Triumph

Now that it's November, it's Epilepsy Awareness Month! Although I'm not a "raw raw" activist kind of person, I am someone who has personally experienced and dealt with this situation in my own life. Instead of simply sharing a link and asking you to care about this very common life-threatening disease, I would like to share my own personal experiences.

To start, I'm Kate. I've been in love with interior design since I was 10 years old, and really, my whole life when I think about it - much like my epilepsy. My seizures are caused by a left occipital lobe lesion due to the lack of oxygen to my brain at birth. A nurse screwed up, but no hard feelings. I was in ICU for a week and in for a life full of regular doctor appointments. Upon further investigation, the lesion did become smaller. However, I ended up having a breakthrough when I was 2 years old. At both these points in time, I was on meds for a short while, but not perinatally yet. At this point, I was very much into Barbie, Power Rangers, and LEGOs - normal toddler stuff. Though my parents were told I may not walk or talk, I did and do! In fact, I learned to tie my shoes by about 4 years old, and my first word was "Hockey" - very Minnesotan of me.

Fast forward about five years, while some of my childhood interests grew and changed, my love for making spaces pretty was just getting started. From LEGO to the iconic 90s Barbie Dream House, and even being very particular about my room and not allowing people inside. However, as we all grow, some things don't get better. Always the quiet, nerdy kid with asthma, yeah, I have that too. I was an easy target for bullies, on top of being a natural ginger. Art and video games quickly became my outlet as a result. The worst seizure I've ever had occurred when I was about seven years old, while I was watching my little brother play Sonic on the SEGA Genesis. Suddenly, I blacked out, completely gone. I regained consciousness in the ER, looking at my parents, before passing out again. Apparently, it was a grand mal seizure with vomit and everything. Then, I spent another week in the hospital for tests and observation. I remember my grandmother's friend giving me a teddy bear. I think I still have it!

But then, everything changed. I have no idea how long it took for my mom to get me to take meds - hours, I'm sure. Even my brother, who's two years younger and now scared for life, was helping. Eventually, I did, and I wasn't going to just not be involved with what I was taking. So, I demanded I open the childproof bottle myself and understand what I'm taking. I'm very lucky my parents did, and obviously, were successful parents of a 7-year-old already. So, I became very self-reliant and independent at a young age, even though to this day my parents and even friends will ask, "Kate, did you take your meds?" Yes! Yes, it's been 25 years, I got this.

Once this life-changing adjustment settled, I had fun friends, some of whom I’m still friends with. I excelled in school, despite experiencing cognitive developmental delays caused by the seizures. Additionally, I began to question what it is that I love to do with my life, which turned out to be interior design.
Although it wasn't recommended, I played a lot of video games. However, this hobby made me highly aware of the virtual spaces within the games. Consequently, I became quite adept at identifying secrets and solving problems, skills that have proven useful in real life as well.

The funny thing, though, is that all of this made both my brother and me grow up a little faster than the kids around us. Not too many 10-year-olds can get away with calling a teacher by their first name, but I did. We were also the kind of kids who liked meeting neighbors, him more than me. And a few of our neighbors also had a SEGA Genesis. We would share games and eventually started to play PC games. One of our neighbors even gifted us The Sims. While I also loved things like Carmen Sandiego and watching my brother play Diablo II, The Sims completely changed everything for me!

When cheat codes were still a thing, everyone used them without being a complete ass. I loved using the money cheat code in The Sims; it was my favorite. Not just for the sake of money, though. I mean, what else did people even use it for, other than building houses? It was such a fun activity, designing homes, even though it was primitive compared to CADs. My mom noticed that all I did was make houses, so she started watching HGTV in front of me. At the time, it was still a new and mostly made in Minnesota thing, and I loved it! As I was on the cusp of adolescence, I happened to find my thing, my one true love, all because of a video game, despite having epilepsy.

While I don't expect anyone to look at adolescents fondly, mine was particularly rough. I was a natural redhead, nerdy, quiet, a bit of a loner, and most of my friends have always been older than me. On top of these things that I was aware of at the time, I was completely unaware that I had matured quite quickly and was a pretty young lady. Obviously, the latter made the former seem nonexistent. But, I had a goal and a passion. I have loved art in general my whole life. I even had a great elementary school teacher who taught history and skills! So, my passion for art and music kept me distracted from the overwhelming harassment that defiantly pushed me to the edge.

