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

Wednesday, October 26, 2011

Thankful and Blessed for YOU

It is the evening on the 2nd day after my 31st surgery and I wanted to tell you how great of a success #31 was!  I am very pleased to announce nothing went wrong and everything went to plan minus one little hiccup and I'll explain that in just a moment.

I rolled into the surgery room a little after 7:30am so surgery was right on time.  I was in operating room number 3 this time around and I immediately thought of Jack with his obsession with the number 3 and that led my thoughts to, "this has got to be a sign for a successful surgery."  As I lay on the operating table and the oxygen mask was put over my face which meant the horrible sting of the anesthesia was to come any moment, I thought of my family praying for me and all my dear friends who were praying for me.  I thought of all you guys who follow my blog and those of you that just read it who have sent out prayers my way for me and who were keeping me in your thoughts.  And just as the sting of the anesthesia swam down through my vein, a wash of calm came over me from thinking about everyone's prayers and the next thing I knew I was waking up in the recovery room.

The surgery deemed to be one of my more successful ones.  He released both sides of my neck, the middle of my chest wall almost down to my belly button, both my elbows as well as untangling a nerve that was tangled up in some scar tissue in my right elbow and here's where the hiccup came..he had released my chest wall but after doing this he realized he couldn't now turn me over because he had just opened up my chest so releasing the back of my axillas was no longer feasible.  So they will have to be done on another surgery.  But I am not upset over this I think because of you all - my family, friends and blog followers.  I think all your prayers and support have given me a calming mindset this time around.  So thank you all so much for giving me that.

Earlier today, my PT's got an order from my doctor to take down the bulkiness of the dressings on my arms and I got a little sneak peak at some of the work he did on my elbows since that's where the bulky dressings were and oh my goodness it looked great!  I didn't get to see the actual surgical wound and where he released the contractures cause they were completely covered up with the acticoat but I got to see around them and everything looked nice and cleaned up from scar tissue and contractures and scar bands.  My doctor said he cleaned up quite a bit of scar tissue in all six places he released.  More than he ever had before.  And Steve, his PA said I just looked like a fileted fish there on the operating table...that's some nice imagery....But I just can't wait to see underneath the acticoat where the actual releases are.  That might happen tomorrow so we'll see what comes tomorrow.  But I'm very happy with this surgery.

I am, however, having some panicky feelings about this next surgery on Halloween because my arms have to be put in splints for four days.  FOUR DAYS!!!  I will not be able to do anything for myself including feeding myself, getting something to drink, going to the bathroom (even though I'll probably have a catheter in) getting in and out of bed, scratching an itch...OH MY GOD!!   I don't know if I'm going to make it through those four days.  

Well, I just wanted to let you all know that your prayers and keeping me in your thoughts truly does make a difference and I think it really did on Monday when I had my first surgery.  I also want you to know that I never take your prayers for granted.  I feel truly blessed to have the kind of support that I have from all of you, including my family.  Thank you so much for all your friendship, support and love;  All the things you say to me whether on here as a comment or on Facebook truly make a difference in my days and in my life.  They do not go unnoticed or unappreciated.  Just the opposite.  

Sunday, October 23, 2011

31st Surgery Eve

It is the evening before my 31st surgery (my 32nd will come on Halloween day) and I haven't really been thinking much about it until about an hour ago.  I mean, I've been suffering over it for two weeks but as for the day before, it's only been about an hour so far that I've really started occupying my mind with all sorts of thoughts with it.  So many things have either gone wrong or have not gone to plan in the past and not because of my doctors.  My doctors are brilliant.  It's my body.  I used to be horrifying to intubate for the anesthesiologist because my neck was so contracted so they were trying to get a tube down a bent neck basically and then my mouth didn't open very big so they had that challenge to face as well.  At least now, the intubation process is not so worrisome for either of us, the anesthesiologist, my family and myself, because my neck is able to lay flat now.  The only challenge they still face is the opening of my mouth.  That's gotten a little better but it's still pretty tight from scar tissue around my mouth.  They still have to use a tiny camera to help guide the tube down my throat but I don't worry so much anymore that it's gonna take them an hour and a half just to get me intubated.  They have encountered problems still but it's not like it used to be.

Then my body is a bleeder!  lol.  But seriously, I do lose a lot of blood surgery.  So I get to thinking about how much I must bleed during an operation and what that must look like and does it make the doctor's nervous or do they just think, "oh it's SB and she's a bleeder.  Just keep the transfusion going."  Or does it worry them sometimes?  If it does, they never tell me.  My original doctor who continued the fight to save my life on the operating table told my parents that I lose a lot of blood but that's been the only time it's ever really been mentioned so do they not worry or do they just not want to worry me?  I have a feeling it's the latter.

Then there's the fact that I was burned more than 45% of my body so finding skin for grafting is difficult, especially for a surgery this major.  Is he going to find enough places to take skin from to graft?  All I ask is not my ass.  I'm dead serious.  That's no joke.  I once had to have a FULL THICKNESS donor taken from my ass during a very major emergency with my neck and I have never had so much pain from a full thickness donor cause I was always sitting on it and the stitches were killer.  So please, even if you have to take it from the middle of my back which will suck as well, I'd rather have it there than my ass cause I know the pain of a donor site on my ass.

Then there's simply will everything go to plan or will they encounter any kind of problem(s)?  My mind races with all sorts of possibilities as well as all those I just explained.  And I hate, I absolutely hate being put under anesthesia.  I hate the sting of it when it hits my veins and I hate the feel of it flowing in my veins cause it feels kind of warm, like my blood is heating up.  And I hate how at that moment, when I feel the sting and the warmth in my blood that I have absolutely no control cause in about 4 seconds I'm going to be out and my mind will be put into darkness cause there's no dreaming.  So the next thing I know is waking up and that first wave of pain that hits me when I do.

Well, good-bye for tonight.  But keep posted for what I am about to go through...I will be writing about it.  There's a lot I want to change with this surgery being the beginning of that change.  I just hope I can make that change happen.  Prayers, even though I don't know how I feel about praying anymore, and keeping me in your thoughts are greatly appreciated as well as helping with my Amazon Wishlist IF you are in the position that you are able to do so.  Thank you everyone for your wonderful support.  You help me more than you will ever know.  I hope I come through this OK and I don't give my surgeons too hard of a time on that operating table.  Oh God, I hate this.

Saturday, October 22, 2011

Jack and Meg White Surprise Me for Halloween 2011 :)

I have recently started a friendship with a wonderful girl named Jessie and I actually finally got to meet her a couple days ago even though we would talk occasionally over Facebook.  We hung out for a short while but in that short time I found her to be an incredible person and woman.  Never once in the time that we met and spent together did I feel her staring at my scars or looking at me differently.  I didn't feel different around her at all.  I was nervous to finally meet her because I had heard nothing but wonderful things about her from our mutual friends and then just nervous with my burn scars and whatnot.  But when she came over I suddenly felt a great calm wash over me.  She just had that kind of calming aura about her.

