Thursday, December 13, 2012

The Wound Is Where The Light Enters

"The wound is the place where light enters you."  ~Rumi

 A dear friend posted this to me on my Facebook wall and I thought it was incredible.  I kind of collect quotes in my head and I had yet to come across this one.

You could take my wound figuratively or literally.  Let's take it figuratively for now.  My wound is most undoubtedly my heart.  Or perhaps even dead dreams.  I've talked about both in extreme detail on this blog.  My wound is especially deep because of the extent and life-changing seriousness of the trauma, which, in turn, causes the brightest light to enter.  The light floods in, bringing with it moments of wonder but also, most often, tears.

I dream many days that my heart will be a source of courage and wisdom someday.  That I will be able to draw upon the experiences I've had to endure and the resulting feelings and share with others the wisdom I've learned and the courage that has taken root in my wounded heart.  In the meantime, I continue to search for what is the wisdom in my experiences that hides within the extensive heartache of them as well as finding the courage to face what I know of my life now as a burn survivor.  Most often my wound, my heartache, is suffocating me with heavy melancholy and I'm desperate to find the light in my heart that can lift it.

Tuesday, December 4, 2012

A Good #37

Surgery #37 is over and it was a quick one.  Also one of my easiest from check in to my dreaded being put under.  Check in went smooth.  Only little hiccup was getting my IV in, of course.  I'm a hard stick.  They immediately brought in the IV team and the first person tried twice and couldn't get it in so they wrapped my hands and arms up in warm blankets and I waited for the second person on the IV team to come in and by this time it was starting to get close to my surgery time.  Finally the second person on the IV team came in and was able to get a really good IV in in my upper forearm on the first try.  Right immediately after she was finished my anesthesiologist came in and he was great from the start.  I didn't hear from him the night before so this was the first time I met him.  I hadn't had him before in the past.  Many times I have repeat anesthesiologists cause I've had so many surgeries but this was our first time together.  And I really liked him.  He was bright, talkative, and funny.  Anesthesiologists who don't talk to me bother me.  But Dr. Chiu talked to me plenty :)  Then soon the head surgical nurse came in followed by my awesome doctor who was in good spirits that morning so we had some fun joking around with each other.  And then the nurse, anesthesiologist and me were off to the operating room.

Once inside the operating room everyone was busy getting ready but the head surgical nurse, the anesthesiologist and my doctor were with me getting me ready.  As Dr. Chiu was putting my blood pressure cuff on my left forearm he noticed my tattoo and asked about it.  I explained it and suddenly The White Stripes were blasting over the speakers in the operating room and I knew who had done it: my doctor :)  He truly is the best.  He always remembers and knows it helps relax me.  Dr. Chiu wasn't familiar with the White Stripes so when it came on I yelled out, "All right!  Rock it!" and Dr. Chiu said, "So this must be the White Stripes, huh?  Well, let's rock it then!  I like!"  It made me smile.  Then he said, "Good music is on and I'm about to put some good drugs in your IV, all is well," and suddenly I could feel the relaxation drugs hit me all the way in my legs and I felt nice and relaxed and my favorite band was playing.  I wasn't feeling so anxious anymore.  Then the oxygen mask went over my mouth and nose and because the IV was up in my upper forearm, I never felt the sting of the anesthesia so suddenly I started to feel warm inside my body (anesthesia will make you feel an inner warmth) so I knew it was going in and my eyelids started to feel strange all the while listening to The White Stripes until I was out.  It was a good way to go under.

The surgery was only an hour.  The only other surgery I've had that's ever been that short was the one I had done on the contraction beside my right eye.  I woke up quick from this one, too and I didn't feel too bad.  I wasn't in too much pain, just a little uncomfortable so I had a couple shots in my IV of pain medication.  Not too long after I had woken up I suddenly felt a hand rubbing my left shoulder and I looked over and it was my doctor coming to check on me.  So sweet.  He said everything went really well, gave my arm a touch again and went out to talk to my mom again about when he wanted us back for a first fill.  He had talked to her earlier when he was first done with the surgery but he forgot to talk to her about when he needed me back.  And not too much later I was headed back to the Day Surgery area to recover some more.  I was actually going to have a day surgery.  For the first time in 37 surgeries I didn't have to stay in the hospital.  My mom fed me some diet Sprite and some crackers once we were back in our Day Surgery room and I got some more pain meds along with some prescriptions from my doctor.  Soon I was getting unhooked from everything, getting dressed and being wheeled out in a wheelchair to the car to go home.  I was in and out of the hospital so quick I barely felt like I was there.

So overall, surgery #37 was a breeze with everyone in good spirits.  I now have a tissue expander in on the right side of my neck with a JP drain coming out for drainage.  The JP drain only has to stay in for a couple days and then my mom can pull it out.  She's done it before so she knows how to do it.  The tissue expander is small right now with only a little bit of fluid in it but it's a bigger expander than I thought it was going to be.  And it's really hurting me good today so I'm not feeling all that well.

 (Tissue expander just underneath the skin on the right side of my neck.  It's small right now so it doesn't pull on the stitches.)

(The JP drain, which was just emptied before this picture was taken so you didn't have to see gross drainage.)

