My name is Anna, and I just made an account.
I had an AVM rupture when I was 17, and had it surgically removed. Although I went through intensive physical and speech therapy, my right side is numb and I have a speech disability (speech apraxia I think?).
I am now 22 and just started working. However, my physical and speech disability affects my work performance.
For example, I can’t talk on the phone or to my colleagues without stumbling over my words, Every time I want to say something, have to think hard about how to pronounce the words and worry whether it would come out correctly.
I am also constantly knocking over things because I am not aware of my right hand.
Although I try my best, I feel useless and embarrassed at anything I do.
I try to talk about my feelings to my parents, but all they say is that I’m worrying too much, or that I’m not trying hard enough fully recover.
Does anyone have the same experience? I would love some support or advice from anyone who does!
Unlike others, you need to cut yourself some slack. I know it’s very tough in our society/world.
But, it is what it is
Just yesterday I was at the gym, my right leg went numb and I kinda had to drag myself out of the gym.
My AVM also ruptured(almost 3years ago), but unlike yourself - I “only” required an embolization. . . I’m still not the same. My speech is ok - although in stressful situations I have caught myself with a bit of slowness in my speech.
To me, it sounds like you’re doing solid for being 5 years post craniotomy. Let alone being 17 when it happened, I was 39 when I hemorrhaged.
Hope that helps at least a tad - I definitely get it tho - post hemorrhage my whole life changed & I have the least symptoms of most.
Welcome Anna, it’s great you are here with us, too bad you have a reason to be, but hopefully we can help you out a little. First thing I will say is that people who have not experienced what many of us have, have no idea the challenges we have faced and overcome. I agree with Mike, sounds like you are doing very well post bleed and craniotomy, the challenges you have overcome are beyond the comprehension of most.
Your feelings are completely understandable, and I went through a little similar with some aphasia and loosing words. It was frustrating me greatly, I did develop a couple strategies that worked for me but at times I just draw a blank. I am now 7 years post bleed and Gamma knife, but it is still happening less often. Although I am 55 and expect it to start for other reasons anytime!
I am completely up front when in a bit of a bind with the words and just say it is one of those things that happen once in a while since I bumped my head a few years back. Those that know me get it completely, those that don’t often don’t recognize when t happens as I’ll swing to a different word or a different way to express it, I am fortunate and recognize when it occurs.
When things like this happen to us, our loved ones are deeply impacted, and often want nothing more than to help but struggle to do so in a positive way. i have a 17 year old and 1a 19 year old and can’t imagine if what I went through was one of them. As a parent I would have been lost, wanting to fix, not being able to and not adjusting well to just supporting. As parents we are expected to have the immediate answer or repair, and to not effects us deeply and I for one am are really poor at expressing this with my “kids”.
Always remember that in the brain injury recovery world, forward is forward, the pace we can’t control. Minute improvements are the right direction!
Hi Anna, You are welcome here.
I had an AVM in my brain rupture, 2 craniotomies and seizures for 49 years or so.
After all this time I’m realizing that what matters most is how you look at your challenges.
Just today, not coincidentally I read that Christopher Reeve, the actor that was crippled in a horseback riding accident, was grateful for the chance to grow spiritually.
I suggest you realize you have a new job-- develop the skill of patience and self-care. That is literally your job.
You may be able to find teachers and sources for wisdom in places you never expected.
As far as your speech and disability, I’m optimistic that you’ll regain full function pretty quickly. Best wishes, Greg
The guys who’ve gone through similar to you have given you great insight. I’m lucky not to have had any real impacts from my AVM (so far!) but I think my message is
You’re being way too hard on yourself.
There’s an interesting line between “accepting” some of your limitations and at least “understanding” your condition (and allowing yourself to acknowledge?) I don’t quite know the words to use to get the right balance across when can only type the words to you. I think it could be helpful for you to “accept” a bit more what you can do and what you can’t do. Or, what is easy to do and what requires effort to do. And not criticise yourself for finding it more difficult than we’d all like it to be.
You’ve got real challenges that other people haven’t got. It may be that by keeping practicing some of the rehab things they had you do you can keep things in check a little bit. Other than that, you’re absolutely doing your best already.
So don’t feel “useless” because it is simply not true.
Like John says, you may need some strategies. Things like not keeping important don’t-knock-over stuff in view on your left might help, just thinking about what you have where if you have a work desk for example.
I think you’re doing amazing
Although I try my best, I feel useless and embarrassed at anything I do.
I’m so sorry you’re feeling this. Really this shouldn’t be your problem it’s everyone else who needs to change and be more help.
My experience is different to yours. I had jobs where i never discussed my health, others where i was open about it. I’ve always found people who would not understand or be helpful, however I’ve also had some good bosses.
I think 1 of the hardest things is that few of us AVMers can replicate our problems, whereas a sighted person can wear a blindfold to get an idea of visual problems.
Depending on your work setup and how you feel i would suggest meeting 1 person and talk to them about being your link. Maybe do this away from the work place. This person may well be your boss but could also be someone from Human Resources or a union representative. Then anytime you have a difficult situation you can inform your colleagues through them.
In my offices i did walk into door frames etc and found this very embarrassing. I still do it now on bad days but that’s just 1 of my avm deficits, which i have to live with. If someone said something I’d probably tell them where to go and then later go and explain how they could be helpful.
Firstly I would like to say
You’ve overcome Alot and are an inspiration to manymy AVM ruptured back in2017 and I still have weakness in my left side, I also have other deficits like Left side neglect and as a result, similar to you I tend to run into and nock things over on my left side. I want to reassure you and tell you things will get better but, more importantly want to share something I realized during my time since my AVMrupture/ stroke. We have to look at our residual deficits as symptoms that we merely need to manage just like a diabetic patients manage their symptoms. Continue to live to the fullest, don’t be so tough on yourself and just do your best to manage your “symptoms”. I also wanted to share my book with you, which contains the strategies I used to cope with the difficulties I had to face, in hopes of inspiring others and helping them get through tough times. Please do check it out! Here’s the Amazon link to it:https://www.amazon.com/gp/aw/d/0228827450/ref=tmm_hrd_swatch_0?ie=UTF8&qid=1684858832&sr=8-1
Just to let you know as a parent of my son who three years ago may 13 had an AVM burst he is still recovering three years on although he is more of the physical side left side deficit and fatigue and the yes knocking things over. I would like to say you should look at the improvements not where you are becouse it’s such a slow process this revovery you should feel proud of all the little improvments!!!
My son is 19 now and we are still doing intensive rehab. He is working one shift a week and doing two uni classes. The fact you are working is to be celebrated. Have you thought of explaining this to your colleagues? Try to find those who support you and cheer on all the wins.
Hope this helps and feel free to ask any questions.
I also have speech issues following the removal of my AVM! It can be frustrating when the words don’t come out right or you stumble. I’ve found it helps to have some phrases thought out beforehand. So if I’m waiting in a queue for instance, I’ll think about what I want to say. Being tired makes everything worse, so I encourage you to get enough sleep. I’d also encourage you to reach out to your friends and ask for feedback on your speech - chances are it sounds way worse to you in your head. You’ve had to relearn how to talk and that’s hard, so don’t be so hard on yourself.