Saturday, December 31, 2011

Goodbye 2011

"The flower that blooms in adversity is the most rare and beautiful of all."  

Well, it is the last day of 2011.  I'd say good riddance but there's one thing in particular I got out of 2011 that I cherish.  And that's so many new friendships I made as well as the building of old friendships.  Most of my new friendships that I cherish so came out of White Stripes and the Dead Weather fan groups!!  But also my blog and WBC.  I feel so rich in good, REAL, TRUE friendships.

So I guess I'm looking forward to 2012 and hope it will bring a good year full of possibilities and happiness.  So, you might be wondering my New Year's Resolutions...I haven't really given much thought to them but here's my top five:

1.  LOSE WEIGHT!!  I'm tired of this blown up body I'm living in.  2012 is the year it's going to finally come up off since putting it on in the hospital in 2008.

2.  SAVE MORE MONEY!!!  I'm hoping eventually I'm gonna be on my own again and I'm gonna need a little nest egg for myself.

3.  SPEND MORE TIME WITH MY FRIENDS!!  I need to stop being nervous and get out there.

4.  MORE PATIENCE!!  This is a big one for me.

5.  GET INTO A MASTERS PROGRAM!!  Now this may not happen because the GRE's needed to be taken by December 15th but there are some programs that give you until sometime in February and there are some schools that don't even require them so I'm still working on this one....

I think that's a good start.  So, goodbye 2011 and hello 2012.   Also goodbye to my 20's and hello to my 30's (I turn 30 on Jan 23rd).  So maybe this really will be a good year.  Lots of changes.  But most of all I just wish I wasn't alone.  I have made some wonderful friendships that I cherish, but having a significant other helps fill a void in my heart and soul.  But thank you to all those incredibly awesome new friends I have made this year and to my old friends with which I have become closer to for all your love, friendship, and support.  You are all a star that shines through on my black sky, a light that penetrates the darkness.

(me, 2011, after 32 surgeries)

Thursday, December 29, 2011

My Twelve Days of Christmas

As many of my friends on FB know, I had a little fun with someone who did the Twelve Days of Christmas for me.  Twelve days before Christmas it started.  There was a knock at the door and it was around 8:30pm.  My parents and I looked at each other like, "who could be coming here at this hour?"  So, of course all the dogs were in a tizzy but I got up to go to the door and no one was there but something was sitting on the edge of my front porch and at first I didn't know what to make of it...

Day 1:
"Now in the song, it's partridge and pear--
When I looked, my tears were all bare!
So I ran to the store at a hurried pace,
Pears they had plenty, but no birds in the place!"
(of course the basket was FULL of pears but by the time I had the notion to take pictures of everything, we had eaten quite a few already...oops)

I smiled all night because it was just so sweet and clever.  I also analyzed it all night and every night after that.  I looked at the handwriting and thought I recognized it clear as day but that person usually calls me Sarahbeth or SB so why did they write "Sarah" on there?  Most of my friends call me Sarahbeth or SB but this one didn't so maybe it wasn't who I was thinking of OR they just didn't have enough room for the full Sarahbeth.  But then why didn't they write "SB?"  It's shortest of all.  My forensic brain was hard at work to figure out who this was.

The second day it came around the same time and I was wondering if it would continue and then there was a knock at the door.  I got up and peeked through the front door window.  No one there but I could see something small sitting on the front porch.  YAY!!  Another surprise!!

Day 2.
"Did you know two turtledoves
Are extremely hard to find?
So here are 'Turtles 'n Dove' --
The chocolate candy kind."

The third night I knew for sure something was coming cause now I knew from the numbers on the tags that they would continue all the way to twelve.  But the handwriting had changed slightly but I was still sure of my culprit :)

Day 3.
"Hens are chickens
If they are French or not!
Here is chicken soup
To heat in the pot."

This was getting fun.  And I was in anticipation every night starting around 8:00 cause they usually came somewhere between then and 9:00pm.

Day 4.
"The calling birds have all flown away.
They're visiting the South to see the view.
Instead of a call they left these few things---
Some pencils and paper--their gift to you."

I am loving this game.  What were they gonna do for "Five Golden Rings?"...

Day 5.
"Only five golden rings?
There really are more
Of gold pineapple rings
I got from the store!"

My forensic brain was hard at work again because the pineapple slices they got were "no sugar added" so I'm thinking, this person knows me well enough to get me diabetic-friendly pineapple slices.  It's definitely the person I'm thinking of.  Or did they grab it by chance?  So what's next?  Oh yeah, six geese a-laying.  So, what, they gonna give me some eggs?  

Day 6.
"Six geese a-laying some eggs quite unique.
I looked at them close and what do you think?
They are made of white chocolate candy!
Here are six for you, isn't that dandy?"

How. Fucking. Clever.  Seriously!!  Whoever was doing this was pretty damn creative and I think I got the biggest kick out of this one.  They were most delicious.  This was just too much fun.  Every night I had a smile on my face and my parents and I would brainstorm to figure out what they would do for the next one and try to figure out who it was that was bringing such joy into my evenings.  Then, that familiar knock on the door....

Day 7.
"The seven swans were swimming and having such fun,
that when I called them, they wouldn't come out, not one!
I called until my face, it turned blue,
So instead we made a pampering jar just for you."

Seriously, what a delight to have a friend like this, whoever they were.  Inside the jar was a pair of really soft socks, Cocoa Butter hand and body lotion, Burt's Bees chapstick, some Gold's lotion, gum and a few candy's.  We thought we knew exactly what the next one was gonna be.  With eight maids a-milking we thought for sure it would be some milk and cookies.  We were wrong.  It was much more creative than that...

Day 8.
"The maids were all milking,
the cows were in a fog.
So instead of milk this year,
You get 'Egg Nog'."

WHO WAS THIS PERSON?!!!  I thought for sure they would leave their name with the last one so I just had to be patient a few more days.  And did I like egg nog?  I wasn't sure.  So I tried some and it turns out, I do!  It seemed like they were getting harder and harder but this person still continued to throw me with what they did for the next piece of the song!  I mean, what are you gonna do for nine ladies dancing and ten lords a-leapin??  But this person was creative and they came up with the cleverest and most creative ideas...

Day 9.
"Nine ladies dancing was a beautiful sight,
I applauded so loud, it gave them a fright!
So sit back, and kick up your feet,
We hope this gift will be a fun treat!"

Foot massager slippers and foot scrub and foot lotion!!  A few back, we started to notice they always said, "we" so we figured this person must have a family.  Well who I was thinking of had a family, but I was dead wrong about them cause they left for Christmas!!  So now, my forensic brain is working even harder to figure out who it could be.  My mother said a name, and I said, "that's gotta be it!"  But I still wasn't 100% sure...

Day 10.
"Ten Lords were leaping, leaving behind,
A mug, hot chocolate and itunes for you to find!"

Wow!!  The itunes I have used by now and the hot chocolate as well.  I had a cup that night.  Thank you!

Day 11.
"As beautiful as the sound of 11 pipers piping may be,
This will make a piping hot pizza, to you from me!"

How clever!!  Notice the number "11" made with pepperoni in the middle?  And they left us Root Beer with it as well!  This one came really early for us to have it for dinner!!  One more and I was gonna fine out who it was...