Monday, December 3, 2012

Surgery #37

I'm having surgery again this morning.  My fifth one in six months and 37th overall.  But it's a smaller surgery. Should only take a couple hours and it's supposed to just be a day surgery but I've never had a day surgery in my life.  Even when I was scheduled to have a day surgery once before they still decided to keep me overnight in the burn center.  So we'll see if this really is going to be a day surgery today. I really hope so.  I don't feel like another hospital stay.

So this surgery is to put a tissue expander in my neck, the right side of my neck.  And the intention is to blow up the expander with saline solution over time so that it gets bigger and bigger and stretches the skin in my neck.  Once the doctor decides there's enough skin, I will go back into surgery to have it taken out and the stretched skin will be pulled around the right side of my neck where I keep having problems with that contracture.  This way it is less likely to contract.  That's the theory anyway.  This will be my fifth expander so this process is not new to me.

Once again I am nervous and anxious to do surgery again.  I don't like being put to sleep.  It frightens me the most.  Surgery is at 10AM with a check in at 8AM.  So I guess I better wrap it up and get ready cause we'll be leaving soon.  Thank you for all your thoughts and prayers.  They mean so much to me and I really need them so thank you.  See you after.

Friday, November 30, 2012

The Language of Recovery

"Life's circumstances are not always what you might wish them to be.  The pattern of life does not necessarily go as you plan.  Beyond any understanding, you may at times be led in different directions that you never imagined, dreamed or designed.  Yet if you had never put any effort into choosing a path, or tried to carry out your dream, then perhaps you would have no direction at all.
Rather than wondering about or questioning the direction your life has taken, accept the fact that there is a path before you now.  Shake off the 'why's' and 'what if's,' and rid yourself of confusion.  Whatever was - is in the past.  Whatever is - is what's important.  The past is a brief reflection.  The future is yet to be realized. Today is here.
Walk your path one step at a time - with courage, faith and determination.  Keep your head up, cast your dreams to the stars.  Soon your steps will become firm and your footing will be solid again.  A path that you never imagined will become the most comfortable direction you could have ever hoped to follow.
Keep your belief in yourself and walk into your new journey.  You will find it magnificent, spectacular, and beyond your wildest imaginings."  ~Vicki Silvers

Life's circumstances are not what I wished them to be.  And maybe life never would have been as I wished it to be but I was happy living in New York City living my life and trying to make my dreams come true.  And then a fateful day happened four and a half years ago and I have questioned my life's direction ever since.  I think in some way I have accepted the path that lies before me now.  I have accepted what life is now for me.  But what I haven't done is dream again.  I don't know where my life is going and that upsets me, frustrates me.  I still want to hold on to a dream that I've had since I was in 6th grade but that dream may have to change and that too upsets me.  I question all the time the direction my life has taken and I know I need to stop doing that cause it only makes me unhappy.  I need to learn to accept what is and open my eyes to the path before me now.  Learn to dream again and cast them to stars above.  I need to learn to adapt to what life has thrown at me.  Most importantly I need to believe in myself again and walk into my new journey with my head held high with courage.

Saturday, November 24, 2012

Thanksgiving 2012

Our Thanksgiving holiday was small this year.  Just me, mom and dad.  The table felt kinda empty.  But it was a nice relaxing day all in all.  We were all up early for some reason.  My eyes were wide open at five o'clock Thursday morning and so I went out to the living room where I continued on with my very complicated paint-by-numbers I got out yesterday evening.  I started this project awhile back but it's a very detailed one so it's been taking me awhile.  I thought this Thanksgiving weekend would be a good time to work at it again.  Not too much longer did my mom come out as well.  She found herself awake as I did and decided to not just lie in bed any longer.  So as I painted, she read and about thirty minutes later, my dad joined us.  Soon while my parents were taking intermittently taking care of the bird, we were all lazily watching the Macy's Day Parade on TV.  Which always makes me a little sad cause it makes me miss New York, especially the Broadway show parts.  I continued to paint and read through the morning and soon you could smell the turkey cooking in the oven.  The night before my mother had done some pre-turkey meal preparations like the homemade turkey noodles, the grape salad, and of course, the pumpkin pie.

Soon the turkey was ready for it's first baste.

(Dad basting the bird)

While stuff was going on in the kitchen off and on, I drank Sparkling Cider and acted like the paparazzi when my parents were in the kitchen cooking.  Also occasionally sneaking a couple olives off the table when my parents weren't looking.  Around 2:00 PM it was time to eat.  The bird was done.

 (Proud mom and dad of a job well done)

It was a small meal because it was just the three of us but oh so delicious, especially my mom's famous dressing.  Oh, my mouth is watering just thinking about it.  Along with a juicy turkey and delicious dressing we had homemade turkey noodles, a grape salad, sweet potatoes with the marshmallows on top, olives, cranberry sauce, asparagus, and rolls.  After stuffing ourselves and cleaning up, nap time inevitably followed...

(My dad in a turkey slumber)

After we all took a little turkey induced snooze, we read, played some games and then later had turkey sandwiches (the best!) and watched a movie.  It was a peaceful Thanksgiving Day.  

Thursday, November 22, 2012

Thankful For....

