TBI S-O-S! Restoring a Sense-Of-Self after Brain Injury and Concussion
Have something to say about TBI issues and recovery?
Why not write a guest post for this blog? I would be great to add more voices here, and many of you have great things to say. Simply write your post in the Comments field below. If it is a “good fit”, I will then copy it from there and publish it as a main post.
I can’t make any guarantees, but give it a try. If it is not a good fit, I will tell you why and you always have another chance to rewrite it, so it does fit.
For those of you who are working on your organizational thinking skills, this can be a valuable way to refine and develop your abilities, so by all means, give it your best shot and share what you’ve got. I have found blogging to be an excellent way to improve my thinking and organizational abilities, and it might do the same for you.
I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot.
I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life.
It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.
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36 thoughts on “Have something to say about TBI issues and recovery?”
Thank you very much for the opportunity. I will have to save this e-mail. As, I’m sure you noted, I’ve got some things to say and would really like to say them. I’ll start writing! Thanks again for the opportunity!!
You’re very welcome. Looking forward to hearing what you have to offer!
On December 31st at 4 a.m., I celebrated 37 years of living with a brain injury. Life back to what we call “reality” has been filled with many obstacles and barriers. Some of the obstacles were placed there by me along the way as I learned – mostly through trial and error – about how I would survive over the last 35 years. Most of the barriers I deal with everyday are other people’s attitudes, prejudices and ignorance about brain injury and disability.
Living with my brain injury has given me new ways to look and deal with old issues and concerns. Many of the lessons I have learned over the last 36 years has made me a better person and as the saying goes; “what doesn’t kill you makes you stronger”.
My new life with a brain injury has given me the opportunity to meet some really incredible people with disabilities who are changing the world as we know it. Most “temporally able bodied” people don’t concern themselves about the issues people with disabilities are faced with until they become disabled – it’s a part of human nature. It’s also called hindsight instead of – for thought.
Most people don’t concern themselves about disability because most of us grew up in an environment that didn’t include people with physical disabilities in wheelchairs, brain injuries or developmental disabilities, because “those” people were often segregated in “special education” and we didn’t have any contact with “them” except to be the brunt of our jokes and ridicule.
It’s not hard to hear many of these same remarks and attitudes today – MR, retard, gimp, crip, handicapped, invalid – the list goes on.
I read once that what separates “us” human beings from the rest of the other animals on our planet is our innate ability to nurture and take care of the sick and elderly amongst us. It seems to me that assisting the most vulnerable people in our society to become active participants in their communities is an honorable thing to do.
My brain injury has given me a new life and the means to help make this world a better place to live for everyone. When I help to educate business people about disability and the need to build ramps so that people in wheelchairs can enter their office building it makes it easier for everyone to enter the building and spend money.
When I talk to a business person about hiring someone with a brain injury because it would help their business – studies have shown that people with disabilities are more productive and often are better employees than their temporally able bodied counter parts This makes my community better for everyone because it creates the situation where people on Social Security can become – tax makers instead of tax takers.
Because of my brain injury I am part of the solution and not the problem. It is honorable to help others learn ways to help themselves. It is honorable to be part of making the world a better place to live. It is honorable to make people’s lives easier and help them become productive members of their communities and take pride in myself and what I have accomplished.
Innuendo is invisible.
Innuendo is a whisper that steals your life, purpose and meaning without your consent.
Innuendo is fear-based and subtle – it controls our lives without us knowing it.
Innuendo stifles growth, responsibility, accountability, opportunity and our integrity.
Innuendo is the illusion everyone sees – but us.
Innuendo is contagious condescension and compliance without any regrets.
Innuendo works in the shadows to rain on our parade.
Innuendo is a single minded one-way discussion without compromise or change.
Innuendo separates, divides and alienates us from each other.
Innuendo is the story everyone tells – but us.
Innuendo breeds contempt and complicates finding enough.
Innuendo creates obstacles to achieving balance and harmony in our lives.
Innuendo is in collusion with denial.
Innuendo thrives on deceit to reinforce the negative.
Innuendo is the rumor everyone hears – but us.
Innuendo eliminates potential thru stigma and stereotype.
Innuendo manipulates truth and has a language all its own.
Innuendo is a cancer in our soul.
Innuendo never forgets.
Why I Hate The Invisible!
37 years ago today, I was recovering at my parent’s home in Oakridge, Oregon after I ran head first into the side of a parked car while riding Pat Moore’s snowmobile by Summit Lake, Oregon, at 4 a.m., on December 31, 1976. My friends who were there saved my life and said I was going full speed when I hit the car and was catapulted from the snowmobile to the side of Bob Brewers Ford Pinto.
On impact, I broke my left jaw below my chin and rammed my right jawbone through my ear canal, separated my skull completely (cap fracture), shattered most of my teeth and fractured a rib. In the hospital the doctors couldn’t set my jaw for two days because of brain swelling.
My hospital records show that I was in a Posey Jacket and wrist restraints all the time I was in the hospital. One day when I was in the bathroom I ranked out my catheter and a few days later were sent home with my parents because I started to get loose (3 times in 6 days). On my last day in the hospital I was found urinating in a planter in the hallway.
For my own safety and the liability of the hospital, I was sent home with my family who were told if they couldn’t handle me then put me in a nursing home. Luckily my family spared me the fate that awaits many young people who sustain these types of injuries: long term confinement to the nursing home, long term rehabilitation facility or state institution – unless they have good insurance, but when that runs out and they become “poor”, many will be forced to have the government pick up the tab. This starts by applying for Social Security Income (SSI).
After people go on SSI, they will become eligible for Medicaid, which will pay for long-term care in a nursing home or institution, if Medicaid home and community-based services aren’t available to them in their state. These services are critical if the person with a disability wants to go back home and try to get on with their lives.
This new life also comes with having to survive on $498.00 a month Social Security benefits to pay for shelter, food, utilities and whatever else they can afford. When they are lucky enough to have a long work history they will go on Social Security Disability Income and make more, maybe $600 to $900 a month. What kind of life can you afford on this income?
Oregon was one of the first states in the U.S. to develop Medicaid home and community-based services. This was all after my injury, and if home and community-based services would have been available, I might not have had to steal food and do other things that would have put me in jail or prison if I’d been caught. It’s humiliating to have to steal food to survive.
