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 ❤️