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AVM Survivors Network

When? When do you cross that line?

When?

When do you cross that line?

No, not that line, but the line between acceptance and determination.

Acceptance - this is not what I wanted

Acceptance - I can’t do what I wanted to do.

Determination - I’m not going to let it stop me. I’m going to beat this thing and do what I wanted to before “this” happened.

Determination - I have my plans and they just got harder, but I’ll be ))&()((^ if I’m going to let some unusual blood vessel thing slow me down.

Acceptance - my life just took a sharp turn in a direction that is different than I wanted.

Determination - I am going to make the best of it and adjust to fit the new reality of what I have and what has changed.

Determination - there are still ways to be a difference and make a difference in this world, just maybe not the same difference that you thought you were going to be.

Determination and Acceptance

Acceptance and Determination

Does one have to come before the other?

I don’t know….

What do you think?

TJ

2 Likes

I definitely love the way you think!! I am currently on the determination stage like as Im going to allow a little brain damage stop me pfft!! Honestly for me it was when I reached the and now what?? Like Ive done the therapy, the botox, the muscle relaxers, the splinting, the electrical stimulation, repetitions so now what?! Just keep going all day everyday. Don’t let it discourage you!!

TJ,

I don’t think you have to do the acceptance thing. Its optional.

Determination is, in my view, the main ingredient for getting on. Sure, life isn’t going to be the same but, as I’ve said to others, irrespective of having extra difficulties in life, we can still make a mark, we can still try to make the world a better place because we happened by.

I’m reminded of the Archbishop of Canterbury’s special envoy in the 1980s, Terry Waite, who was taken captive even as he was trying to negotiate the freedom of hostages in the middle east. He was kept prisoner, not allowed even to see the face of his captors, for nearly 5 years, the first four years in solitary confinement. It must have been easier to give up, and probably crumble mentally, than to maintain a determination to get through.

Maybe, after some years of showing ourselves that we have achieved a few things, we accept that life has changed and we’ve found a new level to operate on. Maybe there is acceptance there that the new level is what we can do to enjoy life, to be part of a family, and to set our kids up to become good people. Maybe there is acceptance there, that it is no longer a fight but we’ve found a level that we can work with. But maybe that is tolerance rather than the defeat that we read into acceptance.

I acknowledge that my experience of difficulty is not on the scale of others. I’ve no significant limitations, so it is easy for me to be optimistic here. I hope it is a useful optimism but I understand it is not the slightest bit easy.

Lots of love,

Richard

OK, so I’ve been sitting here thinkin how to answer this… …thinking, thinking…
Right, so my ‘OPINION’. Determination and Acceptance are going to be varied for everybody. I have pushed against acceptance to my own detriment, but have this awful guilt with acceptance. The reality for me is that my body will tell me when enough is enough. I have proven to myself that yes I can push my determination BUT the results in pain and symptoms is very hard to quantify in regard to the results of the task. So I can be determined but have to accept that there will be consequences for that. I have to accept my own limitations.

Merl from the Moderator Support Team

What a great post. I’m sure it’s something we all struggle with. I often feel like acceptance is defeat.
I was doing ok at the beginning of all this. Just put your head down and work hard at recovery. The work hard part is something I’m used to, and I would venture to say I’m pretty good at. I’m very determined and “giving up” was not really a part of my vocabulary.
I’m almost two years post craniotomy and it’s becoming clear that some acceptance will be part of all this. I think the key is that it takes both; some acceptance that things have changed and I have some limitations, but determination to find a path forward. A life that I can enjoy and find fulfilling. Maybe things are different now but I am determined to make it my best possible life with what I’ve got going for me.

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I think there’s always a combination of the two at a certain point you have to accept that you have deficits but you have to be determined to try to overcome them; I guess in the back of your head you know what your limitations are and you keep trying to push against them you can’t allow yourself to get depressed because at the end of the day the brain doesn’t regenerate itself much but with effort you can create some neuroplasticity in your brain but I think for the most part my neurologist says that pretty much stops after 2 to 3 years and then you have to deal with what you got.
I know there are other people on here that improved for many years after their rupture so I guess it depends on the location and the extent of the damage… I keep trying but I have to accept that I’m not going to drive or work again I just try to to make the best life I can with what I have… I’m sure I’ll never be willing to give up, but there has to be some acceptance or you’re going to spend your life with the what ifs and not living in the moment to the best of my ability.

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I truly believe that one has to “grieve” for whatever has been lost BEFORE one can move on to acceptance!!!
That has been my journey which I am still working on.