Humiliation is invisible: that’s why I hate the invisible!
Every night when I would go to bed and close my eyes and try to sleep I would see –
pictures of people, images and objects floating by as I lay there with my eyes closed. They were like negatives of pictures just floating by. Faces of people looking at me, pictures of people setting or pictures of several people setting or standing, all kinds of scenes and images floating by as I tried to sleep. When I would finally get to sleep I wouldn’t dream. In the morning when I awoke it was like I didn’t sleep at all.
These pictures floated by for about five years, and it took another five years before when I closed my eyes – the face of the man with a beard and long hair looking at me on the other side of my eyelids went away.
Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end.
Before my accident I was a professional baseball player and everyone’s friend. After my injury, when I would see the same people in the community – they would go the other way.
The struggle and turmoil caused by brain injury is invisible: that’s why I hate the invisible!
It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like – now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.
It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do that day. Now, at night when I sleep I can dream again. It took me 25 years before this was possible.
To look at me now, 33 years later, you would never guess that I have had such a difficult time. I have faced many of society’s barriers, most of these attitudinal. Attitudes are invisible and are fueled by ignorance and fear to create invisible lines of prejudice and discrimination. Attitudes are invisible and breakdown trust, hope and our own well-being.
Attitudes divide us, separate us and control us: that’s why I hate the invisible!
Handicapped gets its origins from an old European phrase, “cap in hand” when people with disabilities had to beg to survive. Why is it that people with disabilities are forced into begging the Congress and Senate every year not to cut Medicaid, food stamps and other programs they depend on to survive? Politicians say they care and are full of promises to help. What they say and what they do are two different things: that’s why I hate the invisible!
Invalid and invalid are spelled the same, but have different meanings. These words perpetuate the stigmas and stereotypes people with disabilities must wear.
Stigmas and stereotypes are invisible: that’s why I hate the invisible!
People with disabilities are often referred to as “invisible” because we don’t have the means to be heard. We don’t have the money to pay a lobbyist to hang out at the capital. They say: “we need your input” but when we offer it – our input is disregarded all in the name of “health and safety”.
Paternalism is invisible: that’s why I hate the invisible!
Away we go, trying to rebuild our shattered lives in a society that does not equip us to deal with the prejudice and discrimination we will face because of our disabilities. When we fall short of our personal expectations we fall victim to a paternalistic system that tries to fix our every move and keep us safe and not allow us to learn from our mistakes just like everyone else.
Last week, when I was job developing with a 48-year-old man who has a brain injury and a long and productive work history, and I ask the manager, if they were hiring. She has worked with our agency before so I consider her to be a lot more educated about employing people with disabilities than most in Gallup.
As I ask her about hiring Robert, she announced to me in a loud voice as she stood by the cash register, that she doesn’t have any opening right now but, “I have worked with people like that before” looking straight at Robert as if he was invisible.
Didn’t she see his shoulders slump when she uttered those words? Didn’t she see how he looked at her after she said what she said? Doesn’t she understand that words can cut deeply just like a knife and cause unseen pain that reinforces the stigmas and stereotypes we must overcome if we are truly going to become equal members of our community?
Many of my friends use wheelchairs to get around because of accidents, injuries or illness. When we go shopping in stores or go out to eat at restaurants something that usually happens is the clerk or server will ask “me” what “they” want? Sometimes they speak louder when they ask them what they want.
I guess because they can’t walk that means they can’t hear either?
How often do we hear someone call someone or something “retarded” without regard to what they are saying? This phrase is despicable and degrading to people born with mental retardation and yet we hear the “retarded” phrase just about everyday. There is a very good chance that you use this word as part of your own descriptive vocabulary.
When people with brain injuries and advocates try to educate people in our society about how this word should never be used because it hurts peoples feelings and is degrading we are faced with indifference.
Indifference is invisible: that’s why I hate the invisible!
People with brain injuries want to live just like everyone else. We don’t like to be made fun of or talked down to. Honor, embrace and value our experience and knowledge we have gained.
If you hear someone call someone “Retard” – “Crazy” or other degrading names – speak up and educate them about what they are saying. If you see someone making fun of someone who has a brain injury or retarded – speak up and tell them not to do be so ignorant!
Don’t be afraid to speak up and be heard, because nothing gets done when you say nothing and become invisible!
Thank you for your contribution Ken! I have posted it, just now. I have added your name at the end – I hope that is okay. If you wish to write anonymously, or use a “pen name”, please let me know and I’ll make the change.
Another great post – I’ve scheduled it to publish late today / tomorrow morning. Thanks very much for sharing!
I think you are amazing with what you write, I love reading it. Everything you say is exactly how I feel. But I have always wondered, are you a professional writer, do you publish your writings? You should go to schools, and educate the kids. Thank you, Sara Hagany
Thanks Sara, I am not a professional writer. I was, in the past, but I found it to be very restricting with what I could say and how I could say it. So, I have this blog. I write anonymously, because I have a big, wide life full of people who would not respond well if they knew about my brain injury issues. I have tried to discuss the things I write about here with people close to me, and without exception, none of them have been able to deal with it. I have lost friends because of being open about my TBI issues.
So, I make up for it here, where I can say whatever I want, however I want, and nobody is going to shun me or kick me out of my job because of it.
Feel free to share what you find here with anyone you feel could benefit.
Have a great day
I’ve always loved reading detective novels, well except during the time that I couldn’t, read that is. I’m getting back into reading these juicy suspense novels that I used to love so much. The last detective series I can remember reading was Encyclopedia Brown, I was a child of the eighties, just made the cut-off, no bell-bottoms or bowl cuts in my baby pictures! So I’m 33 and happy to say I think I’ve solved my own mystery. So many clues, but so much muck to get out of.
Playing soccer since I was six years old was something my family used to brag about, yes they would say, she started at six playing intramural soccer and worked her way up to travel, inter-county select and state team tryouts. They never mentioned girl’s high school soccer because I basically well, cursed out the coach.
High school is supposed to be a funky time, and it was for me, possibly because I abandoned deodorant, but I digress. My mood changes were so evident that everyone saw them, I think, but no one really knew what to do or say. I began using drugs and alcohol to mask the pain, anger, sadness, loneliness that I felt.
