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AVM Survivors Network

Finding purpose

All, good morning! I’ve never really posted here before, but I need to reach out! My name is Mick. 43 years old, left without the use of 1/3 of my body from my illness. Flash forward 3 years; I’m stuck in a rut!
I’m dismissed because I can no longer speak clearly, marginalized because I disabled. I am tired of the platitudes. I’m on permanent and complete disability and the state revoked the driver’s license. I have no money, no job, no prospects; I’ve applied to 10-15 volunteer jobs with zero call backs.
I do volunteer with the Medicare 4 all crowd/bernie sanders, but even then I cant string together more than 2 hours of consecutive enjoyment and is maybe once a week.
I’m trying. But I can honestly say I’ve had far more misses than hits! When are we just living for everyone else?
OKAY, IM NOT SUICIDAL! That’s something else I get accused of being… My question is; How long must I search? And for what? I know that’s personable and none of you know me, but what worked for you? None of my pre injury hobbies are applicable, I’ve already tried meds and I workout 4 times a week (often because I’m just bored).

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Mick,

I’m not in the same, really difficult situation as you but I want to say “I hear you”. You do have the toughest deal and it sounds like you’re making as good a job of life as you can, so I want to say you’re doing great and not to feel down if what you can do is so much less than you used to be able to do. You’re doing as much as you can and that’s where we should value someone’s input.

I think you’ve got plenty to offer, even if it is to people in this community. There are some folk here who are in about as difficult a strait as you and you can take some encouragement from them as to how they approach what they can do v what they can’t do; and you can share with them how you get on.

One of the things I love about this community is our ability to reach round the world and support each other through the use of bare words. If you can write you can offer support to others and that adds to people’s lives.

I hope this helps and I hope others add their thoughts, too.

Very best wishes,

Richard

Thanks for pointing this out. I can really relate. I’m not suicidal but I won’t be sad to leave here either. I hear the frustrations in your writing and I feel them too. On the volunteer side, I do Boy Scouts. They’ll definitely take you and at least what ever you can contribute will be doing some good. Even if it just a Merit Badge Counselor for Special Needs Awareness. Work is your oyster, if you think about it. A close to minimum wage job that is only 20 hours a week keeps you under the SSDI radar and Grocery stores get a credit on their federal taxes to subsidize your pay. Basically, it costs them nothing to hire you as a greeter or running self check out like I do.

Your old life is over. And that really sucks to think about. But, your new life is just getting started. And I get out of bed just to see what I can make of it.

Your gym should be free from Silver Sneakers or the sort. Find one with a pool and a view.

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Mick,

Just this week I sent an e-mail to my counselor (we do a lot of e-mailing as well as face to face visits) about exactly the same thing. It is really hard to figure out where you can fit in, Even though my main “event” that pushed me to where I am was about 18 months ago, I’ve been fighting this thing for 41 years and the speaking clearly and the tremors were already messing with my job possibilities in 2014.

Our paths aren’t the same but they are definitely moving in the same direction.

A couple of thoughts from my journey:

  • I’m still grieving the loss of what I did and what I will almost certainly never do again. Don’t let any of the platitude people tell you when you should “get over it.” You don’t. You work through it.
  • Find someone who can be a good sounding board and can give you honest opinions on what you can do and can’t do or be. My therapist (he got a kick out of it when I told him that I talk about him on here and that when I do, I talk about "my Randy) has been a big help in coming to terms with the “I can’t do that” so I can’t be that struggle.
  • Think outside the box. Actually burn the box. Look at it more from the standpoint of “this I could do” and “this I could enjoy.” For me, if you looked at what I could do 5 years ago compared to now, writing is the only one that’s still an option - and even then I need to proofread more because I’m known to leave a out. (See what I did there?
    -Don’t underestimate the power of listening. I think I’ve said it before, but when we were at the Cincinnati Ronald McDonald House (my daughter has a serious but very well controlled heart condition) and one morning a guy came and asked if he could join us for breakfast. Sure, what the heck, we’re all in the same boat. I got to talking with him and it turns out that he doesn’t have a graduate of the Children’s Hospital but he knows what it is like to be in a strange place with no one you know. Every Tuesday morning, he stops and picks up the newspaper (gives him something to look busy with if there is no one to talk) and he comes down to the “house” and spends usually around 4 or 5 hours drinking coffee, talking to patients families, talking to volunteers, helping with anything that needs doing. He told me it was the highlight of his week, every week and occasionally his wife will schedule something for Tuesday mornings - he always makes her reschedule.

