Though it's been 12 years since my avm last ruptured, I am really keen to find out the disabilities other brain avm survivors face. My attention span while working, studying, reading and focusing seem to be significantly weaker than most of my peers. I space out quite easily and lag or stutter when it comes to responses. My memory appears to be rather short-term too. Memories before my rupture remain intact and vivid. For the past years I've forced myself to work with alongside peers and discard any excuses for my condition because I figured life has to go on. I would say it definitely did pay off well and I have been living my life to the fullest ever since. However, I think that I have come to a point where I am rather tired of having to work 10 times harder to achieve the same things others would be able to more easily. And on top of that, nobody really understands the difficulties you & I have to overcome and what exactly you and I go through during the process of (hard,hard) work. Because on the outside, I appear to be functioning 'normally'. I am really interested to hear the setbacks you have been facing and how you are coping with it. <3
We've been through 12 years and we're still going strong!I am so proud of us and especially you for not giving up. I like the way you put it "I refuse failure". That's my motto too. Except you summed it up beautifully in three words. I will check your discussion. God bless you too. We'll look forward and work towards our dreams. I promise you I will stay focused. Thank you for your response.
Min, I applaud your being able to work alongside others for all of these years and do well. I was not able to do that after my bleed. I did try but I only lasted 2 weeks before I realized that I couldn't do it. I guess the most obvious "disability" I have as a result of the bleed is that I have a visual field cut on the left in both eyes (hemianopia). I'm also like you. Memories before my bleed are intact but my short term memory is weak. It's very random also. I never know what it is I'm going to remember and what I won't. My stamina certainly isn't what it used to be. I tire very easily. Like you said we have to work so much harder to do things that others do with ease. I also still get dizzy a lot of times. I'm very unstable walking. I get lost very easily even in my own neighborhood. I also am not able to drive. It is frustrating to realize that no one understands how difficult it is because we look perfectly fine on the outside. I guess for me the way I deal with it is to accept my limitations. I used to be very hard on myself when I couldn't do something or when I forgot something, or when I fell down or bump into something because I can't see it. Now I tend to laugh it off. It's just who I am now. No point in getting upset about it. It just is what it is and I can't change it. I'm much more forgiving of myself. When I get tired, I rest. Even if it's just sitting in a quite room. I don't push myself to keep up with everyone else. I just can't. I'll be intersted in seeing the responses you get.
Hi Min, Wow..twelve years! That's a long haul. It's wonderful that you've stuck with your job for so long. I like how you continue to fight, and have a positive outlook on work and life.
It has been a little over three years since my AVM bleed. The disabilities or limitations that I experience are short-term memory weaknesses, minor speech problems, some intellectual limitations (people would ask me a question, and I think that I giving them the answer that I want or answering correctly, and they'll repeat the question, adding emphasis in a way that used to make me feel like some kind of idiot), and the peripheral vision in left eye being affected (my vision is slowly coming back, but the process have been so slow). I held on to my Receptionist job for almost two years, until my boss had given me a two month notice. It has been tough to get back into the swing of things because of my intellectual limitations and speech problems, but I was finally able to overcome it almost completely. For about seven months, I've been working in Sales Support for a national sign company. I keep a checklist for all of my tasks, just to make sure that I do not forget to complete them before the day is through. I attend school part time an still maintain a 4.5 GPA (I work twice as hard to maintain that these days). I can understand nobody really understanding the difficulties and things that we go through as AVM Survivors. That was the case in my last job. They knew what happened, but did not completely understand. I assumption was "She's alive, she looks fine, therefore she must be fine." If I answered a question wrong, or said something (that did not completely made sense, or poor wording) I would get treated like an idiot, or some crazy person. At the time, I was tempted to yell: "HELLO! I have a brain injury!" Nowadays, I just let it roll off of my back. Being a part of this network has helped me, knowing that I am not alone.
Sorry, what I meant by work includes school work too. Thank you for your kind words. I agree regarding the randomness. We can never predict what we'll remember and what we'll forget. It really does affect ones self-esteem. I do get disorientated too. It takes me more time to recognise places. On random days, I do forget my directions. I agree with what you say about accepting it. Except, I do push myself to keep up or better others most of the time. That is probably why I get frustrated. I do it because I have this need to prove to myself and others that I'm not really dumb. I just take a longer route. Will the visual cut in your eyes get better with time? I really do hope so!
Hi Leslye! Thank you for your response. Sorry, what I meant by work includes school work. Missed that out when I was typing.I will never stop fighting. We should never stop fighting!It's just that sometimes you get tired and you need to rant it out. I'm sure you understand what I mean (:
My limitations are pretty similar to yours! Don't worry, it will get better with time. I used to be a lot slower with my responses but I would say I'm better know. I think it's about disciplining yourself to focus. But whenever I do that, I will get extremely exhausted once the task is done. I too, sometimes experience intellectual limitations when it comes to responding questions. It's like you know the answer, you want to answer what you have in your head. But, you end up saying something else that doesn't quite answer their question. Wow Leslye..4.5 GPA? I really look up to you am inspired to work as hard!
