Moving Forward

It has been almost 3 years since my AVM ruptured and then was subsequently removed.
socially I have a pretty good life but the deficits caused by the rupture and strokes have left me unable to work or drive; I’m happy to be alive and be somewhat functional in life but I’m always looking for more. I had a good job, a good career and I wasn’t ready to be effectively retired at this point in my life. people tell me to volunteer but without being able to drive and I live in an area that doesn’t have good public transportation I’m limited on what I can do as far as volunteering, work or hobbies. just wondering what some of you are doing to lead a fulfilling life after your former life has been taken away… I should be over this by now as it’s been a few years but every now and then I get hung up on how do I move forward what’s next?
I’m just looking for some feedback from people who had a hard time overcoming some of their deficits on how they fill in the gaps to feel fulfilled in life when everyone around me has a career and I basically became a house husband.

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Hey Mike – is there a hobby you enjoy you can turn into a career of sorts? I don’t have AVM, I have chronic pain from migraines and nerve damage in my face (trigeminal nueralgia). I eventually gave up my career in advertising over the various issues these conditions were causing. The reduction in stress (even good stress from a job I loved) made a huge difference in my life but it also created a career gap. I do work fulltime in a job unrelated to my career, but it’s a j-o-b to pay the bills, it’s not fulfilling or anything like that.

To fill that gap as a copywriter I turned my attention to writing short fiction and spent time I would have spent on marketing projects for clients writing my own work and getting it published. I also have a hobby of dollhouses and minatures and have learned how to make minature foods and have been selling those. None of these things would support me in terms of my regular life, the income isn’t all that great, but, it fills times and it make me productive in a different way that’s fulfiling. And I can do it on my own schedule as I see fit and feel fit enough to do it.

azurelle

Mike,

I’m only 11 weeks out rather than 3 years, but my struggle is very similar. For those who don’t remember - I lost most of the hearing in one ear, my left vocal cord is paralyzed, half of my tongue doesn’t work and half of my left lung doesn’t work. So, I can’t talk clearly, I can’t hear well, I can’t do physical labor and, oh, did I mention the noise sensitivity?

I have applied for social security disability and if that comes through, I’m going to be a writer - I am still going to do it even if I can find a job that I can do. Writing is a great outlet for my feelings and my thoughts about being in this position.

Advice my counselor gave me about how to deal with this all…

  1. Don’t hesitate to grieve over what you’ve lost - but don’t let yourself grieve all the time. Give yourself time to - but. Then also move on from it - and then come back to it. I was back in the grief last night. Today it’s only the headaches and the hearing that are bothering me.
  2. Talk about it - normalize it - don’t be afraid to let people know what’s going on. I have a pair of “filtered earplugs” that are supposed to help with noise sensitivity - I ordered them in red and black swirl colored - so they are obvious - so we’ll see how that works.
  3. Throw the box away. Don’t think outside the box, throw it away. Imagine a new life, imagine what you can and would enjoy doing and then do it. For me, that’s writing.

Don’t know if that helps at all, but that’s where I’m at. If I can provide any additional input, let me know.

Hang tough, this is a tough road we walk.

Tom

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thank you! I guess I am having a little pity party as I feel my life is stuck and I see former co-workers advancing in their careers and I feel like that could be me. I will get over it but it is tough getting out of this rut when I have these physical and mental limitations…step by step I guess…

I had myself a good old fashioned pity party last night as I was awake two hours later than everyone else due to the noise in my head keeping me awake.

Don’t ever apologize for having one - but don’t let yourself stay there. “Today I’m going to give myself the right to be sad. Tomorrow i’m Going to have a new day. “

Keep in touch.

