We struggle so much and we all need that occasional good word; that boost of confidence that comes when someone acknowledges you.
Many times during the first two to three years after my brain injury I found myself stuck; unable to move.
I was paralyzed. The world seemed to be angry with me, punishing me for something I didn’t do. I was always butting my head up against it.
I knew I needed to get my head above water so I could breathe.
I needed somebody to give me a good word and boost my spirits. Just say something nice to help get rid of all the negativity.
My Solution?
Living at my parents house, I was feeling very lost and alone, full of despair. I knew I needed something to get me through these times; I just wasn’t sure what. Then one day, as we sat around the kitchen table, I instinctively reached out my parents with a simple solution; I asked them to tell me some things I was good at.
I just needed a little boost.
Many of you might be at this place right now; stuck in that dark tunnel with no light and no hope. You want so badly to feel good; to feel some of the promise you use to have, but how? You may not be as fortunate as I was to have your parents around to help.
A good word could very well turn the tide. A little support could go a long way to helping you move forward. That’s all it takes: a little support.
Well, you have me to support you.
Your Struggle
You work so hard and others don’t see it. Sometimes you work hard and even you, yourself, are unable to see any progress.
Other people, without even meaning to, tear you down and you feel deserted and alone.
I want to tell all you TBI survivors something you may not be lucky enough to have others say, and that you need to hear: you have done a great job. Whether you realize it or not, or whether you accept it or not, you need to know you have done and are doing a great job.
Sometimes, even when someone says it, it’s really hard for you to hear what’s being said because we feel less than human; we can’t do what we used to do, or we don’t feel worthy of praise, but this is something you need to acknowledge and understand because you deserve it.
No one can know the work you have put in and the mental anguish you have felt. No one can know the amount of work you feel is still in front of you. Some try though, and you respond by saying, “But I still can’t do this, or I’m so stupid now, or I still can’t remember things.”
Sometimes the bad stuff seems completely overwhelming, and you dwell on it. The bad stuff takes over, destroying your confidence and your hope, making you unable to accept praise when it is given.
You’ve got to put that aside and listen.
I know. Every day it’s the same stuff. It’s hard to see progress. It’s hard to see the positive. It’s hard to see your life making any sense and it’s hard to see a future. It’s hard to listen.
But we have to train ourselves to see it and to believe and accept.
You are Extraordinary
I am standing up for everyone of you. I am here to tell you that your struggle against great odds has not gone unnoticed. I want you to know that each of you TBI survivors out there are extraordinary. You need to know that. You need to find a way to acknowledge it, accept it and really feel it.
I know–it’s not easy and it’s complicated:
We think of reasons why we shouldn’t feel good. We think of all the things we still have to do or the things that we can’t do that we used to be able to do. But we all have to put that behind us. We need to change our focus.
We can’t always count on other people acknowledging that we’ve done a great job in coming back from a brain injury, but you can count on my support and my acknowledgment. I know how hard you have fought, and I know how hard you have struggled.
Find a way to build a well spring of confidence.
Start the process by acknowledging that you deserve it. Find a way to get past the negativity and be proud of what you are. Feel it in your heart.
You can count on my support.
Thanks for reading, Jeff
Jeff, your words ring true for me & I’m sure for many others. That feeling of sheer hopelessness & desperation is incredibly hard to cope with.
No-one understands, really. I was lucky to have a fiancé who was willing to learn alongside me & can spot trouble coming just by looking at me, even now, approaching 17 years on.
A seizure in 2015 meant I finally got a second MRI which showed not the ‘small bleed’ in right frontal lobe, but a diffuse axonal injury. And I was made to work for 15 years, suffering all the consequences; insomnia & depression, lack of menstrual cycle, colitis, worn teeth, appendicitis & finally the seizure.
But now I’m moving on & advocating for TBI; radio shows in a couple of weeks, TV show to be filmed in French on Wednesday & the FB group I created.
Thank you for all you do ??
Thank you so much for your kind words of acknowledgement and encouragement. I’m back in hospital / psychiatric clinic because I’m exhausted, fatigued and feel hopeless and defeated. I’m three years into my recovery and by any clinical measurement I’m doing well. But, it appears that every one else in my life is expecting me to return to who I was before my accident. I’ve tried and failed, tried and failed – now my marriage is in trouble, I’m losing my job and profession as I’m more of a liability now. There is no ‘ thanks for trying, we’re glad you made it, take it easy – you’ve come so far, we understand your TBI has changed you – how can we help you? This is why your article resonated with me. I don’t get any kind words, not once. I’ve gone from top of the pile to the bottom, from an annoying optimist to thinking ‘ what have I done to deserve this? Ive got a great care team – thank God – whoever God is. But, your words were powerful and gave me a boost, so let me return the sentiment. You are bloody amazing mate, you are making a difference in a very positive way with your blog and heart felt writing to us who have broken lives via our broken brains – keep it up please.
