Morals vs Memories – What defines “who you are”?

waldo finds himself
As someone with amnesia… I’d say morals are much more telling of who and what I am on the inside – since my memories before my injury are gone, and the ones I attempt to make since face away eventually. All I have left is who and what I am on the inside…. which is a fairly awesome individual.

My memories may be gone, but I’m still fundamentally me. My personality has only changed ‘so-much’ but people still call out my individuality as similar to what/who I was before the injury. So – in conclusion – no, memories don’t rob your identity entirely – what it DOES do, is rob you of control of what you assume defines you.

I cannot recall the past, so therefor, much of what I identify as my life is gone. My life still exists, but you have no context to define or reminisce over. There are no definite “road signs” or “landmarks” to clearly define where I’ve been or what I’ve experienced.

This is an article I am referring to when I wrote the above statement….
http://www.scientificamerican.com/article/morals-not-memories-define-who-we-are/
Here’s the article if you don’t feel like clicking the link…

Morals, Not Memories, Define Who We Are

A new study has implications for patients with Alzheimer’s and other disorders

old man looking out a window

Although Alzheimer’s and other neurodegenerative diseases may powerfully impact the mental functioning of individuals, sufferers can find some solace in the fact that substantial memory deficits—when unaccompanied by changes in moral characteristics—seem to have no effect on how others perceive “who you are.”
Credit: ©iStock.com

Have you ever wondered just what it is that makes you, you? If all your memories were to fade away, would your identity dissolve along with them? Would friends and family no longer perceive you to be the same person as before? For the 5.3 million Americans experiencing memory loss due to Alzheimer’s disease, these frightening questions are more than just theoretical.

Fortunately, science appears to suggest that being robbed of one’s memory does not equate with being robbed of one’s identity. A new study has found that “who one is” is largely defined by one’s moral behavior, and not by one’s memory capacity or other cognitive abilities. Thus, although Alzheimer’s and other neurodegenerative diseases may powerfully impact the mental functioning of individuals, sufferers can find some solace in the fact that substantial memory deficits—when unaccompanied by changes in moral characteristics—seem to have no effect on how others perceive “who you are.”

Determining the factors that define one’s identity is an old philosophical problem that first received serious consideration in the 17th century by the early British empiricist, John Locke. According to Locke’s “memory theory”, a person’s identity only reaches as far as their memory extends into the past. In other words, who one is critically depends upon what one remembers. Thus, as a person’s memory begins to disappear, so does his identity.

This notion of identity as memory has received experimental support from psychology research. A 2004 study followed Alzheimer’s patients and found that those exhibiting impairments in autobiographical memory—one’s knowledge of their own past experiences and events—on standard psychological tests showed changes in the strength and quality of identity. The strength of identity was measured by the number of unique statements given by the patient in response to the question, “Who am I?” while the quality of identity was measured by the abstractness of their answers, i.e., their lack of specific details. These findings seem to imply that autobiographical memories create a continuous first-person narrative that helps form a sense of self.

However, other scientists remain unconvinced of Locke’s premise, as some theorize that more central to identity is moral capacity—a variable that these previous studies did not adequately control for. Evidence for this idea comes from social cognition research that has found that impression formation is largely dependent on the moral dimension. In other words, how we see people—whether they are positive or negative, to be approached or avoided—is mostly determined by our assessment of their moral character, and not their intellect, knowledge, or other personality traits. The concept that morals are essential to identity is aptly known as the essential-moral-self hypothesis.

Researchers from the University of Arizona and Yale decided to investigate this hypothesis directly in a real-world clinical population. Their study was designed to test what types of cognitive damage cause people to no longer appear to be themselves to others. A crucial element of the design was testing for changes in identity from the perspective of a third person observer, rather than the individual himself. In addition to sidestepping many of the reliability problems intrinsic to first-person accounts, focusing on perceived identity allowed the investigators to assess the effects of memory and moral changes on the patient’s relationship with others. This is an extremely important facet because when someone appears to be “not the same person,” the social bonds between patients and loved ones or caregivers quickly deteriorate. These bonds are critical to one’s well-being and health, as they are the source of the connectedness one feels to the people in their lives and the outside world.

The participants, most of who were married to or romantically involved with the patients, were instructed to indicate how much the patient had changed in 30 trait categories since the disease began; 15 were related to morality and the other 15 to personality. To evaluate the degree of change in the perceived identity, participants were asked to give information regarding any differences in their relationship with the patient that had occurred over the course of the disease’s progression. For example, they were asked questions like, “Does the patient ever seem like a stranger to you?” and “Do you feel like you still know who the patient is?”

