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.