A poem titled What's This?

"What's This?" By, Tara Davidson...

There are almost a thousand scars on this body of mine,
I know not how they got there...
There are hundreds of aches from injuries,
I know not how they occurred...
There are millions of ideas and notions,
I know not what to do with them...
There are so many deep emotions,
I know not how to express them...
There are so many unanswered questions & puzzle pieces,
I know not where they fit...

There are things I'll never know for sure,
for this I am entirely certain...
There are things I'll have to let go of,
for this I am entirely willing...
There are things I'll have to start to mourn,
for this I am not looking forward to...
There are losses that cannot be put into words,
for this I must assure...
There are going to be many moments of confusion,
for this I know will occur...

There are times when I'm lost and truly feel broken,
but I must continue to endure...
There are times when things will get awkward & strange,
but I must keep trying to connect...
There are times where I'll disappoint & remind you of this loss,
but I know you forgive & attempt once more...
There are times that there's no excitement or vigor,
but you remember there was before...
There are things that I cannot regrow or replace,
but I miss me as much as you do...

Sometimes things aren't fair, don't feel logical, and rip at our core,
yet we move on and grow up & try to look forwards...
Sometimes what we hope for doesn't happen,
yet we must strive to survive until we figure out the why's...
Sometimes our paths are bombed and broken,
yet we rise through our rubble and retie our dusty boots...
Sometimes this life is sad and painful - tragic for some - life-altering for others,
yet we all feel the same losses, shames, and pains...
Sometimes shattered lives turn into beautiful mosaics,
yet we fail to see the beauty of being broken & reassembled.

I lose myself every few weeks and what isn't lost is the me that's always been deep inside. The me I was born as. The me that the world, all of the experiences I've had, the circumstances I've been in, nor brain injuries I have, can alter.

No matter how scary or confusing my world gets from time to time, I must never forget that my life-essence (or soul/energy) cannot be erased like my memories have been. Nothing can take my true self out of my nature. Nothing can alter the fabric of my being except for death.

I may be a different version of me - but I'm still me, and I'm still here, and I'm still trying my best to surpass what I've been through, am going through, or ever will go through, will grace and dignity. Not falseness or ego, but truly with grace and dignity for not only the me that was erased, but for the me that I still am.

Physical Verses Mental - Memories

A physical reminder are those precious "things" that we keep to prove that someone was really, physically here and a part of our lives.A memory of the mind is one of those "intangible" things that we simply hold within our thoughts.

When we lost our house, our belongings, our physical memories just a couple of weeks before my TBI accident, it ruined any chance of - at the very least - the ability to cherish those physical memories of things that after being told my life stories, I could keep and appreciate. 

My memories of my mind are also gone. There is no real way for anyone to understand the complexities of reconfiguring a life you don't even remember in entirety. There's no depth or measure or fair comparison for me to adequately describe the ways in which it complicates, threatens, and can destroy an entire life of someone whom is still alive. 

I am still physically here, but I have nothing of my past to render meaning from. There is nothing to cherish except for the primordial emotional levels in which I contemplate my life stories told to me by 2nd and 3rd parties whom all couldn't possibly be as accurate or as fairly eloquent as my own memories could have been.

The losses I am faced with, and are still with me, cannot have the "closure" and "ending" that a fair death has. When people die, they are said goodbye to, remembered, and experienced one last time at their final resting place. I feel often times like I'm a walking empty coffin. I realize how drastically morbid and dark that would seem for someone to feel about themselves, but it's the truth.

All of the wonderful things I conceptualize, artistically and so forth, doesn't compare to the emptiness of amnesia and the loss of my life's work of collecting physical memories (which are inanimate objects of little physical value/& the simple basics that any self-sufficient adult acquires) and the literal memories of everything that had gotten me to where I was in life when this all occurred.

I am an upbeat and positive, forward thinking person... but this loss is heavy, and it is made worse when each day of my life is full of physical pains that some days I cannot even handle.

Life is effen tough -dare I even say, "unfair," but the underlying truth of it all is:
It is up to EACH of us as individuals to choose how to handle the seriously heavy and sucky things that life throws into our lives. I'm doing my very best not to just collapse under the gravity of my situation. I do my honest to goodness hardest work, every single day. I will not give up - and I'm hoping others going through sincerely rough times can muster the same willingness to thrive.

What amnesiacs (may) go through day-to-day

Here's a crude run-down of just a 'few' of the things those with memory loss issues go through:

*Agitation/Frustration: 

We can be easily frustrated because we wish to be more productive and to remember more and do better. We notice when we're not quite "measuring up" to those around us. It makes us feel so frustrated sometimes that the agitation usually looks like anger from the outside.

*Un-comfort-ability: 

We can tell in the faces and attitudes of others when we've forgotten something - even the most simple of things can cause others to react with the same agitation/frustration that we have when we're not measuring up. It causes that 'awkward & uncomfy' feeling that can linger.

*Overwhelmed: 

Not being able to keep track of the things we know are important and value tends to be quite overwhelming and overbearing at times. There's nothing more we want than to remember more and do better. When we don't, or when we try and cannot, it sends a bit of panic and shock through us.

