Starting Over With Epilepsy

What it’s like to be 25 and a sophomore in university with epilepsy

Discouraging is the first word that comes to mind. Sitting in a class with 18 and 19 year olds who are skinny, healthy, and smart is intimidating. They are fresh out of their high school math classes, while I haven’t had to do basic algebra in years. They just spit out formulas like it’s nothing. Meanwhile, I’ve had to start over, completely. I spent months struggling to just be able to go out to shop for a couple of hours because I was so sick and 15 pounds underweight from medications and their side-effects. I remember just lying in my bed, holding my head or stomach with my eyes closed listening to Star Trek TNG  in the background to calm me down and distract me from whatever ailed me that day. I wasn’t thinking about formulas, I was thinking about getting through the next hour and hoping that maybe, just maybe, I would wake up in the future and Dr. Beverly Crusher would be there to cure me.

I was diagnosed in early 2015 at the age of 24, with left temporal lobe epilepsy and associated myoclonus. The diagnosis happened during my second semester of school, and it was a devastating blow. I experience absence seizures, regular nausea, tremors, deja-vu and I will also jerk around suddenly which looks like a violent chill. Sometimes I just stand up, for no reason. Sometimes my right hand will just drop or throw whatever is in it (my iPhone is now carried with the left hand). The newest and greatest deficit is word retrieval. As you can see, I can write just fine. The word retrieval only happens when I speak. When I write, I write a lot, due to hypergraphia. An unexpected strength given to me by my epilepsy. The urge to write is almost unstoppable at times, so I try to channel it into something productive. It also helps a lot with those ridiculous 10 page essays professors assign at the beginning of the semester. I can bust one out in less than 5 hours, given I have the right information and research done. But, If I am called on in class, sometimes the words to answer the question won’t come out. I will get halfway through a sentence and not be able to speak the word that is needed to finish it.

A couple of weeks into classes, students start sitting further away from me and avoiding eye contact at all costs. I’m very odd to them; no one wants to sit next to someone who may suddenly throw something or jerk around. I get it.

Last semester, I stood up in the middle of a mid-term exam, dropped everything on my lap and then just sat back down. Needless to say, that was the last test I took outside of my school’s disability resource center (DRC). What an invaluable resource it is. At the beginning of each semester I meet with an advisor from the center and she sends my professors an email letting them know that I am registered with the DRC and that my illness causes unexpected issues to arise at random. And then I meet with the professors personally to explain further what could happen. I am not obligated to tell them what is wrong with me but I do anyways. We hash out details about if I miss some class or if I am late because maybe I was too nauseous or I got extra lost that day. I hate that one, but it happens. I will have an absence seizure and just forget where I am and wander around for a while. When I come to, sometimes it’s too late to bother going to class or I am so far away the class will be over by the time I get there. I just send them an e-mail and the professor will fill me in on what I missed.

Studying isn’t much easier though. With the absence seizures I have to set a timer to go off every 30 minutes when I am reading or writing. Every time it goes off I go back and re-read whatever it is I was doing. I notice I miss quite a bit if I don’t do this, and I want to take in everything I possibly can. It takes a bit longer, but it’s worth it and it shows in my grades. It’s the only technique that works for me, and it works well.

That is as good as it gets for me, but it’s good enough. It took me one failed semester (the year I was diagnosed) and months of being sick and trying 7 different medications to get back to school in the condition I am in. When I dropped out of my second semester to go home after my diagnosis, I cried for so long. I felt like a failure. I had to quit my job, break my rental agreement and drop out to move back in with my parents. I was visiting doctors, neurologists and in the hospital every two weeks for test after test after test only to find out, that sometimes it just happens to people. There isn’t any rhyme or reason behind why I have this condition. No brain tumor, no injury, no virus, nothing. When we had finally established that, I felt empty and sad. The only thing that could help me was medications. No cure, just drugs.

Over the summer between my first and second semester before my diagnosis I had a blood clot in my leg, which is why I look so irritated in this picture. I was so afraid it would keep me from going back to school; forget the pain, school was on my mind. I had already had gallbladder issues a couple of years before this, and had it removed eventually. But, it interfered with school then too. This was just another sign from my body telling me something deeper was wrong.

Every day, I wake up and take my medication. I take it again in the middle of the afternoon, and then again right before bed. Now that I’ve gotten my condition mostly under control, I feel a lot better and more empowered. I am 25 going on 26 and a sophomore, and while the discouragement that comes with knowing I am starting over with a bunch of teenagers is hard to overcome, it is also a strength.

I don’t make the same mistakes they do, and I definitely don’t disrespect my professor by packing up loudly five minutes before class is over. Some things seem redundant to me while it is brand new to them; I like having that advantage. I also like knowing no one is going to sit next to me and irritate the crap out of me. I am so introverted, the thought of being in a classroom filled with people is a nightmare, so sitting alone is fantastic. My professors also don’t talk down to me like they do with the others, another advantage I enjoy. They know my situation and that I am just grateful to be in school. I am not afraid to email them, show up during their office hours and ask questions and surprisingly, most professors love it and so do I. I take advantage of the time I get to be in school, and realize how lucky I am to not be so young and naive. It’s STEM all the way for me, I refuse to wind up in some cubicle.

via GIPHY

A lot of people my age made that mistake, and to me they seem miserable. Starting over, regardless of my illness, carved out the best path for me. I got to see others make mistakes and learn from them in the time I had to myself.

Going through this entire experience has turned me into a cynical person, but for the better. I question everything and everyone, I write and say what is on my mind, and I learn so much more. I get the most out of my experiences, and hope that the next couple of years go smoothly. Starting over can be hard for anyone, but I learned that it’s worth it. After finally reaching sophomore status, I have gained a new form of momentum to keep me going. That momentum is called take your pills and get on with it. So what if I get lost occasionally or have to stop to throw up, I keep on going.

It's hard enough to discover in your 20s that you have epilepsy, but harder still to return back to college with the side effects of epilepsy. Learn about this woman's experience and her message of strength and fortitude to do what's needed to achieve your dreams.

Kate Sondergeld
Kate is a 25-year-old sophomore and blogger. In 2015, she was diagnosed with left temporal lobe epilepsy and associated myoclonus. She writes about her experiences (the good, the bad, the ugly and the funny) with her illness on her website epileptea.com.
Kate Sondergeld

Kate Sondergeld

Kate is a 25-year-old sophomore and blogger. In 2015, she was diagnosed with left temporal lobe epilepsy and associated myoclonus. She writes about her experiences (the good, the bad, the ugly and the funny) with her illness on her website epileptea.com.

2 thoughts on “Starting Over With Epilepsy

  • January 31, 2017 at 11:57 pm
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    TLE is amazing in how diverse it is. I’ve had it since I was a few days old and my symptoms aren’t the same as yours. There are, however, still issues that arise because of my Epilepsy.

    • Kate
      February 1, 2017 at 4:26 pm
      Permalink

      It’s been a roller coaster ride figuring out how to mangage all the symptoms. It’s a tricky illness, the brain is very complex.

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