Analysis of the data revealed that participants perceived the greatest disruptions in patients’ identity when they observed changes in moral traits. Other cognitive deficits—like those seen with amnesia—had no measurable effect on the perception of identity. Consequently, those with frontotemporal dementia showed the greatest changes in perceived identity, since it specifically affects the frontal lobe functions underlying moral reasoning and behavior.

Interestingly, those with ALS showed no significant change in perceived identity despite the greatly distorted physical appearance that results from the widespread deterioration of motor function. Although there was minor change in identity perception in those with Alzheimer’s, this was associated with changes in moral traits and not memory loss.

These findings have important implications for patients with neurodegenerative diseases. Efforts aimed at helping sufferers to understand themselves in terms of their moral traits—characteristics like altruism, mercy, and generosity—can restore their sense of identity and control as memory fades or cognition declines. Simply knowing that others continue to perceive them as the same person, even when they feel that their own identity is changing, can allow them to securely protect their sense of self. Additionally, the results highlight the need for future neurological interventions and clinical therapies that specifically focus on maintaining those cognitive faculties involved in moral function in the face of disease.

This new research is also an important intellectual contribution to the discussion surrounding the ancient question of what makes someone who they are.  It appears that it is not our intelligence or our knowledge of the past that defines us, but instead our moral behavior. Essentially, identity is not what we know, but what we stand for.

I’d have to disagree with this statement “Other cognitive deficits—like those seen with amnesia—had no measurable effect on the perception of identity.” because I have amnesia, and much of my identity rests with my ability to remember events, connections/relationships to others, and the small details that go along with all that comprises everyday connections with others. Much of what I see as “identity” refers to what I can or cannot remember has happened. In my case, “It appears that it is not our intelligence or our knowledge of the past that defines us, but instead our moral behavior. Essentially, identity is not what we know, but what we stand for.” isn’t entirely true.

Yes – my identity literally are the things that I believe in, but, what I perceive as who I am is mostly based on memories. This is why I struggle so much. If I could convince myself that “who I am” is equal to what I believe in, stand for, fight for, and feel, then I wouldn’t feel so strangely and intrinsically attached and tethered by my inability to recall memories. I would feel free. I would feel whole. Instead, I feel like my lack of memories defines who I am. Instead, I should see it as defining “what I have”…. amnesia.

I wonder how many amnesiacs have the same dilemma as I do – attaching “self” to “memories” instead of attaching “amnesia” to “actual memory loss.”…? I wonder how many amnesiacs identify with their memory loss more easily than who they actually are (the morals and values they hold.)

Thanks for reading! 🙂

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Rebuilding through Suffering

My mind is on repeat of the who, what, and when.

The where, how and why, they seem to just fizzle out and float on by.

When my thoughts are all a clutter and there’s no order in my head; often I sit and wonder if that’s why I’m full of dread.

Hectic wandering – feeling lost, alone, and scared… Is this my reality; are these passing weeks really dreams; is this what amnesia truly means?

Nobody can warn you of the horrors unfolding, because not even they can imagine what memory loss is really withholding.

Your past, your present, your future years – they’re all held prisoner by this warden of fears.

Consciousness is but a state of delusion that you’re in control and can manage your contusions.

Breaking free is but a solution – yet there’s no tools, no instructions, no map, no signs, no meanings – mostly confusion.

Before you wake you’d better hope, dream, and pray, because who knows what tomorrow will erase.

Nightmares turned actuality, and nowhere to hide or find security.

Sometimes there’s a crack in the wall and I can stand proud and tall – but not often enough for me to huff and puff.

A constant state of ever evolving enlightenment – or am I just getting used to a life of torment…?

Nothing is certain, or safe, or fair – Everything hurts, and feels brittle and bare.

I put my fight face on and hope to inspire those who feel so dire – — If I don’t, who will? If I won’t keep trying, who will fail? If I keep fighting the impossible, and trying to be unstoppable, maybe – just maybe! – someone will come along and plug up this endlessly leaking well.

If I come up with ways to help others cope, maybe my life of pain will inspire some hope.

If I can ease the suffering of another, maybe my life of strain will let down gently like a feather.

If I can show others that life is truly worth living, maybe I’ll even start believing.

Sometimes to achieve, you must lastly succeed – Accomplish for others first, and then you’ll get your reprieve.

Maybe this is how humility works – First I suffer, then fight for others, then get a break in these hurts.

Maybe if I can prove you’re not alone, I won’t feel so abandoned – not by people you see, but by my own memory.

Not everything is so dire, when your life is aspired – but the darkness surrounds me, no matter how much light I can make afire.

Not every battle is won but more scars I have worn, not every torment is flung into the darkness it had come from.