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Hey mike, no pitty party, we’re all in the same boat and I appreciate the post, I feel the same and struggle with this daily, I hate to admitt I don’t so much feel like I’m living as much as exciting, it’s a hollow feeling but we can only do what we can do, your not alone and I’m very thankful for this site, we are brain surgery survivors and there’s just no getting around it, I find staying busy helps me not think about it so much, exercise really helps also but that’s a fine line, don’t push to hard, I tend to sleep a lot, a lot !! but I always feel better so I try to just go with it, like I said we can only do what we can do, try to stay positive and take care,

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I think that’s the normal thing to do. A pity party every now and again is ok. Just don’t get stuck there. I bet you could volunteer at nursing homes and they’d come pick you up. I think that would be something wonderful to do. Visit people that never get visitors.
Just trying to help, Lisa

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Mike, I’ve never met you but have read many of your posts on here, and in my estimation your known as a down to earth, common sense guy. Given what you’ve been through I think your feelings are perfectly normal. I’m fortunate, I was able to get back to work but am sitting here now completely exhausted. My new normal, its 7:30. I agree with Lisa, don’t get stuck but like you say, hard to get out of a rut. Just knowing your contribution on here, your approach, I know you’ll sort it out. Recognizing a rut is probably the biggest impediment.

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Hi Mike -

Despair is necessary at times for all of us – each has a story to share and there is empowerment for others who read them. I am a former oncology nurse diagnosed with a dural AVM with fistula basically in the cerebellum. Talk about scary. All the inspiration I have gained from cancer patients in my career has served me well dealing with my “new normal”. Strength that I never knew I had has surfaced from taking care of cancer patients. Unfortunately, I lost vision in my left eye after my 2nd embolization. It was not expected. This occurred 1/29/18 so it is fresh and I am challenged each day learning to cope.
We all have our limitations and struggles but know that baby steps forward are healthy – search your soul for what might help in some way and do it! As survivors, it helps to focus on what still can be…mourn the loss(es) when necessary but know that we, too, are now inspirations to others. Keep sharing everyone!

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Hey Cathy,
I couldn’t agree more with many of your statements. Having worked in the social services sector for more than 20 yrs, primarily with people with disabilities, I have taken a lot of inspiration and lessons from my former clients. On the days when I get a bit of the ‘poor me’s’ I think of my former clients and in comparison, to be blatantly honest I have very little to complain about. Many of them have been battling longer and harder than I have. I do acknowledge what I have lost or am no longer able to do, but still things could be way worse. I believe that first hand knowledge has made the process a little easier to manage and accept.

Merl from Moderator Support

I appreciate everyone’s input and it does make me realize I still have a decent quality of life and there are other AVM’ers that have it much worse off than I do.
I still have a decent social life but it was just kind of of a kick in the gut to see a co-worker get promoted to the VP position I had hope to aspire to; happy for her, just made me realize I was getting left behind in life a little bit but I still have a good life and I just need to change my perspective and realize what positive things in my life I do have.
I guess our road to recovery lasts a lifetime and it has some bumps in it along the way. Thank you all!

Let me tell you a story that happened in 10 minutes back 4 years ago. My family and I were staying at the Ronald McDonald House by Cinncinati Children’s Hospital because my now 16 year old has a significant heart defect. It is being managed by meds now - which is good because if it wasn’t, she’d be on the heart transplant list. So that’s why we were there.

We’re sitting down eating breakfast (by the way, always donate your change to the Ronald McDonald house when you are at McDonalds - awesome places) and a gentleman pulls up a chair and asks if he could join us for a bit. He had a cup of coffee and looked like he was upper 60’s. We got to talking and found out that he was a volunteer and came every Tuesday and Thursday morning to drink coffee and talk to the families who were there to see how they were doing, if they needed help, if they didn’t know where to go, just to be a friendly face. After about 10 minutes, he said, “well, I better go, more people to talk to, but if you need anything, let me or Vicki at the front desk know.”

A simple thing that made a huge difference - we were 7 hours from home, knew no one but our daughter’s doctor. But now we knew him too.

Why do I tell this? Because there are things that are actually a lot more important than we realize. Find somewhere to do that, or something like that - even if it doesn’t give you income, it will give you something to feel good about.

Tom

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A good idea and also the one that Lisa s mentioned about just visiting at a nursing home and being a friendly ear to people who need somebody to talk to. it will give me a little bit more social life and feel like I’m giving back. it’s not about the money; it’s just wanting to feel involved.