Day 12.
"Twelve drummers drumming each on their own drum.
That's the end of the song - Aren't you wondering who it's from?
Here is your drum with popcorn as full as can be.
It's for wishing Merry Christmas to you from me!"

THEY DIDN'T SAY WHO IT WAS!!!  I was in shock!  Why wouldn't they say who it's from?!!  I went on Facebook and pleaded for this person to tell me and if they didn't want people to know they could private message me or email me but I needed to know so I could thank them from the bottom of my heart!!  Well, no response.  

Until Saturday, Christmas Eve I was upstairs with one of my brothers helping him wrap some gifts when I hear the dogs all barking (which is usually a sign that someone's at the door).  I wondered who it was but I didn't hear my name so I continued on with what I was doing.  Then my oldest brother's wife came upstairs cause our company was for me!!  And it was Sharae Hildebrandt, her guy, her three little ones and her mother whom I know well, Penny Mackay.  This was one of the people we suspected but not the first so she had us fooled.  It was so good to see them so I could give them the biggest hug and tell them how much it meant to me to have someone put so much time and effort into something just for me.  To tell them what joy it brought into my life for those twelve days.  Thank you, all of you.  You are all angels and how precious it was to me.  Thank you from the bottom of my heart.

And with their visit, they brought us a pie and the poem of the Twelve Days of Christmas...slightly altered just for me...

It Reads:

'Twas the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with care,
In hopes that St. Nicholas soon would be there.
Sarah was nestled all snug in her bed,
While visions of her and Jack White danced in her head.
And mamma in her 'kerchief, and pa in his cap,
Had just settled down for a long winter's nap,
When out on the porch there arose such a clatter,
Sarah sprang from the bed to see what was the matter.
Away to the door she flew like a flash,
Tore open the locks and threw up the latch.
When what to her wondering eyes should appear,
But a friend delivering gifts for you, my dear.
With little elf helpers, so lively and quick,
Sarah thought for a moment it must be St. Nick.
Our Heavently Father sent you His Son,
That's more precious than gold to everyone.
Oh how hard these trials are on your road,
And for 12 days we're happy to help lighten your load.
We think of you often, but don't know what to do,
So we got you a few gifts, to show our love for you.
He sent us His angels to keep Christ in our sight,
So Merry Christmas to you all, and to all a good night!"

Your 12 Days of Christmas Elves
Sharae, Devin, Ashlyn, & Blake Hildebrandt and Penny Mackay

Wednesday, December 28, 2011

Doctor Appt 12/27/11 and Christmas

Well, I had a follow up appointment yesterday and it went well.  Garrett took a look at my latest grafts and donor site and then we talked about surgery, which will be end of Jan or sometime in February.  He's going to do my lip, possibly the corners of my mouth since they're so tight, the sides of my neck where contractures have formed AGAIN and the backs of my axillas.  He's most likely going to do allograft again so that has to stay on for a week and then I go in to have the autograft done (which is the taking and using of my own skin) so I'll be having two surgeries again and be in the hospital for at least two weeks again as well.  But all in all it was a good appointment.  At the end, he sat up and came over to me to give me a hug - a sweet Garrett hug :)  So now I'm just waiting on a phone call to set up a surgery time.

On another note, I had a good Christmas.  The whole family was home together for the first time in 9 years so it had been quite awhile and it was very nice to have both brothers home.  Jake came home on Wednesday the 21st and Mark and his wife Sana came home Christmas Eve morning.  We celebrated with games, movies, presents, laughter and FOOD.    I hope everyone else's Christmas was splendid as well.

 (our 2011 Christmas tree)

 (The first night Jake was home we frosted homemade sugar cookies)

 (Jakey frosting a cookie)

 (I made these special for my White Stripes obsession)

 (Jake's beautiful curly black hair :) )

(The whole family - from left to right -
Jake, Georgia (mom), Dennis (dad) Me, Mark (oldest of us), Sana (Mark's wife) )

Friday, December 23, 2011

What Would You Wake Up With?

"What if you woke up today with only the things you thanked God for yesterday?"

Simply put, I'd be fucked.  I don't thank God everyday for anything cause I'm so damn angry and my faith in Him has diminished since my accident.  So should I pray to a God I'm not sure I believe in "just in case" or is it better for me to be real about how I feel about God?  You think about it, what would you wake up with?

Tuesday, December 20, 2011

Desperately Seeking Peace In My Soul

"I could not at any age, be content to take my place by the fireside and simply look on.  Life was meant to be lived.  Curiosity must be kept alive.  One must never, for whatever reason, turn his back on life."  ~Eleanor Roosevelt

Eleanor Roosevelt.  What a lady.  I also cannot imagine being content at any age to just take my place by the fire and "simply look on."  I believe I was meant for huge things, a life made up of dreams.  But now I don't know what I'm meant for anymore because of the accident.  It took all that from me.  I'm so mad at what happened!!  It ruined everything!  It took so much from me and halted my life.  It took away what I knew of my future and it took away my body.  It took away who I thought I was and left me with a hollow shell filled with anger and sadness.

I understand this may be an obstacle in my way that knocked me down but what kind of a God uses fire on someone as an obstacle?  Isn't that just a little extreme and downright MEAN?  Did I really need to be almost killed in order to be knocked down and lose everything?  Or maybe there is no God and it was just a mere horrible accident and the Universe was being fucking mean and extreme?  There are a couple reasons I do want to still believe in God (as of right now) and that's so I have someone to direct my anger at besides myself and to make dying less scary.  But then I ask myself, what kind of God would let something like this happen?  Yeah, ok, maybe He kept me alive on the journey to Portland but I'm not buying it.  I think more that I kept myself alive.  During my time in a coma, there was nothing.  Nothing.  And I'm not talking after they got me stable, I'm talking  when I slipped away when the EMT's got there.  That's fucking scary to me.  I didn't see a light or anything else that people have seen in near death experiences.  I want to think that's all bullshit because why didn't I get to see God or angels as I was dying?   Something to hold my faith together.  But all I got was blackness.  Nothingness.

I want to understand why this happened.  What am I meant for now?   Am I still meant for a life that is made up of the stuff of dreams or something else?  I want to believe that this was meant to be, that it happened for a reason but I'm still searching for that reason.  It's been almost 4 years and I'm still bloody searching for a reason!!!  I just don't understand.  I'm just not the kind of person to sit by the fire and look on, as Eleanor said.  I want to be bigger than life and see the world!  I want to live a life of dreams!  But the fire made it's mark on me so I don't know if I'll be able to live that life I dream about.  What does life have in store for me now?  I want to understand so I can be at peace finally.  I want so desperately to be at peace in my soul with what happened to me.

Monday, December 19, 2011

Caroling Holiday Cheer

Yesterday I went caroling with my cross stitching buddy from church and some other people from my church.  Carol (my cross stitching buddy) was over at my house a week ago last Monday and she so desperately wanted me to go caroling, which is a yearly activity my church does.  I himmed and hawed as she pleaded until finally I gave in and said yes, absolutely I would go.  Ugh.

Sunday came yesterday and I was not looking forward to going out caroling because my voice is not what it used to be (as well as my breathing) and I was nervous about the people even though they all know me and pray for me every Sunday.  So it was nonsense that I was nervous, but I still was.  The time came for Carol to pick me up and she was right on time.