We spent some time together talking, going over her Arbonne products as she is an Arbonne representative and then we talked about her Halloween costume.  Her and her fiance, Mike, whom I had yet to meet but also had Facebook contact with, were dressing up as Jack and Meg White for Halloween this year!!  I was so excited about it but yet depressed because I am not going to be around for Halloween this year because I'm having my 32nd surgery on Halloween so I'm not going to get to see them all dressed up as my favorite band.  Bummer.

Well, tonight I got a surprise visit from Jessie and Mike....or should I say, Jack and Meg White!!  They knew how much I wanted to be around on Halloween to see them in their costumes so they surprised me all dressed up in their costumes and they looked AWESOME!!  It truly made me so happy.  The pictures say it all....

I finally got to meet Mike in this wonderful surprise meeting and he is a WONDERFUL guy.  Thank you guys for doing this for me tonight :)  You are INCREDIBLE friends to me.  I am so blessed to have friends like you, my own Jack and Meg White for a night but pictures and memories to last forever :)

Friday, October 21, 2011

The Big 3 More Days until 31 and 32

Well, I got my official "questions-for-surgery" call from the hospital so I guess Thundercats are go...yeah, I know, I already quoted that on my Facebook but I had to do it again.  It's for real this time, no rescheduling now, thank God, or whomever.

So it's getting close to time...3 more days and 2 until we leave.  I'm excited but scared and nervous at the same time, like I always am.  Don't get me wrong, I want this surgery, I just don't have a very good track record with "successful surgeries" and by "successful" I mean everything going according to plan and nothing going wrong.  My body does not like to go along with what the doctors want it to do.  So that's where the nervous and scared emotions come from.  The excited emotions are at the prospect of making progress.  But then when I think about that, the nervous and scared emotions kick in again because progress for me is hard to get.  For example, I've had three and two previous releases on my right and left axillas respectively and so far my mobility and range of motion has not improved much thus why I'm having them released a fourth and third time.  So I want to be excited and think that my range of motion and mobility is going to be so much better.  But then I think about my history with these releasing surgeries and I get somewhat depressed.  I worry that my percentage of loss from my percentage of gain will be large, as it usually is.  I'm tired of healing poorly.  I'm tired of battling contractures everyday, every hour.

It's so hard to be positive going into these surgeries with my history not just on the operating table, but the recovery afterwards as well.  I have an unusually hard time recovering, which is why I stay in the hospital sometimes a little longer than usual.  And a lot of it has to do with my pain.  They have the hardest time trying to get my pain under control.  I've been on pain meds for so long now that it takes more than they want to give to get my pain down.  Surgeons are weird about pain medications.  Many of them just aren't schooled enough on proper pain management so they get nervous about giving more.  But maybe this recovery will be different after my PCP had a talk with Dr. Rice who then had a talk with Garrett about my pain meds and hopefully the message was relayed that I have an extremely high tolerance and it's OK to give me more pain meds as long as I'm not showing any respiratory depression, slurred speech or being super sleepy.  So we'll see how my pain management goes in the hospital this time around.

I hate to do this again but there are things that either insurance doesn't cover OR only covers so much a month and it just isn't enough for how much wound care I require so if you are in the position, I stress IF YOU ARE IN THE POSITIION TO HELP, it is so greatly appreciated if you can.  I have a wishlist on Amazon and what is needed most is gloves, the size 10 and size 8 netting (size 10 would be good right now because I'll be needing to make "t-shirts" out of them for my chest wound care but size 8 will also be needed for my arms) and particularly the mesh gauze netting that is new on there.  Also are things for me to do/watch while I'm in what will be a heavy recovery just sitting around healing for awhile.  So if things are hard for you right now and you just can't afford to help, it is silently understood by us and we don't think any less of you.  But if you can, it's just so appreciated I can't put into words how much it means to us to have the help and support that has been given by so many of you.  Again, to look at my wishlist and maybe get something off of there for us, go to (it's also located on my sidebar towards the top) and enter my email address:  Over on the right of the items on the list will explain why that item is on there and why we need it and how many of it we need.  If there is no quantity number listed, we just need the one!  Thank you again for those who have us in your prayers and thoughts and those who have been able to contribute.  This is going to be a major surgery so prayers and thoughts are so very appreciated.  Thank you, thank you, thank you.

Amazing Therapy - Tormentors

I had quite an amazing therapy appointment the other day.  It was almost like a little breakthrough for me and my therapist.  On our appointment before this one we discussed things in my life that were tormenting me and at this most recent appointment, she broke out the dictionary to find out just exactly what "torment" meant (she likes to do that and now she's got me hooked on it, too as well as finding the origin of words).  And what we found were a couple things.

1. An instrument of torture or the torture inflicted.
2.  great pain or anguish, physical or mental; suffering; agony
3.  a source of pain, anxiety, or annoyance.
4. to cause great physical pain or mental pain or mental anguish in
5.  to harass, annoy or tease
6.  to stir up, agitate

Secondly we looked up Tormentor:
1.  a person or thing that torments
and this is where is got interesting:
2.  Theater - a flat or curtain projecting out onto either side of a proscenium stage, for concealing the wings and backstage from the audience.

We originally wanted to find the dictionary meaning of torment but it led us to tormentor and that's where my therapist had a sort of psychiatrist moment and really delved deep because of the mention of the theater curtains and my own real life experience in the theater and my continued passion to still do acting.  Our conversation about the tormentor's in the theater sense led us to a vision of the me in the audience and the me on the stage.  There's the me in the audience who's got really shitty seats and I can't see the stage, all I see is the tormentors concealing the backstage and I've been settling for these seats for so long that I'm afraid to stand up and demand better seats to my own fucking show.  But instead I just have continued to let the tormentors conceal my view, conceal my view of the me on stage.  In other words, those tormentors prevent me from seeing my future come to be, my passion come to be.  And the me on the stage hides behind those tormentors so I don't have to face my fears and go out onto the proscenium of that stage.

It's time to empower myself and get the good seats for the me in the audience and it's time to empower the me that's on the stage to step out from behind those tormentors because the me on the stage can't see beyond them.  And now, it's almost become safe hiding behind them because I haven't had to face the audience, which is other tormentors in my life and ultimately myself, to go after that passion no matter the price, no matter what I think may get in the way, no matter what problems I may face.

Performing is in my blood and unless you embalm me, that performing blood will always be running through my veins.  As the great Lady Gaga says, "I'm beautiful in my way, 'cause God makes no mistakes, I'm on the right track baby, I was born this way.  Don't hide yourself in regret, Just love yourself and you're set, I'm on the right track baby, I was born this way."  I'm not a huge Lady Gaga fan like I am a Jack White fan, but I do like her and enjoy her music once in awhile but mostly I think Lady Gaga is brilliant in her empowerment of who she is and not being afraid to be and love who she is and thus she empowers herself above and beyond.

I could learn something from her for empowering myself.  My tormentors have taken my own self, my passion and my power from me and I'm never gonna get any of that back until I refuse to stay sitting in those shitty seats I've settled for and say, "HEY! This is my fucking life and therefore my fucking show and I refuse to sit in these seats where all I see are the tormentors.  I want the me on stage to step out from behind those annoying tormentors that only cause me pain and get out onto the proscenium and I can enjoy the show (my life) FINALLY because I've got season tickets to this show!"  It's time to take back me.  It's time to take back my passion and it's time to take back my power from the tormentors.

