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!