We pulled up to the church parking lot to meet with everyone and my jaw dropped.  There were SO MANY PEOPLE THERE!!!  In years past, they have always come to my house to sing and we have always been able to fit all of them in my house but there must have been at LEAST 30 people in the group this year.  Great, my nervousness just got worse.  But when I got out of the car and headed toward the mass of people I heard everyone say, "OH, it's Sarah!!" and "Sarah's here!!"  That made me feel less nervous and happy that they were all so excited to see me there.  But I still hung close to Carol.  And as time went on I felt more and more at ease.

Maybe the second (?) person we went to go carol to is a member of our church and an older lady and she lives in a retirement home.  Her name is Geneva and we have a very special bond so I was excited to see her and boy was she excited to see me!!  She gave me a big hug when I saw her (holding up the line that was trying to file into her small room) and I stood next to her when we sang and I looked at her often seeing she was also looking at me.  It made my heart swell to make her so happy.  See, Geneva and I know each other first of all from when people from the church would come over and sit with me and help me if I needed something when I first came home from the hospital.  She was one of those people who came over and we always had a wonderful time together talking about all sorts of topics, but one in particular that we enjoyed together was that of politics.  She's a sharp lady and up to date on what was going on in the world so I really enjoyed my talks with her.  So we formed a special bond.  And it was so wonderful to bring holiday cheer to her and make her happy just by seeing me.  It made me happy just to see her.

At the end of caroling we went to another member of the church's home where her and her husband had food and drinks ready for us.  By this time, I was feeling OK and not really nervous anymore.  I sat in a chair and had several different people come to sit by me and talk to me.  It was so nice.  It was ultimately a wonderful time and I think I might do it again next year :)  Thanks, Carol, for pushing me to do this.

Sunday, December 18, 2011

Knocking Down Obstacles

"Most people live life on the path we set for them.  Too afraid to explore any other.  But once in awhile, people like you come along and knock down all the obstacles we put in your way.  People who realize free will is a gift, you'll never know how to use until you fight for it.  I think that's the Chairman's real plan.  And maybe we won't write the plan.  You will."  ~from the movie The Adjustment Bureau

I watched that movie last night and thought it was slightly strange, it was actually very insightful at the end.  I find that an interesting concept about free will - that it is a gift and you'll never know how to use it until you fight for it.  That perhaps God (the Chairman in the movie) does have a plan for us all but we can write our own destiny's if we just know how to fight for it and explore it and knock down all obstacles that get in our way.  So what if my accident was part of God's plan as an obstacle for me to overcome and perhaps also as a part of his plan for me to touch more people's lives than I ever would have and a more powerful way than if I hadn't ever been injured.  Could my accident be an obstacle in the path God set out for me?  Or was me being an actress as I dreamed for not part of HIS plan that He had to lay down an obstacle in my path to set me right?  Or is it an obstacle simply to test my determination and courage to continue on with the plan I set out for my own destiny with my own free will?

This reminds me of one of the keynote/motivational speakers we had at the WBC.  He was the first one to speak.  He was a pilot and flew under Reagan and Bush when he crashed and was burned.  They told him he would never fly again.  Well, long story short, he did fly again and he ended up flying the SR-71, the fastest plane in the world still to this day, even though it's retired.  They kept trying to find excuses to not let him fly and he just wouldn't listen.  Now, when flyin the SR-71, you have to wear a special suit because you're flying so high and at extremely high G-speeds.  Well, after they exhausted all their excuses and reasons for him not to fly, he finally got to fly the SR-71 and it turns out that he could withstand more G's because his scar tissue acted like an additional flying suit.  And he flew again, when they told him he never would and when people were trying to find every excuse and reason in the book for him not to fly.  He knocked down every obstacle that was put in his path.  He wrote his own destiny and fought with his free will to do what he wanted, to have what he wanted.

Needless to say, he was the best keynote speaker and it was a great story that he told so well.  He makes the fight I know is inside me want to explode out of me and knock down every obstacle that has been put in front of me since my accident.  It's time for that fight I have inside me to get stronger and time for me to write my own destiny.  My accident is unique in that it's something that needs to be put away in my past but yet something I need to carry with me so that I never forget what I've been through because it shows the fight and courage I'm capable of.  It also shows myself and others that I'm not afraid to go after what I want and the strength I own to knock down any obstacles that get in my way.  I may be afraid and weak right now, but there's a lion inside me that knows no bounds when it comes to making my own destiny.

Wednesday, December 14, 2011

"Puking" All My Anger Out

I had an interesting therapy appointment yesterday....yeah, another interesting one.  The reason I say this is because pretty much all my therapy appointments are interesting cause my therapist is quite a lady and I've always got something interesting to say so....

Anyway, we talked about how unhappy and angry I was and she replied with, "Unhappy and angry with what?"  So I listed off numerous things but she wanted to know the very root, the very core of it and after I awhile I said, "I hate this body I'm stuck in," and that's exactly what she was searching for to hear from me to which she replied, "well, why the fuck wouldn't you be?  And having someone ask you 'what's wrong?' is only icing on the cake like, 'you step inside my body for a day and then you ask me again what's wrong!'"  And she's so right.  I have EVERY RIGHT to be angry as hell at whomever it is to be mad at at the time.  She gave me an interesting piece of advice which comes from a new kind of therapy called Hokum Therapy.  She said, "why don't you try just letting your anger ride, ride it out, let it all out."  She said if writing is my expression than I should just write completely unsensored.  Just "puke" all my anger onto the page.  Now you may be thinking that I've done that several times.  But I must say, I haven't really "puked" ALL my anger onto the page (sorry for the use of the word puke but it's the best way to describe it).  I mean just let loose with everything I feel.  She said, don't be surprised if you find some violence in your writing so it would be best if I didn't let anyone read what I write when I'm letting loose my anger on the page.  So I'm contemplating whether this is a good platform to do that or if I should do it privately.  I don't want anyone to freak out at anything I write but I also want you to hear my voice no matter what the subject and for those people whom feel alone their feelings can find solace in what I write.  You may say well, people have the choice to read it or not.  Well, I WANT people to read my blog.  It gives a voice to many people, or so my friends and followers say so I don't want people to NOT be reading it.  I wish this blog had more publicity like Stephanie Nielson's.  There's an idea...wanna make me a little more happy?  GET THIS BLOG OUT THERE like Stephanie's!!!  I challenge you to share this blog with your friends and family and even acquaintances and encourage them to become a follower and share it with THEIR friends and family and even acquaintances.  And I encourage you to leave comments as I read all of them and often reply so come back to check to see what I'VE WROTE.  GET THIS BLOG OUT THERE so I can give a voice to even more people and help people who think that what they're feeling is wrong or that they're not alone.

Tuesday, December 13, 2011


First of all, as a Swede, I must wish everyone a Happy St. Lucia, even though it was yesterday but I didn't get a chance to write because I had a very busy day yesterday for once.  First, I went to lunch with one of my dearest friends, Jamie (who just wrote about me in her latest post in her blog and made me cry all the way through because it was so wonderful.  To see her blog click here.  Her whole blog is a wonderful read) and had a blast laughing till tears streamed from my eyes, then my cross stitching buddy came over for the afternoon and then I went over to another up and coming dear friend's house to watch a movie and do a pedicure.  What a day.  What a GOOD day.  