Monday, October 17, 2011

The Power of Prayer?

A follower posted a comment in regards to my blog post about fighting the fight and it stirred something inside me and I replied back and it started to sound like something I needed to write about.  The comment was about fighting the fight depends on the faith you have that your prayers will be answered in the end, but how long do you wait?  The comment was from simplegrl74 and she said this:

"We were talking about this sort of thing in my life group last week. The problem with fighting the fight is that you have to have faith that in the end your prayers will be answered, but how long do you wait? For how long to you fight?? That's the tough part and up to each person. And that's when loved ones come in handy because dammit, fighting all the time wears a person out. But don't give up just yet, Miss Charlie... <3 you!"

I replied  back to her but it started to get a little long and got me thinking about the power of prayer and to whom we all pray to and what kind of faith do you have to have to get a prayer answered?  So here I am writing about it.

If one's faith has been tested, like mine, and I'm not sure about the idea of God anymore, to whom do I pray?  Also because my faith has been tested, I'm not sure how much faith I have in prayer itself.  If I'm not sure about the existence of a God and not sure about the power of prayer, what do I do then to help someone when they are in a time of need?  What do I do for myself?  I know that many people believe strongly in the power of prayer but I know that I have never had a prayer answered so am I praying wrong?  Or did I never really have the faith needed to get an answered prayer?  I hate the saying, "God works in mysterious ways," cause I wish He didn't, if He does in fact exist.  I wish he was just straight forward with his "ways."  I mean I understand prayer doesn't work like writing your wishlist for Christmas and mailing it to Santa Clause and if you've been a good boy or girl, you'll see some of those items off your wishlist in your stocking when Christmas time comes.  I know you're not gonna win the lottery the next day if you get down on your knees, clasp your hands together, and pray to win the lottery tomorrow.  I know that.  But as simplegrl74 said, how long do you have to wait to have your prayers answered?  Because I've been waiting a long time.  Is there some kind of pre-requisite for how much faith you have to have like how extra curricular activities look good on your college application?  

Because of my tested faith in God, when someone I care about is in need of a prayer, I have been praying to the Universe, more or less because I feel like a hypocrite if I pray to a God I'm not sure how strongly I believe in anymore.  But I do believe in the way the Universe works.  So I pray for those that need it in my own special, weird way.  I want to believe in a God and I want to believe in the power of prayer but I haven't found any kind, ANY KIND of evidence to make me believe in it so.  Maybe that's where the scientist in me comes out. It's also where my anger presents itself.  My anger is conflicted because if I question the existence of a God, then the only place I can direct my anger is at myself and that is a dangerous place to aim.  It can lead to dark places.  I've been there, so I know.  

Someone please tell me another description for "God's ways," because working in mysterious ways doesn't quite work for me.  I'm not asking for an immediate answer but as my follower said, and I'll say it again, how long do I have to wait and how much faith do I have to have for a prayer to finally be answered?  And as she also said, our loved ones and friends become key in helping us to fight the fight.  It can be much like a 24/7 marathon where when one runner gets tired, they pass the baton (the fight) onto the next person who then helps the fighter keep running on in the marathon and fighting the battles they face by running beside them and while the others are resting up from their fighting run, they continue on the sidelines handing out water bottles as I need them.  I need your help, my friends and family.  I can't do this alone.

Sunday, October 16, 2011

To Rise From My Ashes, Rebuild and Fly High

Even though I know what the Phoenix bird is, I decided to do some research to learn more about it.  So I read through quite a bit of different things and this is the best and simplest description I found: 

A phoenix is a mythical bird with a colorful plumage and a tail of gold and scarlet (or purple, blue, and green according to some legends). It has a 500 to 1000 year life-cycle, near the end of which it builds itself a nest of twigs that then ignites; both nest and bird burn fiercely and are reduced to ashes, from which a new, young phoenix or phoenix egg arises, reborn anew to live again. ~Wikipedia

I love the idea of a "colorful plumage and a tail of gold and scarlet." To me that gives the Phoenix some of it's character. To have a colorful plumage with a tail of gold and scarlet says to me that this bird is full of life and full of personality (the colorful plumage) yet has a refinement, a class about it (the gold and scarlet colors). I think that's a beautiful balance to have. I like to think maybe once I had such a balance, such parts to my character and personality but I fear the injury took much of that away from me. I think it comes out every once in awhile when I'm comfortable but that is a rarity - to be comfortable in places.

I find it interesting the part that says it builds itself a nest of twigs that then ignites and both nest and bird burn. To compare myself to the Phoenix, to be rising again from my ashes like the Phoenix, must mean that I also built a "nest" before my injury happened so that I destroyed much more than just my body.  Inside that nest was my career, my future, my friends, my family that I built before I burned up like the Phoenix (unfortunately literally) and died (figuratively) only to be reborn anew to live again and rebuild my nest.

But unlike the mythical Phoenix bird, the Phoenix human has much more to deal with when they are reborn because of the nest they created and burned, destroyed.  There is usually so much that is valuable in our nests that get destroyed in the process of the recreation of ourselves. In my research, the Phoenix bird rises from the ashes to become a younger version of itself prior to burning up.  But is there anything really more valuable in the nest that we built and then destroyed than our own life? That is truly what is most important when we think about what we lost in our nests. We may have destroyed our life, but we have not lost it. I almost died that night and I destroyed my entire nest, even my own body. I literally burned like the Phoenix and became nothing but ashes. But I finally awoke a month later with my life, my heart still beating in my chest and my lungs still inhaling and exhaling. I may have a lot of work to do to rebuild my nest with the twigs that I want and choose, but I did live to be reborn anew. I was given a fresh start. To say "fresh start" sounds, well, refreshing. But it has in fact been less so. It has been the most difficult thing I've had to do. But I have been blessed to be given it for I could have been given an urn instead.

So I must rise from my ashes like the beautiful mythical Phoenix bird and be reborn anew and rebuild my nest no matter how hard it may be.  No matter how hard it may be.  It is said that though fire burns the Phoenix to it's own ashes, fire cannot kill it.  Fire cannot destroy it.  The fire in my case may have destroyed me physically, but it did not destroy my soul though it may be damaged, and it did not kill me.  It reduced me to my own ashes but I will rise again.  I will rise again and I will fly high.

Saturday, October 15, 2011

You Gotta Fight the Fight

I'm sitting here thinking a million things while mindlessly watching some chick flick on TV that my mom just happens to have on in between the movies we've been watching all day and my ears picked up a line one of the characters said and it was, "You gotta fight the fight, kid."  I've heard some version of that line by several people before but why did I hear that line when I was not listening to the movie at all because there was so much noise in my head from all my thoughts but somehow, through all that noise, I heard that line.