Jump ten years into the future after dropping out of college, suicide attempts, MRI’s, thousands spent on psychiatric treatments for schizophrenia, panic disorder, ADHD, depression, Bipolar, ACL surgery, TMJ surgery, pelvic floor dysfunction, interstitial cystitis, and possibly an EEG diagnosis showing simple partial epilepsy, I suspect compound partial epilepsy but again I digress.
Confirmation of temporal lobe seizures was the final clue for me, for me it’s my nail, it’s my trophy, yes finally I’ve solved my case, years of head balls and being the “most aggressive” female soccer player, those poor parents on the sidelines had no idea what they were cheering for.
This whole time, twenty years, this invisible injury, was a mystery to me. Is it my duty to convince my loved ones of it, no, but I still try even when they do believe me, even when they know. It seems every morning I have to convince myself, just to allow myself that pardon, the compassion, and motivation to get better.
No one can ever compare TBI’s, nor should they. Sometimes TBI’s are extremely evident, other times there is just a trail of invisible clues that something is not right within a person’s soul. I am of the belief that the public needs to stop categorizing people into mental and physical conditions because I believe that under every mental condition there lies a hidden physical malfunction of the human body.
Sometimes I just need to forgive myself, forgive my brain for the havoc, and move on. Thank you for giving me the opportunity to do this.
Absolutely awesome writing!! To take that journey, to push on for all that time!!
But your next to the last paragraph intrigues me and is one of my struggles. How on earth do we educate the public? We can’t get the “public” to realize you can’t text and drive. We can’t get the “public” to recognize they are responsible for their lives!! Yet understand what TBI survivors and what we struggle with? That’s a challenge!!!
So true – where and how do people find motivation… to do anything? And how do we motivate in ways that help everyone, not just self-interested individuals?
Hi-I love this blog, thank you for this. I look forward to reading more! I am one year out from my injury, and my story through that year is in blog posts below. I think it’s so important to educate people about this!!
Thanks for sharing – I will check out your blog.
I have had 6 head injuries. I am a teenage girl, this should not happen to me, to anyone really. Two one my concussions have been mTBIs. I play volleyball, I love my friends, and yes I take selfies; but I am not like other teenagers. I am normal in the way that I go to school, but I was ahead of my grade by two years, and since my injuries, I am average. I get so stressed about being average that I just don’t know what to do or say and then I start crying. I have read all of the other comments and they fit me so well. My hardest thing to cope with is not being able to play volleyball anymore. I got my 6th head injury right before I joined the usa volleyball team. I practiced for eight hours a day, I had nothing but volleyball and my grades. I lost all of that with my injuries. My last mTBI caused amnesia for about three months after. It was not normal though, because I had my full memory for 2 weeks, and then everything was gone except for my family and one of my best friends. It is weird because I hardly see her and yet she was the only person outside of my immediate family that I recognized. My friends started telling everyone I was faking, and I just wanted to die. I was depressed, volleyball was my life and I no longer had that anymore. I felt like I had no purpose some days, but some days were great. I didn’t even care about the headaches as I had dealt with them for so long before. What hurt/hurts the most are the comments about my memory loss, and the jokes that were funny for a week maybe but now it hurts. I am the type of person who just has to be nice to everyone, and my friends would call me sweetheart, being nice and helping people was my thing. I had never been made fun of before or had jokes made, at me but all of a sudden I did. (So please never do that to anyone) and how everyone treated me. I’m not foreign, I’m still me, just not to me. But to everyone else I was the same person. If I wasn’t having a joke cracked at me, I was getting such sympathetic looks, like I would die any day. I couldn’t take another person saying, “I’m so sorry,” “How’s the brain?” or “Just hang in there, and watch the head.” or the worst…”You need a helmet.” i’m friends with a lot of guys who play sports, and I was actually given 4 helmets. I know that everyone was trying to be nice but it didn’t feel that way to me, and I feel awful for saying that but it’s true.
I don’t even know how to describe how I feel about it all now. I am still dealing with it and am forced to see many different doctors because of it, but honestly… I’m turning 16 tomorrow, I just want to be normal again.
Hi – sorry to hear about the tough time you have/been having. People can be pretty cruel, even without knowing or meaning it. Losing the things you love the most is the hardest, and unfortunately that`s what often happens with TBI. It just sucks. For me, the thing has been to find other things that keep me engaged and interested — first, so I don`t dwell on all that I have lost, and second, because that is how improve to the point of finding satisfaction in my `replacement` activities.
I am sorry to hear about all your losses. We just have to see what we can find in its place.
Best of luck and hang in there – it gets better!
Finding myself in the in the passenger seat and a van in the drivers seat instead of me the driver, on the way to a job interview and leaving the emergency room with a swollen purple head and a mother that was suppose to watch me to make sure I made it through the night, but wouldn’t even come in and talk to the doctor, let alone come over, a friend checked on me instead…then I would awaken in the mornings to open my eyes with the room spinning, holding the wall to be able to walk. TBI happened about 25 years ago. Today, at times, I fall at work, when I forget to take extra care at vulnerable times. I get injured again from my falls and can’t afford the healthcare. I also didn’t talk like I used to but it got better and after 20 years the excruciating headaches almost stopped. But I am a survivor that does their best to keep going no matter what. Then living in a bad neighborhood, with bad police and bad courts has me diagnosed with PTSD after being targeted by people who have destroyed their brains with drugs, alcohol and no consequences. (My neighbor was arrested for molesting a nine year old in a library, I had pornography painted all over my house, left in my mailbox, in my car, my property destroyed for years and the police, the courts do nothing, nothing, leaving children and future victims at risk, they are worse than the criminals.) And this introduces my argument; there is a point to this story. So I was hit in the head by a van and I fought everyday to survive another day, no choice, I had a kid depending on me, no help from anywhere, some get better cards, but real understanding, they didn’t know what I faced, I call it civilized courtesy. Resonance, mirroring happens when someone really understands anothers situation and people aren’t biochemically made to see each other in all situations; nothing personal, just a limit in our human evolution, “the winners effect”. So to begin with our wiring is faulty. The benefit of TBI is that it teaches you awareness, goal orientation and how to work with a “broken brain”. As far as broken brains go, my neighbors and so many others I see abuse substances. Wow, talk about broken. At least you can work and make progress with TbI. Then I am an advocate. What happens to children born in abuse, or into a bad neighborhood, that trauma is below the level of consciousness and a lot harder to fix. Organizational dysfunction, political terrorism, societal dysfunction, these are all consequences of what I think of as “mass broken brain in denial”. I don’t mean to get too deep, but I think our brains are fragile to begin with, (study neurotransmitters, brain systems and communications), or we wouldn’t have the problems we have in the world today. Isn’t that what our higher brain centers are for, to solve problems of survival yet so many times destructive tendencies or destruction is the outcome? So I am working hard on understanding my brain, how it works, its weaknesses, limitations and those, in general, of my fellow “higher evolved human beings”. It is a lot of work and painful truths emerge. Broken brain, beautiful mind, “Innuendos”: statements of truths that empower one to put one more piece of the puzzle together, to create, to create, to heal, to move beyond, to see what can be despite injury to an organ that was fragile to begin with. We have a long way to go, a lot of work and self awareness, ALL of us; TBI’s are really one step ahead of the others. Pat yourself on the back for your progress others wouldn’t begin to understand because of their own denial. And thank you so much for reminding me that although everyone has a broken brain, we all have the ability to create a beautiful mind through choice and creativity. “May I walk in beauty”.
