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
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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.
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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
Hi I’m lambshop16 and am glad I found you. I have a TBI working with me but my ILST is not vaccinated so the fact that I am a caregiver for my parents when their aide goes home I could not let her into my home anymore…that being said no help grocery shopping or having some assurance when I go see a dr under stress. Sunday this pseudo bulbous thing hit me and all I did was cry alllll day! I couldn’t calm myself down. People don’t understand and it’s very frustrating. Thank you
Patti
Hey Patti,
That lack of understanding from others truly can be very overwhelming. In the past I’ve tried to educate others on the reality that we live with and I get these blank looks in response. I often relate it like “…they look at me as if I have a 3rd eye in the middle of my forehead…”
Some people (most) have no idea of the realities of living with a traumatic brain injury. As another member has stated ‘Brain injury: You don’t know it until you live it’ and it’s very true. For some people understanding this is near on impossible.
I’m in Australia and here it has been mandated that people in personal care MUST be vaccinated. I used to work in the disability sector prior to my own situation and we used to have yearly checks that all of our vaccinations were up to date and it’s my understanding that the COVID vaccine has been added to that list. We were working with some of the most immunocompromised people in our society. Some bugs that may have minimal impact on me could kill an immunocompromised individual. So, in my opinion, it makes sense for vaccines to be mandated for care workers.
I’m unsure how the systems work in the U.S. in regard to care workers nor how you access them, but, in saying that I have a link to the Brain Injury Association of America who maybe able to assist or at the very least should be able to direct you to such a service in your area. New York | Brain Injury Association of America (biausa.org)
I know, for myself, I can get easily overwhelmed and some days it doesn’t take much. At one point in my life it got really bad and I had to ask for help. Asking for help is NOT a bad thing, in fact, it’s a good thing. It means you have recognised that you need assistance. If you can recognise it, you can recognise the signs of it coming, so the next time you see those signs, you know what to do.
I find that I need time each day for me, alone. A bit of peace and quiet to process the day. If I leave it for a few days the stress of each of those days can build and build then hit me all at once. You call it “this pseudo bulbous thing”, mine’s more like a brick wall, speeding towards me at 100km an hour and when it hits… …Ohh what a mess. But I know the signs and the consequences of allowing it all to overtake me, so I ‘try’ to take preventative action before it becomes a crisis.
But, I have to agree, some people don’t understand. We know this because we live it too, so come talk to us.
Merl
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Thank you I may have to contact them. Thank you for the info. I would have thought that but she is one that refuses to even get a flu shot and that includes her children and rest of her family. I have late stage Lyme and TBI so this is good info.
Yes, we have people objecting to the vaccine here too. But if they work in a caring role then they have 2 choices, get vaccinated or lose your job. It’s a choice of black or white with no grey areas. These rules were set down right from the start, so there was no confusion. If a client caught covid from a worker, then the company could be sued for placing the client at risk. No company wants to be sued, so many of them have had to alter their policies to protect the company. You can bet their insurers don’t want to be covering the risks of an unvaccinated worker, so the insurers are enforcing vaccine mandates too, leaving the employers no choice.
We have had a bit of an issue with antivaxxers in Australia and it all came to a head a few years ago and the government painted them into a corner. Schooling is compulsory by law, but for the safety of everybody within the school environment all students MUST be vaccinated. So parents may object to vaccines, but no vax, no school. Some work places are the same ‘No jab, No job’
Merl
We’ll here in ny if you don’t get vaccinated they test you with rapid testing every week and some friends of mine just won’t get it. I bave to contact that org and see if they can help me with an TBI or an ILST or where to go from here. I’m doing things on my own and this is def not good:(
The rapid tests for support workers is not an option here as far as I’m aware. You are either vaccinated or you are not. If you are vaccinated you can work with vulnerable people and if you’re not vaxxed you can’t work in that role. Simple black and white. No greys. No if’s, no but’s and no maybe’s.
I used to work with clients with communicable diseases ie HIV, Hepatitis etc I had to have documentation for every shot/vaccine, date administered, type of vaccine etc and what training had been completed. I was working within these clients homes. If they or an authority requested proof of inoculation and/or training I had to be able to provide it. Black and white. No grey. I carried a diary with me everywhere, it was more like a bible with a zip up cover, to hold all the bits and documentation I might need including my vaccination card.
Look, you could keep going the way you have been until you are completely burnt out or you can put your hand up and say ‘Help’. I think you need to ask for help.
Merl
Yes tats what I’m asking for …help.