I am so blessed to still be alive. I know it, everyone knows it. I am so grateful to not have any major damage to my brain, my body, and to my abilities. My doctor who performed my stint said I was incredibly lucky to come out “whole”. I feel empty, not ungrateful, I am thankful everyday to wake up, but empty, like a shell of my former self. I notice things about myself, like I mis-speak, I trip a little easier, but if mention those things I am told if that all that is wrong you should be grateful. I just want to scream that me noticing something new about my life now is not being ungrateful. They shaved my head to put in the drain, and it bothered me to be bald, it still bothers me my hair is super short, even a year later and I get told to be grateful I am alive, it is just hair. I talked about it to my therapist alot when I first came home, and she said that I am allowed to be both grateful and annoyed with my hair, with my words getting lost, with everything. That me being annoyed wasn’t being ungrateful. Why is it that no one else can see me stating facts about how things have changed and how I am not me anymore doesn’t mean I am ungrateful. How do you deal with everyone dismissing what you went through, what you are still going through as just complaining. How do you deal with the knowledge that your life should of ended and some how it didnt. I feel exhausted and empty. How do I get some of my life back? I have read some of the stories on here and I feel like I am whining, my issue wasnt that bad at least in my mind, but most of the time I was in the hospital, I dont remember. My husband said I was close to death, and he is glad I dont remember. I don’t want to seem like a whining little baby on here but I thought someone here would be able to relate, and understand.
Welcome to our group of friends who have been in your situation. This is the club that we don’t want to be members of, but here we are, trying our best to lift each other up. I also ruptured and had my skull shaved and a hole drilled in my head for the drain to release the pressure, you can read about my experience in my bio. I can understand and relate with your feelings and I think your husband is right when he says that it is good that you don’t remember your time in the ICU. I have some snippets of memories from my two weeks in the hospital, but that is not much and I am glad that most of this time is wiped out from my memory. For me personally I felt the need to try to put the pieces together when I got home so I started using my patient portal to look for notes from the doctors from my stay. I also tried to educate myself about ruptured aneurysms and the effects.
You have taken the right step in your mental recovery to talk with a therapist. Continue with this if you can. I also came out from this experience with a brain damage that is not visible from the outside and I think this is harder for people to understand than someone who for example is sitting in a wheelchair. For me it’s brain fatigue, but it has been much better during my five years of survival than it was in the beginning. Yes, we mourn our “old selves ” and we definitely understand how lucky we are to have survived. Can you start doing something that you love to do? Something that gives you positive energy and memories? If people around you don’t understand, maybe don’t spill your energy trying to convince them. They will never understand…… I still have bad days mixed with mostly good days and I know that I feel better when I do something that I enjoy doing. I’m thinking like this, the First responders, the Life Lift Helicopter, the Neurosurgeon, the ICU doctor and nurses has worked their butts off to save our lives.Our families thought they would lose us. We are “beaten up “ but we are still standing, we will get more challenging health issues along the road so take the opportunity to do the best of every day. I wish you all the best.
Take care and write to us.
Thank you for taking the to write me back. I have been in therapy for years even before this happened, and will be in the foreseeable future. I have also tried to piece what happened to me when I dont remember but have not gotten far. I will try to find a hobby that brings me some peace. I appreciate your input.
Hi Stephanie, welcome!
I see on your profile that you’re in the 40-50 block, and that you have two kids, so we share both in common.
I recognize the feeling you’re experiencing, too. I have never been fragile in my life in any way, I feel like I was always working harder than most people around me and helping whenever I could, because that felt good, felt like my natural state. I was always the problem-solver, loved to chew on something until I figured it out.
Come this summer, I had to face a complete identity shift. Others started treating me like I’m made of glass, or could drop dead at any moment. I stopped traveling for a few months after my surgery, so my business partner took a trip to Kenya and Zimbabwe without me, and I felt completely useless. I now have to ask people to lift heavy things for me, and get scolded for being on step stools and ladders. My short-term memory stinks, so I’ve had to get over being embarrassed for telling people I will do things for them and then promptly forgetting.
I remember taking a course on Death and Dying at university. We learned about the five stages of grief. Looking back, I can see that I’ve traversed some of those stages in grieving my past self…denial, anger, bargaining, depression and acceptance. Perhaps you’re working through some, too.