*Helplessness: 

Sometimes that panic and shock of the inability to form lasting or long-term memories can make us feel lost, lonely, helpless, and hopeless. Remembering things is the key to productivity. If we cannot remember things properly, we know and feel that something is "missing" or "unfinished". At times it can be a bit daunting in the emotional-arena.

*Lost: 

At times, when we're at a loss for words, thoughts, memories, or solutions, we feel lost. I know when I feel lost it is usually because I've completely forgotten what I was doing, how important it may (or may not) have been, or that something I held in my memory bank suddenly vanishes.

*Confusion: 

Many times when there's missing memories, whether long- or short-term, it causes an avalanche in our minds. If we cannot piece together something that makes sense, the end-result is usually confusion (mixed with a few or all of the previous emotions/feelings.)

*Anger: 

There's nothing more infuriating than being on-path and then suddenly being derailed in mid-thought/mid-action. Let's say you were writing a very important note and in mid-sentence you completely lost your train of thought and were sitting there perplexed. After numerous times of this (or the importance level of it,) the eventual result (and easiest emotion to feel) is anger. Sometimes, it pops out no matter how demure or strong our self-control is. Sometimes we just have to express it. (Sorry y'all )

*Dismay: 

Feeling lost, confused, and overwhelmed can cause the feeling of being dismayed. It's a bit of mental shock, in my opinion. Sometimes, it just captures us and holds us in a state of shut-off. When things get too confusing or too "heavy" we are just stuck (even if only for a mere moment or so) it can feel like an eternity. Kind of like being 4 years old in the grocery store and suddenly your parent(s) are gone and you have a good cry because you have no clue what to do or how to find them.

That's just a 'few' of the things people who have memory-loss issues can feel at any given moment, of any day/night. Sometimes, (I'm not ashamed to admit this) I get "lost" on my way to use the restroom or get a glass of water... it can happen at any time. 

(Thank GOODNESS I have a loving partner (and parents) who love and guide me whenever it's needed.) 

Until next blog -Tara-

Memory vs Identity... again...

Memories are the stories that people internally tell themselves over and over to remind them who they are and why they've become the person they have grown to be.
Amnesia took those stories from me. 
Amnesia stole some of my identity by erasing those stories from my mind.

If I could get them back and have what was my life flowing through my mind again, I'm sure I'd be a different person, perhaps more like I was prior to this injury. I can't say whether that would be either good or bad, or anything... because after just over a year now, almost nothing has returned to my "memory bank" from the life I'd lived prior to this.

I mourn what I don't know, even though that sounds absurd, it is part of my daily life. I don't know what to do other than live each day to the best abilities I have and to continue onward, but I often pause and wonder what & how things would be different in my life if those memories were properly back in place instead of fragmented and obscure in the tiny flashes I have "remembered".

Nothing is certain with memories, brain injury, and the future, but I'd sure like to believe that I am still everything I'd become because of the memories I cannot recall, even though I cannot recall them. I'd like to believe that I'm stronger because of living through adversities... I'm not sure if either are true or false, and that puts me in an odd position emotionally. I feel as though I'm obligated to remember things of my past before the TBI. I feel as though I'm expected by others to be everything I was before this.

In all honesty, I'm not the same as the Tara that's been described to me. I can empathize with why I/"she" was the way I/"she" was due to the things I/"she" had to go through... but I'm not the same. I suppose not knowing me well before or since the TBI, you'd have no clue what I'm really trying to describe, but I assure you - losing memories does change people. Even though I wish it didn't.

Being called "a different Tara" and all that... it can be pretty heavy and sad. I'm me, but nobody around me seems to know me, and I don't seem to know them as well as they'd expect of me to.

Amnesia pretty much sucks...

On the positive side, this amnesia is giving anyone who wants to, another chance to get to know me and who/what I am now. 2nd chances don't come often for most people, but this has opened up a new possibility for everyone who was in my life prior to this TBI junk. I think that's something to be happy about, and I am happy about it. The people who I meant a lot to, they now have a clean slate, a new bucket for which to fill with new memories of the "new" Tara. I think it's exciting, even if it is a little strange, uncomfortable at times, and downright weird at other times - it's still a really great chance to renew friendships and extend passed the negatives that may have once stood in our way of getting closer to one another.

Silver linings, folks, everything is brimming with silver linings. ;)

Until next blog! You're not alone, and you're not being defeated unless you allow it to be so. <3 & XO's

A short conversation that sparked a bit of thought

This is part of a conversation a friend of mine and myself had via online chat:

My Friend:
"Life..."
"Why were we born?"

Me (Tara):
"Because no energy can dissipate, it can only change into something else - otherwise, I dunno..?"

My Friend:
"If someone really created us he or she is one evil asshole ... sadistic."

Me (Tara):
"Or far less "emotional" than we can contemplate..."

"Perhaps something so "intelligent" has less need of emotional aspects..?"

"There is something about knowledge that strips me of emotion, in various ways, so I'd imagine something THAT smart wouldn't have much need of any emotions at all."

My Friend:
"I am more intelligent than an ant but i don't enjoy watching it being tortured"

Me (Tara):
"True, but our nature of emotions is for self-preservation, not for creation purposes."

