Wednesday, August 24, 2011

Fantasies and Daydreams to Keep Me Alive

As a very creative person with a wild, and I really mean WILD, not to mention vivid, imagination, I can have some pretty great (and detailed) fantasies.  Well, I'm not doing very well, lately.  I'm just in that dark place...again and it's pretty bad.  I'm not doing well.  I'm under an exorbitant amount of stress and there's really no HUGE reason.  My mummi remarked that she usually only sees me this stressed around surgery time.  And she's right but something's going on lately and I'm constantly under extreme duress and emotion.  There's lots of little reasons that add up but usually I only really get stressed around surgery times  There is something really serious going on.  It's not just psychological problems but serious physiological problems as well.  I'm sick.  Really sick, both mentally and physically.  I could tell you all the things I've thought about during this time or any time like this, but this time in particular, but I don't want to alarm you and I don't want you alarming my family.  I wrote about some reasons before that keep me from "doing it" as in, suicide, and some of those reasons are actually dwindling because I'm finding ways to get around them.  For example, I wrote about not doing it because I worry about it breaking the bank for my family with the costs of cremation and burial and the urn.  Well, I had a very serious moment the other weekend and it occurred to me that in my suicide note, I would specify to sell my Honda and use that money for the cremation and not worry about some nice urn because you're just gonna spread my ashes anyway per my request so just put them in a fucking folgers can like in The Big Lebowski.  I'm fine with that.  But to be honest, it would be an ultimate dream to have my ashes spread in one of three places 1) Sweden, particularly the beaches of Gotland, Sweden.  That is my very close (not distant) heritage and it would be wonderful to be returned there 2) I have always been fond of Italy. It would be perfect to have my ashes spread in the oceans along the shorelines of the Pula Beach in Sardinia, Italy where it's surrounded by roman ruins. All I can say is I love it. and 3) Perhaps at Sanur Beach in Bali where ancient temples stand nearby cause really, can I get some kind of peace even if it has to be in my death, so why not Bali?  Unfortunately, well, it costs another exorbitant amount of money to fly to those places and then a place to stay and food, etc.  So unless my family decided they wanted to take a vacation to one of those places, they could hold on to my ashes for that moment.  Unless, Mr. Jack White, my hero, you read this after receiving my very dear friend Mike Leventhal's letter that he sent you and you could send my family to one of those places.  And even better, go with them and play and sing the guitar as my ashes float into the water :)  Otherwise, I guess go to an Oregon Beach and throw them in the ocean at sunset (or dawn) but I guess I'd prefer sunset so you could then make a beach campfire and make s'mores and play the guitar and sing, maybe do some reminiscing of fun memories with me....wait, my family does none of that except make a campfire and s'mores.  Well, if any of my friends were there who could play guitar, they could do the rest.  In fact, I'd like it if my very dearest friends were there, and you know who you are.

But the point of this post is not to talk about my suicide again but to talk about what sorta keeps me alive from day to day because to be honest, it is a day to day thing now.  I really don't know if I'm gonna make it from one day to the next or if I'm even gonna make it to 30years old (is there a "29 club" or "almost made it to 30 club"? I doubt it.  I'll start it.)  But I've got a crazy, creative imaginative mind that goes wild everyday and it's probably, oh I'd say, 97% of the time filled with something involved with Jack White and the rest of it is being the respected and renowned actress I always wanted to be. Which, come to think of it, involves Jack in some way so I guess whether I'm dreaming/fantasizing about being the great, respected, talented and renowned actress or not, Jack's in there somewhere so I'd have to put his percentage at 100% :)

