Luminous Lotus
New Here
Hello all, I'm Luminous Lotus. I tried to join this place once before while in the midst of panic and desperation, but I wound up rage quitting. (I actually quit, this is a new account. I hope it's okay for me to have made this thread.) Now I'm back, since the shock of the whole thing has calmed down.
To begin with, I have done tons upon tons of research on PTSD over the years and I fit the bill, but I have not been officially diagnosed. Simply put, I've been afraid to for fear of being told I'm wrong about having PTSD. This has a lot to do with my family and how they've always taught me that I'm wrong, or that I'm exaggerating my emotions when I should be thinking about everyone else who apparently has it worse than I do. I really didn't want their oh so encouraging words to be proven right.
Eh, but on to the real story. Honestly I find it perplexing whenever I try to specify exactly what my trauma is caused by. Perhaps it's a combination of everything I've had to endure over the span of my lifetime, with the surgery being nothing more than the turning point that sealed the deal.
I can't say I really feel like going into any incredible detail at the moment, so I'll try to be relatively blunt. I've been bullied through the whole of my school life, excluding only college. Through those years I didn't have any support from my family or friends, and every attempt I made to stop the bullying failed, and sometimes made matters worse. On top of that, I'd developed Epilepsy, and something in me knew that it was killing me. It put a certain fear in me that slowly and quietly built over the years. Naturally, I was miserable. By the time I hit my early teen years, I was genuinely thinking about suicide. For a while I stopped myself using the hope that maybe I could get my friends to help me. Eventually I gave up on that too, and the only thing that stopped me from taking my own life was the knowledge that I didn't have long to live anyway. At the time I had but one wish - to be able to draw until my final day. With that wish came a single fear - the fear that I would lose my ability to draw, particularly that I would go blind.
I was fourteen when I wound up realizing that I'd already lost half of my sight, and I knew the seizures had caused it somehow. My greatest fear had come to life. The only thing my mind could comprehend at that moment was that I had to have surgery, which had always been another fear of mine.
I was in the hospital only a month later, after my neurologist confirmed that I had a brain tumor. The surgery itself was on February 13th, 2009. I vaguely recall the surgeon telling me that I'd gotten to him in the nick of time. Not like I didn't already know that, though.
The surgery took away most of my memories, and my loss of sight was finalized. To say the least, the reign of terror didn't end at the surgery itself. The first year was spent in shock while I healed physically and mentally both. (I was acting like a young child after the surgery, and began to rapidly "age".) Somewhere during that time, I developed PTSD.
Since then, I've been consumed the realization and terrible fear that I could die at any given second. I had ghost pains from the surgery itself for months after I was let out of the hospital, always feeling as though IV fluids were still being pumped through my arms through an IV tube. I know through the memories that I have managed to regain that I never used to be afraid of hospitals, but now I can't even step foot into a doctor's office without going into fight or flight. Even images of the brain or thinking too much about a hospital can lead to my hands getting shaky and my heart rate going up. The anniversaries, particularly starting a month and sometimes two months before are always really hard on me.
That's not the end of it, though. With my lack of memory, I didn't realize that I'd also been suppressing my emotions like I had. I'd gained enough memory back to make it into some of the help classes at college, so of course I had my schoolwork to stress me out on top of everything that was going through my head regarding the memory loss and the memory I was regaining. With no real understanding of my own emotions, all of that stress and frustration wasn't going anywhere. It was just building and building. I found out the hard way what that can do to a person.
Last October, I wound up having a seizure. Two seizures, actually. The second seizure was the first seizure to ever make me black out, and when I came to my tongue was bleeding where I'd bit it so hard. Thankfully I didn't bite it off, though I have heard of that happening. Naturally, I was just as terrified then as I was when I realized that I could have died the day I had surgery. To make the situation that much worse, I was on school grounds, and they sent me to the hospital. Oh joy.