I have had a hard week getting prepared for what I thought was going to be surgery this Monday, the 17th.  We would have been leaving tomorrow.  I go through a grueling mind preparation for my surgeries because I just never know if the surgery is going to work out as planned or something will go wrong because I have such a serious history with that so my mind goes wild with all kinds of different results and thinking about the pain that I'm going to be in.  And I just get nervous.  No matter how many surgeries I have had, I always get nervous and scared because of that "you never know" kind of history.  And with that nervousness comes agitation and frustration.  It's exhausting.  And now that my surgery has been pushed back a week for each one, I gotta continue these feelings that just crawl under my skin.  I know you all want to say, "You've got to think positive," or "Everything's gonna work out great," or "Think of the forward progress you're going to make," and "There's nothing to be nervous about so relax."  Well that's so easy for you maybe, but that's not how I react physiologically and psychologically.  I have had too bad of a history, even though things have gotten better, to just relax and not worry and think everything's gonna work out great.

The battles I fight daily are getting tiring.  They're changing my psych medications again so that's just adding to all the negative feelings I'm having and the inability to focus on things to take my mind off what I'm feeling and thinking.  But still, I will go to reach for a glass on the lowest shelf cause that's the easiest to reach, though I still have to step up on my tippy toes to get that glass, and I think that this arm I'm reaching with has been released 3 times and I've lost ground on it three times so third time wasn't a charm, as they say, so will the fourth be different?  Will a fourth release finally work?  It brings tears to my eyes just thinking about the loss that may happen as it has three times before.  I can't even remember what it feels like to be able to completely reach above my head so that my arms align with my body like a streamline in swimming.  It's those simple things that I will miss so much sometimes that I can't help but cry dark tears of the mobility limitations I now face and what they prevent me from doing.

Despite all the stretching that I did and still do with my neck, I can feel contractures settling in.  My body just won't heal properly.  But it's so good at contracting and banding and forming keloid scars.  The physical therapy I go through after a surgery like this is grueling and so painful.  Even the massage therapy can hurt cause they're massaging into where you just got released and it can still be tender.  And now you're out of the hospital so you have to settle for oral pain meds that can take longer to kick in instead of being able to be instantly relieved by a shot in your IV.

So everyday I fight these contractures and the breakdown and everyday I lose.  I lose.  And it's so frustrating.  I'm tired of fighting.  I really am.  But this person on the movie said so determinedly that you gotta fight the fight.  Of course this character had never had an injury such as mine or like those injuries of the people I met at the WBC but if I'm gonna live my life and live one worth living like I write about and dream about, that's what I have to do, keep fighting the fight.  But I'm getting exhausted and I'm losing the strength and life in my fight.  And there's no resting in this fight because it's when you're resting that the demons creep in and grab a hold of your mind and body.  So how do I restore the strength and life?  My heart is heavy and my mind is overwhelmed with noise and dark thoughts.  I've gotta keep fighting the fight or I will lose all that I am fighting for, even if I don't know what all it is that I am fighting for yet.  Will I be able to find some strength and some life to continue on with this fight?  "Fight the fight, kid," he said.  FIGHT THE FIGHT and you shall win the battle in time.

Friday, October 14, 2011

Graduate School?

The time is coming to think about graduate school.  You have to apply around April so now's the time to start looking around and figuring out what it is you want to do and what's important within that to pick the right school.  Well, I'm going to grad school for psychology.  For Forensic and Criminal Psychology to be more specific.  The hard thing though is finding a good grad school that I can start out with online because there's no way I'm going to be going anywhere next year.  I will still be involved in reconstructive surgery.  But I don't want to waste anymore time.  I will be 30 next year and I don't want to wait another year.

For those of you that don't know, my "back-up" career, if you will, is to work as a forensic and criminal psychologist in the BSU (It's actually called the Behavioral Science Unit unlike in Criminal Minds where they call it the BAU - Behavioral Analysis Unit) in the FBI.  I have done a lot of research on this and as a little girl I have always been interested in criminal profiling, analyzing crime scenes and evidence, etc. so this is not something inspired by the TV show Criminal Minds.  It is just the opposite actually.  I became interested in the show because of my already existing interest in what the show is about.  I do know that you have to go through some intensive physical training and pass a physical test to even get into the FBI and therein lies my challenge because of my limited mobility.  So I'm hoping that with this next surgery, there will be a lot of gain and no loss.  Because I don't want to go through what will be a difficult grad school process just to have a desk job in the FBI while I sit and envy those that are out in the field.  I'm not a desk job girl.  Those jobs kill me.  I don't last long.  And if I was to go this route, I don't want to flake out of the FBI, ya know?  Oh goodness, can you imagine Jack White being married to someone who works for the FBI?!! hahahaaa!!!  Hopefully I'll have my dream career but this is a back up and can you just imagine that pairing?!

So I'm looking into online schools and will talk to my favorite psych professor and friend up at EOU, Prof. Chip Ettinger.  He wants to help me out and he has a lot of experience with this.  Being in the Psi Chi is going to help a lot, too.  But maybe I won't even get to do this next year depending on where I'm at in my reconstruction.  God, this accident has put a major dent in EVERYTHING in my life!!!  I am so ANGRY!!!

Wednesday, October 12, 2011

Supplies Needed: My Amazon Wishlist

You can go to my wishlist by going to and entering in my name: Sarah Beth Watterson or my email: (I recommend putting in my email) and a list will appear and show you what we are needing that insurance doesn't cover, the quantities, how high of a priority it is as well as some non-medical items just to help brighten my day during what is going to be a very hard recovery.  if you have any questions, you can email me at that same email address.  Thanks for any help you may be able to give.

5 more days till my surgery so the time is coming.  This is going to be a major surgery so we are going to be using A LOT of supplies in wound care. Please help if you can. What is needed most right now is pretty much everything except the duoderm - we have gotten quite a bit of duoderm and I have been so grateful for everyone whose bought some cause I'm pretty cleared up. Let's just hope I don't break down after surgery. Anyway so all the rest of the stuff is greatly needed for what is going to be major wound care and major recovery. Thank you so much. <3

Tuesday, October 11, 2011

Scared and Anxious for #'s 31 and 32

I am sitting here tonight thinking about my upcoming surgeries and I'm filled with anxiety.  I went to the grocery store with my mom tonight after her work and on our way home, I was just staring out the window and suddenly just said, "I'm getting scared mama."  My mom knew exactly what I was referring to because we've gone through this 30 times before, well maybe less since I went through 6 surgeries when I was in a coma so I guess I couldn't really be scared then, so all she had to say was, "I know," and she squeezed my hand.

I don't know why I get like this.  Well, I guess I know some reasons why like my history with things either not going as planned or going wrong.  And I simply hate being put to sleep cause I hate being put out so quick, so quick that I don't have anytime to really think about falling asleep.  I hate feeling the sting of the anesthesia running through my veins and not having any time to really think cause I'm out in 5 seconds or less but in that 5 seconds somehow I manage to have time to get really scared.  And the more surgeries I have the harder it is getting for me to wake up from the anesthesia so that worries me.  And then I hate the waking up part and the first feeling of pain that hits.  The best part of coming out of surgery, though, is getting to see my mom for the first time since I left her to go into surgery.

