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. 

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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,