Since I can’t go back to who I was, I’m trying to find ways to enjoy who I am now. To be honest, it’s kind of a relief to not be the go-to fixer anymore, and asking for help isn’t nearly as humiliating as I once thought. I take notes, set reminders, ask people for grace, make jokes about my brain, and show off the epic bruises I get now that I take blood thinners. I wear an emergency alert bracelet, and that now feels like my security blanket should anything happen while I’m away from home.
I like that I can’t get stressed out anymore, it’s against doctor’s orders. I had an interaction back in November, I was at a trade show and a lady approached with an old dog, so of course I had to wave at the dog. She trotted over to me, leaned against me and stayed close for a few minutes, wouldn’t leave when her owner prompted. Her owner was surprised, as the old girl is apparently skittish and snappy around most people. When she saw my bracelet she asked about it, so I told her I have brain aneurysms. “Okay, so you are calm,” she said, “she feels safe with you.” I love that!
I hope your hair grows back beautifully, and people learn better ways to interact than to tell you what you need to do or think. I’m sure they are well-intentioned, but I’ve also heard that’s the pavement on the road to hell. That’s often what it feels like on the receiving end!
Welcome @Zalerhea -
I am so happy that you joined us and have shared your experience. Although I know I am so fortunate to have the support of my family throughout this experience, they don’t - nor can they - understand what I/we have all gone through. Hence why this community is so important that - although we all seem to have our own unique experiences - we can better understand your journey that our family and friends as @oct20 well noted!
I, too, had a ruptured aneurysm (subarachnoid hemorrhage), and then had some related conditions thrown on top, namely hydrocephalus and meningitis. Like you, I had to have more “traditional” brain surgery, especially for the VP shunt for my hydrocephalus, so I did the shaved head routine twice so far. To be frank, my hair is STILL growing out after the last round and it was ~1.5 years ago (o.k. so I have shoulder-length hair so it takes longer 
).
I, too, wake up grateful every day thanking my extended medical team, and all those who supported me, since I have been able to recover so well. However, I am still human so of course I get annoyed at things that changed because of the experience - the people that quickly walked away, or how people treat me, etc., etc.
My first neuropsychiatrist really emphasized meditation/mindfulness to me. I come from the Western, scientific kind of people so this definitely would not have been my kind of thing pre-rupture. However, I did try it, and I have found it to be incredibly helpful. I do use several, but my personal favorite is Humin (f/k/a Health Minds) - and a bonus it is completely free! It is run by an organization associated with the University of Wisconsin-Madison so it is not commercialized, and has gotten positive press from various media organizations.
What I really like about it is that it an East-meets-West kind of program so it integrates meditation lessons with lessons about how your brain works. As one lesson I just listened to reminded me, meditation to the brain is what physical exercise is to the body. It helps to strengthen your mind to create greater resilience for when you do go through tough situations. Of course, if this doesn’t work for you, there are tons out there so try another until you find one that does!
There are various benefits that can come with meditation - including reduced stress - e.g.
Like @darlysaar I am to keep stress to a minimum and my wearables suggest it does help! It also helps me to give people some grace and not give into the emotions and stories that my mind tells me all the time - I am certainly not perfect - but it is a tool I can now use.
Please keep sharing your thoughts with us - that is why we are here!
Sending good thoughts out to you!!
Fin Whale Fan 
@Zalerhea Do you know how to knit or crochet? You can make yourself a nice scarf of a beautiful yarn. I like to knit and I find it very relaxing, I also paint watercolor paintings, something I have done as a hobby for many years. If you want to try it, there are many free tutorials on YouTube. Start with a starter kit of paints and a good quality paper, there are small blocks that are great for beginners. We definitely need to practice some self love, take a warm bath, get your nails done. Your hair will grow back. I hope you find something that you enjoy doing.
Glad you’ve got a therapist! I had zero affect after my SAH for several years. I didn’t get innuendos and I could no longer read other people’s body language. But I did get those out of my life who caused me more stress, including a few family members. I could no longer be the fix it person in my circle, so folks who love to live in drama and chaos was doing me more harm than good. I may have not recognized it but BH did. I certainly have “tells” with my speech and tremor. If I’m stressed sometimes the tremor goes to both hands.