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Oh wow Tom, this is a massive part of why I am here.
Many moons ago my way of dealing with an awful reality was to crawl inside a bottle, drown it alcohol so I didn’t have to look at it. Avoidism. It lead my down some awful paths, places I wouldn’t wish on anybody. At the time it was an unconscious self destruct mode. I went from grog to pills to powders. NASTY. Eventually I woke up from this and decided that instead of using my past and where I’d been as a negative, turn it around and use it as a positive. I did a bit of study and got myself a qualification and started helping people as a job. I worked in a youth centre. I could see young blokes doing the same things I’d done and I could say to them “Ahhh you can continue doing that, but this is where it can lead…” They had clean cut good doers telling them this but they often didn’t listen, where I wasn’t no clean cut and my info didn’t come from a book. It came from first hand experience and some would listen and respect that. I volunteered with that youth group for 8yrs running a youth accommodation program, rewarding beyond belief and beyond $$$$ value. Through the youth group I met people with disabilities and started paid employment with an organisation teaching people with disabilities independent living skills, or the things that most people take for granted ie cooking, cleaning, household management etc. But little did I know just how much those clients would teach me about life with a disability. Back then, I didn’t really think much of it but now, with my health being what it is, they taught me HEAPS. And for that I’ll be forever thankful.
And now, I can no longer work in ‘gainful employment’. But it costs me nothing to share that knowledge with others here on these boards and that is a reward in itself.

Our conditions can wipe us out, but we have all been places that people just starting their journey have no idea of, just by calming their fears, knowing they are not alone in their battles is worth more dollars than we can count.

Merl from Moderator Support

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Mike,

All this sounds like great advice to me. The other thing I’d say is if you can’t get out to places to offer support to people, maybe there’s a way to offer support by phone or online. I would think that many organisations have telephone support things operated by people from home these days. Or, online activities. You could moderate one of the Ben’s Friends communities, as an obvious example – not necessarily this one… think outside the box a bit. You’re a great inspiration and help to people here. I know you’ve cheered me along the way. As someone said, you might not find an immediate way to earn a living but you can sure contribute to society.

Do you have a hobby or passion for something, maybe a bit niche, that you could start a bit of an online business with? Again, more of a hobby to start with but maybe something that you could operate from home rather than having to get to work in a specific place? Maybe it could grow into an income.

…just ideas.

Try not to see getting to work as the limitation. The 21st century means that’s a limitation we can discard, sometimes.

Very best wishes,

Richard

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WOW !! Merl great post, thank you,

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After my strokes during brain surgeries in 1990 at 29 years old, I was paralyzed, blinded, could not walk, talk etc. I lost EVERYTHING, as well, (big career, new car, apartment, memory, personality, sense of direction etc.) BUT, year by year by year I got almost everything back, BUT in different ways. So I said I had a FAB 1st Life, than after the medical garbage, I call then my 2nd Life! I had to start over at everything, but at least I had the opportunity to start over, again! I hope for you more TIME can give you more Blessing to recover, hope. I feel the best way that I coped with what happened to me. SEARCH and FOCUS on any/all good POSITIVES in this new life you have, as well!!!
I hoped I helped you a tad!!!
Lisa A. Stuckel

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One more thing. 3 years is actually a short time in recovery years, so keep pushing along. Fight, fight, go, go, and win, win some more! NEVER GIVE UP!! In my situation, my neurosurgeon gave me at least 12 years to recover, but after 12 years, I still saw more improvements. I feel I hope I will always recover FOREVER. ‘THINKS POSITIVE!!!’

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yes i get hung up on avm…its tough to move forward. ive accomplished a lot and developed no problems after avm was removed.

recently i had anxiety attack and had a bunch of tests on brain. i was younger when i had avm removed at 16, so i never really thought about it. i’ve been thinking about avm for the past month and questioning the decisions made to removal the avm which i wasn’t a part of, my dad made the decision.

playing monday morning quarterback isn’t going to change what was done, its just been hard to get over those thoughts and move forward

i had large avm in left frontal lobe

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Thank you BoxBarge… 3 years seems like forever! :slight_smile:
I usually stay positive but it helps to hear that you seen small changes through 12 years.
I know it is a lifetime battle but your story gives me some hope that I may see a bit more of my old self in years to come!

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