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.