"Life is a succession of lessons which must be lived to be understood."  ~Ralph Waldo Emerson

It is Thanksgiving morning and I'm thinking about my life and what I am thankful for this year.  I am firstly thankful that my life wasn't taken from me four and half years ago.  That I am alive to glory in this so called life.  That I am alive to experience the possibilities life has to offer.  I am thankful for my more than supportive family who have been by my side every step of the way on this journey since the accident.  I am thankful for friends who let me be me without any kind of judgment and who encourage me to blossom into the person they believe I already am deep inside my soul.  I am thankful for doctors who don't give up on my difficult case.  I am thankful for the lessons I have learned and all the people who have come and gone and come and stayed in my life because they have all helped shape who I am.  As I sit here and list off my thanks, it is important to remember that I must not just list them, but live by them.

"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.  ~John F. Kennedy

Friday, November 16, 2012

Living and Dwelling in Suffering

I was watching a television show yesterday morning and there was a young woman on there that said something that hit home for me.  She was sold into slavery at a young age until an anonymous caller finally made a call that would save and change her life.  But when asked if the feeling of loneliness was still there or was just a memory for her, she replied, "In order to be happy with your life, bad things have to be a memory or you won't be able to move on."  Got me thinking.

I live nearly every day in suffering but I also live nearly every day dwelling in my suffering.  There's a difference between living in suffering and living in suffering.  Get what I'm trying to say?  Of course I'm going to suffer in some way every day.  That's just the nature of the accident and the way my body wants to work when healing.  I can't not suffer every day.  Every day is a challenge from the moment I wake up.  But I also tend to dwell in my suffering.  The things I have had to go through tend to stay with me every day instead of being a memory that I can move on from.  I don't dwell in my suffering for attention or to gain something.  I dwell in my suffering because I don't know how to make the bad things that have happened with the accident or since the accident become just a memory.  I don't know how to be happy because I'm constantly reminded of my suffering.  With every turn of my head the contractures pull and I'm reminded.  With every reach to try and get a glass or plate the contractures pull, restrict my movement and I'm reminded.  My right leg, where the free flap was taken and muscle with it, is weaker than my left and tires with every step and I'm reminded.  With every glance in the mirror I'm reminded.  With every surgery and with every pain, I'm reminded.  I feel like I can't escape it.  How do I make them a memory so that I can move on from dwelling in the suffering and just be happy?  Oh how I'd love to be happy again.  But the suffering gets in my way every day.  Maybe it's still just to soon for my suffering to be a memory.  But then how long must this go on until it does become a memory?  How much of my life must be wasted in the dwelling of my suffering before I can move on?  I'm getting really tired of being stuck in this dark maze where I can never seem to see the rays of light from the opening signifying that I'm even near getting out and letting all the bad just be a memory.  Instead it's just dark and I keep running into dead ends and the suffering continues on.  The accident and all that has come with it is lived every day for me and makes moving on evermore difficult.

Thursday, November 15, 2012

Forgiving Myself

Again, yesterday, another movie line popped into my head as thoughts of the accident and my situation, my life, were ruminating in my mind (I live in films and theater, always have).  It's a line from an oldie but a real goodie - Medicine Man with the great Sean Connery and Lorraine Bracco.  Sean Connery is talking about why his wife left and he says, "No one is allowed to forgive me until I forgive myself."  That is exactly how I feel.  There are so many days where I just break down because even though it was an accident, I can't forgive myself for what happened.  And when my mother tells me she forgives me, that she's always forgiven me and never blamed me, I can't help but feel like Sean Connery in that moment.  That no one is allowed to forgive me until I forgive myself.  And I honestly don't know when I ever will, if ever.  I'm so angry at what happened, even though I have no control over what happened that forgiving myself is inconceivable and allowing someone else to forgive me is almost as inconceivable.  I know I should forgive myself and I know I should let others forgive me but this accident changed everything about my life and took so much from me.  So until I can forgive myself, no one else is allowed.

Monday, November 12, 2012


I had a therapy session this week.  My first since coming home from the hospital and afterwards, thinking back on the session, a movie line popped into my head.  It's a line from the remake of the movie, "Sabrina" with Harrison Ford, Julia Ormond and Greg Kinnear.  It's been awhile since I've seen the 1954 original or read the play so I don't know if it's an original line but it goes like this:

Sabrina:  "I found myself in Paris."

Linus:  "You were missing?"

Sabrina:  "I was."

If you dig into those three lines, there's really a lot said in them and I can really relate to what she's truly saying.  She wasn't physically missing, of course.  But she was missing in an abstract sense.  That's how I feel many days.  Sabrina found herself in Paris.  For me, I was finding myself in New York, finding what my personality really was as well as an emotional self and a physical self.  But my journey to finding myself in New York got stunted by the accident when I came home for a little break.  Now it's proven to be even more difficult cause I'm not just dealing with continuing on the journey of finding myself, I'm having to deal with how the complications of the accident has changed and/or shaped all that is me.  More than four and a half years after my accident, I'm having difficulties finding myself so I do feel a little missing.  I think though that even despite the complications of finding myself because of the accident, I have discovered some very genuine attributes to myself that I may not have ever found in New York.  But it has been a much more difficult journey since having the accident.