Is that an official volunteer position? I doubt it - but he looked at what he could do, what he enjoyed or thought he might enjoy and then just did it. I was talking with a friend about some of the writing plans that I have once Social Security is straightened out. I said to him, it’s really kind of freeing when you have an audience of one. (or maybe two if you count God and me).

I couldn’t do what the guy at Ronald’s House could. But I would look at what might fall in the “doable” category - even if it’s only for 2 hours once a week. Especially look at things that help someone else. To me, helping others has so much power.

Hang in there and keep in touch with this gang. They are good stuff.

TJ

P.S. As I said about my writing needing more proofreading, I just read it through again and found two more errors that weren’t intentional. But I’m doing it and frankly right now, I’ve got more time than pretty much anything else. :slight_smile:

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I like reading your stuff TJ

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Thank you everyone for the kind words
!

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We all love reading TJ’s stuff!

Seenie from ModSupport

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You’re going to make me blush.,.,

I will agree with what TJ said you never get over it, you just work through it; I’m trying to make the most of it but I still struggle with finding a purpose but at the end of the day I’m still above ground and I’m here for my wife and daughter and instead of having a good careeer that I enjoyed I’ve become a house husband doing the best I can so little victories is what I take these days…

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And I think that’s the best way to look at things now. I was trying to measure ‘now’ with ‘before’, never meeting my own expectations, then getting frustrated with myself. It was a never ending spiral. Now I’ve come to (semi) accept that I ain’t ever going to get back to ‘Before’ so now I’m ‘…doing the best I can…’, some day’s that’s fairly good, some days that’s not so good, but again, I’m with you Mike, those little victories are still a victory IMO

Merl from the Moderator Support Team

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Hello @Mick I was 43 when I had my massive stroke and then a few months later my AVM developed I say for bonus points. I too am on perm disability. Even though I am not a senior citizen I can relate and I joined my county’s Aging and Adult Commission. Each county has one - . Its a volunteer position but it also has to be appointed by your Supervisors usually. There are also Disability Commissions as well and other Commissions related - I am on one called New Beginnings Commissions that works on the numbers that roll up into the Aging - I worked in Fixed Income trading for over 20 years and prior to that I worked in Equities . I was also volunteering in Cat Shelters and help other local non profits. Volunteers jobs trust me are tough cause those places are run tight and they do need people and just dont have enough people to do the call backs etc. Its better to go there face to face and be a pest really. I have served on two no kill cat boards and learned a lot and offered a lot of my past skill set. We have lots to offer we may not be able to give 40 hours a week but we still have lots to offer! Also schools need tutors for after school programs , Also hospitals need volunteers ( I am at Stanford so much people think I work there and I do help people when I am there I tell my doctor I am unofficial volunteer) Hugs Angela

I have a lifelong deformity, which has worsened with age. No platitudes from me. I have hdeard them all. What helps me is music. Just a suggestion.I read up on the origination of the song. This might nelp others!

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Hi Mick!
I don’t know if this would be a spiritual fit for you or not, but my husband and I who are both physically challenged (disabled: don’t like this word! The “abled” seem to attach a negative connotation to this word = “unabled”!) me from AVMs; Jim from cerebral palsy, volunteer at our church. Many rescue missions, food pantries, etc. need help too. If you are looking for pay you might also try your local bureau of vocational rehabilitation. I know that through the bureau we both got hired at various jobs that were worth while until we simply could not work further due to additional health circumstances. The nice thing about volunteering at the church is that our pastor does not set deadlines. He is a patient man and very caring, encouraging, dedicated, and loyal. Hope this helps you as well. BTW - I have been left with only 1/2 of the use of my body and language has been something that if given time, people grow to understand as the grow in relating to us. :smiley::smiley::smiley:

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I hear you, my friend!!! After hemorrhaging during my craniotomy, my life ( as I knew it) completely changed. I have aphasia now. After first, it was absolutely awful. Today, I am better but not even close to where I used to be prior to the surgeries. I, too, went through a HUGE depression for quite awhile. I know how hard this is. Please keep going. I promise you that it will turn around. I know that you have started multiple volunteer jobs and that didn’t work out. Try again. :slight_smile: Think about what you are passionate about…what causes you would want to help with… I know that volunteering truly helped me immensely. I wish you the very best and try to keep your head up! You are a true warrior and survivor- know that.

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