So, for those of you who are my Facebook friends, you of all people know about my crazy obsession with Jack White from how talented and brilliant I think he is to talking about marrying him to actually naming our kids.  Yeah, it's that crazy.  But laugh and snicker all you want but it's these fantasies, Jack White or not, that somedays, keeps me alive.  Literally.  There are so many days that I can't even count cause there's too many of them, that all I do is watch Jack White video's all fucking day long, whether it's with The White Stripes, the Raconteurs or interviews or watching documentaries with Jack in them because they make me smile and laugh and keep me from finding all the pills possible that are available to me (and there's a lot considering all the medication I've been on from the very beginning) lying around and then laying in the bathtub, lying face up so that in the case that my body reflexively throws up, I'll choke on it and also in the bathtub so that if I was to throw up, my poor mother wouldn't have to clean up the sheets if I were to lie in my bed.  Then there's my preferred preference of slitting my wrists (lengthwise of course, because that's the direction of the vein and therefore more and faster spill of blood than those amateur idiots who slit their wrists horizontally as well as taking several aspirins to thin my blood therefore preventing it from clotting naturally - also something amatuer idiots don't think about) and laying in the bathtub once again so my mother doesn't have to clean up after me.  And it's my preferred method because blood doesn't bother me and it won't possibly make me sick like pills could, and I would just slowly fall asleep while thinking about no longer being in pain both physically and emotionally and daydreaming my favorite fantasy as the blood left my body.  As you can tell, I have given incredible and a lot of thought to this to make sure that I don't screw it up and it'd done right, done right in the sense that it only takes the one try.  So make fun all you want about the days where I post all these things in relation to Jack White on Facebook because he literally can keep me from doing those things I just mentioned.  So it's nice if you pay attention and watch/read what I post and make a comment so I know you guys are listening.  Just a thought.  It's like a reach out for help.  And if you're smart, even more so after reading this post, you'll figure out that the days when I go nuts on posting links to something regards to Jack White, I'm really thinking about making my mother's worst nightmare come true with music by Jack White playing in the bathroom with me lying lifeless.  But these fantasies, fantasies of killing myself and ending it all so I don't have to suffer anymore and everyone can call me a coward for doing it when I personally believe it takes a lot of guts to fucking kill yourself, aren't the fantasies I'm talking about.

The fantasies I'm trying to make this post about, and I'm not doing a very good job at it, are good fantasies, good daydreams.  They're what make me smile, laugh, feel better for a minute before that minute passes, give me hope and life, and keep me alive some days.  Being a very creative and imaginative person as I said in the beginning I have a plethora of fantasies from the general to the very specific.  But I guess I'll choose the most general (and my favorite) and that's where I meet my Jack White at a musical event, whether it's his or not, or at a charity event and we date for a few years, then get married on one of those preferred beaches mentioned above, in barefeet, with my best friend Corrie Sergent as my matron of honor and then all my dearest gal pals as my bridesmaids, with a couple of my dearest gay guy friends (cause I have a few dear ones) but they won't wear the dresses :)  They'll wear suits to match the bridesmaids.  And yes, I'm sure you guessed the colors of the wedding: black, red and white.  Honestly, could I have it any other way? :)  Which is ironically close to my best friend's wedding colors which were black and pink.  Well, I guess we are best friends, aren't we Cor?  Our wedding will be followed by a baddass, kickass reception along the beach, somewhere outside with mesh tents over our heads and white christmas lights hanging everywhere.  Jack and I will take our first dance to whatever will be our song (I think, "We're going to be friends" would seriously be sweet but Jack might be creeped out by it because, well, it is his song and he would be dancing along to his own voice).  So maybe we'll dance to one of our favorite blues songs, since not only is Jack a huge, massive fan of the blues, but ironically, so am I.  And the night will be full of nothing but everyone having the time of their lives, and Jack taking a time out from me every once in awhile to do a live performance as will what will most likely be demanded from everyone at the wedding from the point they arrive :)  I'm sure my dear friend Mike Leventhal will request Jack's cover of the Beatles, "Mother Nature's Son" cause he loves that cover, don't ya Mikey? :)  And I also fantasize that by this time, by the time I meet Jack, I will have my career.  And there's also the fantasy of winning an Oscar with Jack by my side.  Then there's children of which I have already given them names.  For a girl, Isabeau Georgia White and for a boy, Willem Jack White.  Sorry Jack, you got no say in this :)  I'm pretty much stuck on those names.  And Jack and I will be married forever and I'll have my fantasy acting career, a beautiful family and be able to provide for my mother and father who did so much to take care of and provide for me for many years and then when my accident happened.  But in addition to all those wonderful things I would have and do, I would also become a major spokesperson for burn survivors and do many motivational speaking events around the world.