"What prompts humanity to "create"? I believe it is the need or want of something, not for the pure creation of it..."

This train of thought and the following conversation brought my mind to the theory of intention. We can all easily see what that is with a simple search, it's the belief that thoughts, intentions, words, etc, have energy/vibrations and that they effect the world around us.

I stumbled upon this video while searching through sciency-stuffs that I'm interested in... and I think it explains far better than I could, about how words, thoughts, and energy from within us effects water molecules and how they form crystals when frozen. I found it compelling to say the least - so I'm sharing it below.

(Dr. Masaru Emoto's HADO water crystal video)

In my personal opinion, I've felt that thoughts, words, intentions, and "prayer" does more good than harm, any day. Perhaps I'm not definitively going anywhere with this post, but I thought I'd jot it down before it escaped my mind.
Until Next Blog,
~Tara~

A bit of rant and explination

Some idiots believe that Amnesia makes someone dumb.

No, it's idiots who believe that a brain injury that causes memories to be erased somehow correlates with being less intelligent that make me believe someone is "dumb". 

Actually, the truth is - seeing everything with un-biased vision and clarity gives me a distinct advantage over most other people.

I see things for what they are, not how I have convinced myself over years and years of environmental conditioning to see things.

I don't attach emotions to subjects, events, or people...not in the ways I would if my memories were in-tact... which means I can see it all for what/how/and who they really are.

Don't underestimate the power of clear perception. You'd be surprised how very well I am aware. You'd be surprised how I keep track of everything and everyone, and all of the intricate details.

Don't 'look down' on people with amnesia, we have some very huge advantages that many other people may Never get to experience or even comprehend. (No, we're not "better than" anything or anyone... but we're definitely NOT "less than".)

I DO care about those I choose to care about - the rest of humanity has my empathy - not apathy. I just wanted to be clear on that. I'm not some sort of sociopath that doesn't feel. No, I'm quite the opposite. I feel a LOT for people I don't know & situations that make my heart quake. 

That doesn't mean that I can attach old memory-caused emotions to someone currently. That's impossible for me to do. SO - yes, while amnesia causes memories to be erased, I can still feel for people - I just make a distinction between what I feel now about someone rather than what they expect of me according to whatever past we've shared. 

There's a big difference - I'm not sure if I'm explaining it clearly - I'm sure I'm not. 

_________________________________________________________________

I'll put it this way - I cannot feel something about someone the same way currently as I would if my memories about them were still accessible. I may look at someone who had been a close friend before amnesia, and not feel the deep connection we may have had prior to my TBI. I may meet a perfect stranger and become fast friends, and feel for them the ways I may have felt for an actual old-friend. See? Make any sense at all?

I'm trying to describe something that almost nobody I know is experiencing, in ways that would make sense to someone who doesn't have amnesia, which I do have.... it's like a monkey trying to speak plant, to a plant that's never been a monkey - and that monkey's never been a plant. It's hard to see both sides clearly enough to explain things properly. 

In all honesty, I'm still often surprised when people react to certain things with (or without) emotional attachments. It astounds me the things that people truly attach feelings to - things that I don't comprehend the real reasoning for - and there's things that I'm thoroughly surprised people Do Not attach feelings to. But, we are all different, we've all experienced this world in so many varying ways and degrees.. I'm not judging others for that - no way.

I'm not perfect, I cannot see EVERYTHING perfectly, but I do see a very clear difference between my perception of how things are, how things have happened, & how things look/seem, compared to people who literally cannot see things the way I do. That's perfectly fine, until I'm called out as "less than" someone else, or "less intelligent" because of amnesia. I have to clarify - it is NOT okay to assume that memory is directly correlated to intelligence, or vise-versa. 

There are certain things about all of this brain stuff, that just may never make any sense to anyone. 

That doesn't give anyone the right or the reason to attack someone's mental-abilities. If someone had diabetes, I wouldn't assume that their taste pallet was inferior to someone without diabetes. I wouldn't assume that someone allergic to cats does not have the capacity to love animals.

There are certain aspects of our perceptions that dictate how we make decisions, while other aspects determine how we emotionally react or physically react, but memories are only a small portion of the overall ways in which our brains interpret information. Some people use Mainly memories to base their assessments and judgement about whatever this's or that's... but those of us who don't have that choice find other means of discernment. 

Let's say I used to know someone - & that someone committed a crime. I wouldn't associate that person with whatever I used to know about them, because I no longer know whatever I used to know about them. I will associate them for being a criminal. ---- And, I truly hope this clears any confusion up about my previous statement.

~*~ Until next blog ~*~

Self-Doubt and Self-Dilution

We all start out on this journey without a "fair chance" at life, and without "clearly marked" paths. This seems to be common-knowledge.
It took me a little while, but I finally saw this and had to take some time to let it truly sink-in - in order to apply it to what I'm going through and understand what this means to and for me.

At times, we all innately realize that some questions never have answers and that some instincts never get to be utilized. (Meaning: Sometimes the urges and instincts we have don't get used, the energy they're comprised of doesn't get burnt off.)

