straight posture, and checking all pains. In this moment things all are good and in check. While I walk, I reflect. I am both ready and willing to deal with any troubles as they appear. I am proud because it has not always been this way. 

I realize in retrospect of my life, that everything leading up to this point was simply the walk before the run in a major Olympic event. Unfortunately, it is important to remember that during the times I will refer to the only comfort I could give myself was the idea that I was constantly wondering if I had finally in fact gone mad. I was sure that crazy people just don’t know they’re crazy. 

Years of constant seizures leaving me bloody and bruised every few days left me unable to work, drive, cook anything in the stove or oven, and completely afraid to venture out into public. In 2014, a violent seizure left me unable to speak for over a week because I had bit my tongue so badly. I did not realize till the swelling finally went down that I had permanent nerve damage on the right side of my tongue and can no longer feel it. An average seizure would leave me with the feeling of severe whip lash from a serious fender bender and a head that craved to explode just to end the constant pounding that would rush me upon waking. The biggest problem of course would be what I would fall on during a seizure. It is not normally necessary to become aware of glass furniture in a friend’s home but after falling on two different coffee tables over the last 13 years, I can say I am fully aware of who’s house is just not “epileptically friendly.” 

After the seizures started, my social life became a whole different problem. Right away, certain people assumed that the sudden onset of these seizures had been set off by a hidden drug habit. Others simply would not be able to handle the stress of watching my muscles lock up, my body fall to the ground, violently convulse, and wake up disoriented. They would stop answering the phone. I do not know if they could even consider what it was like for me to go through this. Now, I am able to empathize with this kind of person, but during the first few years, this was the most painful thing. Some would do their best to include me for birthdays and Friday nights out, but it would become clear that having to worry about me was too much and the invitations started to cease. Eventually my jealousy and anger of healthy friends being able to drive, work, and shower alone, would lead me to push the rest of my remaining friends away. I found myself unable to connect with the problems of an average day for most people. A friend would tell me of the horrible cop that pulled them over while speeding on the way to work and I would scoff at them. They could work and drive? They had no reason for complaint. 

Doctors gave little comfort in why this was happening and how to make it stop. After the first episode, I was told by a doctor that I was working too much, not sleeping enough, and that it was a fluke. Sleep and it would never happen again. Two weeks later, I had a second grand mal wa and the same doctor told me it looked like I had epilepsy, it was time to find aneurologist. I had no way of seeing around this corner and no way of knowing that the seizures would soon become the easiest part of this diagnosis. In these beginning stages, my neurologists told me it was a matter of finding the right medications, and I had every reason to have hope to be seizure free. 

The diagnosis of epilepsy is difficult because it is really a blanket term to describe dozens of epileptic syndromes, that cause many different types of seizures for different reasons. To get this diagnosis, one only needs only to have two or more seizures in their lifetime without being provoked by something like drugs, injury, or allergy. I have been put on more than 15 different anticonvulsants, almost all with intense and mood-altering side effects. 

I have lost hair and weight, gained weight, developed rashes, uncontrollable body tremors, stomach ulcers, sunlight induced overdoses, and a constant haze over my daily life that I could not escape. At one time I was on four anticonvulsants, two different antidepressants, and two antianxiety medications, three times a day at their max doses. None of these medications slowed my seizure activity. It would take doctors four years to realize that one of the medications 

I was on, known as Tegretol, was causing a type of seizure known as partial-onset that are not natural to me. These seizures were the most horrific. During my usual grand mal seizures, I am unconscious and feel no pain. During these partial-onset seizures, I am fully aware that I am no longer in control of my body and am forced to watch for minutes as I convulse. During one of my many rebellious periods, I decided I would make chicken nuggets in the oven. I was taking the chicken out of the oven when that seizure came on. I was then locked in place, unable to protect myself as the convulsions rocked through my arms, and I watched as my body shook hot chicken all my arms and feet. 