A friend of mine commented on my last post about me being like Job in the Bible, how similar we are.  But she mentioned that perhaps my anger at everything is actually Satan's plan, and not God's as I so stated.  I have a hard time believing in a God so can I believe in Satan?  Matthew Gray Gubler in the TV series Criminal Minds stated in a episode that if you believe in one, shouldn't you also have to believe in the other?  I think that's a powerfully true statement.  But I don't know what I believe in anymore.  So many things don't go right for me.  So many things don't work out.  So is that Satan's plan and I'm falling right into it cursing God all the while for Satan's work?

I don't know what I believe in since the accident.  It has tested my faith to the core of my soul.  What I know I believe in is the power of emotions and how strongly they can seize you and tie you to a chair, hands bound behind your back, so you can't fight back forcing you to either thrash about against the emotions, or give in to them.  I've been in both situations and neither one is easier than the other.  My heart and soul cry everyday whether I'm thrashing about, bound in that chair, or if I've given in.  I'm looking for answers, a way out of this quicksand of unhappiness and anger and I'm coming up with nothing like a writer with writer's block.  Or (and my dear, dear friend Mikey will appreciate this the most) as The Beatles sing, "There will be an answer, let it be."  When will my answer come?  How many more years or how many more surgeries must I go through before I get my answer?

Something in the movie I watched last night with my good friend, which was "Sylvia" (about Sylvia Plath) and towards the end, before she killed herself, she asked a friend (which I know find odd) who was reading her poetry, what do you do when your life just gets so bad and he answered, "You just keep going."  I thought, "That's interesting - that's what many of my friends tell me.  But it's such a bullshit answer!"  How do you just keep going?  You just keep living such a pathetic life no matter how unhappy you are?  Sylvia's first suicide attempt was before she turned 10 and she OD'd on her mother's sleeping pills and crawled under her house where she lay for three days unfound.  My point is she wrote about the experience that she "blissfully succumbed to the whirling blackness that I honestly believed was eternal oblivio," so why isn't it acceptable for me to succumb to that whirling blackness so I can be in eternal oblivion instead of this hellhole of a life?  No, I'm just supposed to "keep going."  How?  How I ask you?  How do I "just keep going?" like Sylvia's friend told her and like many of my friends and family tell me?  Because it WILL get better, is your answer I suppose?  I've heard that answer before, too, and I've been waiting almost 4 years for it to get better and yes, it has in terms of my reconstruction but mentally, emotionally, it hasn't, and in almost 4 years I've had to go through 32 surgeries to get this result, which still isn't good enough because my body fights me with every  contraction and scar band it can.  So when will it get better?  I beg of you, please tell me!

Monday, December 12, 2011

Never Working Out

It really sucks.  I have spent so much of this holiday season since Thanksgiving being unhappy, upset and angry.    And today is no different.  But it sucks simply because it is the holiday season.  It's Christmas time!!  I should be happy with holiday cheer.  There's a couple things in particular that have made me those three horrible feelings:

First of all my right eye, along with the corner of my mouth, is pulling again when I turn my head.  The surgery that was on my eye alone, #30, has helped when I'm looking at you straight on but it still pulled when I turned my head.  So we progressed to surgeries #31 and #32 where along with several other areas, he did a release on the sides of my neck that released into my axillas as well.  And after the surgery, when I turned my head, my eye was much better.  It still pulled a little but not nearly as much.  It felt much better.  But my damn eye has developed another contracture or strengthened one that was there already.  And while we're at it, I might as well mention that my lip seems to be getting worse for some reason.  I'm hard to understand because of my lip and this is gonna be embarrassing to say but I find I develop drool when I'm talking that can slip out.  And not to mention but eating is hard, keeping things in my mouth to chew them.  That's so embarrassing.  Makes me sound like a fucking baby.  But there it is.  And I know, my lip is scheduled to get fixed here in the next couple months but who knows if it will work this time?  I've had it worked on once before and boy did that turn out to be a disaster and then the second time technically it didn't get worked on because there wasn't enough skin in my tissue expander to reach it.  So what's he got in mind this time?  I'll find out on the 27th of this month when I have a follow-up appointment with him and to schedule to the surgery.

Another reason I'm upset, unhappy and angry is because I don't think I'm gonna make it to school this next fall for my Masters.  I gotta take the GRE's and the deadline for most schools, pretty much all good schools, is the 15th and I haven't had enough time to study.  The GRE's are like the SAT's but instead of trying to get into college, you're trying to get into Graduate School.  I was really hoping to have something big to look forward to but I don't think it's gonna happen and that's just another year waiting for school.  And Graduate Schools are different than Undergrad in that most Graduate Schools don't allow you to just start up any term, unless you're transferring.  So I'm most likely gonna have to wait a whole 'nother year and I'll be a whole 'nother year older.

I just feel like my body will never agree with me and my future will never work out.  I'm sick of things not working out.  God, I feel like all I do is talk about how unhappy I am.  Well, I'm sorry but I am so I've got to write about whatever is bothering me.  When I find myself happy, I write about happy things.  But right now I'm in an unhappy and angry place.  I don't understand God's plan, if there is a God or some kind of higher power.  With the way things AREN'T working out for me, I'd say he has no plan for me.  I feel so  forgotten.

Sunday, December 11, 2011

A Surprise Reflection

I opened up my computer to turn it on after a nights and  half a day's worth of sleeping (the computer, not me, well, I did sleep but I was ultimately talking about the computer on sleep mode) and my left hand was holding my forehead in such a way that I could see my left ring finger in the reflection of the black screen and it just set me off inside.  I wear a very special silver band on my left ring finger that just says "Mo Anam Cara" which in Gaelic means, "My Soul Mate" or it can also mean "My Soul Friend" and my best friend Corrie and I wear them together.  But in the reflection of the black screen on my computer, it could have passed so easy for a wedding band.  It can pass for a wedding band outside a reflection, just looking at it but it really looked like a wedding band in that reflection and it killed me cause I wonder if I'll ever really get married someday.  It's actually kind of pathetic I wear that ring on my left ring finger like I'm married to my best friend or something.  I should switch it to my right hand but I'm usually wearing a different ring on my right hand or maybe I subconsciously wear it on my left ring finger cause I like the way it feels and even looks.

I'm pathetic to have such a thing cross my mind when I saw it in the reflection of my computer screen and even more pathetic that I'm writing about it.  but I just must tell you I so value love and I miss it, the idea of it and the opportunity of it most of all.  It's been a hard go of it these past 3.5, almost 4 years without love of a significant other.  I'm going to be 30 in January and so many of my friends are all married now, many have kids.  And here I am married to my best friend apparently, which I don't mind being married to her - I love you Corrie more than you will ever know - but it would be nice if that ring were more of a wedding band to a husband and me and my best friends rings together were worn on my other hand.  Will it ever be my turn to find true love?  I'm just so scared it'll never happen for me.

One is the loneliest number.  And I am one.