I walk through the my life with my head looking forward – there’s no reason to look back – it’s been erased like a computer’s been hacked.

Do I sound dismal, depressed, congruently obsessed? You would be too if your mind had broken up and left you a mess.

You couldn’t possibly imagine what it’s like to live with an incalculable ration of who you once were; there’s no hope for a cure.

If I could choose to live without a fractured mind, I’d choose to be made whole… I’d live without the cruelty of a crime that robbed me of my most of my soul.

There’s no reincarnation here for me – once my mind was ripped from my skull…

It used to matter so very much that I find all my pieces for me to feel not so out of touch… now it seems those pieces, even if I could find them, are only unrecognizable bits of someone I’ve never known.

The “me” before amnesia is not the “new me” I am today – she has long since died and has decayed.

The “new me” now is tattered and torn, vulnerable and feels so scorned – I feel unusual in my skin, so very paper thin.

The hope in my heart is meant for others to use, for others to thrive, for others to stop this senseless abuse.

Memory loss is a thug without a care in the world – indiscriminately misusing its power to reduce, and traduce, and unfurl.

If there’s a solid end of what living life ‘un-alive’ can mend, I’ll be the first to find it out and spread it to no end.

I want all who suffer to be defended and made whole, whether one part at a time, or in total.

There’s nothing peaceful about a mind torn from who you’ve become since you were born – a new life awaits you once you’ve been shattered at your core.

I find joys, and solitude, and even means to ends – even if only to get me through and onto the undoubted next hurdle I must ascend.

A life without meaning is no life etal, so I dedicate my suffering to ease those who cannot think much if not at all…

None of us asked for a life so abruptly taken – even though we still breath, feel, think, and see… I fight for all who suffer, because it’s all that’s left in me.

Fighting gets me through the day, through the turmoil of my plight… without fighting I’d given up a while ago because there would be no other right.

If not for fighting through each and every step of the way, I’d be lost to the darkness of memory loss’ cold, dark, cruel nights.

If not for being a fighter I’d have nothing left, because once you’ve lost it all, that’s all you can be but bereft.

One day there will be hope, safety, and something I recognize as ‘myself’ – until then I’ll keep fighting on and fill up my internal bookshelf.

Many chapters will be written, many books it will adorn, one day my life will be full again and I’ll feel much more at home.

Not all is lost, not all is gone, what little bits are left I will use to build upon.

The tragedy that has befallen me will one day make me strong… one day I’ll look back at these times and wonder how I ever carried on.

Until then I’ll keep on fighting through until my bookcase is full and life has paid its due.

17mind-master675

Thanks for reading!

Would you?

Awe and Wonder

Awe and Wonder

Would you…

Sit with me on a porch on a cool autumn night drinking cocoa and watching twinkling stars?

Hold me close within your arms as we hum the tunes of our favorite songs?

Watch in wondrous awe as the shadows of evening sun-kissed leaves dance across my hardwood floor?

Purr with my kitten as he lay on my chest being lulled to slumber by the pulse of my breath?

Cuddle me close when the thunder roars and steady my shaking as it trembles into my core?

Watch leaves with me as they fall when they’ve lost all their hue of summer, tumbling into piles of crackled plunder?

Catch a wishing star and give it to me, so I can wish for more stars as they breeze past in the sky filling me with wonder?

Wander the woods and see what I see, majestic – wild – and free?

Walk with me through this world of hectic movement and overwhelming odds, to prove I’m not alone on my journey?

Take time to sit, to listen, to inhale the scent of nature and detect the sweetest whispers of the wind in the trees?

Sit down with your parents, family, children and friends and tell them if they ever leave you, you love them and you would miss them?

Allow yourself a moment each day to rest from your life and remember to be kind to yourself because you’re doing your best?

Look once a day in your mirror saying, “I love you so dearly,” because you’re the most important person in your life?

Take a moment to listen to the fears in your heart and face them one by one so you’ll become stronger than when the fear started?

Accept yourself and all of your flaws and realize you’re perfectly imperfect, but you are made from the stars?

I would – I do – and I hope you would too.

Love,
Tara (taratbox)

Thanks for reading! 🙂

Brain Injuries for the laymen

(Cited from: http://smope.net/the-trauma-behind-brain-injury-smope/ )

When a person undergoes a traumatic brain injury, their life is abruptly overturned. This is because unlike other body parts that heal over time but, don’t affect your mind or personality, a brain injury affects your mental process and at times physical abilities.

The main issue of this injury is that most often people are unaware of the fact that they have an injury until it’s too late, as symptoms may not appear right away.

