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I Live With Epilepsy, but It Doesn’t Define Me

My name is Jared Alexander Muscat, and I have epilepsy.

I have chosen not to let it define me, but I have to let it be beside me.

For a while, I didn’t want to let that be the case. This past Thanksgiving weekend changed that dramatically. I had three grand mal seizures, leaving two of my best friends scared and me in an ER room with my mom and dad rushing to my bedside, petrified. Two days later, starting around midnight, I was having petit mal seizures every half-hour that I tried to hide from everyone, hoping they’d just go away so that a normal Thanksgiving weekend could return and my dad and I could go play some catch. But they didn’t, and everyone eventually noticed because 12-plus hours of seizing will mess with your ability to communicate, and those who love you know you best. By nightfall, I was back in an ER room and admitted to the hospital with my mother, father and brother by my side and my wife-to-be on the phone in tears.

By the end of the weekend, I had too many seizures to count, had one of my prescription dosages increased and a new medication added. I couldn’t remember the last work post I made, and I had a headache the size of Texas. I also had my loved ones by my side in the hospital every second of every day, holding my hand and supporting me, watching me cry, playing cards and bringing me food and real clothes. I had my wife-to-be calling me and sending me text messages, begging to fly up to join the party. Every single member of my family stopped by with hugs, kisses and their horrible Christmas caroling voices, or they sent Snapchats, text messages and phone calls of love and strength. My co-workers kept up relentless support, offering help of any kind and beautiful words that melted my heart and added resolve. My boss kept repeating, “Health before your job.” And then, I was released from the hospital, and my mom drove me back to my cottage and fiancé.

So, here I am. Still somewhat foggy and somewhat sad, but ready. Without my license and not 100 percent prepared. A little bit scared of the immediate future but excited for the long tenure. A little bit timid of the coming days, yet eager for my kids’ first steps. Not fully confident in the skills I use to make a living, but working through this message for tomorrow and excited for my wedding next year, knowing it will all sort itself out shortly.

My name is Jared Alexander Muscat, and I have epilepsy. It doesn’t have to define me, but it does have to live beside me. I have to take a lot of prescriptions. I have to be diligent about my sleeping habits. I can’t drink alcohol or do drugs. I can’t look at strobe lights. When my fiancé and I have kids, she has to be on late night patrol. I can’t drink coffee.

I will have seizures again.

But because of this wretched weekend, I am going to change the way I live my life. For years, I tried to push my epilepsy to the side, cast it off as a set of pills and a sleeping condition. Told my friends I couldn’t drink beer and tried to do away with stress by watching re-runs of “Friends” or “Morning of the Earth.” I did everything possible to ease my parents’ minds, mine as well. Lying to myself about what was going on in and to my brain.

I know now while I don’t have to let my epilepsy define me, no matter what, it will always be right beside me. When I look back on what I have been through, I am so fortunate to be alive and functioning the way I am. I am still here for a reason. Mother Nature wants me around; I want me around.

So as I turn my health around, I am going to use my writing and surfing skills to help raise awareness about epilepsy and make a change. How exactly  — I am not yet sure. But something needs to be done because something can be done. Humans are incredibly smart, and I believe a cure is around the corner. And there is absolutely no reason anyone should have to suffer through seizing.

man on surfboard

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