New Member hope?

Hello, I’m Bette, 63yo, and have been a TBI survivor since 2011. It seem tho between my accident and my age, lol, my memory has just gotten worse and worse. I have seen friends and even my husband treat me as an invalid, distancing themselves from me. I am hoping to find friends and understanding here. Thank you for accepting me

Hey Bette,
Welcome to Ben’s Friends
As if the injury itself isn’t bad enough, the isolation by others can really have a HUGE impact. I tried to maintain friendships, but unsuccessfully. Others seem to think that we have some sort of control over it all, well, don’t I wish. Some seem to have the idea that we recover and life goes on as normal, but this is far from the realities of it all. My symptoms fluctuate something terrible, trying to find a nice medium would be great, some sort of normal, but this is far from anything like normal and some people really have no idea.
We understand all of this because we live it too, so come talk to us.

Merl

1 Like

Thank you Merl! Appreciate your comments.

Bette, Welcome I do hope you find some answers to your questions here. I’m 64 I have had a Severe TBI since 2009 I wish I would be one to say it gets better, you know ever since my Brain Injury I have had to ask 100’s of times Art I the One with the Brain Injury as others perfectly intact seem so far away from realty. I had this Accident some how it took a Veil Off of me at the time of my Accident I was 53 and the very first time I saw the reality of people I know and indeed knowing what I know now I would have held a persons tear and responded back with acknowledgment of there feelings. My Daughter looks at me as if she’s scared before we use to be so close, I fully understand why they call this The Invisible Disease.
People I Meet know nothing about a Brain Injury and some talk to you like your Deaf & Dumb that is something we have to teach the world something about brain injury for me it has opened a whole new world. I live everyday for the moment, I know how vital it is everyone knows there seen.
Ann

Ann, thank you so much for your welcome and sharing of your feelings.

Bette

Ohhh and that is one of my pet HATES, even before my own situation went south. Back then I used to work with people with disabilities and this day we went to pay my client’s bills. The woman behind the counter could see my client had a disability, but by no means a profound disability and she raised her voice and sounded out EACH syl-la-ble. Due to her volume and the manner in which she was speaking everybody in the place stopped, pulling even more attention our way. I could see my client cringe, trying to vanish into his own shadow. I walked with my client out of the store heading to my vehicle. I told the client to continue to the vehicle as I’d left my diary in the store, I hadn’t.

I returned to the store and gave the woman a real piece of my mind, at volume. ‘Don’t you EVER speak to ANYBODY like that again. He has a disability, he’s not deaf’ informing her that a complaint would be made to head office. I made sure everybody in the store were well aware her conduct was less than appropriate. She certainly cringed because she knew she’d done wrong. I’m not even sure she was aware how condescending she actually was, as many aren’t aware, but she got the message loud and clear. My client will never forget his interaction with her on that day and not in a good way.

A little bit of respect costs nothing but can mean so much, because tomorrow you could walk out your front door and get hit by a bus, and as a result that could be you.

Merl

I’ve had people do that to me, even my own husband. It’s degrading and makes you feel unworthy. It’s very sad. Thank you for bringing it to the attention of that woman and the others hearing it in the store as well. God bless you.

Bette

Merl, I believe 50% of the people out there have very very little knowledge of the correct information about a disability. I learned a Valuable lesson yesterday I was shopping and one of the men who worked for them was talking out loud to know one. I went up to pay for my groceries and the Bag Boy was the same guy that was talking to himself, He talked to the cashier non-stop for 15-minutes just still going as I left.
I don’t know enough about my own disability never before the accident had triggers until now and just wanted to say Shut Up. Never had I felt like my anger was so out of control and me of course never said a word. When I got in the car with my brother I told him that this worker was pissing me off. He said well maybe hes got a disabilities, I had to look at myself in the mirror and I realized I’m now walking in his shoes to remember what I know, everyone you meet has problems, never Assume anything turn the situation around & say I don’t know this person without walking in there shoes and knowledge of the entire situation on both sides. There are so many lessons I have learned on my journey and see every lesson I better start learning it.

1 Like

Whoa, Amen. Thank you!

Hey Addspice,
This journey is a learning for everybody, and that’s me included. So long as we learn from it all, it isn’t a wasted journey.
As I’ve said to others previously, “Working in the disability field I honestly thought I knew all about it. I was wrong. What I knew was all of the theory, the reality is far more shocking”. It’s very easy for ‘Joe Public’ to pass judgement and assume, I know I have in the past, but I like to think I have a bit more understanding due to my former role. And a bit more empathy now due to my own situation.

I had a friend, one day he said to me “A toothache is the worst pain in the world” I looked at him incredulously and I told him “Give me a toothache anyday, everyday of the week verses a headache”.
Later I thought about it. If the worst pain he’d ever had, the worst experience of pain was a toothache, that’s as far as his pain reference could measure. Trying to comprehend something outside of our perception can be very difficult to near on impossible, so even trying to grasp another persons situation can be extremely difficult.

I used to teach people how to live independently in the community. We had an assessment we would complete before we started to gauge areas where assistance should be focused. We would get asked by a govt to assist a client to learn to cook and at face value it seems simple enough. But to cook you need ingredients, to get ingredients you need money, so you need to budget. You need a shopping list to work a budget out and to make a shopping list you need to plan a menu. So teaching someone ‘How to cook’ is at the end of the process. Now, this can seem all fairly straight forward for most of us…
…Now, let’s throw into the mix a disability (and every person’s disability is different). So rather than just taking the paperwork as being correct, we’d go through ALL of the processes with the client, identify which skills needed some refinement with the client and work on those skills. I quickly learnt don’t ever assume. Skills I thought they would never learn, they proved me wrong many times.

I was the teacher, but many of my clients taught me a hell of a lot more about adapting to what life throws at you. Years later and many of those skills I still use today. I will NEVER be as quick to pass judgement ever again.

Merl