So that's the main fantasy/daydream that fills my head and keeps me breathing along with just my great friends and family who are always there for me.  It always brings a smile to my face. But there can also a downside to it and that's switching to thinking that something so wonderful as that could never happen to me and things really suck in my day after that kind of thinking ruins my daydreaming.  Well, it's a beautiful fantasy and daydream for me anyway.

Thursday, August 18, 2011

Tears: Messengers Of The Unspeakable

"There is a sacredness in tears.  They are not the mark of weakness but of power.  They are messengers of overwhelming grief and unspeakable love."  ~Washington Irving

This is a beautiful quote and I really wanted to share it and sort of really think about it, think about our emotions and our tears.  It's a beautiful way of looking at tears but it's also very true about them.  I would say tears are messengers of three main emotions: grief, happiness, and love.  But tears are also messengers of other emotions such as frustration and anger, feelings that I feel a lot and tears come with them.  But there is something I never thought of in tears and that is that "they are not the mark of weakness but of power."  Before my accident, I hated crying.  I felt weak.  I felt like a child.  It certainly didn't feel strong or powerful to cry.  But since my accident, I am emotionally fragile and breakdown easy and I find myself defending my emotions, defending my tears because I feel like I have a right to them because of what I've been through.  Yet it can be frustrating sometimes that I feel that I have to defend my emotions, defend my tears.  When those kind of strong emotions are taking control of my body and overwhelming me, I want to be embraced and sometimes I am but also sometimes people (friends and family) don't know how to respond to the strength of the emotions I can have and how fast they can come on.  There are a lot of things about my accident and adapting to my reality now that I haven't learned to come to terms with or be at peace with and I don't know how long it will be before I can do either of those things.  But I think it's because of that that my emotions can come on strong and quick and the tears follow quickly and with a great passion.  There are many times where I harbor emotions for awhile until they finally reach their boiling point and I can no longer keep them hidden inside.  And I will just suddenly start crying and the tears that come are like large raindrops in a good thunderstorm.

But there is truth in that piece of the quote by Washington Irving:  Tears can be powerful in so many ways.  Tears from a baby get a parent's attention and the comforting embrace of their arms.  When a child falls down and hurts himself, tears get gentle, loving kisses on their owie that can take away the pain.  They can stop a fight between couples, friends, family members.  Tears in a good cry can make a person feel better, emotionally cleansed.  Tears can take the place of words in unspeakable moments of happiness, unspeakable love, or unspeakable grief.

My emotions have also changed in how they present themselves, if that makes sense.  I can get upset over something completely unrelated to my accident but the emotions that I feel are always rooted in my accident, like the deep, thick, strong and mangled roots of the General Sherman sequoia tree.  I have such anger and frustration regarding my accident that underneath whatever it is that is making me upset that is completely unrelated to my burn, fuels the emotions and the tears.

I have always been an emotional person and I think it had partly to do with being an artist at heart and not having that thick skin.  I also have a tendency to take things personally and react quickly.  I always hated the saying, "Don't take this personally but..." because it may not be personal to you, but it's personal to me.  However, since my accident my emotional personality has altered a bit.  I'm still an emotional person but things are different somehow.  I guess the only way I can describe it is I'm emotionally "fragile."  If something upsets me and I'm around people, I can either suppress it completely until I'm alone or I suppress it as much as I can but the tears find their way out of the tear duct to blanketing my eyes the way they do before they fall over the edge of my lower lid and run down my cheeks and finally fall off my chin.  But in the latter example, the tears fall silently until I get alone and then I'm usually laying in bed in the fetal position with tears that I never knew could be produced so massively and quickly and never ending.