So how does one go about finding oneself when they're "missing" like Sabrina was and kinda like how I feel now?  Especially dealing with complications from an accident like a change in how you identify with yourself physically?  How looking in the mirror isn't the same reflection anymore because of scars and a feeling of a different set of eyes, scrutinizing eyes, looking back at you?  I know I don't get out as much as I should.  I'm not around people, my friends, as much as I'd like for whatever reason and that's a big part of finding the missing self - who you are around people and your friends.  That can tell a lot.  There's also being out in the world and discovering what you like and don't like.  And then there's finding out who you are when things are going right, and who you are when things aren't going so right.  The latter is where I primarily find myself because of the accident.  I'm struggling to find who I am when things don't go so right in life.  And I'm struggling to get myself out of the house to find out who I am with people and my friends because it should balance who I am when I'm just with me.  I used to be a social butterfly.  Am I still?  I'm having difficulty answering that question because the accident has left me with a foreign body that makes me nervous to be around people so I don't know if I'm not a social butterfly now because of that, or if I just am not.  I have a feeling I am because I remember feeling comfortable and happy around people and friends before. But again, the accident has complicated things for me.  I envy those who have a solid idea of who they are.  

Being "missing" and trying to find yourself can be a difficult journey.  I feel like I'm on two parallel journeys.  One journey is the road to recovery from a life changing trauma and the other is finding myself again.  They have both been so very difficult for me and I feel no closer to any kind of success or truths on either journey than when I first awoke from that coma over four and a half years ago.  I do understand that either journey is not easy and can take a long time but patience is not my virtue, though I have had to find it in myself to get through some of the things I've been through.

Friday, October 26, 2012

Surgeries #35 and #36

Well, surgeries #35 and #36 are over.  I spent 15 days in the hospital, four more than was planned.  I was scheduled to be discharged on the Friday after my second surgery but when the doctor took down the bolsters and the dressings for the first time since the second surgery to take a look at the grafts, he was not too confident about what he saw.  The grafts were too fragile yet to send me home.  So he planned to keep me in for a few more days and release me on the following Tuesday.  I was a little devastated at that news.  After about two weeks in the hospital, maybe even just a week, I'm ready to go home.

My first surgery was a bit of a blur from the moment we checked in.  Apparently the person scheduled for surgery before me just didn't show up so they were hurrying to get things ready with me to get me in there so I ended up going into surgery an hour earlier than I was scheduled for.  I was a little put off by my anesthesiologist though and I like to feel comfortable with my anesthesiologist since I have such a thing with being put under.  He was just very cold and brash and didn't really talk much to me.  All business.  And in all my previous surgeries, I'd say all of them always prepared me for when they were going to put me to sleep.  I mean, I've been around the block and I really know when I'm about to be put to sleep - oxygen mask goes on and then pretty soon the anesthesia is hitting my veins, stinging as it flows through the IV.  But I just like my anesthesiologist to talk to me.  At the very least, let me know they're about to put the anesthesia in and I should be out soon.  Just gives me about 8 seconds to prepare myself for what frightens me most about surgery.  But this anesthesiologist said nothing.  The oxygen mask was put over my face and soon I felt the sting of the anesthesia, my eyelids became heavy, my body began to float and then I was out.

It took me a little longer to wake up than normal but soon I was reunited with my dad and heading back to the OBC.  I was put into an ICU room first.  A couple days later they transferred me to the other wing where I would have my own bathroom and shower.  My neck was not in too much pain but the backs of my axillas (my armpits) were in the most pain.  I even got to have a day with one of my most favorite nurses, Jerri.  I just love her.  She's wonderful.  Her favorite thing is to find a picture of a hot guy in a magazine ad and tape it up in my room.  Hehe...

My second surgery, surgery #36, started off a little late.  I was scheduled to be in surgery at 8:30am but they didn't even come to get me until 9:15am and then I waited a little longer down in the waiting room for inpatients going into surgery.  I was not pleased with my anesthesiologist this time again either.  She knew that this was to be my 36th surgery but she talked to me about things like I'd never experienced them before.  Telling me that the donor site was going to be the worst part of it all and I'm thinking, "yeah!!  I know!  Done this 35 times already!  This isn't my first rodeo."  Then when I told her I liked to be told when she would be putting the anesthesia in my IV she overdid it saying things like, "Now you're first clue you're about to get the anesthesia is when we put the oxygen mask on you."  Yes, I know.  I know!  I just like a heads up before I feel the sting of the anesthesia!  And soon, once again for the 36th time, the sting hit, my eyelids became heavy and didn't feel like my own anymore, my body began to float and I was out.

After this second surgery of this two part surgery it took me even longer to wake up.  But eventually I was awake again, in great pain, and headed back to my room in the OBC where I continued to sleep more, having a hard time waking up.  This time I was also put on a Dilaudid PCA.  I'm almost always put on a Dilaudid PCA after each surgery but for some reason after the first one I wasn't.  But they smarted up and remembered how tolerant I am to pain meds so they got a midline in me before the second surgery and after the second surgery got me on the Dilaudid PCA to manage my pain better.

