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An Epilepsy Story: Living with TLE

Morgan

Morgan’s Story
When I was 15 months old, I had my first seizure. I had been sick and running a very high fever. According to my mom and my dad, I had a febrile seizure that lasted for 90 minutes. Three months later, I was hospitalized again due to another seizure. Originally, I was diagnosed with tuberous sclerosis complex, because of what appeared to be an ash leaf spot on my stomach and MRIs showed a tumor in my brain. My mother was told that I would likely be mentally retarded.

When I was eight years old, I started to have more seizures. I remember my first seizure very clearly. It started as a strange feeling, like I was in a situation never seen to me before, and it grew into a terrifying situation. I no longer saw, smelled, heard, or felt the world around me but rather I saw a skeleton in the attic of my mother’s house. It was like watching a horror movie. I began having more sensations similar to this for the next year, and it wasn’t discovered until I was nine that I had been having seizures. My fourth grade teacher assigned a family tree project, and I was in the middle of presenting my family tree to my fourth grade class. Then the funny feeling came again, and the classroom wasn’t there anymore. Later that year, my mother took me to see my pediatric neurologist from when I was a baby, and my neurologist told me I was having complex partial seizures. I was prescribed Tegretol to begin with, and then for the next several years my medication was adjusted several times, and I became unresponsive to many medications I was prescribed. I remember taking as much as 1200 mg of medication a day.

If you’ve ever had a seizure in public, I suppose it might be easy for you to understand how school was for me. I was having seizures on a weekly basis, and on more than one occasion did I come out of a seizure to find that I had wet my pants. It was humiliating, degrading, embarrassing… any synonym you can think of for that. I had anxiety about having a seizure in public. To be perfectly honest with you, I would absolutely blame the reason for my being bullied in middle school and high school on my epilepsy. I couldn’t do a lot of things that “normal” kids could do. I couldn’t go to a lot of haunted houses (because of the strobe lights), I couldn’t swim by myself, I couldn’t get my drivers license until I was nearly 18, I couldn’t play a lot of video games because of photosensitivity, and I always felt like I was more or less a broken person.

When I was fifteen years old, my doctor told me about the possibilities of epilepsy surgery. She had just taken me off of my latest medication, which was poisoning me due to a bad reaction with another anti convulsant medication I had been on. She told me that in the St. Louis Children’s hospital, there was a very good neurosurgeon and that she had sent more than one patient down to St. Louis to get the surgery to help stop seizures. I went to meet with this doctor later that year, and after several tests and days of observing my seizures and normal brain activity, he located the place in my brain where my seizures were coming from and scheduled me for surgery after my sixteenth birthday. The events of the surgery are fuzzy to me, but I remember that they took out scar tissue on my right temporal lobe. When I was recovering, my doctor told me that I did not have TSC. He said that I was misdiagnosed when I was young, and he then diagnosed me with temporal lobe epilepsy.

I was seizure free for almost two years after the surgery. Unfortunately due to severe depression my senior year of high school, I completely stopped taking my medication for several months. On my 18th birthday, I woke up in the emergency room from having a grand mal seizure. It was the second grand mal seizure I’ve ever had, so I felt terribly sore afterward. Ever since then any seizure I have had has been in my sleep. I have had about four seizures since then (so within the past two years I have had four). My last seizure was in February of this year, so I am currently able to drive again.

Because of my epilepsy, I changed my major my freshman year of college to pre-med. I decided that I wanted to be a neurologist to help children and teenagers struggling with epilepsy. This past semester, I have changed my major again to microbiology with a neuroscience minor so that I can do neuroscience research to further the progress of treatment for epilepsy.

Last year, after being inspired by our local To Write Love On Her Arms uChapter, I formed a group on my campus called FRIEND (Fund-raising, Research, and Information on Epilepsy and Neurological Disorders). I was angry that people made such a big deal out of breast cancer awareness and that it was such a widespread cause. I could not stop thinking, “Epilepsy is just as important as breast cancer. This isn’t fair!” I felt like no one cared about the cause and the stigma was definitely annoying. I hated having to explain to people over and over that, “No, you should never stick anything in the mouth of a person having a seizure,” or “No, I do not always shake,” or watching someone make a joke about seizures and pretending to convulse. The stigma and the lack of a cause on campus annoyed me, so I created FRIEND. I contacted one of my neuroscience professors to help me create a group for epilepsy awareness. I am trying to organize events on my campus to raise money for neurological research foundations and raising awareness of epilepsy on campus as well as teaching people what to do in case of a seizure. I now guest lecture for that same professor every semester for the unit in her class on seizure disorders. I enjoy being able to talk to students my age (who also know a lot about brain anatomy because of her class), and I feel like I am making a difference in how those students perceive epilepsy. My biggest challenge now is to just keep the group going, and I am sure it will be going strong even after I graduate because every semester I am getting more new members. They are people who have epilepsy, have loved ones with epilepsy, or are people who want to help reduce the stigma surrounding people with seizures.

And on the bit about my doctors telling me I would have learning disabilities — I am an A-B biology student at an accredited university with a 3.8 GPA, and a part of three different honor societies. I couldn’t be more proud of myself now.

Check out Sita Gaia’s Story

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Jessica K. Smith
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Founder and CEO Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.

3 Responses

  1. Jean
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    Morgan, Thank you for sharing your story! You are an admirable young woman. I understand your feelings when you say you get angry that there are so many events for fundraising for other diseases. I feel the same way. My daughter was diagnosed with Epilepsy almost 3 years ago. She was 17 and had a grand mal seizure in her high school Chemistry class. Jessica, Thank you for this blog I love reading the stories. I hope to do some awareness activities during November.

    • Morgan
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      Thank you, Jean ๐Ÿ™‚

  2. Jessica Keenan Smith
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    Jean,
    Thank you so much for your comment! I appreciate your feedback and I'm sure Morgan does as well.

    Feel free to send YOUR story in. It's just as important to get the perspective of those who love people living with epilepsy.
    Best,
    Jessica