Amen to that – all of it. You said so many things so well. You certainly have not had it easy, and I truly wish there were a way to lift folks out of situations like yours. Sometimes it happens, but often… not. And we are left to our own devices. As well as to others’ devices.
Stay safe and strong – you are on a good path, no matter what things may be on the outside. And yes, May you walk in Beauty.
hi my son was hit in the left hand side of his head with a jack while working on a sod farm, that happened in August of 2000. A section of the lower left hand side of his jaw was totally shattered, I seen the x-ray, it was then plated to hold it in place. Gradually over the next few years he started to complain of headaches, and he became moody, he then started to not be able to handle a lot of noise. He used to work as a heavy duty mechanic, which he trained for after the jaw injury, and then got his class 1 to drive semi trucks. He worked in that field for a while, but got to a place where he just could not function! In Canada we have Workers Compensation, that is to help workers that have been injured on the job, but they say there is not enough medical evidence to prove that he had TBI, he had had a lot of mind problems and they keep giving different medications that I wonder if they are really what he needs. For some reason a lot of professional people do not seem to know much about this TBI and this side of the damage! My son was a healthy productive member of society, and he was mentally healthy before the blow to the head. I am so frustrated that no one will hear me out… I miss the old way my son was.. he had such a sense of humor and so many plans for his life. I am so happy I found this information.
I’m really sorry to hear about your son. That is a really tough one. It’s hard to know about medication. I can’t really take it, because I am so sensitive. I wonder if there is any other work he might do. The noise part is very difficult — and fatigue takes its toll, too. All we can really do is pay attention to what is working, and what is not, and try to adjust as we go. Long-term TBI issues can be so very frustrating, because they sometimes don’t set in right away.
It’s hard to know where to find help — check out http://neurotalk.psychcentral.com/forum92.html for support from some very knowledgeable and compassionate folks. There are a number of long-term survivors there.
Best of luck to you and your son.
Are you only looking for people who have had a TBI to guest post or do you think I could perhaps do one? Here is my blog so you can see if you think it makes a good fit…
I recently read someone say that “all brain injuries are traumatic” and I believe it’s true.
If you have something you’d like to share, please do.
I was in a car accident a year ago. Results are a mTBI, PTSD. physical pain, convergence insufficiency, constant non- stop ringing in my ears, personality chance, and a definite loss of my sense of self. My psych has no idea what to do with me. This is really affecting my personal life, and I’ve lost a best friend, and my husband isn’t sure what to do. I’m not a screaming, violent person, I just feel,like I’m sitting at a bus terminal waiting for a ride to take me back home. Any advice to help me find myself again?
Sorry to hear about your car accident. You’re not alone in your experience – it sounds a little similar to my own experience, with a few differences. Here’s what I suggest: I believe our sense of self comes from us “recognizing” the person who we are — the emotions we have, the feelings we have, the reactions we have to things that happen to us. When our brains are injured, the connections that used to transmit those feelings and thoughts and sensations are disrupted, so we literally don’t feel like the same person anymore. Because we’re not.
It’s a very complex issue, but I believe that we can “retrain” ourselves to get back to feeling normal again — maybe not exactly like we used to, but not that far off. The key to this is discipline — not the punishment kind, but the kind that involves keeping yourself on a schedule, following through in habitual ways, and doing the things that life (and other people) requires of us, in predictable ways.
The changes I went through after my last TBI were pretty dramatic, and I thought for sure I’d never get back to being “myself”, but lately, things have been feeling more and more familiar to me, and I actually do feel like myself again a lot of the time. This has been very difficult and it has taken a lot of time. But it has been worth it.
So my recommendations are to use the following:
1. Discipline — keep a regular schedule and do the things that need to be done, even if you don’t feel like doing them
2. Plenty of rest — to help your brain and body recover from all the hard work they’re doing
3. Good food — stay away from junk food and empty carbs, as they send you on a roller-coaster that’s hard to get off of
4. Pay attention — keep tabs on your life, what you think is working well, what isn’t working well, and find ways to change the things you really need to change
This is what’s worked for me. I hope it helps you, too.
Good luck – it can get better, for sure.
I sustained a serious head injury ten years ago from a car accident where I was a passenger in a car that crashed. I have no memory of the event, very little of being in hospital and the year or two after are all a bit fuzzy. It happened when I was 19 and about to go to university. The recovery and the legal side of things took 6-7 years to come to an end. This was happening during a time when I should have been growing as a young adult, experiencing life, making new friends, getting new qualifications and a career. Instead I now feel lost and like I have no purpose. This is very frustrating and can drag me down. I have tried to learn new things again and again, but nothing holds my attention or interests me. I feel like my twenties were taken for me (i’m 31 now) as the legal side of it didn’t finish until I was about 26/27 and so not only was i restricted due to the effects of the ABI but legally I was held back. I would just like to know if others feel this way. Some advice would be great as I am running out of motivation to keep trying.
