Oh man is this a new emotion. I’m sure from the subject y’all can see what this vent is going to be about, but this all just came on so suddenly. Tuesday marked a month of post embolization and aside from vision effects, headaches and general tiredness, I’ve been doing fantastic in my recovery so far. I’m back in school (senior yeah, hooza!), I’ve been playing into more of my hobbies, and I’ve been generally enjoying life. However, it’s like once Tuesday hit, I completely dropped off from a good mood to being very on edge and feeling like a burden to those around me.
(TW: hospital and death mentions)
I remember the night I was in the hospital, I woke up at around three in the morning to a woman flatlining (I won’t get too detailed as I don’t want to trigger anyone). I had no idea who this person was, what happened that made her flatline or really anything about her. All I know is that I heard her lose her life that night. I’ll never forget it. Before surgery I lost both of my grandparents— grandpa in May, I was diagnosed in June, lost grandma in July. Needless to say, this year has expressed many losses to me. I bring this up because when I think of them, I keep thinking “why did I get so lucky? Why should I have gotten to live and they didn’t? Especially the lady at the hospital”, I heard the doctors say she was young… when I think about everyone who has lost their life to an AVM or aneurysm, I get so overwhelmed and very sad. I tried bringing this feeling up to my mom and she just told me to be grateful that I’m still here. I know it wasn’t her intention, but that made me feel even more guilty. I love my life and I’m so happy that I got a second chance at it and fully intend to live it to the fullest— so why am I feeling so down about it? Is it possible to hurt for these people yet not feel guilty at the same time? Has anyone else on here experienced this too? If so, any affective communication methods for family members and friends so that they don’t add on to already present guilt because they don’t understand what I’m trying to tell them?
Sorry, I’m not meaning to sound like a sob fest or like I’m asking for sympathy, I just don’t know how to get out of this slump.
Bella,
It’s great to know you are doing ok in your recovery. Your survivor guilt I know less about so I’ll share a couple of thoughts and hope that others know some better idea as to what to do.
1 I think this is a complex area and if it were me, I might have a conversation with my PCP about psych support to deal with this. I don’t know where the right place to start is but that’s where I might ask. There may be local support services to tap into, as well. See what others recommend.
2 You don’t know anything about that young lady. If I’ve learnt anything here it is that life isn’t fair and that it doesn’t matter how old or young you are, you can have a nice, small, tidy, plug-it-and-go AVM that gets fixed and you can forget about it for the rest of time or you can have something that is wild and complicated and goodness knows how big thing (that can maybe be part embolised or part resected but we’re never going to do 100% because we’d leave you a very disabled person). Age isn’t a factor in that complexity or outcome. It’s just the cards we were dealt when we were born and the thing with that is that it is often the very young who have the more complex AVM or other neurological thing going on, because the more complex these things are, the more likely it is that it is going to affect your life.
So my thoughts are that while you identify beautifully with that young lady, she actually had very different and maybe more complex issues than you. We all know that we look so similar to each other on the outside but the troubles or complexity or pain that goes on inside is often not visible to others. You didn’t see her as any different from you, which is great, but you don’t know how poorly she was under the surface. None of it is fair but it definitely isn’t your fault or something you should feel guilty about.
I don’t know if these thoughts will help at all. I hope they might. I also hope others will have thoughts to share that do help.
Very best wishes,
Richard
Sounds like me - but, much milder. My emotions were all over the place & still are - and, the same thing - no one can understand. I told my parents a month post embolization about what happened - I haven’t been close with them for a long time - she said the same thing, just be glad YOU’RE alive
I think my 8 year old son understands this better than any other adult - everyone else still thinks I’m the same & should feel just fine
I heard and experienced some wild stuff in the neurological iCU - it changed me forever & no one but me can ever understand that(well, someone else who’s been there - kinda)
As far as guilt that you’re alive - I have never been a huge spiritual person myself. But, after this - I am. . . When I went down the first time & said nothing but a miracle could bring me back - I came back. When I said nothing but a miracle can bring me back the same day when I went in for my angiogram, instead of having to do another embolization - I came back the same day.
I had a rupture with pain that I didn’t think any human could feel without passing out - I had it for over a week
So - apparently we’re here for a real reason. What? - - - well, give it the rest of your lifetime & you’ll definitely find out
Same exact feelings I had - funny, how we’re all so similar
How do you feel tho? Any aches or pains? Do you know what they used, how much & where?
Wild ride right? Lol
I must like self torture by now
Bellnucci,
Welcome
Firstly I can understand fully how people don’t understand what you’re trying to say. As Mike said, his son understands more than most adults. I think my young son also understands more than most adults
I was also lucky so far with things but I also had a people in the Neuro ward flatline while I was there. It’s not nice
I’m going to throw in something that I hope may help
Just a different angle. The people who knew about the things that happened in my life (As I had around 4 other very major life changing things all at the same time as my avm)… and everyone said to me “Why you” or people said I bet you’re wondering “Why it all has to happen to you”
My response was… if there’s an illness that exists, it has to happen to someone… and I’m a someone so why not not me? And that helped me to accept the fact that it has to happen to someone and that someone is me… in my case bad things but hey bad things have to happen to someone… then also in my recovery (so far so good)… my surgery went a million times better than expected so once again some people’s surgery goes well…in this case it was mine
In your case, something good happened for you. Good things happen and in this case it was you. It has to happen to someone.
I really hope I made sense with what I was trying to explain. It’s so hard to get words out but rest assured I DO understand what you mean… just hope my response makes sense
If you struggle with the psychology of it, I would consider seeing a talk therapist as I have for issues before. They are trained and sometimes they say the SIMPLEST things that completely change how you look at things and you think wow why didn’t I think of that lol… They are also trained to be empathetic and caring and s friend for you to talk to that understands
My main thing is say though if you chose to see a therapist, is make sure you have a good connection with your therapist as that makes all the difference. If you dont “click” with them, try another.
After writing my reply, I realised you’re studying psychology so you probably already know about those parts but I still hope it helps:)
Best wishes!
All I can tell you is this. It was simply their time to ascend. Feeling guilty doesn’t help anyone. Live your life and be happy.