We're left feeling "incomplete" or "wanting/needing" for some unexplained 'thing' that we can't quite feel "settled" about. We're left with an anxiousness from the residues of these unfulfilled reoccurring feelings and energy not being used the ways it is meant to be used. We're left with a bit of emptiness, longing for closure, and a sense that something hasn't been 'finished'..

This is the closest analogy to amnesia, and the feelings of an emptiness, things unsaid, unremembered & unknown, and the feeling like there is no closure about losing part of myself to an uncontrollable force (TBI). There's no comfort in knowing that my memories may never return and that the things in my memories that connected me to important experiences in my past, and the people involved, may never be 'recovered'. I use the word "recover(ed)" in the sense of healing, or being made whole again. My relationships, and the memories that gave them all meaning, isn't within my mind anymore. Not only is that confusing to many who can't grasp the concept, but it's frustrating to me as the person who feels these losses so deeply.

Memories aren't just "reminders" of things once that have happened prior to now. Memories are tangible (in the mind's eye) evidence and connections to the experiences as a whole. They connect us to emotions felt during circumstances involving people who were there, or that things were talked about - etc- etc -etc... you get it. Memories are literally chords of music that comprise a song at the end of being compiled in the mind. The chords all added together make the song of our lives connecting. This is why I feel such loss. I didn't just lose memories, I lost connections, emotions, relationships, etc.
So what do these concepts and facts have to do with "Self-Doubt" and "Self-Dilution"..? Well, here's the short of it...

When there are too many unanswerable questions that start adding up, I tend to start questioning myself. I should not be doing that. Not only does it make me doubt my talents and abilities, but it puts fear into me that I'm not fully doing all I can to make myself and my life better. The last part is simply untrue - I'm definitely doing all I can to improve my situation and my health. I'm also doing my best not to harm others in the pursuit of my own happiness and purpose.

I've been seeing others whom are not so wise on this notion. People whom are destroying themselves, one doubt-filled thought after another. Each thought poisoning their ability to use their passion for what they truly believe it should be applied to. DON'T let this happen to YOU.

On the journey for "making sense" of things, don't over-think things too much. You might find yourself doubting Yourself! That isn't healthy, and it isn't productive. Focus on what's actually happening instead of trying to make sense of everything else that has already happened. You won't find answers for the future by staring into the past. It doesn't work this way, even though we'd think that logically it would.... it simply doesn't.

Don't dilute yourself by focusing on the things you're missing or have lost. Focus on the opportunities to have whole new relationships and experiences to build upon. Let your friends and loved ones know that you want a "fresh start" with them - at least they know you still want them in your life, and if they're willing to go forward, they're probably worth staying friends with! :)

Identity, how hard it is to convey what I'm going through

Truly getting someone to understand an experience (ongoing experience) is one of the hardest things for us Human Beings to do... here are my thoughts about it:

If y'all didn't know, I'm in a few groups that are specifically for people like me, or people helping people like me, with TBI's, brain injuries of all kinds...

I try and assist with advice where I have experience, as often as possible, but I find myself asking more questions internally than I feel I am able to answer. Sure, this happens all of the time, to pretty much all of us (even y'all without brain issues) & sometimes pretty often.

The thing is, though, despite frustrations about stuff that nobody can crawl in and answer for me... I find that most people seeking answers about helping themselves or others with brain injuries, well, we're all in-the-dark about how to truly express what we're experiencing, what we're seeing others experiencing, or how to adequately convey how it can affect our lives in all-encompassing and long-term ways.

None of us can experience what someone else is, no matter how much we care for them, no matter how much exposure to them we have, and no matter how much empathy we feel with them. We simply cannot understand and comprehend every aspect of an experience someone else is having. Impossible (as of yet.)

How then, is a medical community full of anxiously awaiting professionals supposed to clearly see/know what it is we're actually going through in our day-to-day lives?

How are our Dr's supposed to know what we mean by, "I can't sleep when I need to" or, "I'm not eating well"...? Both of which could mean SO many different things for each and every patient with numerous and deeply differing brain injuries that each affect us all differently.

"I can't sleep when I need to" could mean to me that 'I simply cannot fall asleep no matter how tired I am...' and to someone else it could mean, 'I fall asleep but cannot stay asleep' - which are two wholly differing things.

I cannot help but wonder how in the world any of us has kept of surviving brain injuries, but I'm sure glad we have... I'll be even more grateful to be alive when the medical community fully comprehends how intensely life-altering brain injuries are to the patients, and especially to anyone who is needed in order to help them to survive life with a TBI.

Dark Days of Headaches and Insomnia

Sometimes sleep eludes me, and the pain that follows makes me want to be asleep for months at a time... or until the pain stops.

Today's somber post is about pain associated with TBI (traumatic brain injury) & PCD (Postconcussive Disorder) :

Not all headaches are felt equally. Some people have minor aching, some have throbbing, some have nausea, some have light &/or sound sensitivity, some keep you up at night, some cause dizziness... etc... sometimes though, the headaches are all of thee above, and then some. These all-encompassing headaches are unbearable.

The 'all-encompassing' headaches are the ones I am plagued with.