Naturally, that messed me up. I started really thinking about suicide again as I thought over and over again, "They're back. I don't want to die slowly. Not again. I'd rather take myself then let the seizures take me again." The only thing that stopped me was this little feeling in the back of my mind that told me that those seizures weren't the kind of seizures I knew, that I needed to find out more about different kinds of seizures. Somehow I managed to find an article that explained non-Epileptic Seizures, or NES, and I couldn't help but feel like that was what was really going on. Of course, I was wondering if it was a groundless hope based only in my fear or if it was really my intuition speaking, so I tested it. The next time I felt another one of those seizures coming on, and I knew for certain I was going to have one, I reminded myself that these seizures couldn't kill me. It didn't make me any less terrified, and I found myself accepting that I was terrified, and next thing I knew I was fine again. I've not had another one since.
Still, I'm pretty sure that last seizure made my trauma worse. I had it in the school library, and the last time I tried to go to the school I felt like I was going to have another one of those seizures due to the utter fear I was trying to hold back.
The last time I joined this place, it was before I realized that NES was a thing. Even now, I've not fully mastered the art of feeling my emotions, but now that I know what they feel like I'm managing to let them out a lot more. Oh, I also forgot to mention that I did manage to find supporters after the surgery, when I started opening up to people online. I've been fighting my trauma ever since I realized that I couldn't live my life being torn between wanting to die and wanting to live for fear of death, and it's only those people online who've managed to help me do that. I am now in therapy, since that recent seizures finally convinced my parents that things truly aren't fine and dandy like they've been telling themselves, and I'm kind of hoping that I can soon get an actual diagnosis for PTSD. I've also had to deal with my amnesia on my own, which meant learning how to read and do math again (I used to really good and really quick at math, now it takes me a while just to add), who I was and who my friends were, and piecing together the many scattered puzzle pieces of my past. That, too, I had to do on my own because of my parents' denial. I've noticed that I still have some trouble feeling a genuine bond to people now, too. I don't think that used to be the case considering some of the memories I regained.
Well, I think I'm finally done rambling. Honestly I don't know what to expect from this forum. Maybe I'm just hoping to finally met other people who've experienced a trauma from surgery.
To begin with, I have done tons upon tons of research on PTSD over the years and I fit the bill, but I have not been officially diagnosed. Simply put, I've been afraid to for fear of being told I'm wrong about having PTSD. This has a lot to do with my family and how they've always taught me that I'm wrong, or that I'm exaggerating my emotions when I should be thinking about everyone else who apparently has it worse than I do. I really didn't want their oh so encouraging words to be proven right.
Eh, but on to the real story. Honestly I find it perplexing whenever I try to specify exactly what my trauma is caused by. Perhaps it's a combination of everything I've had to endure over the span of my lifetime, with the surgery being nothing more than the turning point that sealed the deal.
I can't say I really feel like going into any incredible detail at the moment, so I'll try to be relatively blunt. I've been bullied through the whole of my school life, excluding only college. Through those years I didn't have any support from my family or friends, and every attempt I made to stop the bullying failed, and sometimes made matters worse. On top of that, I'd developed Epilepsy, and something in me knew that it was killing me. It put a certain fear in me that slowly and quietly built over the years. Naturally, I was miserable. By the time I hit my early teen years, I was genuinely thinking about suicide. For a while I stopped myself using the hope that maybe I could get my friends to help me. Eventually I gave up on that too, and the only thing that stopped me from taking my own life was the knowledge that I didn't have long to live anyway. At the time I had but one wish - to be able to draw until my final day. With that wish came a single fear - the fear that I would lose my ability to draw, particularly that I would go blind.
I was fourteen when I wound up realizing that I'd already lost half of my sight, and I knew the seizures had caused it somehow. My greatest fear had come to life. The only thing my mind could comprehend at that moment was that I had to have surgery, which had always been another fear of mine.