A couple days after the second surgery, I was visited by Garrett's new physician's assistant and was told that if I could wean off the PCA I could go home Friday.  So I did just that and as I said in the beginning of this, Friday didn't work out and I was pretty upset.  My mom had come up to take me home so I felt bad that she took time off work to come get me and then it didn't happen.  But she stayed with me through the weekend which was nice.  By now I was ready to go home and sick of sitting in my room, mindlessly watching bad TV as the days passed painfully slow so I wasn't sure how I was going to get through the Monday before I was to be discharged on Tuesday.  But somehow I got through it and before I knew it, Tuesday arrived and they were pretty quick in getting me discharged.  Finally I was going home.

My grafts look pretty good for the most part and my neck feels better where it had tightened up so badly.  But I'm afraid already that it's going to require further action.  We'll see.  I don't know what's next.  I have a post-op follow up appointment with Garrett next Thursday so I'll know more then.  But what I do know, is I'm still in a great deal of pain sometimes.

 (Neck release and graft) 

 (Back right axilla release and graft)

(Back left axilla release and graft)

Friday, October 5, 2012

Pause And Sit With It

There are many things that I either immediately react to in anger or I close up so I don't let any kind of feelings get in.  This way I don't have to feel any pain, emotional pain.  My therapist and I have been working on this for the past few weeks.  And she's on a roll with something that after my most recent session I'm really going to try.

This is something that many of us may do on a daily basis, a weekly basis, but it's something many of us do.  We try to avoid some kind of emotional pain, avoid it at all costs so we don't have to feel the heartbreak that will result in feeling the emotions, in feeling the pain.  But heartbreak in life is inevitable.  We usually experience our first heartbreak at a very, very, and I mean super young age.  Like 4 or 5 years of age.  They of course are simpler forms of heartbreak at younger ages but as we grow older they become more complicated and we usually do all that we can to avoid it because it hurts like hell.  But if we do experience it we usually put some sort of blame onto ourselves like "if only I had (fill in the blank)" and we analyze the shit out of it to try and solve what went wrong or what we did wrong.  And we do all this to block out feeling the pain of the heartbreak because we don't want to go through the horrible feelings that accompany heartbreak.  I do this.  I've gone through many heartbreaks and the pain of them in my 30 years, the worst of course is the heartbreak of the fire.  But I have done a lot of "if only I had (fill in the blank)" and analyzing my life before and after the fire, where I went wrong, what things I did right.  And I do all of that to block out actually feeling the heartbreak of the fire, of the accident.  Even though there are many times when the pain slips through the cracks in the walls I have put up but for the most part, I don't sit with my heartbreak.  I don't sit and feel the feelings that come with the heartbreak.

There's another heartbreak I endure but because the person it involves would suffer from me speaking about it, I'm not willing to make that public right now.  But this other heartbreak involves breaking out into anger and frustration and putting up the wall to prevent feeling any emotions instead of pausing and sitting with what feelings come up, and most specifically sitting with the heartbreak that the situation with this person has brought about.  Just pausing and sitting with my heartbreak and let the feelings come in and see what comes of it.  See how I feel after the feelings and the pain has passed through for the time being.

I know the pain of any heartbreak is wickedly painful.  But what would happen if when I get my heart broken again and again through the process of the recovery from the fire or from the fights I get into with this person, if I just paused and sat with the feelings of that heartbreak for a minute and let come what comes of it.  Feel the pain, let the tears fall and sit with it.  Pause and sit with it.  I've never really tried this method before.  I've either forced the wall up or the pain has been so overwhelming that I couldn't help but feel it.  But even when I couldn't help but feel the overwhelming pain, I never really just sat with it.  I tried to battle it and stop it cause it hurt so bad.  But on the advice of my therapist, the next time my heart breaks (and your heart can break over and over again for the same reason or different reasons), I'm going to pause and just sit with the emotions and pain that comes with it.  See how that fairs with me.  And if you're like me and many other people who try to avoid heartbreak or put up a wall when it does break, try to kick down that wall and pause and sit with what you're feeling.  We can't avoid heartbreak.  It's inevitable.  But we can decide how we deal with it when it happens.  And though pausing and sitting with it may seem like the more painful way, it may turn out to be less painful over time.

Friday, September 21, 2012

Pain is Inevitable but Misery is Optional

"Happiness and misery depend not on how high up or low down you are - they depend not upon these, but on the direction in which you are tending."  ~Samuel Butler

I think this is not only a different way of looking at happiness and misery but also a very powerful statement.  Cause if you really think about it, it really isn't necessarily how high up or low you are but the direction you intend to take for your future that makes you either happy or miserable.

In the best workshop at this year's WBC that I went to called, "Pain is inevitable, Misery is Optional: Your Right to Happiness," I learned that pain is either physical, mental or emotional but misery is circumstantial.  And I think the quote above fits right in with what I learned in that workshop.  So if misery is circumstantial and not dependent on how high up or low you are, we have the power to change our state of misery by changing our circumstances and/or changing the direction that we dream or believe or intend to head.  However, changing our circumstances isn't always easy because if we have had a trauma in our lives, we are thrown into certain circumstances that breed misery.  But we can change our thoughts on our direction.  If we think negatively all the time and that we're never going to amount to nothing (I am guilty of this on several occasions, I admit) of course we're going to be miserable and thereby making our circumstances miserable.  But if we at least try to have a positive attitude and dream our dreams, believe that we will amount to something if we would just put ourselves out there and try, think of a positive direction in which we intend, our miserable circumstances morph into a more happy state and even happiness in ourselves.  For what I also learned (and also knew already but it was a good refresher) in that workshop is that we most often seek happiness OUTSIDE ourselves when real happiness can only be found WITHIN ourselves.  And much of that is our thoughts on the direction in which we intend.