Thanks for writing. I can relate to you feeling like you lost your 20s because of all that. I had several TBIs from car accidents in my early 20s and they certainly did not help me much. They brought with them a whole lot of physical pain and “diagnostic adventures” with doctors who could tell me nothing useful, for about that same amount of time. I was at the mercy of bad medical information, and they also told me (because of what they thought was wrong with me – that was incorrect) that I had to stop living my life as I had been, because it would make my “condition” worse. What made it worse, was what they told me — like you, I was very held back by all of it, and I got no resolution from it.
The thing is, when I finally came out of that black hole in my late 20s, I felt like I got my life back. Yes, I was in pain a lot, yes, I had to do things differently in my life. Yes, things weren’t perfect. But I was in charge of my life again.
One of the problems with legal proceedings (I used to work with lawyers on a contract basis, when I was “figuring things out” in my work life, so I know all about this), is that they can take soooo loooooong to resove. The problem with head injury is that the legal process forces you to live in artificial circumstances in order for your attorney to make their case. In other words, if you recover “too quickly” you can hurt your chances of compensation. You have to keep looking like you’re hurt, sometimes, in order to make a good case with a jury or a judge. And that can mess with your head and make you think you’re more hurt than you really are — or that you’re doing worse than you are. I wrote about this issue in a post https://brokenbrilliant.wordpress.com/2010/05/16/do-head-injury-lawyers-do-more-harm-than-good/ some time back.
But now you’re done with the legal stuff, and you’re free to recover as you please. And you can. What you wrote is well-constructed, carefully thought-out, and honest. So, there’s something good going on in your head. And it can get better. Your life is your own again, and just because you’re not in a cookie-cutter life like the rest of the folks around you, that’s not necessarily a bad thing. In fact, I’d bet $50 that in another 20 years, you’ll look back and think, “Thank heavens I didn’t get stuck in some cookie-cutter life and had more experience than I otherwise might have.”
The other issue is that it seems like you’re dealing with some unrealistic life expectations that are the latest fad. Nowadays, folks put so much pressure on themselves to have things all figured out by the time they’re 30 — it’s kind of silly. I think it has to do with your generation having a very structured sort of world — organized sports, formal tracks for just about everything, and much more “set” ways of doing things, than when I was growing up. When you get out of all the “tracks” from school and growing up with your parents, it can be very disorienting, and you’re looking for a new track to be part of. But life isn’t actually about getting in a track and staying there. It’s about building a life out of the widest variety of experiences possible. And it sounds like you’re already ahead of the game, there.
I used to work with someone who was in their early 20s, and they were *so convinced* that they could get themself all set up by the time they were 30… and all the while, they missed out on just living their life. They were so anxious (neurotic, really) about getting it all right, that they could never truly relax and enjoy themselves without a few glasses of wine. That was sad. The world has never worked that way, and it never will. We are all works in progress, and people who are “all set” by their 30s are missing out on a lot of good information they’ll need to live good lives for a long, long time. Lots of people live well in to their 90s, and that number’s going to increase with our medical interventions and all we know about nutrition. So, what’s the rush? It’s an artificial deadline that this newest generation has somehow decided is true. It’s not true, just so you know.
The thing is, you never have to stop growing as an adult (I’m nearly 50, and I’m still working on that, and I know plenty of people older than me who are still figuring it out), experiencing life, making new friends, and getting new qualifications and a career. I didn’t actually get an official career until I was in my mid-30’s and that was a total fluke – not my intention. But it worked out, and it has stood me in good stead. And I have to say, looking back at my life and comparing it to my peers I graduated with from high school, I’m a heck of a lot more happy, fulfilled… and interesting… than all the folks who did everything “right”. As an example, one of my graduating class’es valedictorians (there were three of them – a bunch of overachievers if I ever saw ’em), who went on to an Ivy League school and said they were going to cure cancer, ended up bagging it after a few years, and working from home selling private label housewares. On the other hand, one of the classic underachievers my graduating class who cheated their way through countless tests in high school, got kicked out of a very good university — for cheating — but 25 years later is now working at an excellent job, and they ARE curing cancer.
That interesting stuff only happened when they were well into their 30s, and what happened in their 20s had practically no bearing on it later — other than showing them what they didn’t want.
Ultimately, we’re all responsible for our own lives, and making them what they are. For my money, by far the most important thing you can do, is to be of help and assistance to others in truly useful ways. Whether that’s on the job as part of a crack-team, or it’s in your personal life with friends and family, or it’s on the street with total strangers, that’s the whole point of it. And having the hard experiences you’ve had, gives you the advantage of knowing what it’s like to struggle and overcome. That humanizes you, and it makes you a more valuable team member, family member, and human being. All those people walking around with it all figured out, often aren’t much use at all, other than in meeting their own “performance goals”.
So, what seems like a great hardship is actually a great gift — what you do with that gift is up to you. Just make sure you don’t throw it in the trash because the packaging isn’t what you expected.
Yes, I understand your concerns. I have shared them, too, and I still do sometimes. Our lives are our own, though, and we’re free to make of them what we will. One of the problems that can come with brain injury is rigid thinking — being stuck in a certain track and staying there. It’s important to overcome that. Your happiness can depend on it.
So, I’ve really gone on… it’s important, though.
Short answer — if you don’t like what you see in your life, take some time to sit down and really understand what it is you don’t like, and why. Get honest with yourself about your expectations and wishes, and take responsibility for any ideas that are half-baked (we all have them, we just don’t all recognize them), and then do something about them. You don’t have to get clear about what you do want — the point is to get moving, explore, see what’s out there. Try something new and different you never thought of before. Get a temp job working in a field you never considered. They’re great ways to “try before you buy” with lines of work. Look around. Learn. Explore. Take this opportunity to stretch yourself and really find out what’s possible for you in the world.
Your life isn’t over by any means. It’s just beginning. Our 20s are really just to get us out of the fog of our teens. We really don’t know enough then, to make any quality decisions about our future. Our 30s are where we start to have interesting lives. Our 40s are when things get real. Our 50s are when we really start to feel happy (they’ve done science on that). And beyond that, anything is possible.