Thursday, December 8, 2011

Pursuing Happiness

"The foolish man seeks happiness in the distance; the wise grows it under his feet."  ~James Openheim

"The Constitution only guarantees the American people the right to pursue happiness.  You have to catch it yourself."  ~Benjamin Franklin

I thought those two quotes were fitting for how I'm feeling.  To put it simply, I JUST WANT TO BE HAPPY.  I'm unhappy most of everyday and I can't get those days back to change them.  They're lost in the past and they were a waste.  I didn't do anything with them and I wasn't happy.  I think I have been the foolish man in that I seek happiness in the distance with thoughts of a grand future instead of what makes me happy right now, under my feet.  Benjamin Franklin, who is accredited with that quote but it is really actually unknown who said it, is also a wise man in that he put the word "pursue" in there.  Not that we the American people have the right to happiness without effort.  No.  But we have the right to "pursue" it and catch it ourselves.

Problem is, I don't know where to start to pursue this happiness that I seek.  I am such that foolish man in that so much of my happiness is stuck in a grand future I don't even know if I'll get to live one day.  I can't find the happiness in the now.  I don't even know if I know how to pursue happiness or if I did, could I catch it?  Or would I just be clumsy and have my eyes set somewhere else and let it slip through my fingers when it was right there to catch.  I feel like a deep sea fisherman in that I have the big fish, "happiness," on the hook and I'm trying to reel it in as hard as I can by doing things like seeking out schools for a Masters and doing surgeries to better my life but my rod just keep bending further and further because my happiness is just so hard to bring in.  And sometimes when I'm trying so hard to reel in that happiness out there in the future, it pulls so hard that it breaks off the hook and I'm left with a broken fish string as my happiness swims away.

I'm sitting here being unhappy as usual when I read online that there was another shooting at VA Tech.  How. Fucking. Sad.  And I'm not being sarcastic.  It's seriously fucking sad.  Just makes me more depressed about this world.  What reason is there for me to be in it when I'm unhappy all the time and my future is unknown so I don't even have that to look forward to and I'm unhappy at home and VA Tech has another shooting with two people dead.  Do I really inspire any of you?  Do I really make a difference in any of your lives?  I certainly don't make a difference in my own life right now.  When will I pull my head out of my ass and pursue that happiness that Benjamin Franklin speaks of instead of just sitting around being unhappy?  But what do I have to be happy about?  Yeah, yeah, I'm happy to be alive.  I am.  And I'm happy for the few friends I have and family.  but I'm so overwhelmed with being unhappy that can I find the strength to cast my fishing rod back out there and give it another chance.  Pursue it and catch it.  And  hold on to it for dear life.

Monday, December 5, 2011

Not Feeling Alive

So, I'm getting sucked into that deep, dark hole again and it's odd because you wouldn't think I would be because usually when someone gets active physically, they usually pull out of that dark hole.  But I'm not.  I'm getting active with my treadmill by working out on it but still, nothing's changed, at least not mentally.  Perhaps it's because I'm not physically getting OUT of the house but still, you'd think the exercise I'm getting would help.  but it's not.

I always think, if I died, what song would I want to be sung at whatever kind of ceremony that was held for me (I would prefer a totally unconventional ceremony, but that's just me, I'm weird and different and well, unconventional) like the beautiful lyrics in the song "If I Die Young," by The Band Perry where they sing, "Send me away with words of a love song."  God, how wonderful is that?  I imagine my ashes being spread out in one of those three locations I chose awhile back in a blog that ended up with someone calling the cops on me and people that I love singing the words to one of my favorite beautiful songs.  God, what would I choose?  Seeing as how I'm a big fan of alternative rock, there's not much room in there for sweet love songs.  Plus we all know my favorite artist is Jack White and once again, not many songs to choose from that would be appropriate to scatter me to the winds to.  I guess I might say "We Are Going To Be Friends" might be kind of sweet and it would be easy for everyone to do a little sing-a-long to.  I'll have to think about it.  It may  have to be something other than Jack but I couldn't imagine any other way to be spread to the winds and into the oceans than with the words of Jack.  Well, I digress....

To live the kind of life that I'm living is hard.  It may not be as hard as many others, like paraplegics and quadriplegics but it's hard nonetheless for me.  I count my lucky stars that I was not burned in the 4th degree which usually ends up in amputation.  I almost did in my arms and that would have been devastating not to have arms.  I almost lost my breasts as well.  Sometimes I wish I had as you all know how I feel about that...I talked about it in one of my blog posts where I told you all something I had never told you before.  It might have been easier to fix them if they had just done a double mastectomy but my mother begged through tears to save them.  And with great skill, my doctor did.

But I think I've had enough time and lived through quite enough to know what life is really all about.  I just don't know if I have the strength to get me through the rest of my life.  You all think I'm so strong and I don't know where you see it cause I certainly don't feel it.  I had a friend text me something the other day that said this:


It was ultimately sweet of her as she knows I don't see any of that in myself but she's trying with all her heart to help me see it.  But will she make it in time?  I'm here for now.  But I certainly don't feel alive.  So why should I be?

Saturday, December 3, 2011

The Devil on My Back

I'll hold your hand when you are feelin' mad at me
When the monsters they won't go
And your windows won't close
I'll pretend to see what you see
How long I say how long
Will you relive the things that are gone
Oh yeah the devil's on your back
But I know you can shake him off

And every day that you want to waste
That you want to waste, You can
And every day that you want to wake up
And you want to wake, You can
And every day that you want to change
That you want to change
Yeah I'll help you see it through,'Cause I just really wanna be with you
You know it's funny how freedom
Can make us feel contained
When the muscles in our legs aren't used to all the walkin'
I know if you could snap both your fingers
Then you'd escape with me
But in the meantime I'll just wait here and listen to you when you speak
Or scream
And every day that you want to waste
That you want to waste, You can
And every day that you want to wake up
And you want to wake, You can
And every day that you want to change
That you want to change
Yeah I'll help you see it through,'Cause I just really wanna be with you
The truth cuts us
And pulls us back up
And separates the things that look the same
But you can fight it off
You can fight it off,You can
And every day that you want to waste
That you want to waste, You can
And every day that you want to wake up
And you want to wake, You can
And every day that you want to change
That you want to change
Yeah, I'll help you see it through, 'Cause I just really wanna be with you
~Lyrics to "Waste" by Foster the People

I love these lyrics cause they really do speak to me on a deep level. "How long will you relive the things that are gone, oh yeah the devils on your back..." Man do I really feel like the devil is on my back keeping me company with misery and sorrow, particularly misery. And I'm so tired of it. He's getting awfully heavy hanging on there. I just want to be free of everything, the scars, my weight, the pills, the accident. This devil on my back gets me down on myself, gets me down on my life and I can't shake him. I cannot shake him. He brings my depression to a deeper level that I cannot describe.

"The truth cuts us, and pulls us back, and separates the things that look the same. But you can fight it off, you can fight it off." The truth indeed does cut us, At least that's how I feel about the mirror because the mirror is my truth. It's what I see that was once beautiful and is now unrecognizable to me. My body is also a truth that cuts me. It reminds me everyday when I need help bathing or getting dressed or go to reach for something that I'm dependent and it's unknown when I'll be independent again with those things. And those truths pull me back, make me withdraw into myself and into a mind that's full of deep, dark thoughts. How do I fight off both the devil on my back and the truths that are pulling me back? That's just a lot of fighting that I feel I don't have the energy for.  So am I losing?