My circumstances are miserable.  I can't deny that.  I'm not the beautiful girl I once was and who knows if that will change as time and surgeries go by and worst of all, my body doesn't cooperate when it comes to healing properly so it's always hit or miss if a surgery is going to work or if contractures will take over.  And I also tend to think I have nothing positive in store for me in my future.  But what if I were to change my thoughts on the direction in which I intend, like, "I'm going to get back into show business," or "I'm going to get my PhD in Clinical Psychology and go to work for the FBI," or maybe even both, then my misery may lift and my circumstances may also change in the process because I may find myself in happier circumstances if I believe in those thoughts because positive thoughts and intentions can have the great power to change the misery in your circumstances into happiness.  I have a right to happiness but it's ultimately up to me and my desire to change my circumstances from miserable to happy and not be afraid to step out of that misery and be happy.  But there's gotta be that desire to do so.  No one and no material can do this for me.  It's gotta be a desire to be happy that burns like a flame.  And I'm sick of being miserable.  I want to change my circumstances and I want to change my thoughts on the direction in which I intend.  Like Pink sings in her new album with the song, "Try", Where there is desire there is gonna be a flame, where there is a flame someone's bound to get burned, But just because it burns doesn't mean you're gonna die, You gotta get up and try, try, try.

Tuesday, September 18, 2012

World Burn Congress 2012

This year's World Burn Congress for 2012 was in Milwaukee, WI.  Last year was my first year.  This would be my second.  I didn't think I would be going because I didn't think I'd get a scholarship two years in a row but I got a phone call on the afternoon of August 16th on our way back from a Jack White concert and a doctor appt from my old occupational therapist at the Oregon Burn Center and she told me they wanted to give me another full scholarship to go.  How could I say no?  So all we would have to pay for was my companion's plane ticket and registration fee.  And this year I was taking my mom.  Last year I took my dad.  So this would be my mom's first year at WBC.  I was very honored to receive another full scholarship and very excited to go for another year.  It's important to me.  I learned so much last year that I knew I would learn a lot again this year between workshops and keynote speakers and just being around other survivors, old friends and making new friends.  It's a long hard trip but so worth it in the end.

So Monday mom and I drove down to Portland to stay at the Sheraton so we could leave our car there instead of at long term parking.  Plus we had to be at the airport around noon anyway so it would have been too long of a day driving down the same day we flew out.  Tuesday we woke up, went downstairs to have some breakfast in the hotel restaurant and I was really getting excited now.  I wasn't looking forward to the flights cause OBC handles all the flights with everyone who's sponsored that goes so you never know what they're gonna put you on and there's always a layover so that wasn't too much fun to think about.  But thinking about being there, a new city to explore and seeing old friends from last year and the opportunity to make new friends was the exciting part.  Soon we were heading out to the airport on the shuttle from the hotel.  We were a little worried about Doc getting through TSA security cause he can't go near anything magnetic so I couldn't take him through the xray machines or he'd go haywire so on the TSA site, it said I would have to make a TSA member aware of it and ask for a pat down.  Well, I didn't exactly know how this was going to go down in reality.  TSA members are not always the friendliest of people.  They usually hate their jobs and wish they weren't there.  But luckily the xray that you used to walk through has officially been replaced by a non-magnetic machine that scans your body so all I had to do was walk through and once I got to the other side, Doc of course showed up on their screens, I let them know I had a diabetic insulin pump and they made me wipe my hands on it and then tested my hands for any chemicals cause I guess I could make a bomb out of my pump.  Who knew.  

After getting through the airport security, we grabbed some lunch and then went to Starbucks where we sat and had some coffee, waiting to go to our gate.  We had some time but soon that time passed away and we headed down to our gate.  We met up with another burn survivor friend from Portland that I knew at Starbucks so we all walked down together and soon enough one of my favorite people I've met in the burn survivor community came walking to our gate and she gave me a big hug.  It was great to see them both.  

(Mum and I sitting down for some lunch at the airport)

We were flying US Airways on the way there.  I'd never flown that airline before nor had I ever heard of it so I was expecting something a little ghetto but it turned out to be quite nice actually.  Pretty spacious and friendly.  Our layover was quick both coming and going.  So on the way over on our layover, my mom and I hoofed it to the other gate all the while keeping our eyes peeled for some food we could grab real quick because it would be our only food between then and when we landed, which was after midnight local time.  Luckily we found a little place selling sandwiches so we grabbed a couple and continued on to our gate which began loading not long after we got there.  My mother's favorite drink on an airplane trip is ginger ale.  She always orders a ginger ale when they come around to ask if you'd like anything to drink. 

(Mum and her ginger ale)

Finally we arrived in Milwaukee, Wisconsin.  There was about six of us who were all traveling from Portland to the WBC so we put three each in a cab and headed to the Hyatt, where we would call home for the week.  I checked me and my mom in and we headed up to our room, which was on the sixteenth floor, and plopped down on the beautifully made beds once the door was shut behind us we were so tired from all our traveling.  The hotel was gorgeous.  

