After 11 years, I'd like to share my story here

Welcome & Help New Member Introductions
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Hi everyone, this is my first time on this platform after my avm rupture in 2015. Well, I did chance upon this website back then, but I actively avoided it. I guess I never really got to process what happened as I was 17 when I had my rupture, stroke, and craniectomy. So here I am, a decade or more later

I was asymptomatic all my life and my avm manifested in a temporoparietal lobe rupture one day. I had an emergency craniectomy and my avm excised. It was traumatic and looking back I don’t know how I managed to survive it all. After my hemmorhage I live with left homonymous hemianopia, pins and needles in my left leg, and minor weakness in my left hand. Nobody can tell by looking at me that I am partially blind, or had a brain surgery.

I guess I didn’t realize (or maybe didn’t want to accept) how much that had on me growing up from my late teens into my 20s. I know I’m tremendously lucky to have survived a fatal brain injury but to be brutally honest, at 17, I hated how it changed my life and put me on a different path from my peers and what I had envisioned. After what happened, I mostly kept to myself. Part of it was psychological - I was somewhat ashamed, and I didn’t know how to face my friends and people that I knew. It didn’t help that I was also on keppra daily, which really messed up my mood and personality. Another part of it was losing my vision, and being afraid to be out in public. I got off keppra eventually, and fortunately my focal seizures have been infrequent and mild that I didn’t have to go back on them. I had focal seizures occasionally for about 4 years, and I’ve been seizure free for about 5 years.

For most of my life after that, I lived trying to hide my vision impairment and my scars. It was somewhat my coping mechanism, a way of moving on. When I lost my vision, I had one session of occupational therapy and that was it. My OT said yeah, just make sure you’re scanning and you’ll be fine. But I was walking into poles, tripping over things and crossing roads in fear at the beginning. I never learnt good ways to cope, but somehow adapted to my vision loss overtime. I got through college and my job with none of my friends and coworkers knowing I was partially blind. I used to think, if I’m coping with my condition fine, then perhaps it’s not that bad, and people don’t need to know.

A decade later, I’m only just realizing that coping well does not equate to things being easy. I only came to this realization when I started my PhD program where the environment was more demanding than I had been used to. I realized how intensely I was compensating for my vision impairment in social and academic settings. In my classes I’d see how my peers were reading off their screens easily, while I was struggling to find the right sections. We’d go out for dinners, and I’d be consciously aware of my surroundings in order to “piece together” my environment.

I guess I just wanted to say that there is no shame in what we’re going through, and that we should recognise our struggles and difficulties. Being “lucky” for having survived a life threatening incident doesn’t downplay the difficulty of surviving afterwards. I am thankful to be alive, but I now choose to acknowledge the difficulties that I continue to face. It took me a long time to accept it and open up to people, but I can say that it’s been a relief letting people around me know of what I’m going through.

p.s. I’m still anxious being out in public, especially in crowds and navigating traffic. I got myself a white cane (because I saw on reddit how great it would be for someone with hemianopia) and I’m not gonna lie, it was such a relief using it – I could finally walk with less fear, and I can enjoy my surroundings without being afraid of walking into people. I have been hesitant about using it on campus, though - that’s still a hurdle I’m trying to get past.

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I think if you use your cane on campus, you’ll blow your friends’ minds! I worked with a guy who had macular degeneration. He used to use a big screen with the biggest letters on it: literally reading everything one letter at a time: and then he’d go for a walk round the office or into town with no cane, no assistance, no glasses on. I couldn’t work out what could possibly be going on! So being me, I asked him, and it made perfect sense.

You’ll provoke questions from your friends but it will just blow their minds that you’ve been masking it all this time.

Yours is a great story! I am sure most people of a similar age with an AVM rupture go through similar things. Being a teenager is a difficult time of life anyway, never mind falling behind your friends in what you can do. But it is fantastic to learn how you’ve fought to get back to being who you want to be. The Keppra often doesn’t help psychologically, so yeah, lots of others go through the same struggles you’ve been through.

Amazing story of great encouragement! :clap:t3::clap:t3::clap:t3::clap:t3::clap:t3:

It’s great to have you on board! You are an AVM survivor!

Richard

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Welcome to our community. From the 17 year old to PHd student now, your journey starting at a difficult age is amazing. We have several care givers of survivors ion the mid teen age group, I think your retrospective and experience will be valuable to them. Particularly how you processed it all, and the impacts while being able to objectively view it now.

Thanks so much for sharing and being here with us. What is your area of study, if you doin’t mind my asking. Take Care, John.

