Brain Injury Survivor Stories
For more information on Brain Injuries, please visit our Brain Injury section.
How Can You Share Your Brain Injury Story With Us?
- Enter your story in our online form
- Email your story to SCPDBrainInjuryFund@delaware.gov
- Write your story down on paper and mail it to:
State Council for Persons with Disabilities
Brain Injury Story Submission
Margaret M. O’Neill Bldg., Suite 1
410 Federal Street
Dover, DE 19901-3640
- Call us at (302) 257-3614 and request to have one of our staff read you the questions, listen to your responses and enter your information into our online form.
Dear Doctors, Care Givers, Families, Other TBI Patients and People who are LUCKY NOT to have Brain Injuries:
I have a Brain injury with Frontal Lobe Damage. This is NOT the same as Mental Illness and it is NOT the same thing as having a mental health issue. While Counseling MAY be beneficial, it will NOT cure me the way it will OTHER mental illnesses and here is WHY:
And guess what. This may surprise you. My BRAIN itself is broken.
Going to talk therapy is going to help ME as much as if YOU were having chest pain, called 9-1-1 and Doctors, nurses and EMTs looked at YOU and said: “Chest Pain? Forget the Oxygen, aspirin, EKG and Morphine. Let’s get you into therapy to talk about your MOTHER.”
You would think the WORLD had gone nuts, would leap off the stretcher and find another hospital. Or you would get ANGRY.
It DOES have its place and it WILL help me DEAL but it is NOT a cure!
Let’s back up here a bit.
No two brain injuries are the same.
There are some lucky individuals that can land splat on their head from 75 feet up and walk away 6 months later after 40 surgeries and be NORMAL. AT least if you watch any TV show, THAT is how brain injuries WORK. Main characters get shot in the head, have horrific car accidents, get beat senseless in the head and have ZERO lasting symptoms. They are never nauseated, dizzy, confused or ANYTHING. They go right back to being brain surgeons, presidents, wives, husbands and living normal lives. Even medical dramas, (ER, Chicago Med, Grey’s Anatomy) THAT is how people heal from brain injuries. TOTALLY normal in two episodes.
They got one thing right. No two brain injuries are the same. And, very occasionally, there is some poor slob that has some medical miracle and has minimal symptoms. But there is also the poor slob that falls from a standing position and barely bumps his head and is never the same again.
MOST OFTEN, there is an injury and there are lasting symptoms that people don’t understand, either because they don’t want to, or they just don’t get. There are some scattered hospitals around the U.S. that “GET” brain injuries, but they are few and far between. The average patient gets told “We don’t know when you will heal, how you will heal and if you will heal” and when they keep experiencing symptoms that are unusual and bizarre, they are made to feel like a cretin.
ESPECIALLY if they have any kind of FRONTAL LOBE damage.
Sadly, for those people, the rest of the United States has NOT come far from the 1950s “Let’s Lobotomize them” thinking.
The FRONTAL LOBE is responsible for things like emotions, emotional control and what we like to think of as “rational thought and behavior”.
And, here in America, we like to think that people that are incapable of rational thought and behavior fall into TWO categories: “PURE CRAZY” and “Those That ARE NOT Trying Hard ENOUGH”.
So, for the Brain Injury survivor, life is difficult. Family members usually lump the walking, talking, brain injury survivor that cannot control their rational behavior with frontal lobe damage into the latter category.
I wish that they would see us as a patient that is exactly what we are. A person with a brain injury. Someone with a Broken Brain. Someone Incapable of Rational Behavior Because of our Broken Brain.
Take ME, for example (which is, of course, why I am writing this).
People say I am SO LUCKY because I LOOK SO NORMAL and am capable of HIGH INTELLECT.
To me, that is the ABSOLUTE WORST.
That means that I am still able to understand that there are times when my emotions and actions are completely unacceptable.
That is NOT THAT SAME AS BEING ABLE TO CONTROL THEM.