This is going to be a really hard surgery with everything that he's doing.  He's doing a bunch of burn contracture releases on many different parts of my body such as my neck, my chest, and both my arms and elbow.  Because he's doing so much at one time, I'm scared for the pain and I don't like the idea of being so helpless.  I mean, my neck is going to be sensitive and sore, my arms are gonna be useless for awhile, and oh dear God, my chest, will definitely be the worst because you really have no idea how often you use those chest muscles, even for the smallest thing like pushing yourself into bed.  And don't even get me started on the horrific pain from all the donor sites I'm going to have with all these releases and grafts he's doing.

So as time gets closer and closer I get more and more withdrawn and easy to burst out in frustration or irritability at the smallest thing.  I'm just tired of the process of surgery.  I'm so tired of the pain.  I'm tired of fighting this battle.  Cause even though this is huge forward progress, I still will have to battle the contractures once I'm healed enough to start in on physical therapy.  And even with all the physical therapy I do, I still lose some of what we gained in the surgery.  I hate my body.  I'm tired of battling these contractures and these scar bands.  It's never ending for me.  And I'm getting really tired.

If I Could Relive My Life

If I Could Live My Life Again

I know I'm not the perfect one.  I know that there are so many things that I regret.
In this world that I used to live, there are so many things I cried for.
I want to forget all those, but how could I forget all about it when all the memories haunt me and so?

I wish that I could turn back time so I can make my faults be right.
If only I could live my life again, then I would do my best to make things better,
for I shall pass in this world only once.

If only I had the courage to show you how I feel, then I wouldn't be feeling this way.

Oh Father, if ever you are to show me the real happiness, please don't ever take it away.
You've tested me, and I know, I've proven you that I'm real.

Kindly help me to be strong in the midst of the storm so that when the time comes,
nothing can shake my faith anymore.

~Kim Jin Yi

There's a catch-22 about reliving your life.  In one way it would be great for those of us who have regrets and made mistakes that we want to fix and do-over.  But if you look at it like many people and philosphers do in that those mistakes we make aren't mistakes, but lessons to be learned, then if we went back and relived our lives to fix those mistakes would we miss the lesson that was meant to be learned from that mistake?  I guess it depends on how we go back to "do-over" our life.  In other words, when we go back to relive our life, do we remember those mistakes and regrets and the results of them?  Or do we not remember anything from the life full of mistakes we came from to only make the same mistakes all over again?  Do we get to bring our memory with us in the do-over of our life?  Well, if we get to bring our memory with us, I think I would choose to have a do-over of my life and I would repeat the successful things in my life and having learned the lessons of my mistakes in my first life, I would make different choices.  But then again, would I want to go back through everything?  Now, it's all behind me, despite the fact that I can't let go of it, it's behind me.  

This subject can of course turn into the subject of reincarnation.  I'm still slightly undecided about reincarnation.  I have a friend whose very dear to me and her mother has an interesting perspective on this subject and I'd like to share it.  She does believe in reincarnation.  She believes in God as more of a source of energy than a deity.  And she believes that when we die in one life, we are sent to a place of "heaven," where we are surrounded by other spirits who have come and gone in our lives and there is a discussion, if you will, about if you feel you have learned what "God" has meant for you to learn.  If you feel that there is something more you must learn, they send you back either to the life you are currently living (as if you had a near-death experience) or you are reincarnated into another being and you grow to hopefully make different choices then you did in your previous life because you have learned from them or perhaps you make the mistake again.  If you die, or are having a near-death experience, and you are with your "spiritual elders" and you all agree that you have learned what all you were meant to learn in your times on Earth, then you stay and become a spiritual source of that energy that represents God.

This now brings us to the subject of younger and older souls.  We've all come across those certain people, young people that just seem to be very mature for their age, "old" for their age in the sense that they make more grown-up decisions.  We have often said, "they have an 'old soul' about them."  Are these perhaps people who have been reincarnated several times and really are old souls and the reason they seem more mature and make better decisions is because they have been reborn several times to continue learning what it is that God put them on this Earth to learn?  And then there are those people that we just want to wring their necks because no matter how old they may be, they are just so immature and make poor decisions.  Again, we often call these people, "young souls."  Why?  Because they have only been through a few rebirths and their souls are not mature enough to make a mistake, learn from it and when faced with a similar situation, remember that lesson and make a better choice.  

I have been told many times that I am an "old soul."  That I have this old soul feel to me, despite stupid mistakes I may make, I immediately know it was a stupid choice.  I have also been told that I have an old soul feel to me because of the maturity and "life" knowledge that I possess.  This "life" knowledge that I speak of often indicates an old soul.  It's like knowing things about life that you really shouldn't know or be so aware of at your age.  

Since I've been told I am an "old soul" by so many people, have I passed through many lives to know the "life knowledge' that I do?  But if I am such an old soul, how did I screw up so bad in this life once I entered college?  It's like that first year of college I went downhill, then a little uphill, then drastically downhill again around 2007.  Have I passed through life after life after life without learning the one thing I was really supposed to learn in this life that this "God" finally had it and stepped in to nearly kill me and destroy my body and my life in order for me to "get it?"  Was this life my last chance to learn the lesson I was supposed to learn that God had to do something so terrible and drastic to me so that I am finally able to say, "I get it." 

Even though I have learned a lot, and I mean A LOT, with the occurrence of this injury I'm still not sure I've learned what I was supposed to learn.  So would I go back and relive my life if I had the chance?  I think I would only if I could bring some sort of sense memory with me so that nothing would happen to me again like what has happened to me in this life.  I do believe in old souls and younger souls.  I'm just not sure what to believe in for how they got that way.  Is it just how the Universe designed them (or God, if there is a God. I'm still fighting that subject)?  Or is it because they've passed through many lives?  I just don't understand why this happened to me if there is such a wonderful God.  Have I just screwed up so many times that finally something drastic had to happen to me for me to have an "ah ha" moment?  Was I punished?  Or did it just happen and it simply sucks.  All those reasons just aren't good enough for me.  Something like this should never happen to anyone.

"If I could relive my life, I wouldn't.  Cause everything I've done, I've never once regretted doing them.  And everything I am, is everything I was meant to be."  

Monday, October 10, 2011

Look Reality in the Eye and Deny It

"Sometimes you just need to look reality in the eye, and deny it."  ~Garrison Keillor

How can I express how much I LOVE this quote!!!  It's simply brilliant.  Thank you Mr. Keillor for your genius and recognizing how some of us want to live our lives.  It relates perfectly to me because even though I live in a nightmare of reality, I also live in my own little future fantasy world.  And I often feel silly about it with the things I talk about - marrying Jack White, becoming an oscar-winning actress, the next Meryl Streep. But Mr. Garrison Keillor is kind of giving me permission to fantasize away, to "look reality in the eye, and deny it."  I know that it has a much deeper meaning but I'm just scratching the surface right now.