Effects of brain injury

There are two types of traumatic brain injuries affecting mental health:

  • Mild- When a person loses consciousness and becomes disoriented for less than 30 minutes, this is called mild traumatic brain injury. Doctors often overlook mild brain injuries. But, it causes a host of problems for the person like difficulty in processing things, memory issues, fluctuations in mood, not being able to pay attention etc.
  • Severe: Severe traumatic brain injuries is when the patient loses consciousness for more than 30 minutes and loss of memory that lasts for more than 24 hours after the injury. Survivors may have limited control over their limbs, loss of cognitive function. They often require long-term rehabilitation, as the effects are so serious.

Causes

Car accidents, falls and firearms cause most traumatic brain injuries. Of the three, firearms are the most dangerous and cause most of the fatalities associated with traumatic brain injury.

Surviving the trauma

All those who have survived brain injuries have had to deal with several problems such as:

  1. Fatigue– A person with traumatic brain injuries is always tired because the brain requires more energy to heal and works harder than usual. A brain injury also affects sleeping patterns.  To help overcome fatigue try to exercise well, eat a balanced diet, avoid alcohol and caffeine and avoid napping.
  2. Cognitive symptoms– If a person is unable to focus for long, is confused all the times, has difficulty making decisions , has problems identifying objects and has a decreased awareness of his surroundings, then he is facing cognitive symptoms. The best thing to do in this situation is to consult a neuropsychologist. He will conduct some tests to find out whether the brain injury has affected your thinking.
  3. Social anxiety– It is hard for the person to concentrate in public and the noise and crowds only end up confusing the person and worrying him or her.
  4. Depression, anxiety– Most survivors have become depressed as the brain injury has affected their emotional well-being.

Caregivers 

A caregiver is a person who looks after a patient who has suffered a traumatic brain injury. There are certain principles that caregivers follow while looking after such patients:

  • Independence- The main aim of a caregiver is to help the person who has suffered such a trauma to regain their independence. They must help the person perform daily tasks and eventually let the person handle it on their own.
  • Understanding- The caregiver must be aware that no two brain injuries are the same and therefore must deal with each individual according to his specifications.
  • Strategize- Observe the tbi survivor and make a list of their abilities and deficits. Work with the survivor to understand what they is feeling and what they is most afraid of the most.
  • The sooner the better- It is best that the caregiver starts working with the survivor to achieve their goals as soon as possible after the injury.
  • Give control- The survivor should feel like they are in control of the situation and can handle it.
  • Safety first- It is important that you must keep the survivors safety as a priority and not undertake any step that can heighten the injury.

(We believe that traumatic brain injury survivors and our community need smiles and hope to continue on this journey called healing. So, we created the Smope App to help you smile and increase your hope – Got Smope?)

What they’ve forgotten to include is Sensory issues… Such as becoming overwhelmingly sensitive to light, sounds, movements, sensations on the skin, tastes, scents/smells, and many other things that are tied to emotional and physical reactions.

After my brain injury (the last one, the worst of them all) I was not only MORE sensitive than ever before.. (even with my SPD – Sensory Perception Disorder issues).. I could almost not bare anything at all. I still have issues with flickering light, whether if be very faintly coming from a lamp with a low watt bulb, or traveling in the sunlight through the woods where I live, or the soft and gentle waving of a group of leaves as their shadows dance on my floor. Everything seems un-muted, louder, brighter and amplified. All things – tastes, scents, lights, everything and anything that enters my brain seems so overwhelming. It is even worse with consistent panic attacks and overall constant anxiety. Of course, they’re all tied together and transversely cause each other and make each thing worse. It’s rough!!

Sometimes the things most people don’t notice about others, or cannot see them experiencing, are the most debilitating things us survivors go through.

We need to all be more compassionate, understanding as can be, and to be way more kind to one another in this world. Some of us are struggling by just waking up each day. Some of us are pushing ourselves beyond our own limits are forcing ourselves to be or act, or do, or say “normal” things most people take so, so, soooo, for granted.

It’s not easy living with the invisible(to most people) and silent illnesses and side-effects of brain injuries. To us, it is deafening. To you, it may seem a figment of our imaginations or being “too” whatever you wish to name it… “sensitive,” or “impractical,” or worst of all, “lazy.” None of these things are in our control. If it were, we’d chose NOT to live with it. I assure you of that.

green-ribbon-tbi

Thanks for reading. 🙂

My story – short version

I was a pedestrian struck by a car (hit and run) on 9-4-2013. It was a nightmare. Might have been an “attempted manslaughter” thing. I’ll honestly never know – to be honest – but that’s alright. I survived! I’m still here! I type WAY better than I talk. And if I could walk as well as I type, I’d be doing a lot better. My bones and nerves were affected by the impact not only from the vehicle that hit me, but by my brain injuries and ongoing (worsening) ataxia issues. It also caused two kinds of amnesia.