I agree with other members wholeheartedly. We do need to practice mindfulness, we do need to practice relaxation breathing and having a hobby one can do is fantastic for our well being. We get so many rules after we rupture, it can be confusing. The rupture changed us but the rules also change us. Then we’re supposed to remember them all, what’s up with that? Sticky notes, dry erase boards, smart phone became my crutches for remembering.
Fortunately I found this group after the year following my rupture was over. One of my rules from Dr. Q-W was to not get on the internet and do any searching for one year. Back when I joined, Ben’s Friends had just started helping the BAF. It took a lot of work from a lot of people to get the support group going in a positive direction. Without them, I certainly wouldn’t have stayed, I understood why she didn’t want me to be on the internet.
This group is here so we can vent, we can gain from others so we don’t have to reinvent the wheel. You are definitely NOT a whiny baby, you’re just stating facts you feel. In my opinion or maybe experience, feeling anything is a positive. It’s frustrating as heck to not be able to bring up the word we want. You’re right that people who haven’t experienced it, well they don’t always get it. Maybe the world needs to practice more empathy.
I can’t speak to hair. I had mine cut short right before my 3rd repair attempt because she wasn’t sure if she’d be doing a craniotomy. When folks asked why I came to the conclusion I wanted to be able to balance it out better.
. Hindsight suggests it may have been a way for me to have some semblance of control.
I do remember my 26 day stay in ICU. I don’t remember each and every day of course because it’s been a dozen years but I can remember the highlights I guess one could say. I remember it was either Tuesdays or Thursdays nights patients would pass away. It really affected the nursing staff. I remember making BH a birthday card using a couple of index cards, a glove and borrowing EB’s cheap Bic pen. EB was a wonderful med student who insisted I return her pen. She became very excited that I still had fine motor coordination. I worked on it for hours, it was difficult but I was determined to get I done before BH came from work. EB got her pen back, took the card and showed it to everyone. When BH came into the unit, they all sang Happy Birthday. BH still carries that card around. They didn’t tell me I might not make it to the next day for the 21 days of vasospasms I had, but they did to BH.
It’s hard work we undertake coming back from a rupture and learning the changes it’s done to us. For me, I like practicing gratitude rather than being grateful, there’s a difference. I also take one step forward at a time as I’ve learned that if I try more, I can end up three steps back. I would suggest not arguing with those that don’t get it. It will end up being a fight of futility. Just practice your breathing and work on one thing at a time. Hobbies are helpful, very helpful. What type are you interested in? I had a couple of hobbies before I ruptured and am still relearning how to do them. But I’m learning!
FWIW, I just received an email from Love Your Brain*, and they are having a Zoom session tomorrow night that made me think of everyone so I wanted to share:
[Yoga, Positive Psychology, and Neuroplasticity for Brain Injury Healing]
(Yoga, Positive Psychology, and Neuroplasticity for Brain Injury Healing)
This workshop blends science and self-care to empower you to:
- Apply positive psychology tools—like gratitude, affirmation, and mindfulness—to “install the positive” and build resilience
- Sequence neuroplasticity-focused yoga to support brain injury recovery
- Use gentle, breath-centered movements that calm the nervous system and lift mood
Ticket costs vary ($0-$50), as they understand having a brain injury can have a financial impact and they do not want that to be a barrier to your healing. If you can’t make that time, they will share a recording to all who register.
Just in case this might be of interest, I wanted to share.
Sending good thoughts your way!
Fin Whale Fan
*If you are not familiar with Love Your Brain, it is a separate non-profit that’s focus is on people with Traumatic Brain Injuries v. Acquired Brain Injuries like ours. I have not gone to too many of their sessions, but they have also never kicked me out for being a distant cousin. 
Zalerhea, I could not concur more, well said
Hello @Zalerhea! I completely understand as well… after 4 months I feel like I’m just complaining when people ask me how I’m doing but I also don’t want them to think everything is fine. Just a short note on gratitude exercises… I was a banker many years ago and for whatever reason our manager had us write down 3 things we were grateful for daily. At first I thought it was just a waste of time, but eventually it kind of became a habit and honestly got me through a some very traumatic experiences. It’s not something you have to share with anyone, but the mental reinforcement you get from doing it can have a big impact. Even being grateful for trivial things can help you see things differently. Take care and just know we’re grateful you’re here 
