[SDFencer]

OK, short story, in the last 12 years I have had 2 surgeries for brain surgery, 5 strokes, 5 seizures, lumbar and cervical spine fusion. At the present time I am slowly but surely losing my ability to walk. I fall with alarming frequency. The last surgery was to help me move back to a cane and not forward to a chair. (I use a walker now.) Come join the pity party.
We can’t figure out the falling. I can be standing there and suddenly flop right over. No pain, no dizziness. I can be walking and my legs give out. I am so tired of falling.
I played Big 10 basketball and then I was on the US Wheelchair Fencing Team. I had to stop fencing when I had my back surgery. I coach basketball now and it tears me apart to watch them play. ( no, I can’t do chair basketball) I miss being active so darn much. I want to cry at a game. I’ve gradually become “that guy” who sits in a chair all day watching Netflix. I can’t volunteer because I can’t stand more than 30 seconds and I can’t use my hands for small tasks. (typing this takes forever.)
When does acceptance start? It has been 12 years. I keep starting to have darker and darker thoughts. But I’m hung up on the way to do it and how they’ll tell my beautiful grandchildren. I have to do it somewhere else so they don’t find/see me.
Telling me that there are people in worse shape than me doesn’t help. I know that and I have empathy for them. But this is Me.

Help

[BlueEggs]

Originally Posted by SDFencer

OK, short story, in the last 12 years I have had 2 surgeries for brain surgery, 5 strokes, 5 seizures, lumbar and cervical spine fusion. At the present time I am slowly but surely losing my ability to walk. I fall with alarming frequency. The last surgery was to help me move back to a cane and not forward to a chair. (I use a walker now.) Come join the pity party.
We can’t figure out the falling. I can be standing there and suddenly flop right over. No pain, no dizziness. I can be walking and my legs give out. I am so tired of falling.
I played Big 10 basketball and then I was on the US Wheelchair Fencing Team. I had to stop fencing when I had my back surgery. I coach basketball now and it tears me apart to watch them play. ( no, I can’t do chair basketball) I miss being active so darn much. I want to cry at a game. I’ve gradually become “that guy” who sits in a chair all day watching Netflix. I can’t volunteer because I can’t stand more than 30 seconds and I can’t use my hands for small tasks. (typing this takes forever.)
When does acceptance start? It has been 12 years. I keep starting to have darker and darker thoughts. But I’m hung up on the way to do it and how they’ll tell my beautiful grandchildren. I have to do it somewhere else so they don’t find/see me.
Telling me that there are people in worse shape than me doesn’t help. I know that and I have empathy for them. But this is Me.

Help

First off, I am so sorry for what you are going through. Do you have someone you can tell about this? It is so important to find emotional support through this. I know that many of us on this forum have been there and are here for you. Don’t give up! Put any emotional energy you may have in finding a support system. Do you go to church or do you have any chronic illness/TBI groups nearby? Reach out to them and let them know. You are worth fighting for.

I thought my life was over. I didn’t know how I could go forward in life with things how they were...couldn’t even imagine, much less believe that I could enjoy life again. However, here I am, having some happy days along with sad ones, and the happy ones help me wait out the sad ones. So my conviction that my life wasn’t over was 100% false. What I’m saying is that you do not KNOW that things will always be this way. You may feel it, but you can’t know it. Realizing this gives a sliver of room for motivation to stick around and wait and see. As you wait, find a way to distract yourself from the waiting. Is there someone you know that could use encouragement? Service of some kind? What’s one thing that could bring you a little bit of joy? Most of all, find support. We are all here for you! DON’T GIVE UP.

[SDFencer]

That's the issue. The brain injury group I was going to meets at inconvenient times for me. I was seeing a neuropsychologist (because of the nature of my injury that's what they want me to see.) Honestly, they need someone who has had a brain injury so they actually understand what's happening. Anyway, I stopped seeing her because I saw no improvement. I don't want any more medication. It's easier to ask me what I don't take.

I do find some enjoyment from my grandchildren (12 yo twin boys, 7 yo girl.) They both are such incredibly gifted athletes. I'm told not to think of what I could do but what I do now. It's hard when I watch one of their events and the only thing I'm good at now is falling over.

I feel like my wife and I are just roommates. She hasn't touched me "that way" in 10 years. I'm going nuts. If I could get better (at least stand for more than 30 seconds)

I was General Counsel and Board Secretary when this started and now everyone treats me like a drooling idiot.

[Mark in Idaho]

SDFencer,

Acceptance starts when you decide it starts. Your time with a Neuro Psych hopefully included an assessment to chart your functional level.

That functional level is your starting point. It is not a negative point that must be balanced to zero so you can start. It is who you are.

Occupational therapy and physical therapy can help your body work better because the motor control networks can rewire and reinvigorate.

The brain does not have the same capability for recovery of memory and cognitive issues. We need to learn new ways to do the memory and cognitive functions.

What types of things did the neuro psych do with you? What meds did you try?

[davOD]

I read this weeks ago, and I find the words are difficult for me to write.

Acceptance for me was a long slow road, Id say that when you stop getting angry when you forget something, that acceptance.

When you openly in public can explain your problems easily without shame, tears, or crying, thats acceptance..

Now we all will find that place at some point...When, Im not sure, acceptance is like a brain injury, we all have them, and no two are alike...

I wish everyone here to find the inner peace it takes to not beat yourself up, to try and love yourself....To take the time out for yourself, forgive yourself....

I am not saying its easy, but if you never try you will never find it...

I find speaking far more easier than typing, I hope you can find your acceptance!