I’ve always had ataxia (much like Parkinson’s disease) which is “triggered” and becomes active – it is giving me all sorts of issues. Trouble speaking. Trouble with grip and muscle control. Issues with balance and horrible vertigo, and nausea. Eventually I’ll be in a wheelchair – hopefully not for a lot of years! With the right supplements and phys-rehab – with long-term treatments – I can stave it off for a bit of time, but eventually it’ll just “be what it is.” — Unless of course neuroscientists can figure out how to treat and prevent that too! (fingers crossed)

I’m guest speaking about “TBI and Balance” to a group of college students in Kansas City next weekend. They’re about to graduate the physical training programs (who may be inclined to study for physical rehabilitation.) I’m hoping to enlighten them about possible clients and patients they’ll come across during their future careers. Maybe with being well-informed about brain injury *(which more people have in America than heart diseases)* they’ll be better for the TBI survivors and their outcomes as well.

I’m working on pamphlets, booklets, and specifically created journals to give to Dr’s, ER’s, and Clinics for brain injury and amnesia/memory loss survivors to utilize. The pamphlets will have information vital to their advocacy and what they should seek next. The booklets will be for patients to use at the beginning of their journey towards long-term treatment plans so they’ll get the best of what medical care has to offer. The journals will be for long-term symptomatology record keeping as well as personal growth charting. It’ll help health-care pros to keep better track of what their patients are going through – as well as for survivors to see and know what has changed and that they have a level of control over what’s going on with them.

Tara Migraine effect

Most of us survivors feel SO out of control and that we’re helpless to our injuries and side-effects. I want and NEED to change that. I want to make a better connection for us to the medical community pros that’re responsible for our healing processes. But we as “consumers” of medical care need to be able to give them the MOST information humanly possible for those pros to be able to do their jobs as best they can for our best outcomes. It’s going to change the process of how they deal with us, and how we deal with them.

Between migraines, memory issues, concentration lapses, and totally feeling beaten and unhinged, it’s hard to keep track not only of day to day things, but of details. These booklets and journals will be a HUGE tool in the arsenal of healing and well-being.

Thanks for reading!

Brain Injury – The good, the bad, the HONEST – Part 1

There are many misconceptions about minor, major, or any in-between stages or levels of brain injuries.

All brain injuries – “Acquired brain injuries” (ABI), “Traumatic brain injuries” (TBI), Concussions, and even small impacts to the head – they all cause damage to the brain. Some old adages of information state that it is the severity or number of blows to the head that dictates the amount of damage, the severity of the damage, side-effects or long-term symptoms. This simply isn’t accurate. Even a minor bump – (ONE little BUMP) – to the head can cause a life-long ripple effect in the health of the brain.

I’ll share now my own symptoms, side-effects, and long-term issues due to my multiple TBI (closed head injuries – meaning, my skin wasn’t punctured or broken – which is actually more dangerous do to the pressure that is trapped) and how it has changed my life entirely.

I’ve had numerous TBI’s throughout my life. Many of them were “minor concussions” on the medical ranking system used by hospitals to determine how bad/damaging the injuries are. The fact that I’ve had more than one put me into another ranking system for how much overall damage has been occurring in/on my brain and the surrounding tissues.

My last and most recent TBI was rather bad. It was considered a Moderate-to-Severe concussion – TBI. What that means is, there was a lot of internal bleeding on my brain which caused a whole lot of pressure, and way too little oxygen content — which is ‘no bueno’ for the overall health of my noggin. I lost consciousness (which is another indicating factor on the medical ranking system of severity) for several hours and wasn’t taken to the ER right away, which caused irreversible life-long damage to my brain health.

(The reasons for my not being taken to the ER are not something I’d like to share because it infuriates me to no end, and I’d rather not make it about what “should or shouldn’t have happened” but rather to stick to the facts about my health and the facts of brain injuries.)

My last TBI caused amnesia. I cannot (literally can NOT) remember anything from before the accident, and I have a lot of trouble remembering new information for very long. I can only remember new information (post-accident) for several months, or only a few weeks, and sometimes only a few days. Some things however, if I write things down very accurately and vividly (with a whole lot of description) I can force myself to ‘remember’ through re-reading it often. Really only parts of things are retained that way. Eventually I hope things will start conglomerating and sticking around better, and for longer amounts of time. 🙂

Here is some information about the types of amnesia that have currently been given diagnostic associations and names:
( Cited from – http://www.medicalnewstoday.com/articles/9673 – Last updated: Monday 27 July 2015)
[The day before my birthday!]