Tuesday, August 16, 2011

A Magazine Interview

Awhile ago, I posted something in a Burn Survivor Group on Facebook and it caught the attention of a writer in the UK who writes about all different kinds of women's issues for three different magazines.  One day I open up my Facebook and I have a private message from her.  She explained who she was, what she did, and how she read my post and found me.  She explained that she wrote feature stories on women's issues/true stories and wanted to do a feature story on my story.  I was completely taken aback.  I was slightly shocked because a lot of Burn Survivors post in that group and somehow I stood out to her.  So I wrote her back and told her I wanted to do it and would be very honored.  We messaged back and forth for awhile and today we finally had an official interview over Skype.

As time got closer to our interview time, I started to get pretty nervous.  I had never done anything like this before and I was scared I wouldn't know how to say what I wanted to say, use the right words for what I wanted to say, ramble on and go off on a tangent and forget what the original question was, or say something that didn't really make sense.  I also knew I was going to get emotional and cry because I always do when I revisit those memories and I didn't want to be a sobbing mess.  Finally it was time.

The UK writer's name is Alison and when I first saw her on the Skype screen my first thought was how beautiful she was.  Then we started talking and she was incredibly nice.  After some short small talk, we began the interview with what my life was like before the accident.  And then we did an overview of what happened with accident.  And as expected, I got emotional and tears started to fall.  I tried to control it but the memories associated with the accident, what I went through initially, and what it has taken from me and how it has changed my life are just too powerful.  But I'm used to it.  I mean I'm used to crying.  So I pushed through it and we continued talking.  After the overview of the accident, we talked about the coma, when I first woke up, my hallucinations, how my brother was the first person of my family that I saw when I woke up, when I first saw myself in the mirror, how long I was in the hospital, the initial surgeries.

Then she asked me what this has taught me about myself that I might not have known before and what it has taught me about life, what's most important in life.  I had a hard time thinking of what this accident has taught me about myself cause I'm just not good at talking about myself.  But as for what it has taught me about what is most important in life, I basically said that it's one of those things that you always hear it happening to other people, it never happens to you.  But this time it did happen to me and it made me realize that the things that I thought were important weren't, and the things that I didn't give as much importance to were the things that should be given importance and priority.  I told her family and friends are so important in life and it's so important to be a real, caring and kind human being who deeply loves their family and friends because you never know when it can all change in a split second and sometimes that split second changes your life forever and sometimes that split second can take your life from you.  So it's important to tell your family and friends that you love them as often as you can because at any time, they can be taken from you or you from them and you don't want the last words you ever said to them or they said to you to be, "I hate you," because you got in a fight.  Always resolve a fight or disagreement.

She also wanted to talk about my best friend's wedding because it was a huge step, probably the biggest step I've taken so far in my recovery.  We talked about that for awhile until we started talking about how it has changed my dreams, my life.  I told her it has been very hard to go from being very independent to now living a very dependent life and being almost 30 years old and finding myself living with my parents.  As for my dream, I told her that was probably the second most devastating thing the accident took.  Acting was all I ever wanted to do since I knew what it was, which was like the 2nd grade and now it may never come to pass.  We talked shortly about my friends, those who have always been there and who continue to support me through everything and some who just can't seem to handle what's happened to me or what's going on with everything in my life and just can't seem to be there for me.  As well as how many people came out of the wood works when I finally came out with what happened and were so supportive and continue to be and the friends I never thought I'd be friends with who have become my dearest friends, my family.