My mental health would not be able to handle so many events like this happening back to back, most occurring before being able to recover from the last. I had done everything right as an excited and driven young woman with dreams of becoming a firefighter paramedic, and now was being told that there was a chance that the seizures may never fully go away. It only took a year and about 52 seizures before I finally found myself afraid to leave my home. Another two years after that, I left my parent’s home angry and self-destructive. I hated my body for its betrayal and would punish it by ignoring my basic needs like eating and sleeping. It did not seem to matter if I took care of myself or not. The seizures always came back to torment me. I moved into a horrible environment where Nikki would rage against life and any ideas of hope Nicolina could give would be tossed in the garbage. Nicole would become dormant, unable to assess any situation rationally. 

Another five years would go by and I became the addict that people assumed me to be in the start all of this. I ended up finding myself broken and bloody in front of a judge for an offense I committed in a manic rage. The judge was unsympathetic at my excuse of having a bad day and made the choice to throw the book at me. After this, my mom told me I could not go on like this, and it was time to find someone to talk to. This is when I met Trish, my therapist. I had been to therapy before but was unreceptive to their advice after finding their attitudes authoritative and condescending. Trish was different. Her easy-going style was mixed with a blunt honesty and charismatic understanding to what I was going through. She asked how I was feeling and was not surprised when I responded that I had no idea. She would end up planting seeds, packed with tools and maps to find my way out of the hell I had built for myself. I laugh with her now about how sneaky she was leading me slowly out of my own way. This was the foundation to the changes I would come to make. 

Another year went by and though I would not admit it out loud, I was beginning to feel better. It was around this time my friend Caitlin, one of the sweetest souls and purest of people, would call to let people important to her know she was planning a dinner and had an announcement to make. I had grown up with her and her brother. She told us that she had found out she was pregnant and had had her first ultrasound. There was a problem. Along with the beautiful baby she could not wait to see, there was also a tumor. Doctors explained to her that she had two options, abort the child and start treatments right away to give her another two years of life, or keep the baby, forgo treatment until he was born, and maybe see his six-month mark. She had already made the choice to keep the child. She ended up seeing his first birthday, and I ended up speaking the longest at her funeral. This is important because before she passed, we had a candid conversation about my jealousy that this world would release her from her torment, while I would have to struggle for the rest of my days. She laughed at this and told me to suck it up. That we should all learn to get back up after a fall, even if I did it more often than others. I took her advice seriously and went back to Trish with a burning passion to get better. To live when my friend could not. 

In 2019, I found myself married to a calm man with a soothing spirit. We have made a beautiful home with a spunky dog. I would then find the courage to seek the best doctor who would solve the mystery behind my illness. After running many tests and reviewing my records he concluded that what many of my doctors were calling episodes of ADHD as a child, were me having absence seizures. A small daydreaming like seizure that is often confused with the other disorder. I really had done nothing deserving of this. They had just always been there. This doctor also deemed me part of less than 2% of epileptics that have refractory epilepsy, meaning 100% drug resistance, and suggested VNS surgery. I now have a pacemaker, who I lovingly refer to as “Robbie the Robot.” I am also on a ketogenic diet and exercise every day. The diet includes lots of bacon, which my husband enjoys, and sugar substitutions like Swerve. All of these little things will hopefully bring an absolution to a problem I thought would never be solved. 

My rebirth is as an intellectual, capable of understanding pain, and unafraid of making changes to deal with my troubles. I am someone who not just set the fire of misery but tried to burn myself down with a savage rage. I am someone who finally learned to capture that same flame and now uses it as my lantern to guide the rest of my journey. One of the most important epiphanies I have had was that my body was not the bad guy, but a victim of circumstance. The only true bad guy of my story was myself; a young, scared woman who had to try all the wrong ways before finally figuring out the right. My rebirth is no longer a onetime event but now a daily activity. 

I am almost to my house now, and Nicole puts her magazine away and pulls herself to attention. She is ready to roll up her sleeves and take control now. I have given myself the moment it deserves to reset. Now it is time to get my stuff together so my sweet and dependable husband can drive me to class. All parts of myself are ready and excited to participate on this new chapter in my life. Like the decision to try for surgery, the idea of going to college is yet another gift to my mind for being brave enough to find out she was only bent and not broken for good.