Types of amnesia

There are many different types of amnesia. Below is a list of the most common ones:

  • Anterograde amnesia – the patient cannot remember new information. Things that happened recently, information that should be stored into short-term memory disappear. This is usually caused by brain trauma (brain damage from a blow to the head, for example). However, a patient with anterograde amnesia can remember data and events which happened before the injury.

  • Retrograde amnesia – often thought of as the opposite of anterograde amnesia. The patient cannot remember events that occurred before his/her trauma, but remembers things that happened after it normally.

  • Transient global amnesia – a temporary loss of all memory. The patient with transient global amnesia also finds it very hard to form new memories – he/she has severe anterograde amnesia. The loss of past memories is milder. This is a very rare form of amnesia. A transient global amnesia patient tends to be older, and usually has a vascular disease (a problem with the blood vessels).

  • Traumatic amnesia – memory loss caused by a hard blow to the head. People who lose their memory as the result of a car accident may have traumatic amnesia. People with traumatic amnesia may experience a brief loss of consciousness, or even go into a coma. In the majority of cases the amnesia is temporary – how long it lasts usually depends on how severe the injury is. Sports scientists say that amnesia is an important indicator of concussion.

  • Wernike-Korsakoff’s psychosis – this type of memory loss is caused by extended alcohol abuse. The disorder tends to be progressive – it gradually gets worse and worse over time. Patients with Wernike-Korsakoff’s psychosis also tend to have neurological problems, such as poor coordination, and the loss of feelings in the toes and fingers. It can also be caused by malnutrition. It is linked to thiamin deficiency.

  • Hysterical (fugue) amnesia – this is a very rare phenomenon. Patients forget not only their past, but their very identity. A person could wake up and suddenly not have any sense at all of who they are – even if they look in the mirror they do not recognize their own reflection (the person in the mirror is a stranger). All the details in their wallet – driving license, credit cards, IDs – are meaningless. This type of amnesia is usually triggered by an event that the person’s mind is unable to cope with properly. In most cases the memory either slowly or suddenly comes back within a few days. However, the memory of the shocking event itself may never come back completely. It is important that doctors diagnosing patients for epilepsy eliminate this type of amnesia from their list of alternative illnesses.

  • Childhood amnesia (infantile amnesia) – the patient cannot recall events from early childhood. Experts say this type of amnesia may be associated with language development. Others say it is possible that some memory areas of the brain were not fully mature during childhood.

  • Posthypnotic amnesia – events during hypnosis cannot be recalled.

  • Source amnesia – the person can remember certain information, but does not know how or where they got that information.

  • Blackout phenomenon – amnesia caused by a bout of heavy drinking. The person cannot remember chunks of time during his/her binge.

  • Prosopamnesia – the person cannot remember faces. People can either acquire prosopamnesia, or be born with it.

So there’s all of that….
I’m fairly certain that before my latest and most horrible brain injury, I had a bit of “Childhood Amnesia” as well due to some emotionally traumatic evens.

Anyhow – along with the amnesia, I also have “Post Traumatic Brain Injury Syndrome” (PTBIS) which I will now share information about:

( Cited from – www.msktc.org/tbi/factsheets/Emotional-Problems-After-Traumatic-Brain-Injury – Model Systems Knowledge Translation Center (MSKTC) – Spinal Cord Injury (SCI) – Traumatic Brain Injury (TBI) – Burn Injury (BURN) )

Emotional Problems After Traumatic Brain Injury

Based on Research by TBI Model Systems

Brain injury and emotions

A brain injury can change the way people feel or express emotions. An individual with TBI can have several types of emotional problems.

Difficulty controlling emotions or “mood swings”

Some people may experience emotions very quickly and intensely but with very little lasting effect. For example, they may get angry easily but get over it quickly. Or they may seem to be “on an emotional roller coaster” in which they are happy one moment, sad the next and then angry. This is called emotional lability.

What causes this problem?

  • Mood swings and emotional lability are often caused by damage to the part of the brain that controls emotions and behavior.
  • Often there is no specific event that triggers a sudden emotional response. This may be confusing for family members who may think they accidently did something that upset the injured person.
  • In some cases the brain injury can cause sudden episodes of crying or laughing. These emotional expressions or outbursts may not have any relationship to the way the persons feels (in other words, they may cry without feeling sad or laugh without feeling happy). In some cases the emotional expression may not match the situation (such as laughing at a sad story). Usually the person cannot control these expressions of emotion.

What can be done about it?

  • Fortunately, this situation often improves in the first few months after injury, and people often return to a more normal emotional balance and expression.
  • If you are having problems controlling your emotions, it is important to talk to a physician or psychologist to find out the cause and get help with treatment.
  • Counseling for the family can be reassuring and allow them to cope better on a daily basis.
  • Several medications may help improve or stabilize mood. You should consult a physician familiar with the emotional problems caused by brain injury.