That IS the same as being able to feel tremendous amounts of guilt and shame AFTERWARDS, when I realize how I have behaved.
Maybe 1/3 (and I am taking a WILD guess here) of us are even able to understand that what we have done is wrong.
I completely ENVY the brain injury survivors that are oblivious to the behavioral, social and emotional havoc they wreak.
I USED to be a NORMAL person. I am guessing, for people reading this, YOU used to be a normal person, or you are taking care of someone that used to be a normal person. Of course, I had my mental health issues, I guess, or my problems, just like everyone else. But, thinking of who I USED to be isn’t going to help me now. The FIRST thing they tell you in Brain Injury Rehab. “Embrace and Accept the NEW you”.
So, everyone AROUND you must do exactly that. WHY then, does everyone contradict themselves and compare the OLD ME to the NEW me if half my rehab is about getting used to the NEW me and explaining to me that the OLD me is gone forever?
It was hammered into my head that brain damage “erased” the old personality I had and a NEW one is emerging.
WHY then am I accused of being “Mentally Ill” when I do not ACT like the OLD ME?
AM I the only one that is NOT following the logic here?
When brains are damaged, they can’t go out and get NEW parts. They fix themselves with what they have, so they make themselves function SIMPLER.
I am not capable of complex thinking patterns like I once was. (This is in the emotional department AND the intellectual department). I tend to think in concrete terms and “black and white” thinking.
Hey. Be happy I am THINKING at all.
In the past several years, since the physical symptoms have been easing off and it is the mental symptoms that are becoming more prominent, I have been diagnosed with about 25 different mental illnesses, ranging from Bi-polar to outright psychotic by people that had ZERO idea what they were talking about.
It took taking actual psychological exams to realize that I have (and hang on here because this was a real surprise to the medical community) a BRAIN INJURY and BRAIN DAMAGE. I couldn’t be categorized with a mental illness because I didn’t have one. My brain was incapable of functioning correctly. FAR DIFFERENT from a mental illness.
While, in mental illness, the brain ALSO does NOT function correctly, it is more definable and predictable.
With brain damage, our symptoms can MIMIC other illnesses. Sort of like BAD GAS can MIMIC the symptoms of a heart attack. You certainly would NOT treat bad gas and a heart attack the same.
MAYBE, just MAYBE they should stop trying to treat brain damage and mental illness the same...I can say, having been a guinea pig for the medication...they sure as shit don’t work.
The BIGGEST disservice you can EVER do is tell us brain injury patients that we can CONTROL the symptoms.
Because next time you have cancer, that kind of thinking will get YOU into “psychotherapy” where you have to visually imagine your cancer away and you are made to feel guilty you have cancer and then you spend months going over your childhood with a stranger getting at the root cause and deep -seeded meanings of what could have caused your cancer deep within your inner id.
People wonder why people with Frontal Lobe Damage often ANGRY are. Try getting THAT for treatment all the time. Being misunderstood and then blamed for something you HATE about yourself and you will be a bit ballistic, too.
I sat around for years contemplating suicide because the medical community at large told me that I created my own set of circumstances. I watched heroin addicts get needles and free treatments while I was denied every kind of care imaginable and told all my problems were in my own head, under my own control and of my own creation. Then we wonder why so many of the homeless have brain injuries and ended up that way because the medical system left them like that.
The worst part of it is, it could happen to anyone at any time. The problem we chose to ignore because it is right under our noses. It is SO real that we hide from it, sweep it under the carpet and pretend it doesn’t exist at all so we can go on living our lives without recognizing it. Easier to treat people who make bad lifestyle choices than even acknowledge people that something like this happens to because the reality is inconceivable.
And the truth is we are far more likely to help someone who really does have a choice than we are to acknowledge someone that really cannot help themselves and really is sick. Because the truth is terrifying.
Back to my story.
I experience emotions, but not like normal people do. Believe it or not, I remember what it was like to have normal emotions. But, every day, that fades away more and more as I am lost in the chaotic swirl of brain injury.