The Chorus is brilliant. I can waste away everyday that I want because I simply can. But the thought of everyday that I want to wake up and the thought that I CAN is daunting in the sense that I just don't wake up because of those truths and that damn devil that holds me back. Oh God, how I want to wake up, how I want to CHANGE, as the chorus goes on to end with. And they sing that "You can." Can I really when I'm suffering from such depression? Everyday is a waste to me and I preach to you to not waste a single day in your life. Don't be like me and waste a day because soon that day will be gone and you can't get it back.  And if someone is suffering from a depression, please be there for them cause it does feel like a devil is on your back and they need all the support they can get to help fight off that devil.  Be there for them no matter what, no matter how long.  You can use tough love once in awhile but you must, you must give understanding all the time.  We don't want to be alone in this.  I don't want to be alone in this and I know I'm not.  I know I have lots of wonderful, caring, supportive friends and family but sometimes that devil gets so heavy and those truths cut so deep, I do feel alone.  

Friday, December 2, 2011

My Amazing Friend, Jessa

This post is for and in honor of a very dear and close friend of mine, Jessa Eagan Gray.  Just this morning she posted about how she wishes things were easier for her as a mom because all she really wants to do is be a mommy and a wife (she is a single mother, btw).  My heart sunk for her when she said that because it relates to my mother in one way in that all she wanted to do was be a mommy but we didn't have the money for her to stay home so she had to go to work.  Now my mother's not a single mom, she has my dad but I know how her heart yearns to do just what Jessa said.  But my heart also sunk because Jessa is an amazing woman, friend and mother.  She has been an amazing friend to me, always doing things above and beyond what is asked of her as a friend, especially being a single mom.  And as a mom!  Whew!  What a mom she is!  She's a single mother to TWO kids!  And she still manages to be an amazing woman, daughter, sister and friend!!  There are so many friends of mine that just don't make time for me and they don't nearly have on their plate what she has on hers and she still makes time for me whether by FB, phone call, text, or most of all, coming to see me in the hospital where she CAN'T take her kids so she has to get someone to watch them.  I just cannot tell you how I admire her.  And if you've ever met her kids, you should be even more in awe of her cause her kids are the best!  I mean she runs around in the early morning to get herself ready and then her kids ready and then she has to trot off to work and then, exhausted, she comes home to continue taking care of the kids.  But she has raised two kids on her own and they have turned out to be amazing and bright little boys.

Jessa gets down sometimes and gets down on herself sometimes and that breaks my heart because I want nothing but for her to be the happiest girl on earth with someone she loves by her side to help her with the kids and everything else that is on her plate.  She has so many people that love her that hate to see her post things like she posted this morning so I just had to write about her and hopefully cheer her up and show her that she is not alone in her sorrow and to show her what she has accomplished!!  I mean, raising two amazing kids on your own is quite a feat.  Remember that, Jessa.  I know you just want to be a mommy and a wife and I know, I KNOW someday you will.  You will find that one someone who fills the every need of your soul.  And I know this because I know he's already looking for you, too and you two will find each other and you will get to be that mommy and that wife you're dreaming for.  I know today seems like a  hard day but remember that stubborn little boy this morning is really a rare gem that you created.  You're amazing, Jessa.  In every way I could write about.

My beautiful, wonderful, amazing friend, Jessa

Wednesday, November 30, 2011

The Unknown

"My new weapon is my words and my new uniform are my scars."  ~J.R. Martinez

I may not have been a soldier like J.R. but I still identify with what he said.  Perhaps for me the first part would be changed to, "My new purpose is my words," in that with this journey that I'm going through, my purpose are my words to you to show you a better life that you can live and to better love those who are important and dear to you.

I never imagined something like this would happen to me and I'm still learning to deal with it.  Deal with the change in my body and deal, deal with my own self-image, with the change in my future, my life.  I've just gone through my 32nd surgery and I'm going to go through my 33rd surgery after the new year and will still have more to go after that.  so when does it come to the point where I can get on with my life and get out on my own?  I don't know.  I just don't know.  So what do I do?  I'm tired of the unknown.  I'm so tired of it.  I almost wish I could get a long term planned out surgery plan so I could say, "OK, this is when I'll be able to move out on my own and get my life started, get a future started," but there is no way to do that.  There will come a time when surgeries will come to a halt and they will be here and there but I will be able to have a life in between them.  But the problem is, that's a completely unknown time frame.

So I'm going through a rough patch again, struggling with emotional demons and my weight which adds to my emotional demons.  I have been exercising on a treadmill and with resistance bands but the weight has not been coming off like I'd hoped and I think a huge reason is my medications.  I'm tired of all the medications I take every morning, every lunch, and every dinner.  I just want to stop taking them all but I can't.  I feel powerless over them and that's horrible.  No one or no thing should have any power over my life and my body but me.

But the biggest thing I'm tired of is that unknown of my future, that unknown of what is to be my life.  I didn't plan for this.  No one does.  But you can plan for it in a way by living the life YOU want to live.  I halfway lived the life I wanted to live by moving to New York but even though I enjoyed it and loved it, I half-assed my career to the point where I have no one or nothing to go back to.  I "enjoyed" New York too much, if you know what I mean.  If I go back to acting, I go back to square one.  But what I want to tell you, is don't waste your life with half-assed living and what-if's.  Live it.  Do what you want to do because you never know if something could happen in your life where unknowns start to surround you like they have me.

"My new purpose is my words and my new body is my scars that tell me where I've come from and what I'm made of."  ~SB Watterson

Wednesday, November 23, 2011

Failure Cannot Cope With Persistence

"Failure cannot cope with persistence"  ~Napoleon Hill

Genius.  I have read a lot of quotes on failure but none  have struck a chord with me like this one.  It's so simple yet so deeply powerful.  So much of success is based on persistence and to include persistence in failure is a brilliant idea.  But even more brilliant is to use the word "cope" with failure and persistence.  It's like a perfect quote about failure and the possibilities of success without ever needing to use the word success because it's implied with the connection of the words from failure to cope to persistence, cope being the key and strongest word in this entire quote.  If you are persistent in something that you want, failure cannot cope with that.  It simply cannot cope with persistence because of the power persistence holds.  If you keep trying and keep trying and keep trying for something, failure simply cannot cope, it cannot keep up with your persistence if you keep trying.

In my 20's I have felt much like a failure in a lot of things or that I had failed at a lot of things.  But I also have set a very high standard for myself and all that I set out to do so feeling like a failure or feeling that I have failed can be easy for me.  But there has been something that has been a constant with me no matter what and that has been persistence.  Though I have felt like it many a time, I have yet to completely give up and let failure take a place in my life.  Failure cannot cope with my daily persistence.

But yet, somehow, everyday I feel like a failure.  Seems like such a contradiction with what I just said but somehow I can't shake that feeling of failure.  I had a therapy appt today and I usually share those with you and this is unlike any other day.  I have always been self-critical and evidently there's a name for that and it's "body dysmorphia."  yeah, I have that.  Even when I was running 50 miles a week and weighed 98lbs, it still wasn't thin enough so you can imagine how I feel now that I have gained all this weight from being tube fed the amount of calories I was fed for the amount of time in the hospital.  I mean, if I was self-critical with no scars and weighing 98lbs, what must you think I feel now?  What I think inside my self-critical mind?  I won't get into it but I'll tell you it's pretty bad.  But I like to think of this quote when I'm filling with my head with self-critical thoughts and believe that with persistence, failure simply cannot cope.

