I have been asking this question a lot lately. Why me? Why did I live such a healthy life to all of a sudden be cursed with my AVM? WHY? I’ve tried finding an explanation. Searching. Searching for what seems like so long now. Only to find more questions and less answers. I’m wondering. Has anyone else felt like this? And… have any of you found comfort in any positive way? I feel like my health has been crazy lately with all of this wandering. I wish it would all disappear. It’s driving me insane it feels like. Anyway, XOXO.
Lilly
Hi I was feeling alot like you are. I was diagnosed with an AVM/ Aneurysm two years ago and I will tell you it gets better. I’ve accepted my diagnosis and treatment to live as normal as possible. You have good days and bad days. I’m going for an MRI tomorrow and I will tell you that I get nervous every time . I’m more at ease with the thought of a ticking time bomb in my head you just get used to it. Let’s hope the 3 embolizations I had helped. Good luck!
Lilly, I can only speak for myself but think many of us have a variety of internal battles on dealing with these things. When I got home from the hospital I was happy to be alive and recovering. It wasn’t that long and I was getting angry and thinking why me. It struck me as I looked at my wife and two kids, why not me? It could have been one of them, so I came to grips with it being me. I was alive and recovering(still am) and it could have been a loved one of mine. I know it might sound to some to be an odd place to arrive, but it struck me and changed my perspective immediately.
2 Likes
Hi Lilly
I can totally relate however my AVM is in my lung and I have genetic disorder called HHT which causes AVMs.
I found out May last year while I was having a scan done for something else. Since then my life and attitude has changed for the worse. I just cannot accept this thing and still waiting for my surgery.
I try to stay positive as much as I can but when i see normal people around me who are my age I feel like curling up in my bed and stay there forever. I was very active and loved exercise but since finding out I haven’t been able to live my life the way I used to.
I try to be positive but lose hope sometimes and get very depressed, I guess I need to keep fighting the negativity and one day I will learn to accept things.
All I can say is try to stay positive and keep fighting.
xx
P
Hey Lilly,
I was lucky enough to have worked in the disability sector for 20 odd years. I say ‘lucky enough’ because this exposed me to some of the worst medical situations possible. I have days when I think ‘can things really get any worse, can my pain be any greater?’ But then I think of my former clients. My personal medical experiences have been, excuse me, but, bloody awful. I wouldn’t wish this on my worst enemy. But then many of my former clients who live with this day in, day out and have done for years, some of them since birth, and I think, well what have I got to complain about. I could be in their shoes.
I think your statement “Why me?” is very common. Some people on these sites talk of ‘acceptance’ and although it is an easy word to say, the actual doing part is not that simple. Some people get stuck at that initial question of ‘Why me?’ but to accept and move on is key. Rather than looking at what you cannot do, think of the things you can, the abilities you do still have and utilise them for the benefit of yourself and those around you.
So I understand things may be pretty bad, but believe me, they could be 10x, 100x, 1000x worse.
Merl from Moderator Support
1 Like
Hey Lilly, really sorry you are struggling with this. I think your question is one that pretty much everybody here asks. In my case I wonder why my kid has to have an AVM. I don’t know that there are great answers. It seems to me that there is a lot of bad stuff in this life, and different people experience different challenges, and it seems basically random.
I do know that focusing on this question is not healthy though. Sometimes I think what life would be like if my kid didn’t have an AVM, but all that produces is regret, feeling like crap, being withdrawn, and not being engaged in the moment. So instead I try not to think about such things, but instead focus on each day, and doing what I can to find joy and make things good for people around me. You can’t control your diagnosis, and you can’t always control how you feel, but you can try to focus on the opportunities and good things that are there in your life. This isn’t denial, but instead is acceptance of the situation, and deciding to try to live each moment to the fullest. Trying to stay up is not always successful, but the effort I think does help.
I wish you the best.
1 Like
Hi Lilly
I would think that you are definitely not alone in questioning “why me” I like otheres have struggled with it since my diagnosis and done the bit where I analise every bit of info I find about avm’s /anaueysms trying to find the answer. It makes me mad, it makes me cry. I am angry that I am living with this but scared not to be here.