Of course the deeper meaning may be more along the lines of someone who has been paralyzed and reality tells them they'll never walk again but they are determined to not accept that reality and there have been stories where paralyzed people have miraculously walked again.  I met such a person, actually.  A Police Officer shot in the head in the line of duty.  His wife was told if he lived, he would be vegetable, never walk again and brain-dead.  And when I met him, he was far from a vegetable and far from being brain-dead.  He was speaking fine and above all, walking.  WALKING!  After these doctors told his wife and then him that he would never walk again!  He looked reality in the eye, and he denied it.  He said, "You will not take the basics of life from me."  He's an amazing man with an amazing story.  You should check his Facebook page out - Mike Kralicek.  

Where he succeeded is where I have so far failed.  People tell me that my acting career may be over and that I need to rethink a different future.  I have yet to look that reality in the eye and deny it.  I don't want to accept it but I so far have not the strength to deny it and know because what I see in the mirror agrees with what those people tell me.  So instead, I create a fantasy world and a fantasy future for myself where as you all know, Jack White marries me and we live happily ever after and I become the next Meryl Streep and I beat Katherine Hepburn, who still holds the record for winning the most Oscars for Best Actress.  I also beat Meryl Streep for holding the record for Oscar nominations for Best Actress.  And then Jack and I have kids - Isabeau Georgia White if we have a girl and Huck Jack White or Willem Jack White if we have a boy or all of the above if we have three with one girl and two boys!  See, my fantasy world is heavy duty fantasy.  I mean, I go as far as naming our kids!  And I'm not just naming kids to any prince charming I may marry but to a rockstar/songwriter/music producer/actor!!!  And then not only to fantasize about one of the hardest careers to break in to but to be as successful as Mery Streep and Katherine Hepburn!!!  I'm nuts!  

My biggest challenge in relation to that quote is not listening to what people say about not having a career in acting again and not listening to what the mirror says.  To look in the reality that the mirror holds and deny it.  To look in that mirror where reality stares me back in face, look it in the eye and say, "YOU WILL NOT STOP ME!"

Sunday, October 9, 2011

Emotional Hoarding

"Regrets are a waste of time.  They're the past crippling you in the present."

I've got a lot of mistakes and regrets to work through in my life, not to mention a lot of guilt with my accident.  I know all the many little sayings about not living your life with regrets but it's so hard for me to let go of the those things that aren't tangible, which is funny if you think about it.  I'm not a hoarder of the tangible things.  I hate when junk starts piling up so I get in a cleaning mood and throw out most of that junk.  But when it comes to the non-tangible things, the junk that I can't actually hold in my hand and throw away, the emotional junk, I become a hoarder.  I am an emotional hoarder.  Is there such a thing?  If not, I just made it up and now I should become a psychologist and officially name it a disorder and treat people for it.  Hello, my name is SB and I'm an emotional hoarder.

But in all seriousness, I hold on to emotional junk.  I guess maybe a lot of people would call that "emotional baggage," but I think it sounds much more creative, and disorderly, if I call it emotional hoarding.  This is a big issue in my therapy sessions.  I've had a guilt thing going on since my college days and I still can't let it go.  I obsess over my mistakes and feel regret for something everyday.  All this emotional hoarding, all this guilt, all this regret is crippling my present.

My emotional baggage and dealing with it has only gotten bigger and worse since my injury.  It feels like all that emotional hoarding came to a head with my accident.  I am and always have been ill-equipped with the right tools to deal with my emotions but since my accident I feel like any tools I did have were taken with the fire, just like it took so many other things from me.  It's like I once had both a Phillips screwdriver and a Flathead and the different kinds of nails to use with them but now all I've got is the Phillips with nails that only a Flathead can fit to.  So since I can't fit the Phillips screwdriver (my emotional tool) to that particular nail (my emotions) I don't deal with my emotions very well.  Regret and guilt poisons my soul and mistakes occupy my mind in overtime.

I know regrets are a waste of time but how do I let them go so they can finally stop crippling my past?  This is what occupies most of my therapy hour and let me tell you, emotional hoarding is serious.  I've been working on this problem and my inability to handle my emotions, my inability to let regrets go, let mistakes go, let the PAST go since my first year of college, then with a 3.5 year break while I was in New York.  And now 3.5 years after my injury I'm still working on it.  It's long, and very hard and painful, process to go through.  I feel so many different emotions everyday, most often multiple emotions all at the same time and I don't know how to deal with them properly, or even just deal with them particularly since my injury.  I'm tired of fighting these regrets and the guilt that pours poison down my throat and into my soul and I'm tired of thinking on overtime about any mistakes I've made.  I want to let go.  I want to let go so my past no longer cripples my present so I can move on and truly live in my present so that I don't waste any more days on regret, guilt, and mistakes.  To let go and believe in a bright future again.

Hi, my name is SB and I'm an emotional hoarder.  "Hi SB."  

Plans for Surgeries 31 and 32

Many of you may know already from my posts on FB but I've got plans scheduled already for surgeries 31 and 32, yup, two more surgeries.  I was quite surprised to see Poonam (Garrett's MA) calling me the very day after my appt!  Usually it takes like a week and then it's usually me calling them to remind them I need a surgery scheduled.  But oh no, Poonam got me on the books immediately.  Maybe it had to do with me looking right into Garrett's eyes and saying, "So you'll be calling me SOON (emphasis on the "soon") to get that scheduled, yes?"  Maybe that did the trick....

So what am I having done?  When I say that I feel like I'm addicted to plastic surgery and am going in to get something fixed for the millionth time.  But to answer the question, he is doing a lot of contracture releases including, the center of my chest, under my left breast, my abdomen, my right elbow, the sides of my neck and possibly my arms but I'm not sure about the arms.  There are several places on my arms that need some kind of release, not just my axillas.  And it's two surgeries because he's laying allograft down first and that must stay on for about a week and then I go back in for the second surgery and he lays down the grafts.  Now this second surgery is particularly gonna suck cause there's a lot of grafting he's gonna have to do so that means a lot of donor sites and any burn survivor will tell you, it's not so much the grafts that hurt, it's the fucking donor sites.  They hurt like you wanna die sometimes.  They can hurt so bad that it doesn't matter how much pain meds you get.

I'm happy so much is getting done cause it's progress forward but also because my insurance is checked and renewed every year starting in April so I need to get as much stuff done as I can before my insurance changes on me because at some point, it's going to and when one of my surgeries cost $100,000 (just the surgeon expenses, that's not counting anesthesiologist and hospital stay) there's  NO WAY I can afford to pay something like 10%.  That's insanity and call me bankrupt.  (And the insurance thing I just shared with you, not really something to pass around in your gossip circle, please.)

But I am also very anxious as I always get.  I often worry, though I've never really vocalized it, about something going wrong with the anesthesia because I've gone under so many times and never waking up.  Or with this abdomen release, the aorta runs down to your belly button so my wild imagination gets away with me and I think about the doctors or nurses accidently cutting it and I bleed out on the table cause they can't control the bleeding.  I know, crazy but it has happened actually.  A doctor was operating around a man's belly button area and cut the aorta.  So it can happen.  And with my luck, one of those things would happen.

I will be in the hospital anywhere from 10 days to 12 or 14 days.  My first surgery is next Monday the 17th at 7:30am with an awesome 5:30am check in and my second surgery is the following Monday after that, the 24th at the same times.  Surgeries 31 and 32....I'm past 30 now and heading towards 3 dozen shortly and then into the 40's.  Never dreamed this for my life.