Thanks so much, Damian. I understand your struggles and hope you have an easier time of it moving forward.
Damian,
I found it so helpful to get my spouse to attend a few of the Psychiatrist appointments so that she got to hear from a professional what I am going through. Why I was in the Mental Ward on a 72 hour MH hold. That 72 hour hold in the Mental Ward was the best thing that has happened to me since the TBI, and it came 5 years post!
I still see a Psychiatrist. I pay for it out of pocket….but it is so good to have someone to talk about anything with and get some feedback and advice.
I wish you all the very best. And keep working at your recovery, tell your spouse daily about your struggles, successes and maybe a few of the pppfffttts from the day. I like to focus on the successes, ask for a little help on the struggles…and be OK with it if I get no responses. Remember, no one knows what its like to recover from a TBI…except those of us that are going though it. And almost everyone of us has different experiences!!
Thank you Jeff! The same right back at youu!
Jeff This is a great blog. YOu are so strong and have a super
attitude. This is definitely a roller coaster ride with good days and
bad days and we all need encouragement
Thank you for sharing and telling about yourself.
We need good words always.
Thanks Margie
I am incredibly lucky and still receive wages from my former employer.
This gives me time to dedicate my life “getting back to normality”.
I have a packed full diary of things to do and when I achieve them, I tick them off.
I am attempting to learn to play the acoustic guitar and am going to learn British Sign Language. So wish me luck!
Good Luck!!!
Thank you!!!I needed to hear that!!! ??
Well said Jeff….
I am so glad I found your page! Everything you write about is everything I am going through. Your writings give me hope that Everything will be okay despite all the struggles and set backs..
All the supports from other survivors, like you, Jeff, helps others enormously, I believe!
So thanks for your words.
Lisa A. Stuckel
I’ve had great success in overcoming the impairments of my TBI. But there are also times that I just can’t get started. Just lacking the ol “self confidence” to dive in and get started. But think I’m getting a little better.
But tell me, is it wrong to tell people I’m a Severe Traumatic Brain Injury Survivor? Is it wrong to talk about my struggles, successes and failures.
I seem to want to do that. But recognize from other readings that we TBI survivors seem to lack the “social awareness” or something like that…and can say too much. I never seem to know it until its too late. And that sux,
But post TBI I really seem to need that “attaboy” or “you’re doing great” much more than I used to. But seem to feel myself withdrawing and preferring to work alone. Yes, I’m retired now nearly six years and so I can do that. But I know its not good for me. My Dad is in a nursing home with a terrible case of dementia. Wouldn’t get his knees replaced and so slowly quit life to just sitting in his chair..and his brain died. I refuse to let that happen to me!!
I attended a Brain Injury Support Group for about three years, and finally quit as all the meetings were pity parties. I don’t need housing, financial support, a vehicle, a ride…just support on learning how to get back to success.
Here I am…writing way too much!!!
Stuart,
We all go through a lot of ups and downs, and we have to feel our way through situations, learning as we go. I don’t have any answers but am confident you can find what works best for you. We do all need support to help us we regain and maintain our confidence, and, as you have learned, a support group isn’t always the best place. It seems as though life after brain injuries constant search for things that work. As far as telling people, I guess it would all depend on your relationship with that person and how you communicate what’s on your mind. In some cases he can help me closer, well in others you might get the opposite effect. This is when you have to learn to trust your gut. Good luck
First off, I’m the spouse, not the survivor. That said, I can relate to this post because over our 49 years post TBI (you think yours was in the dark ages) we have both needed that pat on the head. But, we were also both so stressed that there were spells when neither of us was up to the challenge of giving each other the kind words that we both needed. Eventually, after I cracked up and we lived apart for a while, I could calm myself enough that I was less likely to escalate tensions. I made a determined effort to say kind things much more often, and everything began to improve. Truly, though, patting ourselves on the back is so necessary when we aren’t getting pats from others. I had to move past my awareness of my past unkindnesses and concentrate on moving forward.
My husband and I have been fortunate in that we have found ways to have fun together often enough that our bucket of goodwill has never been entirely depleted.
These day, I am struggling to stand up again.
Honestly I can stand, walk, and do almost everything.
I am okay, if I do not force me to do too much or I do not meet very frustrating situation.
My doctor had told me it would be helpful if I walk in the water.
From 26th of March, I had walked in the water about for 2 weeks.
I was doing pretty good, but something happen.
Last Sunday I was walking in the swimming pool of the apartment.
But loud music hurt my nerve,
and my friend asked to the staff of the office for turning down the music little bit quiet.
The staff talked something to the guy and came to me.