I can understand you totally! Though others don't say it, I sometimes feel like I'm being judged upon. In fact, a lot of the times I have to actually act focused to appear normal. It's so tiring to! I'm new here but I'm feeling the love from everyone. It's this mutual understanding we have for each other. We know how much it takes to try to "be normal". Thank you for your response once again. I will continue to work hard and shine (:
Min, I was a little saddened reading this. You said you try so hard to act "normal". What is normal anyway? What I always say about our situations is that we have to get used to a new normal. You are not in any way "not normal".You are you and that is a great thing to be! You don't want to be judged, I understand that. I also know that every one is judged or judges at some time or another. What you have to do is realize that how others view you is not important. How you see yourself is much more important. Learn to like and accept yourself just the way you are and it won't matter what others think!
12 years.... That is the longest I've heard. It's been 3 years now since the burst. I felt the same way before the surgery.... I just hoped that it would be quick. Check in or out. I did not want to be a burden to anyone. At one point, I did not care to live or die but now realized I have a goal to accomplish. I have kids. They need me. I cannot die yet. I still have a use but have issues. I guess my question is how long can we go on with this inconveniences? More power to you all...
Thanks Trish for the message. I have the same issues. I am Electrical Engineer by trade before my position was terminated due to this ailment. The frustration is there where I cannot concentrate anymore in addition I am being really clumsy. I still cannnot complete what I start. Slowly I am loosing my technical capabilities. I take about 2 hr naps to relieve the stress.
I have to agree with everything Trish said. Please do not waste your time comparing yourself with others. We do not know whose lives we touch. You might be an inspiration for someone else when they become ill. Be proud that you are a survivor!!!
I am 52 years post avm bleed and craniotomy. It sounds like you are experiencing the same stuff I do. I did compare myself to others at times. I do not work anymore, but it was hard. I am blind in both eyes to the left, and that is not easy to live with. In the long run, it's been a good life most of the time, a hard life at other times. But it's worth the painful part in order to be here.
My AVM was discovered 7 years ago. I suffered a stroke due to it bleeding, so my losses are:
Loss of the use of my left arm. Paralysis from the knee down of my left leg.
Severe spasisity on my left side.
Decreased balance.
Pain issues due to spasisity that effect my back & neck.
Carpel-Tunnel like symptoms in my right hand to to over-use.
Severe migrains due to the brain surgery to repair my AVM.
Hi Trish, sorry, I tend to use the wrong words when I express myself. I didn't mean "normal", I basically meant working the same pace as other. I like what you say about "the new normal". That makes perfect sense. And you are right..besides, what's there to complain and fret about right? we're alive ;)
Hi Barabara, Most of my disabilities are not physical. You can say I'm "lucky" in a sense.Being more abled physically, I feel a need to push myself this hard because I feel that I represent all of us (avm survivors). Therefore, I need to do something big to stand up for all of us and promote this awareness of what we go through. Trust me, I will one day...
Beansy, you are one major FIGHTER! 52 YEARS?? That's simply amazing.
I guess it's also the pressure I get from the environment. I am in college right now, when I do return to my country, I have to hide my disability to stand a higher chance for a job.Anyway, refer to reply above. (: I really was just curious as to what other brain avm survivors have been through (:
Hi James, congrats on your 7 years! Yes, I slipped into a coma due to bleeding. That's only how we discovered the avm. It seems like most of your losses are physical.I am so proud that you've managed it for so long (: Do you experience any memory difficulties or having difficulties expressing yourself? Like yourself, I do experience abnormal head throbbings too. stay strong!
After my first bleed, everything with the healing was going good -- we bought a small town cafe, adopted a baby boy and was in the process of adopting the second time when I had my second bleed! About seven years later, I wasn't as lucky that time -- I have battles to fight every day! But I am forunate enough not to have to go through them alone!! Family, friends, and of course, this site!!
My biggest problen -- well one of my problems is bad headaches. Double vision (which about a week ago I had surgury for to correct and so far everything is going great!! a Weakness on the whole right side of my body -- biggest problem there is living in the cold climate of winters is that my hand gets cold and I don't realize it until its too late -- then the pain sets in!! But - hey - I am still alive!! So ' yes' it can be a long process -- just take it day by day!
Wow. you sound like a tough cookie to me! Do post up some photos of your lovely cafe! I admire you for adopting..it takes great effort to care and love a new addition to the family.
I hope your headaches will ease with time. I'm not sure if it'll help. But, I do find yoga extremely good for both the physical and mental health. Perhaps you can consider it? (check with doctors first) Yes, you're so lucky to be alive and breathing! My heart stopped functioning for 9 days when I discovered mine through a coma.