It can be difficult sometimes to be positive but I feel that enjoying and appreciating little things that make me smile helps. This can be anything from looking at a family picture to doing a task in work that has went well. There will always be so many questions because of the nature of this illness. Unfortunately we cannot switch off that human emotion of “needing an answer,the why” . We are a curious bunch. Yes I can get angry when I see others
My age getting on with what seems as a normal symptom and pain free life, but I try to look around at what I have in my life and appreciate that, which helps. Hope you find some answers on here. Keep positive you are not alone . there are people here who “totally get you” and will never judge any emotion you are experiencing. Take care😊manda
I had my right occipital lobe AVM removed last August via craniotomy…thankfully pre-bleed. My family were all asking “why her?”. Mom thought it was something she did wrong while pregnant with me since we’re born with AVM. I wondered why me and not my sister?
I also had a hemangioma, which is a vascular tumor, in my right tonsil (also removed in October).
Now I live with the knowledge I still have a fenestrated right posterior inferior cerebral artery, which can become an aneurism at any time. That makes 3 vascular problems so far that have been found in me, all on the right side. I try to live as normal a life as possible, but now every day is a gift and I try to choose happiness every day. Any chance for love and more happiness is taken now (nothing ventured, nothing gained).
I do get sad and depressed sometimes because of this, but I have decided to be stubborn. I will choose to live happily to spite the powers that be that wish me otherwise.
1 Like
Hi, Lilly,
I am a little different than most, I guess. I never really spent a lot of time pondering ,”Why me?”. As a critical care nurse, I saw so many sad stories. Why them? Not to say I didn’t feel depressed. I did. But, that came before I realized that even though life was going to be way different, I could still be happy. I could be productive by finding activities I enjoyed that I did not have time for before. Meri said it. Each day, be glad to be alive and choose happiness.
Take it from me, worry robs you of the good moments.
️ Lifeisgood
Lilly,
I can relate to you because i was 20 when diagnosed. It helped me to think of the opposite question. Why NOT me? i had health care through my parents, family support, and my folks paid co pays & deductibles. I had 4 embolizations & a crainotony in summer '01, and went back to college in August like it never even happened.
Anyway, i hope you also have healthcare & family support. If yes, then why not us? Is there anyone really in a better position to hang?
Post script, I’m 33 now, a lawyer, taco enthusiast, outdoorsman. This was all only a blip on the radar in the past. You’ll be fine
- Chad
3 Likes
That’s a huge relief. I am so glad to hear that. I struggle everyday with this lingering question, Why me? However, I do consider myself lucky in many ways. I have an overwhelming amount of support. Much of it is from family and friends. Also, I have support through my faith in Jesus Christ. Everything happens for a reason right? This is just a little bump in the road. Thank you for the kind and encouraging words Chad!
4 Likes
jeez, I must be older than I think cause i can hardly remember dates. I said summer '01, but this was all summer '05. My bad
Yada yada, that’s how little relevance remains. This surgery or diagnosis is not the event from which time is marked. My life isn’t “before brain surgery” and “after brain surgery.” Stay tough out there. You’ll be fine
1 Like
I’ve had some of the same thoughts. Why me? My AVM ruptured back in 2000 when I was a 10 year old boy. The years 2000 to 2002 were the crazy days. Ended up having 4 brain surgerys out of all this. It was a long recovery to. I had my struggles but I never really felt that sorry for my self. I had seen other kids my age in the hospital with a lot worse struggles with cancer or car accidents. The best way to describe why all of us have an AVM is when I read the book of Job. That guy gets tested and has a lot more bad struggles than even we do. Not just pain but emotional to.
You will drive yourself crazy trying to answer why. I was fortunate, my AVM was asymptomatic. But once it was diagnosed I got past the why very quickly. A few days actually. Then transitioned to, what now?
Since I nor anyone else could answer “why” sufficiently enough, it accomplished nothing for me to dwell on it.
We’ve all been where you are right now. You must be stubborn and get in your mind you will get through it and have a long, active and happy life after this brief journey.
Mine was 25+ years ago. Try hard to focus on the options you have these days: medical technologies, doctors, nurses and surgical procedures at your disposal. They’re all so much more advanced than when I was in your position.
You’re probably surrounded by love from family and friends. Let them in. They only want what’s best for you. As do all of us out here.
You’re going to be fine. There’s no other option.
Bill
Hi Lily ,
I’m the same as you . I stopped finding the answers to the questions “ why” but instead I just learn to accept it and move forward 1 day at s time . I was successful and healthy , has a massive stroke while pregnant with my very first child , the stroke came s month before my wedding to my then fiancé ! it’s been since 2014! Early in 2018, my husband (fiancé during my stroke ) separated leaving my daughter and me behind , claiming that he fell out of love with me ! Finding the answers to “why me as in having an Avm” , I see that the answer to this question will not reverse what/how it has changed my life . So I’d rather focus on what’s more important to propel me forward for a better life ahead for the 2 of us !