Music is another thing. I was about 8 or 9 when I first heard "She's Lost Control" by Joy Division. I knew exactly what it was about because that was my life too - epilepsy. Need less to say, I've been a goth for my whole life, which, at the time, was just another strike against me in a hostile youth environment. I wish I was exaggerating, but sadly, I'm not.
I had gotten to the point where I was having around 5 tonic clonic/aura seizures a day and telling NO ONE. Why? Because they can kill people. Eventually, my brother noticed, but he too was going through his own tribulations as well. We're both natural redheads, nerds, and rather eccentric in our ways. And it's reasonable to say he didn't do the right thing, not telling anyone, but really the level of mutual trust that created will last our lifetimes. All of this eventually got so bad that my mom started talking about an alternative high school. Passively even before I was that age.

Then there was high school. I attended a charter arts school, which was known for being very liberal. Although I consider myself a classical liberal, this experience was the absolute best thing for me. It was the mid-00s, and even though my seizures didn't improve much, I distinctly remember having one during the open house before I enrolled. It's like an acid trip, and I can barely recall the details, but I do remember being able to walk and vaguely respond to people. Seriously, it was quite an experience.
Despite this, I eventually managed to gain control over my asthma and allergies, which made a huge difference in my day-to-day life. Overall, high school was a pleasant time for me, and I'm still friends with most of the people I met back then. The only real challenge was that no one really understood that I had a clear idea of what I wanted to do with my life, but I didn't know how to achieve it. No adult had solid answers for me, which led to the most significant development in my post-high school life: a romantic relationship that lasted over a decade. It started slowly and ended slowly, and I can't express how grateful I am for it. Words fail to capture my gratitude.
Given my health issues, interests, and generally detached disposition, it was simply nice to have someone who cared. He's still a great friend to this day. It would be easy to say that I was oblivious to how liked I was in high school because my epilepsy made my brain foggy. But in reality, I was just the pretty girl with a specific life goal in mind, who had very little idea of how attractive others found me. Even when a close friend, who is still in my life, bluntly pointed it out when I was just 14 years old, it took me a long time to truly acknowledge how right she was.

After high school, it was a whole different thing. I tried some local college courses, arts of course, but that traditional environment just wasn't for me. I also tried a few different work environments, and they weren't for me either. At this point in time, I was also changing meds because my parents had finally realized my seizures were not at all controlled. Things were going pretty well, until they weren't, and I had a seizure in my sleep! So, appointments were made, and since I was 19 and still technically growing, the conclusion was that my cycle of natural hormones was impacting my seizures and requiring an additional prescription. I was young, in a relationship, and not at all interested in having children, so this was a reasonable addition, and it worked!

Around this time of seizure-freeness, I had sought out liberty-minded creative people like myself. This seemed to be a more practical thing to do than school, and it defiantly was! Having deep, meaningful, philosophical conversations endlessly with people much older than me was significantly more valuable than school, and the friendships with many of them, to this day, are priceless. However, working in generic retail definitely took its toll on me. I’m very introverted and horrible at faking small talk, and being discriminated against for having something as common as asthma, multiple times, was beyond ridiculous. Among other things, I had just hit an edge I hadn’t been on in a long, long time. There had to be a way out, a way to finally achieve my passion. I had a few options in mind other than interior design because school for that is very traditional and not for me. But thankfully, I found the right school, one much like my high school, but online! Perfect, I'm here all the time with friends anyway!

So, I enrolled and paid out of pocket for both school and starting an online interior design business within 6 months, despite any disabilities! While it's been a very, very slow grind with many ups and downs, knowledge seeking, and unique experiences, it's 100% mine, right here. It's small, barely noticed, and difficult to get in front of the right clientele, but I've persevered, mostly on my own with very few supportive friends (and they are great friends).

Most of all, I hope this sheds light on triumphs and spiritedness that just doesn't seem to be a thing when people "tell their story". I'd love to help people achieve that "Yeah, I did it" feeling like I have for myself, and the best way for me to do that is by making custom plans that help people make homes beautiful. Regardless of my health or well-being, I want to solve problems. I want people to love their spaces and express themselves. That's what I've been here my whole life to do, and I'd like to help you help yourself!

originally post Nov, ‘21