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You definitely can’t get stuck in denial. And grieving is important for some people, I agree. Good thought.

'T,

'Thanks for your kind words. The way that I look at it, everyone, at some day and some time, reaches the point where they realize that things probably aren’t going to get better.

Then you are at a fork in the road…

Turn right and you walk down a path that is clearly marked and it might be a bit more rocky and hilly than anticipated. But you can navigate it and get where you want.

Turn left and you step down a path that is very soon absorbed by a bunch of thorn bushes and mud and poison ivy.

We all face that fork, for some it’s earlier than others.

TJ

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Does it have to be one or the other? Can we not balance the 2 together. My husband was left a quadriplegic after spinal dural fistula surgery went horribly wrong. Its just over 4 years now. We have come to accept the limitations being a quad has set for us each day as it comes. Nothing more. We still do rehab every single day in the hope of something more in the future. We get up everyday and accept this is what I have today but remain determined to push boundaries. It has meant that he was able to return to work, do further studies, we recently took our first cruise since life changed and we are about to go on a first camping trip. Finding new ways to camp has been tricky. Recently my husband was told that the AVM they operated on that led to this is back, bigger and worse than before and brought along with it 3 more. His prognosis isn’t great, but both acceptance and determination keep us moving forward every day.

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Hey Cancrd
I can only give you +1, when I want to give +100.
“I often feel like acceptance is defeat.” I couldn’t agree more, initially I had the same approach ‘This damn thing ain’t gonna beat ME’ and I pushed myself to achieve my goals, and I did, but at a great cost. It was actually my wife who put a stop to it all, she could see the impact my ‘pushing’ was having. I was driving myself further and further into the ground. I didn’t want to accept ‘this’. Who would? But after a rather deep discussion I had to agree with her (reluctantly) that it wasn’t due to a lack of motivation on my behalf, which the medicos liked to identify as the primary contributing factor, but rather my physical abilities have altered. Accepting that I once could, but now can’t… …ohh that was a struggle (and some days still is). The reality of it all is right there in front of me. I can ignore it, but at a cost.

Now, don’t get me wrong here, I haven’t put up the white flag of surrender but rather have had to learn to accept my new limitations. That’s not to say that I’ve given up, I still push those boundaries on occasions, but I have to also accept the consequences of doing so. It can be a REAL fine line and some days one hell of a battle. My mind can say “YES, let’s do it” but my body simply can’t. Getting that balance right ain’t easy as my limits seem to vary from day to day. If I had a fixed point, a fixed limit, I could regulate more easily, but for me I simply never can tell.

I think that when I can, I do and I’m pleased when I succeed, but I also have to acknowledge and accept that I do have limitations.

Merl from the Moderator Support Team

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I’m mentally in a better spot now that I accepted that my kid’s brain damage is not going to go away. Instead of fighting an unwinnable battle, I’ve accepted reality, and am determined (see what I did there?) to help him live the best life he can, with the full realization that it won’t be without serious limitations of experience and opportunity.

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Richard,

You give us a lot to think about. Thanks. I think there are a couple of ways to look at acceptance. Acceptance can mean, "I give up, there is no way I am ever going to ___________ and this sucks. It’s a way of essentially acknowledging your limitations and not being satisfied with the outcome.

There’s another way to look at it - and that’s the way I was thinking about it when I wrote it, was more in the sense a knowledge of who you are. If you had met me 10 years ago and asked me, “So, TJ, what do you do for a living?” “I’m a banker.” I was good at it and until the market crashed, I enjoyed it. You could say I accepted my role as a banker. If you asked me now, so what do you do? What would I say? “I’m currently a free lance writer working on a number of different projects.”

Totally different, but I’ve accepted it. And I’ve accepted it knowing that my new “role” in life is a lot different than it was. And I know that I’m in this changed role because of my AVM and that because of the limitations of the AVM I’m not able to it full time.

So, I accept my role and my changed role in my family, my church, my “career” but at the same time I am determined to push the things I can in the way that I can so that at the end of the day, the end of the week, the end of the month, I’ve made a difference. It’s a different difference than what I made when working for the orphanage, it is…

The point is, everyone can make a difference in their own “circle” of people. We’ve all been dealt a blow that makes what we were doing, very difficult if not impossible. So we try to walk the line of not giving up but not settling for a smaller status quo than we can.

tips his hat toward Richard

TJ

I agree. It is just difficult when we read upon the “acceptance” word that it isn’t accepting defeat. I always want to be positive: I think it is my nature (though there is definitely evidence on this forum of me being rather gloomy, too).

