In July of 2024, I “elected” to have a resection for a Grade 3/4 AVM in my right temporal lobe. Since then, I’ve been navigating a life that feels increasingly bleak.
The first 3 months were a rollercoaster of extreme highs and lows that, thankfully, settled into a period of about 3 months of what I can only describe as a blissful altered state. But when that period ended and the expectation to “return to normal” set in—when I had to go back to work—everything turned dark.
The relationships I had before the surgery have all but collapsed (family & friends alike). People had expectations of the “old me” that I could no longer meet, which bred resentment on both sides. Now, I feel trapped by the pity of others— forever defined by what happened to me.
Professionally, it’s a struggle. I have a Master’s in Business Analytics (2023), but since my surgery (2024), I’ve been substitute teaching and now work as a para-professional. The financial reality is a cruel joke: I make just enough to be forced to pay for health insurance, but not enough to live. I’m seriously considering quitting to go back on Medicaid, despite the political threat to its existence.
So, I have to ask: What are people doing for work? How are you building a life that accommodates this new reality?
The deepest cut has been the psychic & philosophical abandonment. I went through a procedure that fundamentally alters the self, and when I tried to talk about the terror of that— “who am i?” What if I’m not me anymore?”—I was met with a void. My own sister told me to “get a therapist,” which felt like being told to handle the existential fallout of a cosmic event on my own. Ultimately, I no longer wish to connect with the “neurotypical” world that lacks the energy or capacity to meet me on this level.
I’m hoping someone may understand what it’s like to feel that the original “you”died on that operating table, and to now be the ghost or caretaker of what remains…
Hi. I can’t reflect on my own experience about this because I’ve avoided the challenge that you have but I’m crazy and I’ve been reading the stories of others here for at least 9 years.
You are not in the slightest bit alone.
There are many stories on here of people being rejected by their friends, colleagues, family because they don’t “get it”. And I tend to feel this is especially an issue in the US where so much of what one appears to others to be is defined by what you do, by how much you earn, what house you have, the car you drive, where the kids go to school, etc. However, all of these things are false as a way to value people and it’s a hard way to find out that that’s what those around you judge people by. It does seem to reflect the “American Dream”.
It is even more difficult if your personality has changed due to where your operation or your bleed or your AVM has impacted. It’s the hardest. So first thing (I think) is don’t put yourself down that you’re finding this tough because I think it’s as tough as it gets.
I hope some of the people here who are going through similar or have gone through similar reply, too. One of the key things about this space is WE DO GET IT. It’s one place where that happens.
Happy to write more thoughts but don’t want to push upon you.
I ‘tried’ to push on through and get back into life, only I couldn’t. The more I pushed, the more my body pushed back. I took what I call ‘the caveman mentality’ ie “I man, I strong” I can beat this myself. I couldn’t see what I was doing to myself, it was my wife who saw it and she simply told me “STOP”. I was burning myself out trying to attain a sense of ‘Normal’. One of my better moves was to get a therapist, only wish I’d done so earlier.
She helped me come to some sort of acceptance that my ‘normal’ life had changed, flogging myself for a normal that wasn’t possible was self-defeating and self-destructive. Now, please, don’t get me wrong here, for me it wasn’t like an instant flick of the switch type acceptance, but rather a realization over time that I was doing myself more harm than good by pushing myself. I didn’t want to accept ‘THIS’, but the reality is, I have no choice. I couldn’t see it at the time. The therapist helped me to acknowledge the reality of it all.
Hello Baas. I am sorry you are going through this and I understand completely as your description of “you” dying describes my experience spot on. I too feel like I went from being “neurotypical” to “neurodivergent” from the combination of bleed, three embolizations and radiation. While I am glad I didnt suffer any visible or debilitating disabilities, It has only made my struggle more invisible to others. The whole episode has put my mind in a liminal state and struggling to “find my way home”
I wish you the best and just wanted to acknowledge that there are some that completely understand what you are going through.
I just posted a long rant, that’s very similar to what you’re experiencing.
All that you’re experiencing, personally and professionally, I’ve been there. Sometimes I’m still there.
I’m not doing too well at the moment so I’m logging off now because the light from the phone is aggravating now, but I wanted you to know I read your post, and I would like to respond to it properly and with the care it deserves, and I will as soon as I’m back to “my normal”.