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I’m Nox and I have psychogenic non-epileptic seizures. Simply put, I seize when I’m stressed. The solution, one would think, is to find ways to not be stressed. But it’s never that simple.
May is Mental Health Awareness Month, and I felt the need to write down my story because I think that if there had been more mental health awareness when I was younger, I would be coping better now as an adult.
My seizures feel like a tangible representation of “mental health is physical health.” When I am mentally not doing well, I have a physical reaction: seizing. When I’m physically not feeling well, often due to my chronic pain, it affects how I’m doing mentally. And after my seizures, I’m often weak, in a pain flare, and it effects my mental health. I live in what feels like a neverending cycle of pain, anxiety, seize, repeat. And as someone with an entire alphabet soup of mental disorders (PTSD, ADHD, ASD, OCD, GAD, BPD, MDD, etc.) and unknown autoimmune, rheumatological, and nerve conditions, my seizures are exasperated and constant. I don’t remember the last time I went a week without a seizure.
My History of Health-Related Struggles
They started in 2021. I had a panic attack while trying to park my car (driving caused intense anxiety). I managed to put the car in park right before having an absence seizure. I had my next seizure two days later, on my 22nd birthday. I went to the hospital and had an episode in front of a nurse, who bluntly said “it’s not a seizure” and sent me home with a large bill and meds for a UTI. And for almost four years, I shrugged them off, even as the episodes became more frequent and, admittedly, more dangerous. I stopped driving once I left LA, my last time behind the wheel ending with a seizure while on a bridge.
I have always, always been an incredibly anxious person. I have always had emotions that were all-consuming, and I never knew what to do with them. I had countless teachers recommend therapy to me, and the one time they recommended it to a parent, they said “if my daughter has any problems, she can come to me about them.” But it felt like I couldn’t. So instead of getting help, the emotions ate away at me from the inside. Until they started exploding out uncontrollably.
I first attempted suicide at 18. I told my church group that I was worried I would attempt to take my life. And they didn’t react. Didn’t care. Only reached out to me because I promised I would help with Vacation Bible School that summer. My attempt was two days after VBS ended.
My attempt resulted in my father responding, “I’m not going to feel sorry for you for having a stupid thought”, plus a guilt trip because “that’s how much you love your family.” It was eventually decided that I could see a therapist for six weeks, one who provided me with my ADHD, anxiety, and depression diagnosis, and no coping skills whatsoever.
Mental Health Awareness Isn’t Enough
I don’t want people to think that suicide is an option, let alone the only one, to get some help. I don’t want people to have to wait until their anxiety bursts out of them in the form of seizures, disassociating, flashbacks, panic attacks, or screaming at their family members because they don’t know why but, oh god, they can’t stop it and their loved ones aren’t helping. I don’t want people to be told that they are “holding everyone hostage” for seizing in class, to be told that they’re “a liability” around children at work, or to be asked if they’re on drugs by police that were called after an episode.
I don’t want mental health awareness. I want action.
I want people to fight for Medicaid and universal healthcare. I use Medicaid. If I wasn’t on it, I would never have gotten any help for my seizures, not to mention other conditions I’m currently in treatment for. it provides me with transportation to appointments, access to mental health services like my therapist and my social worker, as well as my doctor appointments and meds. Medicaid may have saved my life after a seizure resulted in stroke-like symptoms. I want everyone to fight like hell for Medicaid services to be expanded, not cut. Call senators and representatives, flood their offices with mail, tell them how important Medicaid is.
I want people to get help sooner for themselves and their loved ones. As a Black and Latine woman, I’m part of two cultures that still have a stigma around mental health care, for valid reasons. But it’s why I love groups like Therapy for Black Girls, for providing desperately needed spaces for people to get help.
I want taking medication to be destigmatized. I’m on three different medications for anxiety alone, and will likely need to be on more at some point (medications I can take thanks to Medicaid). I was offered medication when I was younger, but familial stigma made me refuse it at first, and then secretly take it later on, which just added to my anxiety.
I need people to have a deeper understanding that it’s all connected, mental and physical health, even if your symptoms aren’t as unavoidable as mine. I need us to do the work to break through some of these cycles. I’m picking up Break the Cycle and The Pain We Carry for that purpose specifically.
Most of all, I need us to show up and love each other through these moments as much as we can. I don’t think the FBC community knows how much just being there has meant to me through all of this. Y’all have been with me through five moves, three states, and years of seizures. My three constants throughout this journey are my family, FBC, and the library. The flexibility and understanding the other contributors have had for me is one of the things that keeps me going. It can be so difficult to maintain relationships when it feels like everything is falling apart and that your body and brain are fighting you. My flares have led to late posts, missed events, and a lot of confusion or delays, but everyone has been kind and patient with me, and it means the world to me, more than I think they will ever know.
Most of all, take care of yourself. My grandma always said “nobody is gonna look after you like you.” Fight and advocate for yourself, take whatever rest you can when you need to, and do whatever you can to best help your mental health. It’s okay to see a therapist or take meds. It’s okay to take care of yourself.
Happy Mental Health Awareness Month. Please do more than be aware. Be actively fighting for better mental health services for everyone. Fight for yourselves, but also for people like me, who sometimes don’t have the energy to fight.
