I’m 26 now and it’s hard not to think about all the life that has passed me by, my AVM ruptured a month after I turned 21. I lived a pretty full life before my hospitalization, but I haven’t really done much since. I can’t work yet. But I’m starting an in person college program hopefully this fall for Occupational Therapy as I’m lucky enough that I’ve healed this much. I read quite a bit, but I spend most my time playing video games, my favorite is the Nintendo Switch because it has quite a bit of games that I can play with my deficits.
You know it’s hard not to think about the time that I lost, as I see a lot of my peers with long-term girlfriends, careers, or even college degrees. I just feel like I’m way behind but I’m very optimistic that I will make a full recovery and get back on track. This journey will always stick with me and has changed a lot of aspects of my life.
You’ve got it pretty tough and I think not fitting the norm in male US society is the toughest, if I’m honest. What limitations do you still have?
I also believe that all motivation to get somewhere comes from within and often that goes for a long time but don’t write yourself off. There’s still a lot of life to have and to shape your way.
I say this because I watched my Dad struggle with what was essentially depression. He was the kind of guy who would do everything 110%, he’d work faster than anyone he knew, he’d do it better than anyone he knew and that was his thing. He worked hard. Over many years he followed this path until it overtook him and he basically crashed and burned. He actually got to the stage where he wasn’t functioning: he got completely manic about everything and couldn’t achieve anything. Naturally this wiped him out: everything he had been good at, the best at, he couldn’t do. He didn’t want to believe it and for years he resisted admitting that he couldn’t really function.
His recovery came from the acceptance that he needed help. If I’m honest, he got very, very low but it was that admission of defeat, that he couldn’t sort himself out but needed a bit of professional help that started his recovery, along with the support of his wife.
All of that was 20-30 years ago or more.
Did he make it through? Yes. He’s an old man now, in his eighties, his wife passed away and he’s on his own but actually he’s on top of all the normal things of life. Getting to that most difficult place and admitting defeat, getting help and slowly building back towards where he wanted to be has got him there.
It’s a completely different scenario from having the limitations that you have but I believe that the motivation to go and do something comes from within. That you’ve got yourself signed up for a college course is not the first step but one of your steps towards taking control again. It is your motivation to succeed that will get you there.
You may need some help and I think the lesson from my Dad is to accept some help. Don’t look upon that as unmanly or something but see it as something that anyone might need – to just have a leg up to get back on their horse. Once on the horse you’ll be as good as anyone.
Well said! I know I’m in for a battle but I just want to live a normal life again! For my limitations, I still have some fine motor skills on my right side of my body like that’s probably not a good way of explaining it but I have trouble with stuff like writing and typing. So college is gonna be hard, but I hope my professors understand my situation and offer to provide me with notes and stuff. I’ve come a long way! So I’m just thankful to still be healing, I used to not be able to walk straight or even use my right arm so I’m very optimistic! Thanks for sharing that Richard!
I’m very much one who likes to encourage and when I see people telling how they are getting on, I rely on a bit of inspiration as to what I might talk about that might help. Sometimes it’s going to rub the wrong way and I was worried that I might not help you, depending on how you read my story. If anyone ever finds one of my anecdotes doesn’t help, they should always just walk by it! If it helps, great! If it doesn’t help, then just leave it.
If your college is anything like my son’s, you’ll get notes from lectures. I’d definitely talk to them about your needs. I’m sure it will help for you to make some of your own notes but it will also help if you don’t have to keep up with writing the whole lot.
It sounds like you’re open to that kind of help, which is excellent. We chaps are often not good at asking for help, so that’s one bridge crossed.
Hey,
I just wanted to reach out and let you know your post really hit home for me. I had an AVM rupture at 24, and it completely flipped my life upside down. The physical recovery was tough — but honestly, the emotional and mental side of it was even more overwhelming. I remember having so many of the same thoughts you expressed — the grief, the frustration, the feeling of being stuck in a version of life I didn’t choose.
In the years since, I’ve gone through a lot of reflection, and I ended up writing a book called Instructions to Finding Peace in Pain. I wrote it from a very real and personal place — with the hope that it could be a source of comfort, clarity, and strength for others going through dark or difficult times.
I think you’ll really find it beneficial. It’s not preachy or sugar-coated — just something honest to walk with you through the pain and help make sense of it.
Here’s the link to check it out on Amazon: Instructions to Finding Peace in Pain
And if you know anyone else who might be going through something similar, I’d be really grateful if you could share the book with them too. I truly wrote it to help people feel less alone.
If you ever want to connect or just talk to someone who gets it, feel free to reach out.— I’d be glad to listen or support in any way I can.
Wishing you strength, healing, and ease. You’re not alone in this.
@jack_k
Good luck to you Jack, you’re on a rocky road.
However please pace your recovery and enjoy the good opportunities as they arrive rather than just going for the long term.
I’m over 30 years post AVM rupture and surgery but it’s been a hard journey and getting harder.
Hello, Jack,
Reading about your current situation brings back many of the feelings I experienced after the rupture of my AVM and neurosurgery. I was 39 yo and a critical care RN. My life flipped 180 degrees from being a self-supporting professional and Master’s student to being greatly dependent on assistance for income and recovery. The emotional portion of recovery was worse than the physical. It took quite some time for me to accept myself as I was and not to keep pushing to be “normal”. I worked hard to define myself by identifying what abilities remained and could be enhanced.
As for education, discuss your situation with an academic counselor. Define your goals. Accept any assistance the organization offers, as there are means to assist disabled students. I was surprised to find support among both academic and administrative staff.
Remember that although you may have been satisfied, or even overjoyed, with life as it was, there are other aspects of your life to discover and embrace. Things you may not have time for in the past…
Be patient with yourself. Pace yourself. And, open yourself to new possibilities.
