I recall waking up out of unconsciousness, blinking dazedly, seeing the ceiling of the living room and thinking how odd that there’s a mask of some kind on my face. Then, I noticed there were men encircled around me. I felt intimidated and scared, what was going on? The fear must have been apparent upon my facial expression because next came murmurings of what I now assume were comfort and reassurance, but it wasn’t clear to me at the time. Then they were talking pointedly with my parents. What is going to happen to me? After that, I was assisted out to the red Ford Explorer and put into the back seat to lay down for the ride up to Primary Children’s Medical Center.
It was December 31, 2000. I had just turned 12 days earlier, and it had been six years since I had been diagnosed with epilepsy. Six years since the last noticeable seizure, and the first time I had ever had a neurological event severe enough to go to the hospital.
It was a long time at the ER and it has never been clear what happened. Ironically all I do remember is sitting in an examination room in what I didn’t know was my new silk nightgown I received for Christmas. This medical person was asking me all these questions that I didn’t know the answers to. How was I supposed to know the date? How was I supposed to know what I had gotten for Christmas? Had Christmas already happened? Then I saw the scared look on my mother’s face and I knew this was going to be a long journey.
Interestingly enough, I also remember was that about one month prior to what we call the “breakthrough-seizure,” I hit puberty and my period began. In retrospect we believe it was the fluctuation of hormones in my pubescent year(s) that triggered it.
It really hadn’t occurred to me that my diagnosis made me different from everyone else until that day. I hadn’t ever had a seizure severe enough to disorient and disable me like that one did. Initially, back in 1994, the neurologists thought my absence seizures were of a juvenile form of epilepsy – take the medication, control the seizures, and I would presumably grow out of it. It was obvious as I sat in the ER at PCMC that this wasn’t the case.
So a new round of neurological tests an EEG and MRI, and a new regimen of medication was the decision. It would later be presumed, after the tests, that because I had no brain-damage of any kind or any malformations in my brain to give some sort of cause to the seizures, that I have a genetic form of epilepsy. My brain is just more vulnerable to the triggers of seizures than others. The updated diagnosis? A generalized form of epilepsy – which meant that I no longer was expected to just have absence seizures, but a slew of other seizure types due to the genetic nature of it. I wouldn’t grow out of it. This was devastating.
In retrospect, I don’t know what has negatively affected me more throughout the years, the seizures or the medication for the seizures. Seizures just suck. But the medication, the dreadful Depakote, really affected me, and sometimes does still. I was feeling so down. I was so tired – so dulled in my mind. I gained weight fast. I was loosing hair just as fast. My gums became inflamed and sensitive. In my mind, I wasn’t who I thought was “me” anymore. The transition was terrible, but it would prove to keep the seizures away, for the most part.
School kept me distracted from how I felt and kept me focused on my goals. I got back to the “normal” schedule. I got super involved with extra-curricular activities to ensure maximum academic and social retentions, despite the depressed sense of self I had as a result of not really understanding what the heck was going on inside me. Middle school was, indeed, a struggle but, academically speaking, I did really well. I stuck with the smart kids and tried to be friends with the popular kids. I aimed for acceptance despite what made me different and I was prepared to please.
The same can be said of high school, until socialized messages regarding physical image really began to get me down. Even though the seizures were well controlled, I pleaded with my parents to change the medication, I hated the way I felt and I hated what it did to me – particularly the weight and hair issues. So during the summer between sophomore and junior year we consulted with my neurologist and she suggested Zonegran. It would be a near-tragic experience.
During the medication transitions I was sick and I wasn’t getting well very fast. I would try to do the normal summer stuff – go to girls camp, EFY, etc, etc, etc. It just wasn’t fun anymore. If I wasn’t feeling down about myself before, I was then. Nothing was appealing or appetizing. I was apathetic. I didn’t eat much – which on the one hand was great because I was shedding pounds fast, but on the other hand it was too fast and seemed almost like anorexia. I had no idea why I was acting this way. I was lonesome. I was depressed. I wanted to hurt myself. How much of all of this was a result of being sick? How much was the new medication? It was difficult to differentiate. When the summer homework for my upcoming honors English course arrived and I couldn’t comprehend the reading, it was time to call the neuros at PCMC again.
So, we chose the “safe” medication. The one we knew would work and the one whose side effects we knew how to cope with. I was back to square one with Depakote, but I was more myself than I was with Zonegran. This time I was told something by the neurologist (as I was a teenager in high school) that while on Depakote I shouldn’t become pregnant and have children, but that wasn’t what I heard.
What I thought I heard was that as a result of taking the medication I wouldn’t be able to have children at all – that I wouldn’t be able to conceive. A new level of devastation had come into play with my medication. I would silently try to come to terms with this for several months – almost years before I realized what she meant. It was a warning to not have un-protective sex while on Depakote. In retrospect, I understand why I was told this, as Depakote has horrendous track record for birth defects. I just wish, instead of side-stepping a short talk about sex, that the neurologist had just been blatantly honest with me about it – doing so would have saved me so much misunderstanding and grief.