So, consider how much good you have in your life. And use it to your advantage. That’s the difference between people who are happy and successful, and people who are putting on a show and miserable inside — the folks who are happy and successful are the ones who learn how to use every situation to their advantage. I have a feeling you can do that, so why not try?
Good luck! Stay well!
A lot of people ask what it’s like to have a traumatic brain injury. I smile as I reply, “I don’t remember”…which is my attempt of adding humor to the truth. Most don’t get it. I suppose it’s one of those things you only get if you’ve been there.
I have a hard time explaining what it’s like to have my brain no longer function as it did. To learn new ways and strategies to be able to function throughout a day. The struggle and frustrations from feeling as though I lost who I was.
For those with relentless curiosity, I admit it’s better than I thought it would be.
Here’s my story…
I still remember the way the air conditioner hit my neck, blowing my hair as it blasted away the hot July heat.
I didn’t mind traffic was backed up on the highway. I had taken the time to pray and ask God what He’d have me do.
Life was going great; I was supposed to be happy achieving what I wanted. While I was grateful, I also had a sense I was missing something. I wondered in all my striving if I had failed to be more, to do more, for Him.
What if God was looking for my willingness to do His work, but I was too caught up in mine? I didn’t want to be that way. I didn’t want God compartmentalized conveniently into my life. I wanted Him to move in my life, and I wanted to be used for His purpose.
As “Amen” left my lips, I felt the impact from behind. A kid texting and speeding in a SUV never looked up. The high speed sent my body whipping back and forth.
I should have prayed specifically. Obviously God slotted me into the wrong category. Getting hit by a car wasn’t what I had in mind…I was thinking more along the lines of teaching Children’s Sunday School.
The timing of the accident was too perfect. God can take months and even years to answer my prayers, but He must have been in heaven lining up cars, waiting for my final word.
Obviously this is a lesson in grace I thought. No, I would not throw the car in reverse, and back over the guy who hit me texting. No, I would not be irritated; he lacked manners and compassion, and didn’t get out of his car to check on me. I would show mercy and grace, knowing he probably regretted a stupid mistake. God knew what would happen, so I’d chose to be thankful for His timing and the given opportunity to extend grace.
Having never been in an accident before, I couldn’t believe I could be whipped around like a rag doll and not be hurt worse than Iwas. The officer on scene and the Dr in the ER warned me how bad it would be especially with such a hard impact.
I thought everyone was making a big deal out of nothing. They didn’t know what I have lived through before and the pain I’ve endured. While it didn’t feel great, I naively assumed a sprained neck would be similar to an ankle – I’d feel it right away.
The next morning, I couldn’t lift my head off the pillow. I painfully lifted my sore arms and used my hands to support my neck so I could sit up. I shook as I opened the pain killers the Dr prescribed.
Standing in the hot shower, the water mixing with my tears, I didn’t dare let go of my neck. Like an infant, my head was too heavy to hold up. If it tipped and I used my neck muscles, it sent me through the roof. I took back every thought I’ve ever had about a high pain tolerance.
-Something’s Not Right-
I started sleeping 20+ hours a day. When I’d eat, I’d fall to sleep at the table. When someone was talking to me, I couldn’t keep my eyes open. I was told the whiplash was the most severe one could be, just short of snapping my neck. All I wanted to do was take some more pain pills and muscle relaxers and go to sleep so I wouldn’t feel it anymore.
Everyone assumed my drowsiness was due to the prescriptions and bodily injury. A week and a half later I stood in the middle of an aisle at Target, and came undone. My body wash had been repackaged. I didn’t know if it was the same, I didn’t know why it was changed, I didn’t know if I’d like it. As I stepped back and looked at all the shining bottles lining the shelves, I started to panic, what would I choose, would I like it? I started crying and couldn’t stop.
The thing is, I knew it was crazy. I knew it didn’t make sense. But it didn’t matter. I couldn’t stop.
I went in to see my family doctor. She mentioned something about brain injuries during accidents and how I’d have to go to a rehabilitation hospital and would not be going back to work for some time. I heard her words, and it terrified me. As a single mom I couldn’t be missing work. I cried, knowing as an inconvenience I’d be fired. To me, it didn’t make sense why family and friends were freaking out about a brain injury. My job was on the line.
-Crazy with a Touch of Paranoia-
One of the worst days of my life, was the day of the appointment with the traumatic brain specialist at the rehab hospital.
I freaked out and didn’t want to go.
There was something wrong with me and I knew it. I didn’t need anyone else to tell me what crazy is. Besides, I would have to get dressed to go and I couldn’t. I laid in bed in a heap of clothes crying. I didn’t know if I should wear a tank top or short sleeves. Although August, I worried about the hospital being cold and if I needed to bring a jacket, or wear jeans. On top of that, there’s so many colors to chose from. How do I pick the right things? How do I know what I pick is right?
I began wondering what the hospital does with crazy people. Do they lock them up, drug them, take away their children…I resented having ever read The Bell Jar.
-Traumatic Brain Injury Diagnosis-
I looked at the doctor debating if I could trust him enough to tell him what was going on. I couldn’t keep my thoughts straight long enough to do so. My mind was so garbled. Humiliation burned my cheeks knowing the nurses probably told him I was in tears handing back the medical forms I was unable to fill out. Not seeing other options and knowing I needed help, I laid it all out.
The headaches which never go away. Feeling as though someone took a potato peeler to my brain, it hurts so bad.
Sleeping 20+ hours a day.
Nausea and dizziness. The bed spins and rocks when I’m laying down. Closing my eyes makes the bright lights come.
Ringing in my ears.
Static vision – it looks like I’m looking through an old tv.
Sensitivity to light, sound, movement.
Can’t quit crying.
Can’t follow conversations. Be talking and suddenly not know the next word I was going to say or what I had just said, or what the conversation was even about. I can’t find the word I’m looking for or need to say but can define it.
Can’t make decisions or know what to do.
When I finish speaking, the doctor looks up from his notes and tells me I’m not crazy. I don’t buy it. He tells me I have a traumatic brain injury. He looks at me and I can see a sense of sadness in his eyes, but I don’t understand why. I’m going to get better. I’ll be just fine.
The first appointment I had with the Speech Therapist, she asked if anyone told me I sheared my brain.
Of course not. I did what?