 (Inside the hotel, up on the 16th Floor)

 (The kind of elevators with the glass windows on the back so you can see out when you're going up and down.  My mom couldn't look out, hehe.....)

 (Our room, room 1606)

We didn't have too early of a morning the next morning but early enough with the time change.  We had registration at 10:00 A.M. so we had to have some breakfast before then and then we would have a little bit of time after that to get our things together, look at the schedule they provide before our pre-congress workshop began at 12:30 P.M.  

(Mom and I at breakfast Wednesday morning)

(All registered.  Mom has a red heart on her name tag which indicates that she's a first timer and first timers get lots of hugs :) )

This pre-congress workshop is a little extra fee and they're usually about four hours long but always worth it.  Then everything really starts on Thursday and lasts till the banquet on Saturday night.  My pre-congress workshop that I signed me and my mom up for was "Not Just Surviving: Tools for Thriving After a Burn Injury."  And it was really good.  I don't think it was as good as the pre-congress workshop me and my dad went to last year but still, very good and worth the extra fee and time.  After that workshop, we were done until the Walk of Remembrance at 6:00 P.M. and then the kick-off Gala at 7:30 P.M.  I always love the Walk of Remembrance.  It's humbling and a great way to kind of start things off.  

 (The banner that is marched out front that everyone is welcome to sign. Me and my mom's signature is up by the where that water bottle is.)

(My girl Jan and I before the Walk)

 (Sweet Mona and I getting ready to make the Walk)

 (The bagpipers who always lead us on our Walk of Remembrance.  They sound so beautiful)

 (Firefighters always lead us in our walk and stand along the side of the road to welcome us)

 (Hundreds of survivors, caregivers, family, friends, and health care professionals walked)

 (Reached our destination)

 (At our destination, before speeches began, the bagpipers played some more music) 

At the kick-off Gala, they provide food for dinner and some music but there I met up with my first old friend, Luciana from Florida.  She's originally from Brazil but she now lives in Florida with her husband.  I knew her long before I met her for the first time in person last year at WBC so it was so wonderful to see her again this year.  Last year she brought her husband and this year she was with her mother like me!  So we sat at a table together and talked and talked and caught up on some things.  She's a wonderful girl.  I adore her.  After we had eaten and talked with some people, my mom and I were pretty tired so we headed back to our hotel room where we looked over the next day's schedule and eventually crashed.  

The second day they provided both breakfast and lunch for us so all we would have to figure out for ourselves was dinner.  But we had that all figured out because we went to this wonderful little joint about a block and half from our hotel that the bellhop highly recommended for lunch on Wednesday before we went to our pre-congress workshop and we fell in love with it.  Cute place, great food and great service. 

(Buck Bradley's Saloon and Eatery)

We eat breakfast in the big ballroom over at the Frontier Airlines Convention Center and then soon after breakfast was our first keynote speaker - Kyle Maynard.  And he was AMAZING!  His whole shtick was "No Excuses."  He had been born with a congenital defect that left him with no arms past the elbows and basically no legs but he did sports and even climbed Kilimanjaro on all fours all the way to the summit.  His story was incredible, he was an incredible speaker and his message was inspirational.  Both me and my mother LOVED it.  Then lunch was right after his speech, which was provided, and then we had another workshop to go to that would be the best workshop I attended all week called, "Pain is inevitable, Misery is Optional: Your Right to Happiness."  It was about an hour and a half long workshop but I got so much out of it.  I'll have to do a separate blog post just on that workshop alone cause if I included it here, this post would be a novel.  Then once again, we were done for the day around 4:00 but it was a miserable weather day.  Raining.  So we stayed inside, except for venturing out to our favorite restaurant in Milwaukee that we knew of during a let up in the rain later.  

Friday we didn't have much later in the afternoon and it turned out to be a beautiful day so we decided that would be our day to go on the River Walk which is a beautiful walking route along the Milwaukee River not far from our hotel.  We pretty much started at the north end of it and walked down to the farthest point south that we could go.  It was a good walk so we got some exercise and sunshine and fresh air in.  That night for our dinner we went to Rock Bottom which was along the river.  

 (Boats along the River Walk)

 (Mum and I starting the River Walk)

(Eating at Rock Bottom Brewery)

Saturday we hardly had anything to do cause it's the last day and there wasn't anything going on that applied to me except the second keynote speaker that morning.  Who was also AMAZING.  Both keynote speakers were just so great.  I got so much from both of them.  This man was a little different, he was an actual burn survivor but his message was impacting.  It left it's mark on me for sure.  Then after that we had the closing ceremonies and J.R. Martinez accepted the 2012 Advocacy Award and he gave a little speech so that was a lot of fun to see him in person.  Later after the passing of the flag at the end of the closing ceremonies (which is always emotional), I got an autograph from J.R.

 (The main ballroom in the Frontier Airlines Convention Center)

 (J.R. Martinez accepting his award and giving a speech)

 (Passing of the Phoenix Society flag)

 (Mum and I at closing ceremonies after we've passed the flag)

 (J.R. signing a picture card for me)

 (J.R. signing autographs)

(My personally signed autograph from J.R. Martinez)

That night we had the closing banquet where we are served a three course meal and listen to a few speeches from people who get awards for the year and then the band plays and you just have a great last night.  