During my high school experience I was living this “normal,” life where I seemed like a typical, goal-oriented, high school girl - who, although not happy with her image, just wanted a successful academic and extracurricular experience so she could get into the college of her choosing. The whole time, I hated what I saw inside this typical girl who happened to be me. Physically, I didn’t look “pretty,” and I hated myself for it. I hated that it took me three times as long to do homework than the average student in my classes. I hated that I needed help to get through the homework and get it turned in on time. I hated that because of my slower processing (due to seizures or medication, it wasn’t clear) I did poorly on standardized tests, such as the ACT. I was depressed, and no one seemed to know it.
In spite of my inner-sadness, all of the time I spent trying to be a smart kid, a popular kid, and a leader actually paid off. I graduated from Woods Cross High School with high honors and scholarships awaiting me. I was a Deseret News Sterling Scholar in the department of Family and Consumer Sciences; a Utah Scholar; and I would later become a Youth Ambassador for Midvale City.
With a generous invitation from Utah Valley State College (now UVU) I chose to bleed green as a
UVU Wolverine. After six years there, I graduated this past April with my Bachelors Degree! The areas that I felt inclined to study were American Sign Language (ASL) and music so I chose “Deaf Studies” (with Interpreting as an elective emphasis) as my Major, and “Music” as my minor.
First few years at college were fine, with the help of UVU Accessibility Services, I was able to receive the academic accommodations I needed and succeed as a college student. As I started to get into my upper-level classes the slowness in cognitive processing became more evident and Professors sometimes noticed this during class. I did my best to remedy it and be open in communicating with my professors about it. It was this, being open with my professors that enabled me to see what it was that I needed. I didn’t realize what I needed until I really got involved with Deaf Studies.
There were several severely influential professors I have had the privilege of interacting with, but one in particular who changed my life, and my perception of epilepsy was Professor William Garrow. No matter what class I had from him, in the Deaf Studies department, a few frequent topics of discussion were “oppression,” “stigma,” and “disability” – and how they were all related. The main point of his lectures (I found) was to allow us to think critically about why the world, as a majority population in society perceives people with disabilities the way they [the majority] do and how we [as prospective advocates] can influence and change that oppressive perspective for good.
Another main point of his was to talk about the issues – talk about the perception of “disability.”
Talk about how the legality of the label, “disability” can both help and hinder a person. Talk about how the media portrays this so-called “disability.” Talk about how the typical mainstream (public) education system don’t encourage real growth or challenges and just maintains disabled students. Talk about how all of this talk of the “disability” as a label is actually quite oppressive and stigmatizing in many realms – particularly socially. So, I applied these discussions and lectures to what I knew of epilepsy and seizures – and to me.
It was just a year or so before meeting Professor Garrow that I found out about the Epilepsy Association of Utah (EAU). Between my collegiate studies and the information and support I have gained from the EAU, I was able to finally be ok with saying, “I have epilepsy – I have a seizure disorder.”
A few months later, I would write several papers for Professor Garrow in a Disability Theory class, and I came to a new conclusion. To reference a passage from my final paper in that class, I wrote, “Yes, it does seem easier to be ‘normal’ rather than ‘disabled,’ but such convenience does not, in fact, lead to an increased value of one’s life. Presumptions about the horrors of disabilities are usually made by those not living life in a disabled body .” This realization was the beginning of acting on what would be my new perspective and passion. This new outlook on life would enable me to begin celebrating that I was different from others that not being “normal,” was ok and I was ok with it.
Another part of what helped me open up about my epilepsy was volunteering as a helper to one of the campers who needed more attention at Camp Spike and Wave (now Camp Neuro Revolution). I was able to bond with youth who were going through a lot of the same things I had been through. All of the hindrances youth with epilepsy experience in academic and social realms– issues with driving, dating, self-confidence – as well as all the other issues where seizures impacted our lives. I was 21 years old then – I had the diagnosis for 15 years and I had been living with it my whole life. I was finally willing to wear a medical bracelet so I could stay safe if I were to have a seizure. I was finally comfortable with saying, “I take the bus because I choose not to endanger others if I were to have a seizure.” I was finally willing to talk about it.
Once I was open about it, “epilepsy,” as a scary and stigmatized word, no longer had power over me. Because I am comfortable talking about it, I can guide those around me on how they can be comfortable with me and know what to do if I have a seizure. Sure I might have a seizure – it could happen anytime. And sure the meds may suck, but I can still live my life and I can still have an amazing time. To quote Nelson Mandela, “There is no passion to be found in settling for a life that is less than the one you are capable of living. ” I have found that I cannot and will not settle for a life of limitations and lowered expectations, I have found my passion and I expect myself to live it! I wouldn’t have been able to get through college, have a job, and be a leader like I am today without that perspective. It is such an exciting thing to realize that I don’t have to let epilepsy get in the way of what I want to do in life.
I don’t see epilepsy as limiting, I see it as an opportunity to understand myself better and take better care of myself. It was that change of perspective within myself that changed everything about my epilepsy - the change of perspective changed me from the inside out. As many have said to me, in light of my recent graduation, this isn’t an ending – it’s a new beginning, a new adventure and I am going to embrace it. The same can be said of my change of perspective on life. I am still working on bettering myself everyday as a person. I am taking on the issues I still have with few minor seizures that pop-up, and the negative side effects of the medication I still deal with. I figure, I’ve made it this far, I can keep going with this new perspective on my life, and I will.