Saturday, October 8, 2011

WBC Workshop Alpha Poems

The first workshop my father and I did at the WBC was on Wednesday, the Pre-congress Workshop Day where there were workshops that you had to pay an extra fee for to go to if you wanted.  Well, there was one in particular that interested me so my dad and I decided to go.  It was called, "Road Trip! Navigating life after burns," and it was the best workshop we did all week.  It was amazing.  Something that was interesting was one of the speakers said he surveyed a ton of doctors and nurses about what to expect for life after burns, what to expect years after our injury and he said they all basically said, "I don't know."  Because not much research is done not only on burn injury themselves but particularly on what happens to the skin and the grafts and donor site areas later in life.  We just don't know what to expect and then everyone is different cause skin is the largest organ of our body and everyone's skin is different so it makes sense that everyone would be different in their healing.

But there was a lot of interactive stuff we did, getting into groups and telling our stories and different things like that.  There was also a lot of crying in some groups...usually mine :)  But this group is also where I got a lot of useful information and I just got so much out of it.  The speakers were great and the information was fantastic and the way they set up the workshop was fun, even if there was crying.

At the end they had us each write an alpha poem.  An alpha poem is where you take a word, write it vertically and then write words out of each letter.  My dad did a great one and I shared it with the class cause he didn't think it was very good and didn't want to so I read it aloud for him.  And then he wanted to share mine cause I didn't want to share mine either cause I didn't think it was very good but when my father tried to read aloud my alpha poem, he couldn't get the words out, he started to get emotional and it was the first time I'd seen him show emotion like that since I came home.  So I grabbed the poem and read it aloud myself :)  I felt a strong bond for my dad in that moment as I grabbed his hand to tell him it's ok to cry, it's ok to show emotion sometimes.  And he squeezed my hand back.  It was a touching moment for my father and I.

So I wanted to share our alpha poems that we wrote in that class cause they're pretty good if I say so myself :)  My father's is the one about "SCARS" and mine is "CHANGED".  You can kind of read into the different words that my father and I chose and how they make us feel.  Hope they make you feel something cause they certainly did for my father and I.

Stop the stares
Can't we be normal again
Always hurting
Risk of contractures

Contractures never let up
Hard to accept
Always hurting
New body
Grafts everywhere
Everyday battles

Friday, October 7, 2011

Life As A Woven Rope

"It's hard to accept, but you can't change the past.  You can't go back and manipulate things to the way you wanted them to happen.  Because life'd be meaningless and boring and just not worth living.  But you can change the future and that's a beautiful thing about life. yes, you will make mistakes.  And yes, you will have bad days - but as long as you let the past go, you'll have such a gorgeous and bright future ahead of you.  Knowing that things were meant to happen.  Knowing that each day you will learn something so that you keep growing to be a better person.  Life is like a rope, twined in all it's complexities and yet weaved into one marvelous stream that you have the chance to use something amazing from.  So grab hold of it."

I've been writing about the past a lot because that's a huge issue with me. My past is a mixed one, as are many people's are. I had a rough go of it around the beginning of college and then things started looking up, then things were really good and then it started to get rough again. And then my accident happened. I look back on the part of my past that was rough in the beginning and I'm settled with it, I'm OK with things that happened. And then I look back at the part of my past that was great, when I was living in Portland, OR for awhile and then when I made the biggest choice of my life - moving to New York. My time there for the first 2.5 years are what I can't let go of because they were incredible. I dreamed of moving to New York someday and working to make my dreams come true as an actress and I was on my way when things started to get rough again and I needed to come home to get my head on straight. And that's when my accident happened. I'd only been home about a week or so when I was injured and my life changed forever.

It's so very hard to accept that I can't change the past. I can't change the rough times towards the end of my time in New York that led to my downfall and I can't change the events that led to my injury. But I certainly cannot accept those things yet. I just can't. And I can't forgive myself. I don't think I ever will either, accept and forgive. A burn injury is devastating, not that I'm taking away from any other injury, I'm just speaking from personal experience and from what doctors have spoken of burn injuries. A burn injury can take away who you are, your confidence, your own body, your dreams. A burn injury is a life long process to fix and reconstruct. I don't think it will ever really be over for me, and I'm not just talking surgeries. I'm talking about acceptance of my new scarred body, my confidence, knowing who I am anymore, and destruction of my dreams. The first and last parts I mentioned are the toughest for me and probably the ones I will never be at peace with.

So the quotes says that even though I can't go back and manipulate the past, I can change the future. That's another problem for me. I didn't want to change my future. I wanted to be an actress, a well respected and oscar-winning actress. The best of my generation to come along in theater and film. But now that may never come to be because of the change in my appearance. And that destroys me everyday, like the yearly whipping in The Count of Monte Christo except instead of a yearly whipping, it's everyday. Everyday I endure the torture of that possible loss. My "back up dream", if you will, was to be in the BSU in the FBI (it's actually called the BSU as opposed to the BAU in the series Criminal Minds) and work as a criminal profiler, work crime scenes and work the mind of the killer to catch them. I'm fascinated by that stuff. And this was way before I got into Criminal Minds so it's not because of some fantasy based on a TV series. But even that dream may not be possible because I've researched it and you have to pass a serious physical test and with my limited mobility there's no way I'd pass. Unless by some miracle, with my reconstruction I got enough mobility to get through it. So it's almost like two dreams were destroyed with my injury. It's hard enough for your ultimate dream but for a second to be destroyed along with it, too?

The analogy of the rope is beautiful, I think. Your life is woven together with successes and failures, mistakes and regrets, happy and sad moments but ultimately it is what makes up your life and what develops who you are and your character. That all those things together make up something amazing that you should want to grab ahold of and keep climbing to the top, wherever it may lead you.

Thursday, October 6, 2011


BEING TRAPPED By Alaine M. Coyle

I am trapped inside a nightmare I cannot wake up from
A past that can’t be rewritten or mistakes undone
No matter what I do or how hard I try and fight
My regrets wrap themselves around me every night

This pain surrounds me like an iron cage
I weep and I scream and I fill with rage
A helpless feeling keeps coming over me
As I search in vain for a way to be free

I cannot escape although I try
From this life I am living and do not know why
How did I get caught up with all of these things
This bird will never fly with clipped wings

I want to get away from all of this confusion
Everything I thought I knew was only an illusion
Nothing about any of this seems fair
I just cannot believe I fell into this snare

None of the reasons I am here make sense
I run and I run but face an unending fence
Finally I lose my breath and fall to the ground
Curl up in a ball and wait to be found

This poem speaks to the very depths of my soul.  Everyday I feel like I'm trapped inside a nightmare and every day I never wake up from it.  This nightmare is my reality now and I can't seem to find the strength to accept it.  I am stuck on what I had in my past and any mistakes I made because I can't rewrite them but I still pray to something that they could be rewritten or undone.  But every morning I wake up to the past of regrets and mistakes and I carry them around with me all day, weighing me down.  I have many regrets.  Someone once said that "mistakes are sometimes the best memories" and Jonathan Larson said, "Forget regret, or life is yours to miss."  But again, I don't know how to let go of my mistakes and not live with regrets.  I feel like I define my life with them.  Alaina Coyle says pain is an iron cage and that is most certainly true for me but my mistakes and my regrets also live with me in that iron cage so it's very cramped in there.  I fight and fight to find a way out but I'm locked inside until I can let it all go.  So everyday, as she wraps up the poem in the same way, I curl up in a ball and wait to be found.