What family members and others can do:

  • Remain calm if an emotional outburst occurs, and avoid reacting emotionally yourself.
  • Take the person to a quiet area to help him or her calm down and regain control.
  • Acknowledge feelings and give the person a chance to talk about feelings.
  • Provide feedback gently and supportively after the person gains control.
  • Gently redirect attention to a different topic or activity.

Anxiety

Anxiety is a feeling of fear or nervousness that is out of proportion to the situation. People with brain injury may feel anxious without exactly knowing why. Or they may worry and become anxious about making too many mistakes, or “failing” at a task, or if they feel they are being criticized. Many situations can be harder to handle after brain injury and cause anxiety, such as being in crowds, being rushed, or adjusting to sudden changes in plan.

Some people may have sudden onset of anxiety that can be overwhelming (“panic attacks”). Anxiety may be related to a very stressful situation— sometimes the situation that caused the injury—that gets “replayed” in the person’s mind over and over and interferes with sleep (“post traumatic stress disorder”). Since each form of anxiety calls for a different treatment, anxiety should always be diagnosed by a mental health professional or physician.

What causes anxiety after TBI?

  • Difficulty reasoning and concentrating can make it hard for the person with TBI to solve problems. This can make the person feel overwhelmed, especially if he or she is being asked to make decisions.
  • Anxiety often happens when there are too many demands on the injured person, such as returning to employment too soon after injury. Time pressure can also heighten anxiety.
  • Situations that require a lot of attention and information-processing can make people with TBI anxious. Examples of such situations might be crowded environments, heavy traffic or noisy children.

What can be done about anxiety?

  • Try to reduce the environmental demands and unnecessary stresses that may be causing anxiety.
  • Provide reassurance to help calm the person and allow them to reduce their feelings of anxiety when they occur.
  • Add structured activities into the daily routine, such as exercising, volunteering, church activities or self-help groups.
  • Anxiety can be helped by certain medications, by psychotherapy (counseling) from a mental health professional who is familiar with TBI, or a combination of medications and counseling.

Depression

Feeling sad is a normal response to the losses and changes a person faces after TBI. Feelings of sadness, frustration and loss are common after brain injury. These feelings often appear during the later stages of recovery, after the individual has become more aware of the long-term situation. If these feelings become overwhelming or interfere with recovery, the person may be suffering from depression.

Symptoms of depression include feeling sad or worthless, changes in sleep or appetite, difficulty concentrating, withdrawing from others, loss of interest or pleasure in life, lethargy (feeling tired and sluggish), or thoughts of death or suicide.

Because signs of depression are also symptoms of a brain injury itself, having these symptoms doesn’t necessarily mean the injured person is depressed. The problems are more likely to mean depression if they show up a few months after the injury rather than soon after it.

What causes depression?

  • Depression can arise as the person struggles to adjust to temporary or lasting disability and loss or to changes in one’s roles in the family and society caused by the brain injury.
  • Depression may also occur if the injury has affected areas of the brain that control emotions. Both biochemical and physical changes in the brain can cause depression.

What can be done about depression?

  • Anti-depressant medications, psychotherapy (counseling) from a mental health professional who is familiar with TBI, or a combination of the two, can help most people who have depression.
  • Aerobic exercise and structured activities during each day can sometimes help reduce depression.
  • Depression is not a sign of weakness, and it is not anyone’s fault. Depression is an illness. A person cannot get over depression by simply wishing it away, using more willpower or “toughening up.”
  • It is best to get treatment early to prevent needless suffering. Don’t wait.

Temper outbursts and irritability

Family members of individuals with TBI often describe the injured person as having a “short fuse,” “flying off the handle” easily, being irritable or having a quick temper. Studies show that up to 71% of people with TBI are frequently irritable. The injured person may yell, use bad language, throw objects, slam fists into things, slam doors, or threaten or hurt family members or others.

What causes this problem?

Temper outbursts after TBI are likely caused by several factors, including:

  • Injury to the parts of the brain that control emotional expression.
  • Frustration and dissatisfaction with the changes in life brought on by the injury, such as loss of one’s job and independence.
  • Feeling isolated, depressed or misunderstood.
  • Difficulty concentrating, remembering, expressing oneself or following conversations, all of which can lead to frustration.
  • Tiring easily
  • Pain

What can be done about temper problems?

  • Reducing stress and decreasing irritating situations can remove some of the triggers for temper outbursts and irritability.
  • People with brain injury can learn some basic anger management skills such as self-calming strategies, relaxation and better communication methods. A psychologist or other mental health professional familiar with TBI can help.
  • Certain medications can be prescribed to help control temper outbursts.