I'm a firm believer that BEFORE subjecting myself to medications (which I find to be quite extreme) I try homeopathy, aromatherapy, light and sound therapy, and touch-therapy First. If all of these fail, then I know I'm not out of the woods just yet.. there's always a pill to take that will dull the roar of these astoundingly painful headaches... but I hate them -I know, I used the word "hate" which I don't like to do, but - - - I Hate medicines. Meds make me feel more ill after I've taken them, even if they do what they're meant to do. In this example, pain medication taking away pain, but giving more undesirable results instead.

Seems sometimes, that no matter how careful and healthy you're being, and no matter what you do, you'll still have to struggle. This has been my case, so far.. sadly. I truly hoped somehow that I'd be able to cheer people up about such an uneasy term of life. In this case, head injury and what happens after the fact. Amnesia - well - we all are aware that not even the most adept Neurologist can "fix" the brain or even know entirely all of the brain's functions and how exactly they work together. I can't speculate how to "fix" amnesia, and I'm still trying to figure out HOW to LIVE WITH IT.... it's NOT easy.

-Reduction of my social interactions has helped, but it's also made me very lonely.
-Reduction of stress only causes MORE stress, because those around me who don't understand what I'm experiencing, don't want to change their habits just to suffice to my issues... which makes sense. *(I know I'd do my best to help someone if the situation were reversed, but I'd feel kind of obligated - as in, I'd do it, but I wouldn't be happy about it. We ALL know how that ends up most of the times. With bitterness and sour feelings.)
-Reduction of stressors, well... pfffft! That's about as easy as finding an honest politician. ( ha! ) Stress is everywhere, and the things that cause it are what seemingly keeps America alive. (Just my jaded opinion here, don't take what I say as gospel.)

In all, I'd LOVE to tell everyone who's experiencing these things that there is hope out there, a solution to this ever-evolving problem, but, I think it is a personal-circle issue now. The Dr's have all told me there's no "fixing" my headaches, body pains, nerve damages, or my amnesia/memory issues, so I'm forced to find ways to make my own life better. I'm not sure HOW to, but I'm trying with all my might to make this life of mine bearable enough to have a quality of living.

With cancer that is returning, and all of the things it's caused in my body, on top of this head injury stuff and memory loss, I'm not sure how I manage to even write in this blog once or twice a month.

I guess I'm just venting here.... 

Some great information I've found about 'THE HUMAN MEMORY'...

I've done MONTHS of research, and finally stumbled upon this website about the brain.

There are numerous websites out there, but I've finally found one that I could understand, and follow. (Both are rare, when it comes to cerebral/brain issues.)

Anyhow, here's the link. Please let me know if any of this has been found useful to you, or for your loved ones living with Amnesia, TBI, and all of the plethora of other brain-injury, brain-altering experiences, illnesses & injuries.
Amnesia & Sensory Disorders 
http://www.human-memory.net/disorders_amnesia.html

I truly hope this helps someone, anyone, even a little bit. I know it's helped me to better understand how my body works, and that it's not my fault my brain is injured and doesn't respond in ways I expect for it to. I'm not messed up, I'm simply healing - and healing can cause some strange things indeed.

Instructions NOT Included... LOL

5 Things Not To Say To Someone With Amnesia:

1- "Hey, Remember.....(insert any question at all, here!)?"
Really you guys? We have AMNESIA - a memory keeping and forming injury.
Ha! C'mon... use your head sillies!!!
(It's starting not to bother me so often, but it's still REALLY awk-warrrrd. LOL.. Plus, it's a HUGE disappointment when we see the looks of disappointment & longing on YOUR face. It hurts, a LOT.)
Hey, to be fair - I know you're just really hoping that perhaps they still DO remember such-&-such event/experience, but let them ask you if you remember such-&-such instead... It's a lot less stressful on both parties.
*You might not get so disappointed (like you would by asking them, & them not remembering - & possibly getting upset at you for it..) if you just allow them time to come to you about stuff in their own time/ways.*

2- "Your favorite things are..._____, _____, _____."
Those things might have drastically changed since the incident so, unless you've been asked to tell things like this than you probably should just let those things happen naturally and come to light in a more organic way (the same way them asking you if you remember 'such-&-such'.)
Shoving too much information onto/into someone causes overload.
The amnesiac person is already completely overwhelmed & overloaded all the time anyways.
(A Little at a time... a little at a time..... that's your new mantra, guys.)

3- "It's okay, this (random person they don't know) had (this random result that has Nothing to do with the amnesiac person you're talking with).. OR their personal injury/condition"....

..ya, that's NOT helpful, and often confusing and hurtful because it sparks a tiny flame of hope that if NOT fulfilled creates a wildfire of disappointment, self-judgments, and self-ridicule [why didn't ___result happen for me?.... etc, etc, etc.] No two injuries or experiences with TBI/Brain Injuries are the same. A professional Neuroscientist can confirm that.

4- "It could be worse"...
REALLY!? And YOU know this HOW? ;) LOL
There are worse things than death (which is what the memories had happen,) dismemberment (which amnesia sorta kinda is, inside/from your own self and everything you've ever known,) or torture.... (which amnesia really kinda super is.)