Best of luck Lily !
2 Likes
Lilly,
I had my AVM in the very early 70s, when nothing was known of them. I have been living with it for 50 plus years now. The type that I have is in my face and is congenital, something that I was born with. People cannot see it so they don’t feel you have anything serious going on. They do not realize that it is life-threatening. I have never had the why me attitude because I have lived with this all of my life. I think that we all have something major, health-wise in our lives so we can be thankful that we’re able to live fairly normal with this. I wish you the best of luck, keep your head up, it gets better.
1 Like
Hi Lilly,
I thought about it a lot, especially in the few years after my AVM ruptured. It seems to me a perfectly natural and normal thing for a person to have these feelings. To the best of my knowledge there is no known medical reason - a weakened blooded vessel (in the brain, in my case) is not thought to be something that is inherited. But I think your question asks something deeper.
I thought that maybe my mother smoked during her pregnancy because at that time it wasn’t not known that cigarettes were bad for your health. I was born in 1961. The surgeon general’s report didn’t come out until 1963. She wasn’t a heavy smoker, but she smoked. My mom got pregnant with my sister at about the same time the report came out. When she heard the news on TV she threw out her cigarettes and never smoked again. But it was too late for me - the AVM was already baked in … a time-bomb that exploded when I was 38.
I met with a spiritual advisor to ask why this had happened to me. She asked me if I was named after any relative. I said that I was named after my maternal great-grandfather who apparently was a bit of a gruff, bullying type of man. She asked me how my maternal great-grandfather died. I replied that he had died suddenly of a heart attack. The advisor said that the sudden burst in my great-grand-father’s heart was spiritually linked to the sudden burst in my brain. So I changed my Hebrew name in order to remove the negativity.
For me, I have accepted that fact that I will not know the “why” and that it’s best to live my life as best I can. I don’t think about it anymore. I just keep moving forward. Problems come up in life to give us an opportunity to make us more sensitive and less egotistical. You might think that I’m crazy but the “curse” of the AVM is really a blessing if you can only shift your consciousness to look at it that way. A big medical problem disrupts the path you thought you were supposed to follow. It’s guiding you to some other life you didn’t expect. It’s ultimately your choice about how you want to handle the situation.
I was curious about kabbalah before my stroke. After the stroke I started to take classes. The classes have been helpful. I can tell you one thing for sure, it’s not your fault. You have nothing to feel guilty about. Just keep putting one foot in front of the other.
Best wishes,
Adam
Hello ,
I know exactly what you feel like. I was in the same mindstate as you. And like you said I could not find any answers for the questions I had about my avm . I was told by someone who had a traumatic brain injury to not start asking and wondering about the why me and what if questions . Because it would not lead you to a positive outcome. So I stopped thinking about it and just accepted that it happened and that the only thing I can do now is focus and work hard on my recovery instead of searching for answer s to thewhy me and what ifs I spend that time researching things that will help me with my recovery like.undeestanding neuroplasticity and how it works and how I can use it in my recovery . Good luck with your recovery. Try to stay positive and focus on the positives in your life. Hope that helps.
2 Likes
Wow…nice perspectives with a positive impact on me. In my case, I didn’t experience a rupture but I found myself with the ability of hearing my blood flow pulsating in my right ear. Initially, I thought maybe it was the beginnings of an earache but it prolonged for a long time until I sought medical attention. Once I initially acquired a complete analysis, I was rushed to a hospital to discuss my condition. When we arrived to the hospital at approx. 1630 I soon found myself in the surgical room experiencing my first of many surgeries in an attempt to take care of my AVM (Anterior Vascular Malformation) as I was near a rupture of one of my veins. Approx. 30 surgeries later (planning surgery, surgery and post surgery) I was exhausted and couldn’t take any more which worked out since my Dr. said they were done. Today, I’m feeling better but have suffered indirect consequences which I was not expecting. I have since then lost my parents within a short period of time within each other, suffered a huge salary cut, my wife left me after 31+ years of marriage, my short term memory has been seriously damaged, my priest tells me that I need to accept the consequences and the lord will take care of me. Given all of this I try to march forward but I’m having a hard time accepting as I try to figure out what I did wrong in life that left me in the position I’m currently in.
Just like you I was very healthy as a non-smoker, didn’t drink alcohol & excersising regularly THEN out of nowhere I get the AVM diagnosis… I was the same but I knew I had to stay positive & keep my faith up… it does get better & there are always going to be those down days but that’s normal as there is much to live for… God bless!