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Thank you for your kind words, John! I am doing Economics, moved across half the world for it so that has been new and exciting :slight_smile: it’s great to finally feel independent for the first time in my life

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Thank you for sharing, I’m grateful to have come across this. My hemianopsia started 16 years ago, when I was 21. I went through denial, went about my life without grieving or doing any sort of inventory of all the different things that became challenging that were routine before. In hindsight I believe I didn’t want to feel the emotional pain that was hanging over me. The last year and a half I’ve finally been able to disclose it to others without feeling ashamed or embarrassed. I m currently working at what I believe will be my forever job, and am looking for the right time/way to disclose to my coworkers, whom I’m not very close with personally. This disability has been far and away the most alienating thing I’ve ever experienced, and I’m sick of keeping it to myself. I’m grateful for this platform, and hope that me, you, and everyone else on here can find the peace we all deserve.

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Welcome to our community! I can empathize with navigating a world where people don’t know I’m “disabled.” Most of my classmates and teachers throughout school knew about my brain injury because I was ten years old when I had a brain bleed at school. But years later, everyone treated me like I was fine because they didn’t see how much I was struggling internally. When I had my second dose of Gamma radiation at age 16, I proudly wore bandages on my forehead over the scars just to remind everyone that there was so much more going on in my head that they didn’t see.

It sounds like you are doing well, and I’m happy to chat with you here on avmsurvivors.org :grinning_face_with_smiling_eyes:

From, Julia

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thank you for sharing your experience! It was so nice to read and have someone relate to my struggles. I have to say, so far, people have generally responded very positively when I shared my sight loss with them. They offered me help and things like that (which I honestly needed). It makes the journey less lonely, in some ways. I feel like there is certainly more good than bad in sharing it.

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I can relate to so much of what you are saying! I had my brain hemorrhage (from a brain AVM) when I was 16, and although my vision was affected, the biggest damage is to my short-term memory and spatial awareness. I have managed to get an education at university and have worked at same job for 20 years, but my brain hemorrhage constantly reminds me. As exemple, when I’m having dinner with friends at a restaurant and go to the toilet, I sometimes can’t find my way back to the table where I was just sitting!

The best thing would have been to tell all my friends and colleagues about my situation, but at the same time I don’t want my disability to be such a big part of my life and affect everything I do. Instead, I try to find ways to handle different situations. For example, if I’m going to meet someone in a place I’ve never been before, I try to get there well before the agreed time to get to know the surroundings. But the best thing would have been to be open about it from the very beginning, but for some reason there’s still a certain shame. May I ask you, have you had the opportunity to get a driver’s license?

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I get that! I struggle between the two: not wanting to be defined by my disability, and concurrently not wanting to work so hard putting on a front that i’m “fine”. For a long time the former was more important to me, so I tried all I could to pass off as a fully sighted person.

I agree that there is still some shame, even though there shouldn’t be. I’m having a hard time moving beyond that when disclosing my disability to others as well. But I’m positive it’d get easier with time. I just don’t want to live a lie to myself anymore.

Re driving: no, i never had a license and never plan to. I doubt it’s safe for me to drive so I’d rather live with the inconvenience than potentially hurting others.

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Thank you so much for sharing all this. I wish you all well

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I don’t drive either, and I never plan to. There are just too many components to driving, and I can’t wrap my mind around all of them. It would be dangerous not only for me but for anyone else on the road too.

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Hello catsy, it’s interesting reading your story and the first half is as if you describe my daughter’s situation. She had a rupture, embolisations and a craniotomy in the past 15 months. Whilst she made an amazing recovery she is still in the acute brain healing phase but is in denial. She is her own enemy. She wants to be normal like her peers so hides all her deficits as much as she can and will at times cause damage or setbacks. But she is 16… enough said.

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I once relate to that so much.. All I longed for at that age was to live my previous life. I found no other way to move on than to hide everything. I hope that after some time has gone by and your daughter has moved somewhat past it, that she will be able to accept who she is and her deficits. I wish I had done that sooner, to accept my injury and how it has changed me. That way I did not have to put myself through unnecessary suffering for those years of my life.

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You know, you just reminded me of a moment when I could see myself separate from my brain injury. All my life, I wanted to be a published author, and in 2021 I began that journey (after my second brain bleed but before my third Gamma Knife surgery). I published a short story in the book “Chicken Soup for the Teenage Soul 25th Anniversary Edition.” The story I wrote was about my high school crush; it was even chosen as the opening piece for the book.

Now, I’m somewhat well-known in my small town as “the kid who passed out at school and was taken to the hospital for brain surgery,” even 19 years later. So I’ve never really had much choice about hiding my disability. When I did interviews about the book, some news reporters who knew about my AVM previously asked why I hadn’t written a story about my brain injury instead. I told them, “My brain bleed isn’t the only thing that has ever happened to me.”

As much as it alters a lot of my life and I’m very open about it with everyone, I try to find a balance between my AVM journey and the rest of my life. I hope you can find your own balance too. :folded_hands:

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thank you for sharing. that’s an amazing journey, you are the first author I’ve ever met! You’re right that we’re defined by so much more than a brain injury. I hope to be as open about it as you are someday :slight_smile:

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