You honestly don't know what you're saying when you say that..
That's like saying to a soldier's wife who's husband died in combat, "He died for you, Ma'am"... when in actuality that's the furthest from the truth, nor is it comforting!
(Don't belittle things you're not personally going through. My hangnail -vs- your hangnail, could be the difference in my paper-cut -vs- your open-heart surgery.. okay? Or vice-versa. Nobody truly knows how deeply any one thing effects any other person - or why - but respecting that it does effect them, makes ALL the difference.)

5- "It'll get better"....
Ya, each day is it's own struggle, and there's nothing BETTER about today than yesterday - Different? Yes. ..Better? No, not so much.

 

Every situation on earth does not have instructions accompanying the aftermath. (Although I'm sure the majority of us would wish they had!)

There's no "right" way to help someone. . .
Just be loving, be THOUGHTFUL (not thoughtless) and maybe even do a tiny bit of research?

I dunno... If I'm looking for solutions, I actually LOOK for the solutions. I take avenues that might be wrong, but look down them anyhow just in case there's something useful - otherwise, I try to either ask the source (the person I'm trying to be helpful to) or ask a pro (in this case, a bunch of them, online & in person, too.)

* Just do not, NOT help. * Do not, NOT say you care. * Do not, NOT at least try. Most important - DO NOT GIVE UP ON THEM/YOURSELF! *

If they receive you poorly, try again. Explain that you're just trying to be there for them, and that you care.

Definitely ALWAYS assure the amnesiac that they are safe, even though they may not feel like it, and that they're cared about.... because let me tell you guys - NOTHING is certain when you have no memories... Nothing. If you can even slightly imagine that, than you can slightly understand one moment of an amnesiacs day/night. It's rough.

Seven Long Months...

Two days ago (Friday April 4th) marked seven months since my brain injury.

It's been a long 7 months trying to not only let my family members know what's happened to me ('cuz we all live so far from each other)* but to also educate them at the same time as I am educating myself.

There are stigmas I've found about brain injuries, and especially about amnesia of Any kinds.

I actually had someone say "well isn't that convenient - you can just "fake" that you don't know something - must be nice".... never-the-less, I felt like being violent physically with them for even assuming I could control it - but - I have to realize that with medias (like movies and books) skewing the reality of amnesia it will be really hard for people to "unlearn" such lies/deceptively believable lies about it. It isn't easy to open someone else's mind about something they've been mis-taught.

It's VERY hard. I get hurt feelings a Lot because of how misunderstood all of the things I'm going through are to people who just plain don't know. Teaching them is even harder - with questions they ask that I truly don't have answers for. I have a ton of questions, myself that I have found no answers to. It's pretty harsh that I cannot provide answers to myself or those who care enough to ask them. (It is rouuuuugh.)

ABOUT "the 'used-to' syndrome"...

There are a LOT of things I can no longer do (at least not nearly close to the level of which I used to be able to.) I have attempted so many things, time and again, because I would LOVE to identify myself personally to the me I 'used-to' be.

I think apathy is a great way to heal. It puts aside the things we no longer associate personally to ourselves any longer. The key is Not to beat yourself up or judge yourself because of what has (or has not) changed since the injury.

I tortured myself for almost five months trying to "reflect" upon who I "was" compared to who I am now. It's impossible to judge yourself, especially if you're being too harsh about it.

Everyone uses the "time heals all ___" phrase, but in this case, use your time/apathy/& inability in order to really get to know who & what you are & can do right now. Don't make yourself 'promise' to have a 'goal' that you might not achieve.
I was an artist (a great one) prior to last Sept, and I'm still struggling with the whole "why can't my hands do this!?" type of stuff. It's not worth it to torture myself like this, so I'm sharing my feelings with what you're all possibly also feeling right now.
(Hope it helps to at least know you're not the only one..?)

A Short Film about Self-Identity...

I found that short film quite liberating.

ABOUT "waiting for help - often far too long"

We have a system in America that needs to stand and support people with any kind of brain injury. It is so wrong how most of us has been forced to wait for help.

That's THEE worst part! I had to wait seven months just to see a regular family physician. (Just to find out there are No psychiatrists in MO anymore, just psychologists who work with a patient's MD's to get medicines going - it is the most painful wait & Don't see, game of russian-roullette I've ever experienced.

The hardest part of finding help is actually finding it - once you have, the hardest part becomes being able to advocate for yourself something you don't even know you need. It can be and has been pretty daunting for my personal experience. (My family has been advocating for me (sometimes in vane) to get me the help I'm just now finding - and thank Gawd it's a really open and honest DR.)

I also have Asperger's and with the psychiatric nurse I was seeing for two whole months, she never knew just how messed up I really am. I always saw her on a "good note" and my real issues never came out... because of the whole face-to-face issues that come with having Asperger's.

Most Dr's (anywhere) have a really hard time understanding Asperger's, and Amnesia, and TBI, if they're not a behavioral / neurological / specialist in those fields; respectively. I believe that's why it's so hard for any Dr to truly anticipate what we go through (with or without Asperger's & amnesia) as head injury patients.