Family members can help by changing the way they react to the temper outbursts:

  • Understand that being irritable and getting angry easily is due to the brain injury. Try not to take it personally.
  • Do not try to argue with the injured person during an outburst. Instead, let him or her cool down for a few minutes first.
  • Do not try to calm the person down by giving in to his or her demands.
  • Set some rules for communication. Let the injured person know that it is not acceptable to yell at, threaten or hurt others. Refuse to talk to the injured person when he or she is yelling or throwing a temper tantrum.
  • After the outburst is over, talk about what might have led to the outburst. Encourage the injured person to discuss the problem in a calm way. Suggest other outlets, such as leaving the room and taking a walk (after letting others know when he/she will return) when the person feels anger coming on.

[[[[Did I mention this is a very LONG post???]]]]

Since I am exhausted – also part of the side-effects of TBI – I’ll leave this the way it is and write “Part 2” later on.

I’m hoping that sharing this information – once all of the parts are finished – will assist the world at large to truly comprehend how life changing something as simple as three words (traumatic brain injury) can really be. It doesn’t just affect the survivors. It affects their families, loved ones, the ability to work, socialize, have a normal sleeping schedule, and the overall health and wellness of the survivor (both emotionally and physically.)

It affects every single part of life. Some of the most simple and taken for granted portions of everyday life is altered so drastically that the survivor will never return to the “normal” they were before their injury. That’s really the whole point and reason for sharing ALLLLL of this plethora of information.

(As an example) Having a child changes your heart/emotions, your priorities, your habits, your reasons for your choices, etc – but a brain injury does the same things for many intricate different reasons.

Brain injuries don’t just alter capabilities (skills) and limitations (things that cannot be controlled or corrected without rehabilitation, if at all,) they alter the entire structure of the mind and the lives of those living with such injuries. What you used to enjoy or get excited about can dramatically change. The things you find tasty and delicious before a brain injury could disgust and appall you after one. I could go on and on – but I’ll bet you’re already eye-tired and would love to take a break (like I’m feeling right now.)

I’ll post “Part 2” soon! Thanks for sticking with me and continuing reading. If you’ve made it this far, you undoubtedly do care about the facts about brain injuries and whomever it is in your life who is affected/surviving one. Thank you for your diligence and concern. I believe that education and honesty about not just the “clinical jargon” but the personal journey brain injury survivors really go through is vital to breaking the stigmas and unrealistic expectations about how much/ how quickly-slowly / and how well anyone with a brain injury can heal. The BEST thing you can do is not expect too much from the survivor. Most brain injuries never fully heal, and the survivors will never have the same “normal” they had before their injury. (No, that’s not very encouraging, but it’s damned honest – and that’s something that needs to be very clear.) There is NO “Cure,” there has never been a “Full Recovery” from a brain injury (TBI’s most especially,) and there may never be either.

That doesn’t mean you shouldn’t support, love, and encourage someone with a brain injury. But – if you do encourage them, do so with accurate, realistic, and non-expectation. Do not say to a TBI-survivor that they’ll “be back to normal” in any amount of time. The truth is, it takes several years to heal to a certain point, and then the healing plateaus and the brain starts “compensating” instead of continuing healing. The “new normal” is what should be encouraged. Accepting that there is no cure, no full recovery, and no “old normal” is nothing short of awesomely realistic and fair to the survivor. Giving them unrealistic expectations or false hopes is damaging. A survivor cannot adjust and adapt if they expect false hopes to “come true” for them and their injury. It truly is a life-long change. One that everyone in their lives must accept and become familiar with. 🙂

Again – THANK YOU for reading all of this…. thank you, thank you!

Stormy nights – In awe and wonder

Sometimes, when the lightning is so bright it seems the sun decided so speed past the earth repeatedly, or when the thunder quakes so deeply that every bone in me vibrates, I wonder what it’s like to be the sky, the thunder, the wind, or the rain.
I wonder with glorious curiosity how quiet us humans might seem to them.
How small yet steady we might look to them with our wide eyes and shivering skin.
I wonder if they see us as obstacles to their paths, or observers, or participants.

Nights like this, where I feel the pressure of the changing wind in every joint, the booming thunderous roars reverberating in every bone inside, and the rain cold and sudden on my skin, I am reminded that I am a participant, an observer, as well as in awe.
The rain still strikes the ground after rolling across my skin.
The wind still moves as it twirls around my body.
The thunder still rolls through the land shaking everything.
The lightning shines brightly on anything above ground.

In awe…. in awe and wonder.

by: starburst565 on deviantart

“Prologue” by: starburst565 on deviantart