She looks at me and says the doctor probably went over it with me. I’m at a loss for words because if he did, I may not have remembered.
She explains to me how the brain sits in fluid and when it’s whipped back and forth suddenly, say hit from high speeds from behind, the fluid can’t protect the brain. The brain hits and rubs against the inside of the skull.
Another word for it is Diffused Anoxal Syndrome. The pathways in my brain are strained or broken. Some will heal with time, some will reroute, but what I don’t regain I’ll be shown ways to handle and deal with it.
For the first time, it dawns on me I’m not going to be ok. This isn’t the flu, it isn’t a cold, or a broken bone. I’m not going to be the same.
I decide right then and there it’s not going to be me. I’m not going to turn out like everyone else. I will do whatever I have to do, and I will figure it out and I’ll be just fine again.
I was going to join the ranks of those who doctors told would never walk again, and then they did. I failed to consider all those the doctors told, and who never did, and not because they didn’t listen or try.
-I Get Worse, but They Call It Better-
I leave my car running. I can’t find my kids when they’re in the basement playing. I get lost in my neighborhood, on my block, on my street. I blow dry my hair but don’t stop until my scalp is burned and my hair crunches. I freak out in a thunderstorm. I lose my train of thought and can’t remember what I’m talking about or what people are trying to tell me. I talk to someone I haven’t seen in weeks and they talk about what we did yesterday. I’m a mess.
I tell the doctors they need to do something. There is something terribly wrong with me. I’m supposed to be getting better, but I’m getting worse. As I tell them, I pray there is something they can do to make it stop. To halt it’s progress and get the damage to reverse.
The brain injury specialist smiles and tells me I am getting better.
Obviously, he’s not listening. In frustration, I start over, telling him what’s going wrong with me. I tell him he has to understand so he can figure out how to fix it.
His smile changes to a serious look as he tells me it only feels like I’m getting worse, but in reality I was so far gone before to know how bad off I really was.
I believe what he says. I lean against the back of my chair and take a deep breath. He continues to talk and I know I should be listening but I don’t.
All I can think about are other times in life, I’ve been as truly terrified as I am now. There aren’t very many.
-Living with Traumatic Brain Injury-
The hardest thing about living with a TBI is feeling what I do, doesn’t feel like me. As though everything I do is wrong, merely because it’s not the way I’ve always done things. The way I think and learn and retain information, isn’t the same.
I always figured if I had to relearn how to think or do things, it would be in my old age from a stroke. Then, I’d have plenty of time to during the day. I didn’t know it would happen from a brain injury in my 30’s while I’m a single mom with young kids to care for, and a demanding job.
A lot of people try to be optimistic and hopeful. They tell me I’ll figure it out. I’ll get through this time and learn a new norm. It fails to encourage me, but it does strike a cord of anger and resentment. Like it’s that easy.
It didn’t feel ok. The last thing I wanted to hear was others telling me it was or would be. Not when it wasn’t ok with me. Far from it.
Acceptance hasn’t came as a sudden decision. Acceptance started to come in small little ways at times where it didn’t hurt me anymore to have to use obnoxious time-consuming strategies. When my resentment of them diminished and against all odds, I started embracing them, needing them, and not hating myself for it.
I had to learn to lower the bar for myself. To give myself a break. It was hard. I wanted to be the same person I’ve always been. The problem is, I’m not.
I started letting go of frustrations and getting upset, I couldn’t do what I thought I should. Being angry and upset wasn’t getting me further along. As I did, I started to gain excitement in my accomplishments. Because there are accomplishments. No matter how small and pathetic they may seem, they’re huge. They are what gets you to the next. They lay the foundation. Once I understood and felt it, I started to be proud of my progress.
There is also a discipline to learn. Sometimes I’m busy and I’ll think I won’t have to use a strategy, such as writing something down to remember. But I’ll forget it. I have to do what I know will be successful no matter how small it may seem. It’s worth feeling good and confident, instead of frustrated and upset.
-Not Giving Up-
“The harsh truth is there are no benefits, no positives, for brain damage”, I still remember the the pressure in my chest hearing those words. I snapped back at the doctor, “I like things sugar coated.”
As the doctor went on to explain, even a heart attack can lead to someone feeling better, but brain damage is never good and doesn’t provide benefits. Ever.
While he’s right in the medical sense, I will tell you he’s flat out wrong in others.
Life has never been harder, but I also love and appreciate so much more about it. I take better care of myself now than I ever have. I’m aware of how events and situations affect me.
Walking around feeling a little broken, can make you more aware of the brokenness in others. Even those who are blind to it themselves.
I thought when the year mark hit and I knew the vast amount of healing had taken place already, I’d be depressed. But I wasn’t. I was truly happy. I wasn’t where I wanted to be (back to pre-accident self) but I had made it. I had learned to live again. I thought about all 365 days I had endured, and my sense of accomplishment soared.
Having a traumatic brain injury, has made me fearless in ways. As hard as it’s been to survive and get back to life, I know I can face anything. The empowerment I’ve gained has been unreal.
What I have to remember is I’m still me. Maybe I’m not exactly the same, but I don’t need to be. God doesn’t need my strengths and abilities to use me. He can use us all, right where we’re at, in ways we never could have imagined.
Thank you so much for sharing this. I am going to post it on the main site, so people can find and read it. Thanks again – I’m sure a lot of people will benefit from your testimony.
Thank you for telling us about your TBI.
It will be interesting to hear from you again in another year. It’s been almost 8 since mine. And each year I’ve thought I was doing great, and then to look back another year, or a couple of years and realize I wasn’t doing that well, but the healing and rewiring was continuing.
No, I’m not who I used to be. I’m someone different. But I can do most of what I could pre-injury, and feel more creative in how I address problems. And that is good.
Sometimes I wonder if I’m not glad that I have no cognizant memories for 9 or 10 weeks after the TBI. Even in the first 5 years pre-injury I don’t have a lot of memories, and maybe that is a good thing!
Here’s hoping your recovery an re-wiring goes very well and you find yourself enjoying life!!
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Lack of memory can be handy, actually. Someone has said “Happiness is good health and a bad memory,” and I can’t say I disagree. It’s very interesting, how we change and evolve, when we have to.