Friday, November 18, 2011

Believe In A Great Beginning

"A great beginning is sometimes at the point of what you thought would be the end of everything." ~Dodinsky

A very dear friend of mine shared this with me today and I found it very insightful.  How many personal stories or stories in movies have you heard were just  as that quote.  Where just when you thought it was the end of everything, a great beginning happened instead.  It reminds me of my own story.

There was a point in my life, my injury, where I thought it would be the end of everything.  The end of a career I wanted and dreamed for so badly, the end of my body as I once knew it, the end of, well, everything.  And it has been the end of some things, like my body.  My body is now mangled in scars on the inside and marred with scars on the outside.  My range of motion is disabled.  My face is not the face I once owned.  And it could be the end of that career I dreamed so hard for but that is something that is of the unknown right now.

Even though I am struggling with what I think is the end of everything in my life with my injury, there are some things that have blossomed into a beautiful new beginning like new and beautiful friendships that have come about since my injury.  There is a different view of life I have now that is a very precious one.  I don't know what I'm going to do with my life now, there's so much to figure out and so much that is yet unknown as I said, like my reconstruction.

Things have been very hard.  I've gone through 32 surgeries so far, thousands of doctor appointments and probably added up all together, a year's worth of time spent in the hospital.  As I spoke of before, my range of motion is quite limited and they keep working on it but I have to go through another surgery everytime.  I fight everyday to keep the range of motion I may have gained in a recent surgery but I have to fight to keep it and possibly increase it.  I can never just have a contracture release surgery and be done with it,  I have to go through intense physical therapy that can truly hurt to keep the range of motion they gave me.

But I'd like to believe that my injury was not the end of everything but rather a beautiful beginning to which there are endless possibilities for me.  But I'm still looking for what is being held for me in what is this beautiful beginning rather than looking at it as the end of everything as I have for so long.

Thursday, November 17, 2011

Checking In

I know I haven't written in awhile but things have been tough again.  I hate saying that..."things have been tough again," like I just cycle through these good and bad times like a fun time on the roller coaster ride at the carnival.  But it's not a fun ride.  Right now I'm upset over a few things and they're hard to get over.  I feel powerless over the situation but once again, I must empower myself to rise above the occasion, demand better seats to my own show because right now I'm being very meek.  Meek in my own life and that's pathetic.  I watch days go by only to wake up and watch another one go by just like the one before it.  It reminds me of this quote, "Tomorrow, you promise yourself, will be different, yet, too often, tomorrow is a repetition of today."  (Quote by James T. McCay)  I always promise myself that tomorrow will be different but it never seems to go that way.  I struggle and I struggle but it always feels like one step forward two steps back. I stretch everyday and every hour to combat the contractures that so desperately want to set into my joints and make permanent camp until the next surgery.  All this physical therapy is so tiring.  I'm constantly fighting my body to reach higher or look up at the ceiling with greater ease and not to mention the splints I have to wear at night while I sleep. Since my injury, nothing has come easy and I'm plagued by pain almost every day.  I have become the model for others who contract like I do.  PT's and OT's and doctors will say, "he/she contracts like Sarah."  That's not exactly the model I wanted to be.

On a more positive note, I had a really great post-op appointment this last Tuesday.  Garrett and Steve were astonished at how well I had healed and was healing, not to mention so was I.  They were very excited about my healing and how everything took so well on these two latest surgeries.

Sunday, November 13, 2011

The Wish in Dandelion Dust

"Wishes are important.  You always have to believe that things can be better than they are now."  ~Mira Sorvino in the movie, "Like Dandelion Dust"

I watched a very powerful movie last night called, "Like Dandelion Dust" and it's an extremely powerful movie about biological parents trying to get their biological child back from the adoptive parents.  But there was a beautiful little moment in it with that line above and I think there's so much truth to it.  Wishes are important and it's just as important to always believe that things can be better than they are now.  I forget that a lot.  Very often I get stuck in my world of pain and suffering and I can't see past the hurt to believe that things can be better than they are at this moment.  Sometimes it's just too painful, too hard.  Sometimes I just don't want to because I can't believe in a better world for myself when the pain is so overwhelming.  But it's important to have hope and to believe that things can always be better than they are at that moment because otherwise you'll just get lost in that world of pain and suffering.

Friday, November 11, 2011

Home after #31 and #32 (nearly 3 weeks)

I am home, oh my Lordy after nearly 3 weeks in the hospital I am finally home!  Don't get me wrong, the Oregon Burn Center and the staff there is like my second home and second family but after awhile you just start to get tired of the very boring daily routine and the daily pain and you just want to come home.  I mean, you especially get tired of that same food, no matter how much of an improvement has been made in that area.  There's only so many times you can walk up and down the halls, there's only so much therapy you can do, so much crap TV you can watch, so much reading you can do, and so much computer play you can do believe it or not.  So after nearly 3 weeks, you start to get awfully tired of all those options and long to be home.  Besides, some of those beds are not that comfortable.  And then when you're in excruciating pain, you can't sleep, you can sit and read or play on the computer so you end up pacing the room and the halls.

While I was there I had some very dear visitors, one was a surprise, one was meant to be a surprise (my best friend's visit) and the other was scheduled twice.  My great and dearly close friend Stephanie came by twice to see me and it was wonderful to have her there.  I really needed her both times she showed up because I was not in a good way.  My best friend wanted to surprise me and come visit me but I ruined the surprise for her by demanding to know if she was able to come or not :)  So she was able to come down on the Saturday before the second part to my two-part surgery and she brought fun halloween goodies with her like wigs and witch hats!!  It was an absolute delight.

 (Me and my best friend, Corrie in our wigs)

 (Now wigs with the added hats)

(My beautiful best friend, Corrie, when she first arrived there.  I was so excited to see her) 

We had an absolute wonderful time together and I was desperately sad to see her go.  A day after her arrival and departure, another very dear and close friend of mine, Jessa, surprised me along with the surprise meet and greet of a wonderful gal that I have come to know through Facebook but have never met, Kelly.  They were only there for a little while but we, as always, ended with mustaches and using my wig that Corrie left for me.  Somehow those damn mustaches always get into pictures but I absolutely love them because it makes me laugh so hard.

 (My dear, dear friend Jessa rockin' her 'stache and wig)

 (My good friend, Kelly, whom I finally got to meet rockin' her 'stache and wig)

 (Finally me in my 'stache and wig and even with how disgusting I look in them, my wonderful friend Jessa still digs me )

 (HAHAHAHAAHAAAA!!!!!  Kelly!!!!)

(Peace for 'staches)

So this time around they cut me open in 8 different places, not to mention the donor areas.  Here is the diagram of what they did:

The left side is my backside where they took most of the donor skin, and the right side is my front side where they did all of the contracture releases (8 different areas were released) and two more donor areas on the side of my right and left thighs.  They barely had enough donor area to take from.  Garrett didn't want to take from my lower legs because that's where they have always taken from and the skin is getting very thin there and not very takeable.  There were some very excruciating days of pain in my back while I was there and there was nothing much that could be done to get me comfortable.