There has to be a patient-advocacy type thing going hand-in-hand with us patients and our medical communities. I'm sure that TBI's and concussions/postconcussive syndrome, and even Asperger's are relatively up-and-coming in being understood - even as I type this. They couldn't possibly have been amply trained in their doctoral schooling to adequately assess and treat every one of our cases in the fullest capacity possible... but they should proactively put forth efforts in order to best help us and our conglomerate of issues.

(I'm attempting to put my personal experience together on this blog and a page here of FB (Amnesia - Life's 2nd Chance) because I'm related to a lot of medical doctors and specialists (none of which can help me directly with this) because they can talk to their med-friends and get a slow-but-better understanding of the processes we Need in order to get better - and stay okay. (In whatever ways possible.)

I was jerked around by nurse practitioners from December until early April, whom had NO clue what I really needed. I almost lost all hope and was about to accept my fate - to be damned forever with all the issues my brain injury created/amplified. This is why I plead of you that you will "shop around" for a professional who will Listen and Respond to your needs in a timely manner. You almost have to demand it.

Do Not Give-Up... you deserve a healthy and as happy a life, as possible. You're not alone, and you DO deserve to get better... even if it takes a while.

Love, Hugs, and Hope! Until next-blog, 

Medication Nightmare

There's only one way to state this fact: Medicines only work IF you Need them.

I've been toiling with medicines that are supposed to assist my healing as well as my panic attacks and other unhealthy side-effects of this brain injury I'm coping with.

At first, I was quite open and trusting of any and all medical practitioners to instinctually know what to use and how to treat my case. Apparently there's a LOT to be learned still about head injuries and the ways in which the brain works. I'm not a rare case, unless you consider how my medical care has been handled. It has literally been nightmarish (to say the least.)

I'm not suggesting that people should Not seek outside help, or medications *if in fact they're needed, or pyschiatric help. I'm not saying that AT ALL. I'm saying: Loved ones, Care-givers, Trusted friends, PLEASE DO YOUR RESEARCH about the practitioners available in your area. Please delve into their experience, their reviews from previous/current patients, etc...?!

The medical community (as well as any others) has their own sets of downfalls, regulations, procedural "red-tape" and such, so please be patient but also VERY advocating to what it is that you're needing. The more information you give those whom are in charge of helping you, the better. If something is Not working for you, be as honest and detailed as humanly possible. Keep those daily journals active. The journals can assist those whom are in charge of helping you get better, and stay better. You'd be surprised how much info a single sentence per-day can provide for those who are going to analyse your progress.

If you have to, DO change practitioners... If you're not being listened to, or responded to in a timely manner, than DO seek others. It isn't going to harm you to seek 2nd, 3rd, or 4th opinions from others who might have more experience in cases like your own. Do not be afraid to seek out others. I know it is a VERY stressful and energy-consuming process... but it's worth it in the end to find the right care for your needs.

When you get discouraged, please remind yourself that not every Dr on earth thinks they truly are a 'god'. There is someone out there who will specifically be perfect for you and your needs.

"getting lost" & what it means to me (Tara)

Things are not always 'certain' in my day-to-day living.

By that, I mean: Sometimes I get 'lost' when I'm doing things, going places, grabbing something from the fridge, et cetera. It happens a lot more often than the normal moments of, "what was I going to the kitchen to get?" When it surpassed the "normal" section in my head and skipped straight to "life-altering" is how I knew that this wasn't just something that happens, it is in fact part of my injury and amnesia-side effects.

Not everyone has perfect memory. Matter of fact, almost none of us do. The scariest part of my "getting lost" is that I truly am lost in that moment. I don't know where I am at, what it is I'm doing/was going to do, and I'm almost always doing something slightly important (like: feeding the cat, grabbing a snack because my sugar levels are dropping fast, etc) so those moments aren't so horrific as others. The horrific moments are much worse. Just yesterday (on our way in our truck - traveling into PA for a mini-cation) we were driving along the interstate heading to our destination and I was snapping photos of things along the highway. (Mostly, I was photographing the landscapes and how pretty the mountain tops are in PA.)

I had gotten "lost" and Mark noticed. (Mark is my future husband.) Mark looked over at me and saw that I was dazed and staring off with a puzzled look on my face and fear in my eyes from confusion. He said, "Babygirly, we're on our way through Pennsylvania, and you were taking photos. You're okay." Of course, it was nice to hear that I was okay, and to be reminded of what I was doing - but at the same time, it's quite scary having to have someone else inform me of what I'm doing and where I'm at. (It's worse when it happens and I'm all alone, though. So, there's the "glad I wasn't alone" portion of 'glee' in my mind - but still, pretty intense happenings.)

After that, my photos just weren't turning out quite right - some were blurred, some were just really bad ones, and it hit me..... "What if I can't take enough photos to help me remember great trips and good times like this one!?" THAT, is a horrific thought! I instantly started to cry. Mark somehow just 'knew' why. Sometimes I think he's psychic, but maybe it's just how well he's known me before and after(during) amnesia. He just seems to always 'know' what's up with me. (Ok, to be fair, he ALMOST always seems to just 'know'... heehee)

During that moment of thinking the thought about never being able to take enough photos to "remind" me of my own memories - not such a great moment, but one that impacted me greatly - and probably always will. (Some moments of my life stay pretty clear and active in my memories, and some things just pass on through, no matter how badly I want them to stay put.)

