I’m doing my best to keep smiling. I had to relearn everything after my major stroke, using utensils, learning to hold a cup, using the restroom while having a nurse teach me how to wipe my ass and vagina… basically everything you learn as a toddler. That destroyed me. It was embarrassing to mBut I relearned things, yes I do things differently because I relearned it that way but I felt like a Mother Fucking Warrior! Then a major decline came. Since mid 2019 I’ve declined so much and was told I am a completely different person. This brought back the memories from the major stroke, but this decline can’t be corrected. This isn’t my fault, it’s the cause of the Radiation on my brain. In 2019 I was diagnosed with many things I’ve never heard of but the one that’s the hardest is the one I have heard of. Cognitive Decline aka Alzheimer’s (Radiation Induced.) I was prescribed Donepezil *medication for Alzheimer’s* yesterday. This is REALLY HARD to accept knowing what is happening and is going to happen. Looking in the mirror and seeing my face covered in hives from the Scleroderma (Systematic Sclerosis) when I just got used to my permanent hair loss and deformed skull. Well semi used to it. I don’t think anyone can really accept that fully. Sitting in appointments having my mom speak for me because I can’t form sentences *sometimes* which has gotten worse. Having Focal Seizures and Dystonial Convulsions *Tremors which makes my body contort. This usually affects my right arm for some reason putting it in a claw like position* which has to be explained to “New” people that come around me. “Don’t panic! This is normal. She’s okay.” No I’m not okay. And I know it’s okay to admit this. In my situation I don’t think anyone would be “okay”. I do my best to hold on to the person I was. There’s still some of the same girl here. Fangoria showed me this by honoring me. This was not given to me because of my condition but strictly because of my love and support for The Horror Community. That made me feel so good! It made me feel like ME again. I actually cry tears of joy daily and the Issue is just being released (Vol. 2 Issue 7 ❤️) and I have Phil Nobile Jr. and Fangoria to THANK for this. Thank You for Noticing me and the effort I put in. Supporting what I love. Horror Films.

The girl that is very social, enjoyed conversations and meeting new people. The girl that could laugh at herself and make others laugh. I’m still here. I got a glimpse of that girl on Friday when our friend visited. Hearing the words from my boyfriend “I saw the old you come out” was bitter sweet. It made me happy knowing that person is still here but it scared me knowing it rarely shows. Not by choice. The Radiation Damage…
Sitting in my appointments having all my Neurologists explain to my family why I’m not the same due the multiple brain surgeries, strokes, and Radiation Damage and hearing my family say “Yes she’s not the same”, like I’m not even sitting there listening to the entire conversation… It’s really HARD to hear over and over. Not being able to go anywhere, other than the hospital for 2 years due to Optical Atrophy, also caused from Radiation… Having fears that I’ve never had before, like catching a cold because I know I’ll end up in the hospital. Going to bed every night in fear of having a stroke because of the “lack of flow to my vital organs”, caused from Cauterization during the second surgery. I have TIAs so this fear is real and every night I go to bed not knowing if I’ll wake. Every night I call my parents and tell them I love them, they know why. We’ve been doing this for almost a year. Repeating the same to my boyfriend and cat as they can’t sleep in the same room as me because of my convulsions and seizures also caused from Radiation Damage and PTSD. I’m scared. I admit this. I don’t want to change anymore and I know I can’t prevent this from happening. There is still some of the same girl in me. I feel her when I watch Horror Movies and engage on social media with the Horror Community. I feel her when I listen to Music with my boyfriend and I can remember all the lyrics and seeing him smile because I’m happy. That girl with kindness and extreme empathy and compassion is still here. I guess I’m writing this to let everyone know sometimes I’m not okay and that’s okay. I do have a daily “release cry” and that’s okay.
What’s keeping this girl who loves herself, loves her family, loves others, loves Horror Films, treats everyone equally, and Loves to Live, and Laugh is my FAMILY and YOU ALL (The Horror Community). My Family and You ALL are allowing me to hold on to who I am. It’s proven that when a person loses cognitive function it’s best to help keep the memories alive and it’s helping so much by interacting with the Horror Community. I consider you all my friends and when I say “Horror Family” I really mean it. You all are supportive as I open up my life and share my journey. It’s helping my quality of life better than any infusion or immunotherapy. My Neuro said “It’s important that I understand what’s happening to me”. I do. I understand that I can’t regenerate my dying brain. I understand I can’t prevent the outcome or prevent the continued decline BUT what I can control is my ability to HOLD ON to who I am. Thank You ALL for being so supportive and whether you know it or not you are helping me so much. I can’t exclude my family from this Thank You. They see it. Especially my boyfriend who helps me more than words can describe. They experience it with me. They cry daily but they also see the Horror Community is helping me. This is my Formal Thank You to You All ❤️

I get messages often saying: “I wish I could help more”. I wanted you to know you are. More than you know. Thank You ❤️

Smile By: Alexandr Kumpan. Website: https://www.deviantart.com/kumpan

6 thoughts on “Smile

  1. You don’t know me and I’m not a member of the horror community (though my son publishes weird fiction here in the UK) but I was very moved by your blog and just thought I’d tell you I love you and hope that you can continue coping with all the shit in your life.

    Liked by 1 person

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