He said that I have to accommodate it next time with very high-handed manner and rudely..
I felt he was talking to me that I cannot come to the swimming pool.
Because I am a disabled woman because I have difficulties with the environments.
I cannot do something, but he asked me I have to accommodate what I cannot.
I have to accept their music.
I did not ask them turn off the music. I just asked them turn it down little bit quiet.
From that day I cannot go outside again.
I cannot go to the pool to do my therapy.
I am very sad and frustrating because I cannot do what I want to.
I want to go outside, walk, do therapy at the pool, meet people, and go back to work.
What can I do?
Maybe you should talk to the management of your building. It seems to me they should accommodate people with brain injuries much the way they would help people with physical disabilities. Hope that helps. Good luck.
Thanks Jeff, your support is what I needed so much. So much has changed since this all happened. You tell it the way it is! I just wish that others could understand & not critize us as I try so hard to get back to being as ‘normal as possible! I needed a boost & you have it to me! Val.
Thanks Jeff. You just made my day!
This is what I needed to read. Thanks for being honest with yourself and sharing this information with others.
Dear Jeff
My name is christian Salas. I am a clinical neuropsychologist from Chile and work with brain injury survivors helping them to “come to terms’ wuith the many changes brought by their injuries. I have followed your work for a while, since I feel it conveys beautifully the experience of many survivors. So I believe you speak for many, and more importantly, you put into words the thoughts that many survivors can[t put together. Your work then is quite helpful. It happens that with colleagues in chile we are putting together the brain injury week for the first time. For that purpose we are collecting material that can help generate awareness to the problem of how it is to live with a brain injury. In this sense we love your writings and would like to know whether we could use some of your columns and translate them so survivors and families from spanish speaking language can read them. Do you think this would be possible?
bets
christian
Christian, Thank you for your nice words. It would be an honor for you to use my work. I’m going to email you. Thanks again, Jeff
Hi Jeff,
Thank you for your words, they meant a lot to me. I had a TBI in 2000 in Switzerland, where I live. I am still fighting for it to be recognized, which is especially annoying because as you write, I want to be a new me & move forward with new goals.
I’m advocating for TBI with a Facebook group, filmed a short slot for Swiss TV & some radio programs. I’m also doing a short online BI course, hoping to try something more challenging later.
I’m pleased with the new me & happy with what I’ve gained from TBI. I like to think that I’m a more caring person and less critical of others. As you say, I am not interested in “fixing” myself.
The Swiss health department made me work for 15 years until I finally had a seizure; it’s 100% clear to me there is no fixing! After the seizure a second MRI was performed which showed DAI. I have no idea how I survived those years.
I have days occasionally when I dwell on what I’ve lost, but purely in terms of time; my 30s were full of breakdowns, depression & insomnia when I should have been having fun.
But I am optimistic about my future ?
This isn’t a comment, Jeff, as much as a vent, something I need to say to people who will understand. I’ve had 2 brain injuries, so far. The first was from an illness 29 years ago and it delivered a large wack to my brain stem but left me fairly cognitively well intact. I relearned walking first with a cane but as I’ve aged have gone to a walker, talking, doing up buttons – which I still avoid, just don’t have that tactile sensation! Regaining lost skills has become more of my past than my current life. I’ve been on a plateau for a looooong time, and then suddenly, from nowhere, returned an eye problem, and it went from problem, to Problem, to OMG PROBLEM in a couple of months.
I don’t have vision in that eye at this point. In fact, I had to have it sewn shut to prevent massive infection. What a kick in the ass, to have it reach forward 29 years and still rock my boat! Cost me my much loved job because I can’t see details well enough now. Sent me tumbling.
BUT survivors do so …. I passed my driving evaluation so I’m not stuck in the house all day. Ironically, I’ve become fascinated by art – painting and drawing and am consumed by taking classes and trying projects. I’ve not been interested in art before, not sure where the interest came from but I breathed into the spark and viola, a fire, a new passion was born. A new passion but in approaching it I can see how very much of the me I’ve always been is still there ~ there after 2 brain injuries and a whole variety of unrelated physical disabilities. It was part of the spark I blew into fire.
Cari,
Sounds like you’ve been through a lot, yet you are still living your life and discovering so much about yourself. Keep it up!!!
I needed to hear this so much. It is hard feeling and like people don’t understand. Everyone was in my corner in the beginning and now no one is. Learning how to love and cope with this is a battle. I don’t know how to get past the negative thought process but it is nice to hear I’m not alone in how I feel.
Great post, thank you Jeff.
We need that encouragement, no matter where we are in the journey.
Its true we hardly listen but it is just so confusing at times, we feel so lost and confused am I right?
I just pray daily God please give me strength and sanity because boy I really need those 2 things.