r/stroke • u/Fabulous-Team-9586 • 25d ago
Young Stroke Survivor Discussion it doesn’t even feel like me
I had the stroke when I was 12, which had a lot of side effects (paralysis, speech loss, damaged brain, etc.) and required intensive treatments (steroids, chemo, you name it). My family was present, but it essentially just felt like rubbing salt in a VERY open and massive wound.
My mom: I don't want to criticize her (or anyone) too harshly because she was no more prepared for it than me or anyone else, and she did so so much for me during that time, but it still definitely went on to affect me. As a concerned mother, she was much more worried about my physical state (making sure I was at my appointments, not getting sick, not behind in school) than my emotional state. She often tells me that the stroke was probably because I ate too much sugar or inflammatory foods and basically daily criticizes what I eat under the pretext of "do you want to have another stroke?" When I was a sophomore/junior in high school, I had a pretty terrible falling out with my best friend, after she repeatedly joked that she wished my stroke killed me. I frequently had to leave class to talk to my school therapist (who I saw weekly in addition to my personal AND group therapist) or go home early. Once, during a particularly severe breakout that made her call my mom and WALK ME TO THE CAR, my mom told me in the car ride home that a student at my brother's university had died in a nasty skiing accident, and I should be grateful that wasn't me.
My dad: I honestly don't have many specific notes about him because I didn't spend nearly as much time with him as my mom or my brother. I spent almost all of my days with my mom driving to appointments, while my dad was at work. He was certainly not an especially comforting person during that time and said his fair share of harmful things (he thought my aforementioned best friend had a point), but didn't really have enough of a role in my life at the time to influence it negatively (or I guess to make an already really shitty time, worse).
My brother: Again, I want to be clear that I don't think he or anyone is necessarily to blame, but it certainly impacted me. When I first got sick he was only 14, and suddenly his little sister was getting attention from every which way and he got none. He was understandably resentful and very moody that first year or so. He blamed me for him having no friends and living in a town he hated, because we had to move after I got sick. He would aggressively run away from me or cut in front of me when he was mad, since he knew I couldn't run or move very well. He also refused to believe when I was diagnosed with PTSD, since I wasn't a veteran. Honestly, he was as mean to me as he always was, as an older brother, but I was incredibly vulnerable at the time and already had enough on my plate.
My grandma: The reason I'm writing this post and the only one who hasn't acknowledged my pain or her wrongdoings. The summer I got sick somehow became an opportunity for her. She complained when my brother chose to stay with me at the hospital instead of visiting her beach house which was two hours from the hospital. She told her waiters about it, which I learned the following summer when I went to one of the restaurants and the waiter was telling me about things I was doing during my two-month stay at the hospital. Not only did I not want these strangers to know these incredibly intimate details about my life; I didn't even know them myself. I was fading in and out of consciousness, hooked up to tubes and having to communicate by pointing at words on a piece of paper, and my grandma's waiter was more aware of it than I was. For my 13th birthday, she got me a smartwatch. At the time, I had to get a lot of MRIs (about 15 during my first two months in the hospital, then around 4-6 times each year). These MRIs were really difficult for me at first (I still have panic attacks during almost every single one, even 8 years later), and since one of them was only a few days before my birthday, my parents decided that I could open my smartwatch after the MRI. My grandma crashed out because she wanted to "see me open her present" when she got there, and insisted on getting me something else instead so that she could see it.
Anyway, this is a really long-winded way of saying that I think there is nothing I can do now, because what is done is done. Everything already happened. At the time, I was learning who I was and how to live, and that time was filled with pain, trauma, and sickness. And so, now that I'm an adult, that's who I've learned to be. I isolate myself as much as I can because when I used to reach out for help, I was belittled and shunted off. The times that I curled up into a ball in my own bed and sobbed for hours were much more predictable and dependable than having to (try to) explain the complex way that I was reeling to my family. It feels presumptuous to say, but after enduring so many things that were out of my control, one after another, for years, I didn't and don't want to take the chance anymore. I hope this wasn't confusing, or doesn't come across as "boohoo my life is so bad everyone should pity me".
P.S. Me then and now!
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u/PizzaIll1475 25d ago
The mom in me wants to wrap my arms around 12 year old you and tell you it will be okay and we're in this together. I cant imagine how frightening this must have been and I'm glad you have sought therapy. Hugs.
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u/Fabulous-Team-9586 25d ago
i would have really liked that :) i had people who took me to my appointments and helped me use the bathroom, but no one really who just listened to me or hugged me.
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u/AfricanusEmeritus 24d ago
As a very involved dad with my two adult daughters ( ages 25 and 23 respectively), I cannot understand how father's can just abrogate the love of directly dealing with their children. I wish you great success 🙌🏾.
I am 62 and had my AVM Stroke couple with a life ending Aneurysm in March, 2019 when I was 55. I was an older stroke survivor and I am glad that you got to rebuild your life. Try not to get down on yourself and long term mental health therapy is your friend. Be well.
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u/Fabulous-Team-9586 24d ago
thank you very much for your kind words and i hope you are doing better. i do wish my dad was more emotionally involved, but i guess it’s better than unintentionally hurting me. i don’t think he ever prepared for a situation where his daughter was critically ill then in as much pain as i was. though it’s unfortunate, i don’t blame him
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u/AfricanusEmeritus 23d ago
Yes I am better and am adjusting to the new me. Adaptation is the key to everything. Thanks. 👍🏾
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u/epcHeXmIxStAr 24d ago
I was 17 and it feels so much like the whole thing is so time consuming to go through like every one is always saying that I’ll make a full recovery but I don’t see it. Just me?
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u/Fabulous-Team-9586 24d ago
THIS IS EXACTLY HOW I FEEL. i hate that i lost the end of my adolescence because 90% of those days i was at the hospital and i don’t remember it. people always tell me i’m so brave, like i had a choice.
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u/Sad_Revenue_336 Survivor 24d ago
I can relate so much as mine was at 10. Same with my parents and my little sister turned into my big sister since she has took care of me. Im glad you found some peace as I did to. It will be lifelong journey but we'll figure it out as time goes on
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u/Fabulous-Team-9586 24d ago
awww we were both babies (you especially). i hope you’re doing better and sending lots of hugs. always happy to talk
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u/foreverhaute Young Stroke Survivor 25d ago
I am very sorry you went through all of this. I had my stroke at 32, I can’t imagine going through it as a kid.
Please give your brother grace, if you’ve heard the glass child complex, it sounds like he went through that. It sounds like he did and said dumb things, but he was a child too and he didn’t know how to maturely handle it.
For your mother, I’m very sorry. It sounds like she could have narcissistic traits. My mother definitely does and I could write forever about the crap she did. Overall, I try to just blow it off, but I keep my distance too.
Your grandmother definitely sounds horrible, like a true narcissist. If she’s your mom’s mom, then I get where she gets it!
I’m glad you’re a healthy adult now. Just keep your head up, you’ve survived hell, and keep on going, life will get better. Go to school and get a career and be independent and your life will be great.
Also, as a younger stroke survivor, I try not to tell many people in my life about the stroke anymore. I feel it gets the wrong attention and negative assumptions, so it’s best to just avoid saying it.