Wednesday, January 26, 2011

Giffords and my TBI

Some of you have said something or asked me about the Giffords thing.  Here is some of my thoughts/input and just general rambling.

Watching the whole Giffords things is easy and hard at the same time.  It definitely has effected me.  Is this the right "effect" to use?  Damn crazy english language!  :)
But honestly, it is weird.  I feel like I am getting to see/hear kind of what I was like.  Sure I dont remember my beginnings thanks to a coma and general brain scramble confusion so it is weird to see what is going on with her. It is kind of like seeing my own beginning!  The one thing that sticks with me and I have posted on FB is the whole pic when she is in her bed outside of the hospital.  The feeling of being outside when I can actually remember it was awesome!  I hope she can remember the feeling if not the exact moment.
It is also kind of hard watching it and I sometimes get angry and sad at the same time about the whole thing.  Angry because sometimes the news feels like they are giving her 100% chance of hopefulness that all will be good and she will be "normal"  and then it feels like there is no hope for her at all.  I get frustrated because I have lived it, I do live it and I know the reality!!
She will not be the same.  Yeah, we don't have the same TBI, TBI is not the same for any of us, but there is hope for her to live a good life.  Just have to be patient and not a patient!
I cant even really put into proper words the feelings I get watching and hearing about her.  But it is bittersweet.  Part of me hopes that now that it is happened to someone in government and not "just" a Vet, NHL, or NFL player that bigger better things will be in place for those us that survive this.  That it will make it more real and more important.
Maybe it will  bring into light that those of us that have it are important and we are people.  That we are not "normal".  That we do  have problems even though they cannot be seen.  That maybe I won't feel like I have to wear a bandaid on my forehead to remind people that hey, I do have something up with me.  That some of the new parts of me are ok and y'all are just gonna have to deal with it like I do.
And seeing all of this makes me almost OCD about my TBI.  I am becoming more and more obesessed about it and telling people about it and just trying to be the best new version of me.
I hope that I do not need any more surgeries.  After each surgery I notice more differences in me.  But I do still rock!!!  I do like some of the differences and some of them just frustrate me.  But I am slowly accepting that I will never be the full old me and I have to learn more so that I can be a productive member of society again.

    Peace out!

Wednesday, January 19, 2011

Music rocks

Not really, just trying to get you all to pay attention.  :)

My phone I got since my accident broke and I  had to get another one and learn yet another new phone.  OMG makes my head asplode!!!  I hate when smart phones beat me in smart tests.  I thought I was supposed to be SMRT.  lol.  But the Droid is totally worth it for the fact that it is also an MP3 player.  I really can't explain what music does to me since my scramble but it makes me feel better and helps me concentrate a bit and I bop around with some energy instead of being like Eeyore.   And it is also nice to use it to block out the world.  Sometimes I just need to escape and get away from it all so I go to my pretend music world.

Maybe once I get back to my life in the Burgh I might be a bit different.  There is just a lot of stress going on in my life at home with parents.  So sometimes I just need to escape for my sanity.  It is hard to still try to learn this version of me and have added stressors of others I LOVE being sick.  I am just glad that I am medicated for some things or I would be off the hook insane right now with anxiety, anger, and grief.  But I am being a rock for those that need me to be one.  I am WW after all.

I can remember words to songs.  My whole world needs to be a musical.  Now that would be awesome.  And everyone has to know the same dance routines and bust out in dance with  me.  My pretend world is friggin awesome!!!!!

And since I am in ramble mode...hello not being able to have a linear conversation...but I digress AGAIN!...fml.  So with this music thing.  I can sit and listen to music and stare at a wall and be content.  Or have the music going and do 120000 other things like clean, do nails, etc...anything.  But I cannot sit and watch tv.  No concentration for that.  Crazy.

My Pittsburgh peeps that I see on the regular, Mike, Marieke, Rich, Shannon, Will, HOLDEN, can't wait to see y'all again.  Yeah I will put you all out there....Be glad you are not on my other list.  LOL.

    Peace out

Monday, January 3, 2011

my own psychotherapy. glad I was in the MH field. ANGRY LETTER

To whom it may concern.  APW (will not use full name though I would love to put you on BLAST!!!!!!!)

Fuck you!  You have been able to continue to live your life and yet mine has been put on pause.  Or maybe screeched to a halt.  I have no memory of how this happened.

You got to graduate from law school.  You got to continue to see your friends, have a social life, maybe get a girlfriend, be independent, continue living.

I have had months of rehab.  Speech Therapy, Cognitive therapy, Occupational Therapy, Physical Therapy.  I have had 4 brain surgeries.  Surgery is my new normal.  How awesome is that????  Surgery doesn’t phase me.  I have no fear of it.  I am the social butterfly with the docs and nurses in pre-op.  I am the one laughing.  I have the pre-op procedures memorized.  I am pretty sure I can perform my own surgeries if it wasn’t for the damn anesthesia.

Post op doesn’t bother me any more.  I have all of the neuro tests memorized so I am pretty sure I am not giving them the results they want.  I answer their questions before they begin.  Yes I know Obama is president, I can give you the month and year but don’t ask me the date or what day of the week it is.  I know I am in Presby hospital, or Mercy hospital, or Montifore hospital.  It’s a choose your own hospital adventure.  I can touch my nose with my fingers and my eyes closed though it may take me a second to orient myself.

I know what it is like to feel off balanced without being drunk.  It is my daily feeling.  To walk with an unintentional swagger.  It’s not a cool swagger.

I know what it is like to have a perpetual eye twitch.  To have a sore shoulder from it being broken and a perpetually cracking wrist from that being broken. What, did you scrape a knee or something while I got the crap beat outta me and my brain scrambled?  Hope you got a nice band aid!

I can go on and on and on with my anger towards you.  When this first happened I was not that angry with you.  I accepted we both fucked up I guess.  My one neuropsychologist was angry with me for not being angry at you.  He would be proud of me now.  The ball of anger that lives in me is frigging pathetic.  I want the old me back!!  Yet I don’t know if I can get her back.  I try, but it seems like a lost battle.  So, again. APW, fuck you!!!!!  May your day come.  Can’t wait for March and I hope to god you get what is coming!!!

I an go on and on with how  my life has changed, how I have changed (the ways I at least recognize) but I would like to wait until the day I see you.  So you can hear the pathetic sadness and hear the full blown rage.  BRING IT and Fuck you one more time.