Very true. I am very glad I don’t remember anything for about 9 weeks after the accident. Looking at some of the pics from the Neural Trauma ICU…I’m really glad!!
But there are times when I know the answer, I know I know the answer…and it may come to me a few days later. But I am so thankful to still be alive and enjoying life!!!
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Those lapses of memory will make you crazy, that’s for sure. It’s always interesting, finding out what I forget most easily. Then again, my lapses tend to be intermittent and not according to any pattern I can find. Sometimes it’s there, sometimes it’s not. But like you said, it’s great to be alive and enjoying life!
I suffered a concussion a year ago. It happened during a coed soccer match. I was hit in the face with a guy’s arm. We were running along side each other on the wing and he had the ball, he went to kick the ball and his arm bashed me in the face. It was the most excruciating pain I had ever felt. I did not pass out but my face and nose were in tremendous pain. I walked off the field and people were telling me my nose was swollen, face was red, and I had a blue line on the bridge of my nose. I immediately had a headache but I didn’t think it was related to a concussion (I suffer from intense migraines) as I was more focused on the pain with my face and I had never had a concussion prior to this incident. I drove myself to and from the hospital and the Dr. broken nose. I was to take it easy and rest. The next day I was unable to get out of bed or function as I normally would. I had a concussion on the way home the night it happened but I had no idea and neither did the doctors as I suffer from migraines, so headaches and migraines are common for me so I didn’t consider a concussion until the next day. I couldn’t do anything I normally did for 2 weeks. I couldn’t go on the computer, read emails, scroll, go outside because I was very sensitive to light, noise drove me nuts, I was nauseous all the time (but never went past being nauseous), I became depressed because I could only handle staying in my room and not exercise or do my sports (I played 4-6 times a week). It was really bad! My face didn’t look like my face, my nose was messed up and I have 2 black eyes.
Even though it’s been a year I still struggle with the post concussion symptoms. I feel like the TBI made my migraines worse. I’m always nauseous, it comes and goes during the day but I’m always nauseous. I am still sensitive to light and sounds, it’s been a challenge to go back to the gym. I have completely lost my drive to work out (I use to go to the gym 3-5 days a week while having soccer on other days). At times I feel a little depressed, lonely, and sad. So I have signed myself up for recreational soccer and I’m very careful when I play, I go in with a fun mindset. But after I play soccer I’m still feeling down. I’ve been trying to get back into shape but since this injury I can’t find the motivation to do it I can only bring myself to play sports. Sometimes I can’t recall memories people tell me “remember …” and I don’t remember it happening.
I just want this to get better so I can go back to what it use it be before I was injured.
Thank you for reading, I’m sorry about the long post.
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Thanks for writing – no problem about the length. It’s good to get that detail.
Sorry to hear that happened to you. I found the first few years after my last concussion to be incredibly difficult to handle. A lot of things went really, really wrong in my life, and I didn’t understand why.
Not being able to do the things that used to bring you fulfillment and joy can be very debilitating. I encourage you to develop a routine and stick with it, even if it’s not that much fun. Doing things over and over trains our brain to do them well, and one thing we all need after concussion / TBI is the ability to do *anything* well. For us, the loss of ease and ability can be debilitating. So, even something as simple as getting up at the same time every morning and doing an exercise routine before you start the day can be helpful.
In the end, it’s a process. It’s learning. It’s hard, because we can become very rigid after brain injury. It’s just one of those things we need to contend with, like any other obstacle or challenge. The trick is not letting it get you down, and treating it like an opportunity. To change. Into something / someone both different from before and very much the same.
Good luck to you. Hang in there. Recovery is possible.
I have had four concussions. The most recent one was two years ago but I still feel dull. I feel stupid and ditsy.
I remember too well how smart I used to be and the intelligent conversations in which I used to participate. The philosophical inquiries I would ponder about in class instead of paying attention.
Now my brain is filled with what feels like radio static. Basic concerns. “What and when will I eat today? I wonder who wants to hang out later.” Other issues that my mind used to resolve within moments can take me a half hour to work through. I’ve read that I just need to “re-wire” my brain, but I don’t know how. I don’t know where to begin. I know I’m missing things but I don’t know how to get them back.
I miss my easy intelligence. I miss my empathy. I miss reading others emotions with ease. I miss analyzing tough situations and coming up with multiple ways to address them in minutes.
I feel lost. I feel dumb. I feel hopeless and helpless.
I just want my brain back. I want to be myself again.
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Sorry to hear about your difficulties. It sounds very familiar to me. It can take a fair amount of time to “recoup and regroup” — especially when you’ve had more than one (I’ve had nine, and no, it’s not fun).
The one thing that helped get me in the right direction is *routine*. If I can turn a regular activity into a routine (so I can eventually do it automatically), it saves my brain from having to constantly figure stuff out. What and when you will eat is a great candidate — you can set yourself up with a schedule, set your alarm/phone to remind you, and then follow that schedule. It sounds boring, I know, and sometimes it is. But the upside is that it trains your system to do things in a reliable, predictable way — and That Is Key. You have lost an important part of yourself: feeling like you know what you can expect from yourself in terms of reactions and actions. Now you need to retrain and get used to a different side of yourself.
Don’t worry about things taking a while. Concussion is like when a tornado or hurricane tears up an area — it takes time to clear the roads and put things back in order, and sometimes the roads become impassable, so you have to build new ones. It all takes time. Rest is critical — so is giving yourself a break.
I can’t tell you how depressed I can get, when I think about how quick I used to be, how easily I used to pick up new things, and how spontaneous I could be. Now it’s not that way at all. But you know what? I have a greater depth than I ever had, and it’s actually possible for me to really think deeply about subjects I used to gloss over. I traded quantity for quality, and it’s a fair trade.
You will be yourself again. You still are yourself. It’s like a tsunami has washed in and then washed out, taking away things that were familiar, and revealing stuff that was buried before. A number of years ago, a tsunami revealed a long-lost Indian city — https://www.cbsnews.com/news/tsunami-revealed-lost-indian-city/ — and you can think of your life as that. Concussion can rip a lot of things away from us, but there is always — *always* — something else to find underneath.
We’re a lot more sophisticated than we realize — we just have to go through the changes to find out all the details.
Good luck to you. Don’t lose hope. You don’t have to.