I wish you didn't feel that way Jim. You couldn't control what happened to you. I am glad you were able to get what you needed quickly. Now it sounds like you need something full filling. Maybe somewhere to volunteer and help others when you feel up to it. Any hobbies? I wasn't hit on the outside as hard by this and I hope I stay as fortunate. But I find myself already feeling like now what do I do? I want to work but doing what? It is so different and my feeling like I could do anything days are over because my new truth is there are a lot of new things to consider. For now it's how to support my household until I figure it out.

I hope you are finding ways to enjoy your life. You deserve it. :)

I am in Australia and had trouble getting social security and I had to get back to work after spending three yrs away fom work. It's been a struggle over the last few years, I had to change job about 5 times! I hope that you will find a way to get SS soon, good luck.

Oh James, I am sorry it's been such a struggle for you. I hope you have, or are able to find a job that suits you and your needs soon.

Thank you Holly. It's been quite a journey, though I admit I am a bit head strong. I've been working at a university now in student support function which is nice. I feel that God has always been looking after me and provided me with opportunities at every turn. I am also getting better at doing things which is encouraging.

I turned 55 and was working as a paralegal for a state government (I had the AVM in 1959). Due to the AVM surgery and bleed, I was blind to the left in both eyes called homonymous hemianopia.) I could not do the job correctly anymore, and left on disability. I got Social Security Disability within 4 months even though it was 45 years after the AVM event, I believe Social Security based it on my vision and some cognitive problems. I guess when I was younger I could overcome some of it, but not as I got older. I never saw it coming - the difficulty with working and getting to work everyday. I have been on SSD for 6 years now.



Yes im sure it must be so difficult, so many options! Myelf, i was an electrician engineer when i started - i had to go back to square one. Good or bad, i had my bleeds whne i was a teenager, so i was supported from my parents.

And these days, its very hard work - as u may have seen from some other post, my typing can be dodgy sometimes - my aphasia can be tough. I wait, each day, for the dreaded phone call lol and i know i will mis communcate everyday at some stage. Each AVm person of course would have different problems - physical can be a major problem; but i would say there would be hope yet holly. As a designer, i only have a BTECH and HNC (no degree) - but i managed to get a job doing something i can enjoy.

Your text, sounds like u still have a high intelligence - why cant there be something out for u yet? One thing in the UK tho that can be reasonably beneficial, is that if u r disablled, u can get free courses. Can u not get that in the US?

I don't believe so. I currently have a large amount of student loans I will have to start payment on if I am not enrolled by February. Possibly I will qualify for a bit more financial aid based on my reduction in income. Even if I were still in perfect health jobs are scarce. I was so happy to have one back before June! It will all work out I am sure.

We decided immediately that our son Seth would not be returning to work since he couldn't walk or talk after his AVM rupture in Febr. We hired a lawyer who specializes in SSID. We filed all the paperwork, like 3 times, because they kept saying they hadn't received the reports from the institution or doctor. Which was a total lie, since we gathered it ourselves and made sure they got it...Seth was denied and just had a hearing in November...It's been a month and haven't heard a thing from them. More recently Seth has developed seizures and that has been included in his updates with SSI. It is a royal pain in the ___, but we won't give up!...Seth has worked since he was 16 and has paid into the system....btw we live in Illinois which is any one hears the news...IS Broke. So my best advice...get a lawyer, mail letters to all the creditors stating that you are awaiting a ruling from SSID(ur lawyer will provide you with the letter), and just keep on insisting that you deserve it...Shouldn't have to, but it is their job to deny, deny, deny and hope you'll just go away!


Hang in there. My husband needed a heart transplant when he was 37 and they denied him and had a hearing. He won at he hearing. He died of the heart disease 15 years ago, and he was only 45, I will be pulling for you.


You go guy! Us either, even if I have to camp on the doorstep of my "representatives", we will get Seth the help he deserves! :)

Hey Holly,
Seems like your post is getting a lot of traffic so I'll add my experience. I had my first bleed in September of 2009. Immediately after this I was placed on disability through the state of California for a year (A year is the max allowed through the state of CA). After it ran out I applied for SSDI in Sept 2010. I received my denial in December while I was in the hospital for another bleed actually. Prior to this bleed the gov had sent me to some joke of a doctor who when he examined me he had no idea what an AVM even was and asked me to describe it for him. Keep in mind the gov already had all of my medical information about my prior bleeds and SRS. I appealed in Jan 2011....I was sent for reconsideration and got a rep involved from my congressman's office....Did this help? Nope sure didn't. I received my second denial in October 2011. I now have an attorney and they're going to do what's called an ORD (On the record decision) because of the hundreds of pages of medical records I have provided. Like someone had mentioned in a prior response to you, this is the process where instead of making me wait for 2+ years for a hearing, my case will be reviewed by a judge/attorney prior to any hearing and I'll hopefully be able to receive a positive decision.... Hopefully....
During this time I have no idea where I'd be if it wasn't for my mother. I haven't received a penny for over a year and have not a dollar to my name. I didn't have a ton of bills but if I'd have had to pay rent it surely would've been eaten up and I'd have been homeless and living on the street. Currently, I'm also receiving food stamps so as to lessen the $$$ my mom has to spend..especially for me to eat. It's craziness what the system does to those of us who have legitimate cases but we have to keep up the fight to get what we deserve. It is definitely a tough process as I have no short term memory, I'm in pain all day every day and can't drive and actually am not allowed to live alone. It's a personal decision you definitely have to make for yourself and also discuss it with your family and if they're going to be behind you then by all means apply.... You've got a good group of people on here definitely willing to share their feelings and experiences. I wish you the best.

Wow Jessica! I am sorry they have you wrapped up in red tape. It's such a warped system. It seems in my state you can have dependency issues or depression and get approved but to have a condition like this you have to fight. I don't understand it. And to think it is OUR system and we can do little to fight as individuals. Most of us have paid into the system our whole adult lives and had no choice in this and yet we go through these struggles and fully focus on getting well.
I love your mom! That truly is what moms are, heroes. I am so glad you got a good one. As much as you may feel like a burden, as a mother I can say, there is nothing she wants more than to be there for you. I hope you get approved for benefits and get the relief you both deserve.
It is so helpful for me that so many like you have shared their experiences. I get both perspective and strength from each.
Stay strong! Sending love your way.



I love seeing you around this site. I appreciate your honesty, constant positive outlook and that I know you'd give any of us the shirt off your back. I really believe all of us were chosen for this. In some strange way I have decided we are blessed because we gain strength I can't imagine could be acquired from anything else. You really have made something good from your situation.

Lots of love and admiration,