I was in the hospital only a month later, after my neurologist confirmed that I had a brain tumor. The surgery itself was on February 13th, 2009. I vaguely recall the surgeon telling me that I'd gotten to him in the nick of time. Not like I didn't already know that, though.
The surgery took away most of my memories, and my loss of sight was finalized. To say the least, the reign of terror didn't end at the surgery itself. The first year was spent in shock while I healed physically and mentally both. (I was acting like a young child after the surgery, and began to rapidly "age".) Somewhere during that time, I developed PTSD.
Since then, I've been consumed the realization and terrible fear that I could die at any given second. I had ghost pains from the surgery itself for months after I was let out of the hospital, always feeling as though IV fluids were still being pumped through my arms through an IV tube. I know through the memories that I have managed to regain that I never used to be afraid of hospitals, but now I can't even step foot into a doctor's office without going into fight or flight. Even images of the brain or thinking too much about a hospital can lead to my hands getting shaky and my heart rate going up. The anniversaries, particularly starting a month and sometimes two months before are always really hard on me.
That's not the end of it, though. With my lack of memory, I didn't realize that I'd also been suppressing my emotions like I had. I'd gained enough memory back to make it into some of the help classes at college, so of course I had my schoolwork to stress me out on top of everything that was going through my head regarding the memory loss and the memory I was regaining. With no real understanding of my own emotions, all of that stress and frustration wasn't going anywhere. It was just building and building. I found out the hard way what that can do to a person.
Last October, I wound up having a seizure. Two seizures, actually. The second seizure was the first seizure to ever make me black out, and when I came to my tongue was bleeding where I'd bit it so hard. Thankfully I didn't bite it off, though I have heard of that happening. Naturally, I was just as terrified then as I was when I realized that I could have died the day I had surgery. To make the situation that much worse, I was on school grounds, and they sent me to the hospital. Oh joy.
Naturally, that messed me up. I started really thinking about suicide again as I thought over and over again, "They're back. I don't want to die slowly. Not again. I'd rather take myself then let the seizures take me again." The only thing that stopped me was this little feeling in the back of my mind that told me that those seizures weren't the kind of seizures I knew, that I needed to find out more about different kinds of seizures. Somehow I managed to find an article that explained non-Epileptic Seizures, or NES, and I couldn't help but feel like that was what was really going on. Of course, I was wondering if it was a groundless hope based only in my fear or if it was really my intuition speaking, so I tested it. The next time I felt another one of those seizures coming on, and I knew for certain I was going to have one, I reminded myself that these seizures couldn't kill me. It didn't make me any less terrified, and I found myself accepting that I was terrified, and next thing I knew I was fine again. I've not had another one since.
Still, I'm pretty sure that last seizure made my trauma worse. I had it in the school library, and the last time I tried to go to the school I felt like I was going to have another one of those seizures due to the utter fear I was trying to hold back.
The last time I joined this place, it was before I realized that NES was a thing. Even now, I've not fully mastered the art of feeling my emotions, but now that I know what they feel like I'm managing to let them out a lot more. Oh, I also forgot to mention that I did manage to find supporters after the surgery, when I started opening up to people online. I've been fighting my trauma ever since I realized that I couldn't live my life being torn between wanting to die and wanting to live for fear of death, and it's only those people online who've managed to help me do that. I am now in therapy, since that recent seizures finally convinced my parents that things truly aren't fine and dandy like they've been telling themselves, and I'm kind of hoping that I can soon get an actual diagnosis for PTSD. I've also had to deal with my amnesia on my own, which meant learning how to read and do math again (I used to really good and really quick at math, now it takes me a while just to add), who I was and who my friends were, and piecing together the many scattered puzzle pieces of my past. That, too, I had to do on my own because of my parents' denial. I've noticed that I still have some trouble feeling a genuine bond to people now, too. I don't think that used to be the case considering some of the memories I regained.
Well, I think I'm finally done rambling. Honestly I don't know what to expect from this forum. Maybe I'm just hoping to finally met other people who've experienced a trauma from surgery.
