Wednesday, April 23, 2014

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

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.

Sunday, April 6, 2014

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.*

 "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.)

 "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.

 "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.)

"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,