Sunday, April 6, 2014

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,