There might not be a cure, a treatment, or even a real diagnosis for everything I'm going through, but I know - at the very least - I'm Not the only person in the world to experience these things. Some of my 'amnesia-side effects' are pretty similar to things non-amnesiacs go through every single day. Haphazardly forgetting why you're staring into the fridge... misplacing things that're really in your hand/pocket/bag... wondering what it was I just told myself I wanted to watch on Hulu... etc. Those things are as frightening as the moments of 'getting lost' that happen far too often for my comfort.

I'm still hopeful (as always) but I must remind myself that not everything will come back (if ANY thing does at all) and that I must remain calm as much as possible (which isn't easy whatsoever!) Until next type, Loveys!

Identity, how to give yourself to yourself

I've been struggling off and on with the concept of "Identity" and what it means to me.

Last night, I had to make a hard choice about my aesthetic self... my outward appearance. I made the choice to cut a portion (a large portion) of my beautiful hair off. The truth is, a portion of my skull/scalp is still reeling in pain, and the weight, movement, and having to brush my hair was just too much to handle. The pressure and constant pain it was causing was enough to say 'goodbye' to part of it.

Of course, being a natural artist, I've made it work for me, but it was still a very shocking experience, and a really hard decision to finally make after months of contending with the pro's and con's.

Identity... what does it mean?
To me, it means that someone recognizes attributes, attitudes, habits, and/or nuances in others/themselves, that they identify personally with. Either a belief or an action... whatever "it" is, it's something that someone sees in themselves as part of who they are.

Well... nothing about an individual needs to be put into a "box", but it is nice to have parameters to give a clear guideline of what I'm perceiving day-to-day. I know I'm a great many things, and none of them need to have labels or groups to fit into. I'm just me. And, being just me, whatever that truly means, is absolutely fine with me. I'm not trying to find some missing niche that I'm "supposed to fit into" or "be a part of"... I'm just me, I just do what feels right for myself and my interests/desires.

If you, or your loved one, is struggling with "trying to find themselves" please DO remind them that there's a healthy way to naturally figure it out and that they (you) do NOT need to rush it, or force it, or even seek it out really.... just let it happen, naturally and organically let yourself be who you are. You'll find that you'll just start being drawn to the things that make you individually who and what you are as a unique human being. There's no need to rush into who you are, because frankly, you already Are who you are.

I took the pressure off of myself by coming to that conclusion. Nobody (people without amnesia) rushes around frantically searching for who they are inside themselves, they just live day-to-day naturally being drawn to and being who they've always been. 

Memories being gone - well, as much as it sucks it still cannot take you out of yourself. That's something I've noticed in myself. I'm still the kind, generous, open-hearted, open-minded, all-encompassing person I used to be before amnesia - but in my case - all my insecurities and a lot of the negative attributes I clung to in the past are gone. Those leeches of despair and self-doubt are all dead and gone. In my case, amnesia "fixed" some of the most major flaws I had in my character. For myself and my family/friends/loved ones, it's been a bit of a 'blessing'. :)

Take what you've "lost" and replace it with everything you want to be right now. 
There's no rules. 
There is NO right or wrong here. 
Just have fun being who you've always been. 
Truly let your life start again... even though it's scary and really harsh. Once everything stops being so "new" and "crazy".. it'll start feeling "normal" to you, and you'll start to understand that not everything in life has a set of rules or standards to live by. 

Some things are just random and can be a positive experience instead of a tragic one. Use this "newness" to create a whole new future. (One that perhaps the "old you" might not have had the freedom to choose.) Use this as your platform for a new beginning. Use what you know about the "old you" as tools to build upon the you that you are.

2014 - Another chance to start off Great!!! :-D

The saying goes: "May the road come up to meet you, and the wind ever be at your back." 

I didn't think it could mean anything but a kind regard for easy travels... until the road literally came up and met my skull. (laughing) It's not an easy subject to write about, while in the midst of all it's horrible side-effects, but I think I'm doing rather well with the day to day stuff now. Amnesia was difficult to accept, and for the people who love and care about me to accept, but here we are. 

Many trials and harsh days and nights ago I was in a world of confusion, self-absorption, and turmoil.

Now, with the help of professionals, my loving family, my kind and generous friends, and a lot of patience on my own part - we've come to a point of choices for me. It's time for me to choose where I will focus my talents (which through many trials and errors, attempts, and failures - I've found what I'm good at) and to pursue focused talent-based education or hands-on experiences.

Yes, I'm obviously a little bit weary of starting anything new, because everything has been so new that I'm almost sick of it in ways - but I'm also feeling really excited and positive. This might be the path I'd been avoiding my whole life before the accident - before my "reset button" had been pushed by that hard road pavement out in the middle of Kansas last September. 

This is new, but it is a good kind of new. It's not the all-consuming life-shattering type of new, it's the "this is going to grow me for life!" type of new. I'm happy about this! I'm actually looking forward to pursuing my talents and expanding what I know, and how well I perform the talents I already have.

Time to start putting pieces together, and create my new book-of-life.