Let me take you back in time— it’s 2013 and I’m officially 21, aka the legal drinking age. I had a night filled with booze, great conversation, even greater music, and an amazing group of people to share the vibes with. I made my way home sober enough to assess my surroundings and walk up that hill I despised my entire time living in the Bronx. I got home, showered, and went straight to sleep, per usual.
Now it’s the next day and I’ve made plans to hangout with my friends, again. I was surprised by how late in the afternoon I woke up— I’m an early bird so this is very unusual. My friend, Joe, came to get me and saw that I wasn’t even close to being ready. As I got up to go shower, everything went black. Once the darkness faded, I heard EMTs calling my name, uncontrollable tears rolling down my moms face, and an extremely terrified Joe. I mean its as if he saw a ghost. I had no idea of what was happening so I immediately became defensive to the unknown faces. I fought to get the IV’s off of me and make my escape out of the ambulance truck. Everyone tried to calm me down, my mom begged me to stop fighting, and it wasn’t working. It wasn’t until they said “Kristal, you had a seizure” for me to calm down.
Some of the feelings I had are still a little fuzzy. I do remember the confusion growing rapidly. There were so many unfamiliar people and emotions. I swear I’ve only seen my mom cry a couple times in my life. Now they’re telling me I had a seizure… what? why? how? Nobody knew.
As I was en route to Bronx Lebenon, I also realized I had a nasty cut right it between my eyes. The EMTs cleaned it and covered it with bandages until we got to the hospital. I got six stitches and a series of questions. Have you had seizures before? Is your vision blurred? Is there a history of Epilepsy? Epi-what? Neither me nor my mom knew what that was. The doctors explain it was a seizure disorder and wanted me to come back for testing.
I went home, still very confused. Did I drink too much? I searched “what causes a seizure” and got into the deep dark rabbit hole of Google and still had no answers. Meanwhile, my mom was on eye watch, kinda like I was a high risk criminal or something. Lol, it’s something I can laugh at now. When I went back to Bronx Lebenon, they performed an MRI and EEG, they did a CT scan on my initial visit. That’s when I was officially diagnosed with Epilepsy…damn.
Epilepsy is a neurological disorder where surges of electric activity affect the brain causing reoccurring and unprovoked seizures. It’s also one of the most common neurological/brain disorder where 1 in 26 people are diagnosed with this chronic condition. There are several types of Epilepsy that affects people differently. Some have a sensitivity, for a lack of a better words, to lights. Where some are triggered by hormones, alcohol, or brain trauma. I was diagnosed with generalized Epilepsy and tonic clonic seizure.
What does that mean? I got you…Generalized Epilepsy (formally know as Gran Mal) explains what part of the brain is affected. In this case, it affects both hemispheres. Tonic Clonic seizures explain the symptoms and how it shows up. It causes a complete loss of consciousness, convulsions or muscle spasms lasting at least 2 minutes. It can also look like a sudden cry, fall, shallow breathing, and a possible loss of bladder or bowel control. Once the seizure stops, full consciousness comes back and there’s usually confusion and extreme fatigue that follows.
Being diagnosed with Epilepsy has been one of the most difficult things I’ve gone through in life. I spent years avoiding and denying my diagnosis. It took me six years to actually come to terms with it. I’ve lost hope of a normal life without seizures due to multiple episodes, not being able to find the right medication, lifestyle changes not working, lack of care and support from medical providers, and how its affected my mental health. Fast-forward to today, I’ve been able to somewhat maintain my seizures. It’s more controlled than its ever been and I’m no longer ashamed of my experience. In fact, I’ve become incredibly grateful, I have a life that I enjoy and can live, like really live, with is condition. Sometimes I wish it didn’t take so long for me to accept it, but everything happens when it’s time.
This journey has become so meaningful and personal to me that I vowed to give back and help anyone going through this. I created a space called Epilepsy In Blk to provide resources and support for anyone who needs it, especially the black and brown community. It’s no secret that black people with Epilepsy, or any condition, are subject to more medical biases and obstacles than other races. As a result, many black people are misdiagnosed, dismissed, and misinformed. This is why community is so important! Sharing stories, resources, motivation, and spreading awareness can make such a huge impact in our journey.
My mission is to create a community, share stories, and inspire one another. There’s currently no cure for Epilepsy, just ways to maintain it. This is why the need to create this space is crucial. This disorder can way heavily on our physical, mental, and emotional health, knowing we’re not alone and getting the word about Epilepsy can make a huge impact.
I hope that, for those of you reading this, will open your mind to learn something new about Epilepsy. Remember, this affects 1 in 26 people, so it’s likely that you know someone with Epilepsy. If not, now you know me.
Thank you for reading…
Join me @epilepsyinblk for more. 💜