Raises hat back towards Michigan

Richard

Dear Un…

Grief is a huge part of it and a huge part of what I’ve been working on with my counselor (aka “my Randy”). At first, it was grief over having to go through the process of the surgery, the “somewhat recovery” and all of that. My mind has essentially blocked out the first 6 months after the surgery. I remember a few snapshots of it - my wife asking one more time as she walked out the door to her annual retreat with other adoptive moms of children with struggles- “You’re sure it will be okay with me gone for 6 days?” To which my now high school senior rolled her eyes in true drama queen style. “Mom, I’ve got this, I’ll take good care of Dad.” And I remember almost the entire weekend - actually week - when my Dad died, the memorial service and all of that. The rest, at least for now, I believe God blocked those memories for a reason.

In regards to grief and acceptance, while there are some people who don’t believe so, my Randy and I have spent a lot of time working on grief. If you ever want to read some good thoughts about grief, go to John Pavlovitz’ site at https://johnpavlovitz.com/2016/09/13/things-ive-learned-since-my-father-died/ I like reading what John has to say because he doesn’t beat around the proverbial bush and because I don’t always agree with him (actually more and more I don’t) and that challenges my thinking.

He has written a good bit about his journey through grief and the death of his father. But you’re right, you can grieve the loss of a person, but you can also grieve the loss of a dream. My 18-year-old has a heart condition. Even though she is comparable in size and height to the US Gymnastics Team, she will never get to find out how good she might have become - because doing that could kill her. Think about how many different ways we try to fit in with the “cool” kids (I know, I’m dating myself) and then take at least half of them away - that’s my daughter’s grief.

As part of moving through this, my Randy and I decided to work up a list of the “things” that I’ve lost through this and then we can decide how and when and how much grieving energy is appropriate. Oh and that only gets decided by you and your inner circle.

Ramble is over, thanks for being here and being a part of this conversation. It is a lot of fun watching the doors open and the light bulbs go on - in my own head and on the digital paper of others.

Love to you all,

TJ

Richard,

You are right about the use of that word, more often than not, it assumes defeat. But I think that’s one of the challenges that the collective “we” also face. We need to communicate to ourselves, to our family and friends and to “others” around us that while we have accepted what happened to our physical well being, it hasn’t impacted who I really am and I am someone who is going to find out how I can make a difference in my new reality. Maybe because of, maybe in spite of, but either way, we are going to be change makers.

And that turns acceptance into a direction that I can accept.

TJ

was going to tip his hat back to Richard, but it’s too cold over here! Average high temperature is supposed to be around 52 degrees Farenheit, ours today is predicted to be 35 degrees.

DB - tell us about your son. I was first diagnosed with this AVM thing back in 1978 when I was 13. I skated through the first 4 major surgeries with very minor impact. My mom talks frequently (too frequently if you ask me, but hey, she’s mom.) about how scary it was for them. Sometimes I feel like waving and saying, “Uh, hey, wait a minute, you weren’t the one having a bunch of metal coils and super glue put in his head.”

Fighting an unwinnable battle - a good description of it.

TJ

I think I’m just stubborn. I’ve had 3 embolizations for DAVF. Two went well, one didn’t. But I haven’t had a bleed or any sort of brain damage, but I haven’t been living normally, my usual athletic, active self. So, after the initial period of trauma recovery, which is prudent, I push until I recover or I die. Both are acceptable. The middle ground isn’t. So I guess I don’t know how to answer your question. I accept that this happened, and there are no guarantees in life, and it affects me. But, I’m not going to let me stop doing the things I used to do or enjoy. I’ve been biking about 60 miles per week. I hope to return to mountain biking next spring perhaps. Maybe it’s mostly determination for me, or just stubborness?

Merl,

You say it very well. Often, we have the knowledge of our limitations but we also have some choices in whether we follow them. I know that if I go to our church on Sunday mornings, I will have a worse than normal headache on Sunday afternoons, but it’s worth it to me. Know your limitations, accept your limitations and then make conscious decisions about whether to stay inside your limitations or push the boundaries, even if you know you’ll have to pay the price.

TJ

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TJ…for me the “career” part is my biggest mental hurdle; I worked in Finance and I was good at it and enjoyed it. I was moving on up and about to fulfill some career goals when my AVM ruptured. I know defining one self by their career is short sighted but I cring when people ask " so what do you do?"
it is what it is but my ego hasn’t fully recovered from how I used to define my worth to my family and the world.

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