My emotions now are like what I can only describe as “Bi-Polar -On -Crack.” They come at random and they change on a whim. And they are POWERFUL. And they do not always match reality.
I was short a penny at the grocery store and I collapsed in a heap of tears on the floor. Like a toddler having a tantrum. My (teenaged) older son was horrified and walked out. My younger (also teenaged) son calmly handed the cashier a penny, peeled me off the floor and said:” My mom is having a really bad day” and he LAUGHED about it. Like it is no big deal.
My older son won’t live with me anymore. Can you blame him?
My younger son is proud of who I am, my struggles and he think it is pretty neat to have a “different” mother. His favorite, weird, unexpected mood of mine is when I get the giggles and we will laugh about nothing for hours.
There IS A medication for this, but it is EXPENSIVE (over $1,000 a month) and insurance likes to deny it every few years and coming off it abruptly when the insurance Gods take it away is worse than coming off drugs or alcohol. Twice now I have had to stop it cold turkey because it wasn’t deemed “medically necessary” and for the time period I was off it I don’t even REMEMBER my behavior; it was THAT HORRIFIC and out of control. And there is no generic or substitute for it at this time. The drug companies probably give it free to Russia and Botswana.
I meditate. I see a therapist. I do aroma therapy. However, when I get overwhelmed or in a situation that I must multitask, I cannot concentrate on controlling my emotions and they run amok. Someone can tell me a joke and I may burst into tears because my brain just can’t seem to get the hang of humor mode.
If you think I ENJOY this or CHOOSE this, well, you can think AGAIN.
I spend ALL my down time re-enacting situations in my head or play acting while hiding out in my house exactly HOW I am going to behave when ANY conceivable situation comes up. I deep breathe. I count to ten a hundred million times. But, I have FINALLY LEARNED that when my brain hits a certain stimulation level (and that level is about 30 decibels of noise and a few blinking lights and more than two people talking at a time) the wires get crossed and the multi-task mode goes haywire and my emotions short circuit. I have no idea what will come out of my mouth. And it terrifies me. I rarely go out in public.
I feel like my brain is a ball of 30 million strings of Christmas Lights tangled into 30 million hopeless knots, shorted out in places and just sparking and blinking in others. This hopeless tangle of confusion just twists and turns and tightens and knots itself even worse the harder I try to untangle it. I am by no means an electrician and everything I have tried to do with it has just made more bulbs blink OFF. And the more people that yell at me to “Think it better” the worse the knots get.
I just don’t think brains work that way.
I can’t get those pathways to fire up no matter HOW MUCH I want to or how much YOU want me to. And yelling at me to do it certainly isn’t helping ME any. So, there I am, up a ladder, on a slippery roof, trying to untangle my brain, and the whole world is YELLING at me to FIX the damn lights already. Now there is an ice storm and I am about to FALL off the damn ladder. Nobody seems to want to help me with the lights and I didn’t tangle them up in the first place. I have gotten to the point that I am OK with the pattern they make, blinking in THEIR way and I just must figure out how to DEAL with it.
MAYBE if you HELPED me a bit, we could untangle a few. Or, maybe, just maybe, you have to sit with me and admire the twisted view of what was left after the storm went through. It isn’t perfect. Just, right now, it seems that the electric company hasn’t figured a way to get them up and running and I failed out of that class.
I just know that TALKING to the damn lights and telling them what my childhood was like and who my mother was is NOT helping AT ALL. Nor is YELLING at me to fix them. Nor blaming me that they are broken. There was a storm that I didn’t cause that went through. FEMA sucks and paid nothing. That was the reality of my life and the medical system.
I have finally found a place where, most days, I am at peace with the carnage left behind.
Some people say I should be happy that I have a place to live, even though I suddenly went from a mansion to a trailer park. They don’t seem to get the difference.
Thanks for allowing me to share,
For more information on Brain Injuries, please visit our Brain Injury page.