So you can see I am so glad to be home again no matter if it's not exactly my own home, it's my home in a way still.  And I came home to box after box after box of things people have bought to contribute to our needs.  It was wonderful and heartening to see how people want to help and do.  Thank you to all of you who have been able to contribute and help have.  We thank you from the bottom of our hearts.  As always, help is always needed.

But as always coming home is bittersweet.  I miss my second family there but it is much too good to come home to a real bed and a real room.  I want to thank all of you for your incredible support.  In fact, incredible just isn't a strong or expressive enough word for the kind of support I was and am given.  I have incredible friends and supporters and blog followers.  You all touch me everyday whether you realize it or not.  A little comment here and there whether here or on Facebook means so much to me and I truly pay attention.

Sunday, October 30, 2011

The Strange Medley of Life - Deciding What Happens IN Us.

"You cannot tell what may happen to us in the strange medley of life.  But we can decide what happens in we take it, what we can do with it...and that is what really counts in the end."  ~Joseph Fort Newton

It's the eve before my 32nd surgery and I'm having all sorts of emotions attacking me.  Mostly panic and nervousness and those emotions are mostly because of the four day splint situation I have to endure.  To have to just lie in bed for four days with my arms in splints so I can't feed myself, give myself something to drink and worst of all, not scratch itches I know I am going to have just because I can't scratch them myself, you know how that works.  If it weren't for having to be in splints for four days, I think I would probably have that same calmness come over me like in my previous surgery, #31 as I focus on the prayers that my family and friends are performing for me.

I think the quote above is a lovely quote and deals quite directly with my journey, anyone's journey for that matter. It is completely that we cannot tell what may happen TO us in life, but we can decide what happens IN us and from there, how we take it and what we do with it.  It is most important the decisions we choose to make for what happens IN us and by in us, I think Joseph Fort Newton is talking about our souls, our characters, even the character of our souls.  We have no control over life itself but what we do have control over is when something  happens to us, particularly something bad, we have the power to control the changes that happen withIN us and how we take it and what we do with it.  We can give up or we can power on even when all you want to do is give up.

There have been many days where all I've wanted to do was give up because I don't want to deal with all of this anymore.  I don't want to deal with the physical changes of my body or the pain or the dependence on my parents, my caregivers, to do things for me that I used to be able to do myself.  But the injury that I endured changed my character and my it changed my inner soul.  It changed how I deal with things and right now I'm still in the progress of working on how to deal with things and how I decide to take it.  A lot of people might tell you it's made me a stronger person beyond what they thought was possible in a person.  I don't know just how strong I really am but I wouldn't argue that I am stronger today than I ever was prior to my injury.  And I think I'm talking more physically here.  Emotionally I can be quite the wreck.  But still, with everything I've been through, with everything I go through on a day to day basis and with everything I face in my future in relation to my injury, I guess I have had the immense strength to not take my own life.  To stay alive and continue to go through the daily I hell I go through and go through times like the next four days and God knows what I may face after that.

So, tomorrow I face great pain and helplessness from the strange medley of life that happened to me but what I can control is what happens IN me, how I deal with it, how I take it and what I can do with it.  For tomorrow is going to build even more of my character, even more of my soul.

Friday, October 28, 2011

Great Changes

I have been doing a lot of thinking since I received the phone call from Garrett's MA to schedule these two surgeries back in September.  A lot of thinking about changes I need to make in my life if I really want to turn it around.  Not to mention changes I need to make in myself if I'm going to make it alive through this journey.  

There have been a lot of things I have been thinking about for change in my life.  I've been thinking about first and foremost the exercise I currently DON'T get in my daily life and what I could be doing.  I used to be a work-out machine running 50 miles a week and curling 25 lbs on my bicep curls.  I was doing some pretty heavy weight lifting but I wasn't going for that bulky muscle look which is why I was running around 50 plus/minus miles a week to stay lean but keep strong with the heavy weight lifting.  I also wanted my heart to be cardiovascularly fit so not only did I run that many miles a week, I boxed and cycled.  In addition to weightlifting to sculpt my body, I was heavy into yoga and Pilates.  And then there was what I was eating - mega  healthy meals and snacks.  I was the perfect portrait of fitness and health.  I continued with this heavy habit into my first year of New York and then I started to slip because I couldn't afford gym memberships anymore or the healthy foods I was eating.  My flexible average weight of 98-102lbs got heavier and heavier and then my accident happened and my weight really hit the roof for me because they were tube feeding me 2500 calories a day PLUS what I was forced to eat in my three daily meals.  Then I did nothing but lay in bed for about two months until I finally got out of bed and went for short 1mph walks around the halls of the burn center.  Once I got home, the contractures in my neck and my arms got worse and worse so that going for a walk was a danger because if I fell I wouldn't be able to put my arms out to brace myself or lift my head up and I could really get hurt.  So I started a sedentary life that has continued for 3.5 years to today.  Then I would constantly be going into surgeries and then I'd be in heavy recovery and just when I thought I was ready to get active again, I'd be headed back into surgery.  So this weight gain has not been good  on my physically, particularly with my diabetes, but also emotionally.  To have once worked so hard to be so fit at 98-102lbs and have it be replaced with blubbery fat is emotionally intense.  This is one of my biggest changes and challenges I face with the coming of the new me, the new SB.

Something I don't think many of you may quite realize is I fight contractures and scar bands on a daily basis, every hour.  Sine my last neck surgery I posted several times on Facebook about the progress I was making with my stretching and then you may or may not have noticed that I kinda quit posting about it.  Well I did not quit posting about it because I wasn't stretching as much because I was, I just quit posting about it cause I figured you'd probably get bored reading them.  But I fight the contractures and scar bands daily and hourly.  And you know what's horrible?  Even still laying down on the floor on two pillows and a half bolster, hanging my neck over the edge, contractures are forming.  They're that aggressive in my body.  And it's so frustrating cause I work so hard that it brings me to tears everyday that I can never win against them.  Now with this surgery, I had 8 different releases so it going to be imperative everyday that I fight and fight and fight the contractures that will without a doubt want to form, particularly in my axilla and elbow areas.  But there's a fine line I have to balance on and that fine line on which I balance is to stretch aggressively enough that I make progress but not stretch too aggressively to where I tear or rip the graft and I'm forced to quit stretching that joint.  I have gone too far in stretching my axilla after it was released for the second time and I ripped underneath the axilla and I ripped it so bad that tissue was just falling out of it and we had to make an emergency drive down to Portland to see my doctor.  But with the kind of gain and progress and success they had with this surgery, I refuse to lose the gain they made so I'm going to do intense physical therapy but walk that fine line with grace.

Then there is the subject of finding my faith again and healing emotionally and mentally.  Now in this area, I have a long way to go with a lot of different things.  So as I have said before in earlier blog posts, I know it is ultimately me who has to do the work, but it is often helpful to find a helping hand grab tight onto yours and help lift you up through the dark, muddy slope.

There is a lot I need to work on in myself and I'm going to need help here and there from the wonderful people who I am blessed to call my family and friends. Thank you for standing by me with all your friendship, and all your endless love and support.

"I have had to fight like hell and fighting like hell has me made what I am."  ~John Arbuthnot Fisher