Wednesday, October 5, 2011

Doc Appt 10/5/11 - Heavy Duty Surgery Planned

I had a doctor appointment today and I was a wee bit nervous about going because it's been about two months since I've seen my doctor and then I tried to get ahold of him several times about the tattoo (which didn't end up happening anyway cause Kore Flatmo had to leave town for family reasons) and he never got back to me so I didn't know what was up.  Plus, I know he had talked to another one of my doctors who works with all my other medications and was going to work with me on detoxing and evidently they had a discussion and that plan was squashed.  So needless to say, I was having some nerves about going to this appointment.

But it turned out great.  Garrett came in (looking fabulous btw, wearing a grey casual shirt and black slacks) and had a big smile on his face for me, greeted me, and gave me a good hug.  Phew, I felt the nerves calming down now like when the tide reaches the beach and slows down as it gets to it's peak on the sand.  He had an intern with him who actually knew me when I was first in the burn center so that was cool.  So then we got into a conversation about how my neck felt and my eye.  Then we discussed a whole lot of things that were contracted, banded, tight or all of the above with my body.  I just started rambling off all that I felt was contracted and tight and then said, "you're like a doctor/therapist.  I'm just listing off all that's wrong.  Can I just get a whole new body?  Can we do body transplants yet?"  He replied, chuckling, "No, we're not that far along in medicine yet.  And don't worry about telling me everything that doesn't feel good cause when I was working as an intern once under this doctor who had been working with a patient for nearly 20 years and I suspect we're going to be working together for a long time like that, too.  Burn reconstruction is a lifelong process.  But I'm gonna do everything I can for you." (aawwww)

So after I talked about everything that was contracting or banding he decided we would get another surgery scheduled and it's going to be a doozy cause he wants to do a lot of things all at once.  He wants to release  each side of my neck, release my right elbow (probably a z-plasty and try to get that nerve in my elbow untwisted from the scar tissue), a large release in the middle of my chest and a release under my left breast, a possible release on my right wrist and under forearm and a release in my abdomen.  Whoa, that's a lot of stuff to do.  He's also going to do the allograft again as well so it's actually going to be two surgeries on everything that's intended to be grafted because he puts the allograft on first and it stays on for around 5 days and then I go back in for a second surgery on everything to put the graft down.  I will end up being in the hospital for at least 10 days.  So this is going to be a heavy duty surgery.

I'm nervous about it all cause that's just a lot of stuff and I can imagine the kind of pain I'm going to be in with the chest release cause I've had that done once and it was really hard and painful and not to mention all the donor sites that will be needed to do all of this.  Donor sites are THE MOST PAINFUL!  So we are going to be in great need again of medical supplies for when I come home for wound care.  Specifically some more gloves, both sizes of the elastic netting but probably focusing more on the size 10 because I will be having work done on my chest and abdomen and will need to make a "t-shirt" with it and I can't do that with a size 8 BUT we will need the size 8 for other things, too.  Also new on my wishlist is Organic Shea Butter Lotion that was recommended at WBC for keeping my skin healthy and keeping breakdown at bay and so far it's working!!  So that is highly needed now as well to keep my skin from getting open sores before surgery and highly needed for daily use.  Also new is what is called Alpha Keri Oil that was also recommended for me at WBC by someone who tried it and discovered it softened her scar tissue as well as her contractures!!!  I could really use that now as well as for after my surgery to use after showers and as a massage oil into the releases to keep them soft and prevent from contracting.  It will also be nice to get things that aren't just medical supplies to keep me busy while recovering such as movies, books, cross stitching, etc.  I hate asking for help like this but it is most needed and even more so now with this big of a surgery coming up.

So now I'm just waiting for Garrett's MA to give me a call to get this heavy duty doozy of a surgery scheduled.  I get anxious now cause I know it always takes at least a week for her to finally call me.  Let's hope she calls sooner this time.

Sunday, October 2, 2011

Endure to Conquer, Persevere to Save Yourself

"Sure I am of this, that you have only to endure to conquer.  You have only to persevere to save yourselves."  ~Winston Churchill

Sometimes I wonder about this idea that Winston Churchill had.  The idea that I only have to endure to conquer, key word being "only".  I mean, it's not like just enduring to conquer is easy cause that's what I've mostly been doing has been enduring what I'm going through and it's been the hardest thing I've ever done in my life and I still don't feel like I've conquered.  At the end of the day, when I go to bed, I always feel like I've lost that days battle.  Even though I was able to endure that day's Hell, I don't feel like I've conquered it.  Maybe just that I was able to endure that day's Hell meant I conquered.  But I feel like there's more to conquering than enduring.  That you must take part in your own life play and not be someone in the audience just watching my own life play out meanwhile checking the time on my watch every 5 minutes waiting for it to end because my life is so boring.  I think there's more that I have to do to conquer this fight and this battle than just endure.  Enduring is hard enough but I think it's also important to be active in your life and by being active in your life, it will be much easier not only to endure but also to conquer that daily hell.

However, I do agree with the second part, the part about persevering to save myself.  When I first came home, I really didn't do any kind of persevering to save myself until a certain friend/pastor came over to my house, had a chat with me and we got to know each other and then he began a mission to help me persevere by getting me out of the house to do things, to get active in my life.  When I had several friends here in my town, they worked so hard to get me out of the house to go do something with them whether it was just to go over to their house and hang out and play games or go do something else because they knew me sitting the house all day was not going to help heal me emotionally and mentally.  To persevere to save myself means I must keep trucking on despite problems or difficulties.  The very definition of persevere is: "to persist steady in action or belief, usually over a long period of time despite problems or difficulties."  To persist steady in action or belief despite problems, that's the key.  I think I still need a lot of help and practice for that kind of definition because my action and belief is never steady.  It's more intermittent or irregular.  So many people tell me to keep at it, keep it up, carry on, stick it out.  But it's so hard to keep at it, carry on, or "persevere" as Winston Churchill so eloquently put it.  Especially now that four of my friends have moved out of town and they were four friends who played key roles in helping me save myself and heal emotionally/mentally by getting me out of the house.  I still have two very dear friends (they are married) who continue to help me get out of the house but they are also very busy people so I'm often now left at home, alone, where I spend a lot of time inside my head thinking about the past and what could have been and that leads to feeling bad about my life which then leads to stepping off the stage of my life where I play the lead role and sitting in a chair in the audience, in the dark in a corner where no one can see me and I watch my life pass by me.

Endure to conquer.  Persevere to save yourself.  Those two things are key in really living your life despite problems or difficulties that may come your way, but, you must be steadfast in them and that's wherein my problem lies.