Trigger Warnings: Depression, Feelings of Hopelessness
There's a common misconception that seizure disorders are strictly that: occasional seizures where the victim ends up on the floor, eyes rolled back and foaming at the mouth. This was, at least, the misconception I had before I myself became diagnosed with my own neurological issue. Up until my freshman year of college, I had lived a pretty healthy life. Sure, I had some stress-induced stomachaches that would flare up here and there, but nothing particularly bad. But that soon changed.
It came on suddenly. And I think that’s what was worse. I went to sleep perfectly fine one day and woke up the next morning feeling as though I had somehow shifted into an alternate universe unbeknownst to me. I felt dizzy, nauseated, stiff and confused. Oh, I thought to myself. One of those migraines. I reassured those around me it would just take some Excedrin to fix the problem. Deep down, I knew something felt off, but I figured it was just the migraine taunting me. I went to sleep with a pounding head and hoped for the best. Morning came, as did the symptoms. This migraine is persistent. Then again. And again. And again. And again. And again and again and again and again. By the end of the week I had grown exhausted of how I was feeling and, having gone to my mother’s home for the winter break, decided to mention it to her. Thinking I was just overstressed and burnt out from finals, she encouraged me to meditate and take time to relax.
If only it were that simple. I tried my hardest to ignore what I was feeling, but it quickly took over me until I could no longer hide it. You can’t make up eye bags and you can’t pretend to lose weight — it just happens, and everyone around you notices. I started experiencing instances I would later discover were depersonalization episodes: moments in which I suddenly felt disconnected from my body, and this looming, inescapable anxiety would take over because I felt I was an intruder in my own skin. It simply felt like I didn’t exist, like some veil separated me from the material world and no matter how hard I tried to grab onto the objects around me, I couldn’t help but slip away. I couldn’t eat or sleep, and I was in constant pain. The goddamn medical system in the U.S. made me feel hopeless, with my lab results taking too long only to give me zero answers. It wasn’t long until I became depressed, and my primary care doctor referred me to a psychiatrist and a neurologist. I called every doctor within my insurance to schedule an appointment, but the only dates anyone had available were in February. But that’s two months from now. I’ve already been like this for a month, I can’t live like this for another minute.
Despite all this, I was in a very privileged position of having enough money in my savings account to pay for a last-minute air ticket to Bolivia, my home country. Over there, I knew seeing every specialist that could possibly give me answers would at most take me a week, and would even be more affordable. It only took me a week until my neurologist found out I had a seizure disorder, as per my EEG scan. What brought it on was a mystery, and he kept asking me if I was absolutely sure that I didn’t bump my head or anything recently, but what was important was that we knew how to treat it, and soon I was on medication.
And then I lived happily ever after, right?
Well, not exactly. Before having this issue develop, I had never considered what it truly meant to live with a chronic illness or ailment. People talk about illness, but they rarely talk of the struggles medication brings. With “invisible” disabilities, it's something often misunderstood by outsiders, because they don’t directly notice the pain one goes through. And who can blame them? As humans, we react to what we have in front of us. But this diagnosis definitely changed that perception for me. For the first three months of taking my medication, I felt weak. I had always been an early riser, and annoyingly so — the type of person to wake up fully energized at 6 a.m. I found myself waking up in the afternoon, with barely any energy to get out of bed. My body felt so heavy, and I felt constant exhaustion. All the plans I had made the previous semester vanished for me, as I simply lacked the energy to do anything other than rest.
I continuously felt like I was losing myself, and losing the ability to do the things I enjoyed. The sensitivity to lights detained me from attending concerts that I had once obsessed over, and I no longer went out on long walks with my boyfriend. I felt the world become my room and me. My once perfect memory soon went to mush as I struggled to remember the second halves of my sentences. I felt embarrassed and entirely unequipped to handle such a sudden “disability.” And that word. Disability. It stung me to think about the stigma that surrounded that word and how many in my social circle possibly wouldn’t believe me. I became scared I would be seen as a pretender, craving attention.
After a couple of months on the medication, I regained my energy, and then the pandemic hit. I was again confined to my room, but this time, I couldn’t bear to be in it. The depressive cycle continued and I found myself in a constant downward spiral. Unfortunately, it's a spiral I'm still pulling myself out of. Even as I write this, I feel I have again come up short of the image I once had of myself, except I have grown to accept reality as it is.
Life knocks us down. It's on us to find the strength to get back up. It's definitely not an easy task, but I’ve come to realize that you can either let it tear you down or do something about it. By no means is this meant to minimize the hardships of disabilities and illnesses: there will be things that you can’t do, and there will be days where you feel like giving up. But it's important to try and maneuver around our limitations as best we can and adapt to the situation.
It's important that we learn to listen to our bodies and do our best to slow down for ourselves sometimes, rather than fight to keep up. There's no shame in needing more time, and a part of self-love is establishing what our body’s limits are. There will always be people that doubt you, or that doubt the seriousness of what you’re going through, but that doesn’t matter. In the end, you know what you go through, and you can be proud of yourself for pushing through it. Some days, even just getting out of bed and showering is a grand accomplishment…and that’s okay! People will throw their own medicinal ideas and beliefs at you, and most times it's simply because they want to help. In those conversations, I try to show gratitude for the advice, but also stand my ground on things I know do not help my body. Even so, I’ve learned to be open to suggestions. Practices such as yoga and meditation or even prayer might not cure us, but they are definitely soul-healing and help us find relaxation.
Although it has been a year since the incident, this diagnosis is still new to me. It holds the power to change the circumstances, but it can only take away from me what I let it. The downfalls are always hurtful, but I can feel myself climbing towards a better moment in my life, and it depends entirely on me. The year 2020 was full of misfortune, but only because I allowed the situation surrounding me to define who I was. In 2021, I am set on rebuilding myself and finding myself once more. Having obstacles in my daily life that weren’t there before doesn’t mean I can’t see the finish line. It's about persistence and pushing through what life throws at you.
So, dear reader, with this article, I hope to set the mood for what this year will be for me. May 2021 bring all of us who are struggling strength, and in that strength, may we reach peace. I’ve learned that peace doesn’t necessarily mean not having to deal with my seizure disorder, but rather it means learning to live with it and love my body’s current abilities. It's time to stop longing for the past and start embracing the present.