 (Mum and I at our table at the Closing Banquet)

 (Our banquet table, table 24)

 (Fellow Oregon Survivor, Maxine and I at the Closing Banquet)

 (Oregon Survivors Laurel and Maxine)

(The band at the Closing Banquet)

It was sad for me cause I really don't know if I'll get to go next year.  I mean, are they really gonna award me another scholarship for a third year?  I'd love to go as it's in Rhode Island next year so we'll see how everything goes.  I learned so much again.  Lessons that will stick with me forever and memories to last forever.  It was so good to see my old friends from WBC last year and great to make new ones.  I feel at home around these other survivors so it's always sad to leave.

CLICK HERE to see the Phoenix Society's World Burn Congress 2012 slideshow!

Sunday, September 9, 2012

Camping At The Cabin At Anthony Lake

This last weekend we had a second camping trip but this time we went up to Anthony Lake to stay in the Forest Service Station cabin up there that they now rent out.  It can sleep 15 people with two floors, a fully equipped kitchen, a fireplace in the living room, a dining area, and a full bathroom.  There was also a big front porch, a picnic table out front beneath the trees, and a gravel campfire area where we sat around our campfire every morning and evening.  This was the first time we stayed in this cabin, which was more like a house it was so big.  Our dogs really enjoyed it too with all the space and the ability to wander around outside without a leash cause we were surrounded by the woods.

 (The Forest Service Cabin we stayed at)

 (The living room area)

 (The Dining area)

 (Fully equipped kitchen)

 (The bedroom on the first floor)

 (One of two bedrooms upstairs)

 (The second bedroom upstairs with three twin beds)

 (View of the picnic table area from the front porch)

 (The campfire area where we sat every morning and evening/night)

And the weather was beautiful.  And warm!  It was colder at Emigrant Springs the other weekend than it was higher up in the mountains at Anthony!  So it was very comfortable weather.  We took subway sandwiches up with us to eat the first night there so we didn't have to do any cooking while we were unpacking and getting situated and could also enjoy our first evening there.  Later as the sun started to set, my mom and I walked the short distance to the lake and just walked a little bit before we returned to our cabin and started up our campfire.

 (Anthony Lake and Gunsight Mountain)

That night, we all sat around the campfire, mom and dad reading and I worked on a cross stitching project and had some good conversation and some laughs.  We also roasted some twinkies over the campfire before turning in.  Oh God, those are soooo good.

 (The reason my dad looks a little weird is because there's a little doggie in his jacket)

 (Working on my cross stitching project)

 (Getting the twinkies ready to roast!)

 (Dad in charge of roasting the twinkies cause he's a pro at it)

(Dad taking the first bite of a perfectly roasted campfire twinkie.  mmmmm.....)

The second day we enjoyed some coffee while sitting around the campfire in the early morning and it was hardly cold!  So wonderful.  It's my favorite part of the day while camping.  Dad made the breakfast of champions - Biscuits and Gravy and eggs :)  Yeah, I didn't exactly eat the best on this camping trip...

 (Dad laying out the biscuits)

 (Dad using the biscuits to look like a bug hahaha)

 (Scrambling some eggs)

 (The finished product!  Yum!!)

(Eating breakfast)

After we cleared the table, dad went back outside and mom and stayed inside to take a short nap and I continued with my project.  After mom's nap, she and I decided to take a couple dogs out down to the lake and walk for a bit.  It was a bit of a walk all the way around the lake so I wasn't sure if I wanted to try it but I started out and it was just so pretty and I did some filming and was having some fun that I decided to go ahead and walk all the way around the lake.  There's some snippits of the walk around the lake that I wanted to include here but they don't want to upload.  So I'm sorry you won't be able to see some of a very beautiful area.  

 (Mom and I out on our lake walk)

 (There were always lots of fly fishermen out on their little boats on the lake every day)

 (On the backside of the lake)

After the great and wonderful walk around the lake we needed to rest....and so did the dogs we took with us, Opal and Morgan.  Morgan passed out on the couch and didn't move much for awhile so I worked her out pretty good.  She rested good that night.  

We had some lunch - hotdogs - and then my mom and I set up our camping chairs up on the big porch and she read again while I worked on my project again.  Then my dad decided he would take the other two dogs for a walk around the lake.  So it was just me and my mom sitting on the porch enjoying the great outdoors and the day.  Once my dad got back it was about time to make some dinner.  Tacos.  After dinner and cleaning up we were out to our campfire again.  And of course before turning into the cabin, we roasted twinkies again.  I know, I'm a diabetic but they're just too good and I'm on a little vacation here!  Let me have a break once in awhile.  I was sad.  It was our last night and I was really enjoying our camping weekends, especially this one.  It felt too short.  I needed more time out there.  But it was a great little break and we had to get back anyway cause my mom and I are leaving again right away tomorrow cause we fly out to Milwaukee for the World Burn Congress Tuesday.  So it was another good camping trip.  These past two weekends have been good for me to get out of the house.  Now, on to the next adventure! - World Burn Congress in Milwaukee!!