We also talked a bit about feelings of anger and my frustrations and touched lightly on how this has tested my faith.  I also talked about how much guilt I have.  And of course she asked how many surgeries I'd had so far and an overview of what the surgeries have been for.  And then she went over how this was going to go.  Basically whoever it is that decides if they want to take a story, they basically decide within reading about 200 words so she will write a short summary of my story and then send it out to her fifteen magazine contacts and see if anyone is interested.  If someone is, she said she will probably want to talk to me again and then she'll write it up, include some pictures of before the burn and some of the surgeries, send it over to me to look at and make sure it's all correct and then it's off to get published!  I really hope it catches someone's interest.  I never thought I'd get an opportunity like this.  This is a chance for me to tell my story and that's very important to me.

Monday, August 15, 2011

Confined Inside Hated Skin

"We are all sentenced to solitary confinement inside our own skins, for life." ~Tennessee Williams

It is late tonight and a lot of frustration over a specific problem I have been harboring for a long time has finally reached it's boiling point and the waterworks are flowing.  I am frustrated with my body.  I just don't have the genes to heal well and correctly and strongly.  The doctors all say it and they all don't know how to deal with it.  You'd think my 3.5 year old grafts would be like my new second skin by now, or at least that's how they should be on any other normal burn survivor.  But not me.  I scratch a little bit because I've got an itch and even though the graft is 3.5 years old, it tears and now I've got another open sore on my body that won't heal easily because I've got those bad genes and before you know it I've got breakdown all over my body.  And this breakdown is not easy to heal or take care of.  I have actually been battling a major breakdown in my grafts since September of LAST YEAR!  And what's even more frustrating is areas will start to heal and I'll start to feel better because I don't have all this breakdown on my body that hurts and bleeds and then for some reason, suddenly I'll go to have my shower and there are new tears and rips of the graft just when we thought we were getting it under control!!  And often times, we'll get an area healed up and think it's OK and then once again, I'll take my clothes off to go take a shower and there's breakdown in the exact area that had been healed for maybe a couple weeks!

On the referral of my reconstruction doctor, I went to see a dermatologist in Portland and she also didn't understand why 3.5 year old grafts would be so fragile and breaking down like this.  So she had a thought that maybe I might be allergic to one or a couple of the medicines we used in our wound care like bacitracin, silvedene, mupirocin, and a couple other ointments and creams we used.  So I wore one of those allergy patches and went in to see her the next day.  We were all hoping and hoping that something would come back positive for an allergic reaction so we'd have an answer but everything came back negative.  The dermatologist didn't have an answer for me so she told me to use these duoderm patches that you can either use the patch as a whole and put it on an area of breakdown or for breakdown that is spread out you can cut the patches up and just place them right on the tear.  And then I have to keep them on for three or so days.  What she told me was that open sores and cuts and lesions etc. need moisture to heal so putting some vasoline on the tear and then putting a piece of duoderm over it would help make a seal on the tear and allow it to heal in the moisture under the duoderm.

Well, that works pretty well but there's still a couple problems: 1) sometimes the ends of the duoderm wouldn't stick very well to my grafted skin and peel up and get dry and then become useless so I'd have to take it off and replace it 2) There are a few areas that are heavily broken down and I mean HEAVILY that are in places that make it impossible to get a piece of duoderm to stick and stay i.e. my axilla areas (armpits).   So they constantly keep scrunching up in my armpit forcing me to replace another one and the breakdowns in these particular areas just keep getting worse and worse and bigger and bigger and hurt more and more to where it's now getting impossible to get healed not to mention bleeding problems 3) this last problem just tops it all off and that's insurance issues.  Medicare and Medicaid don't like to pay for the duoderm patches because they are a) expensive and b) they don't find them necessary because they're not common.  So since insurance won't pay for them we have to pay for them out of pocket and let me tell you, because I am so broken down and constantly breaking down we go through a lot of them and fairly quickly.  I wish I could give you a dollar amount so you'd know just how expensive they are and how bad my breakdown is by how much we spend on these duoderm patches but I don't think my mom would like it if I told you so I'll just say it's in the hundreds of dollars...and that's just in the past month.  That's insane!  We can't afford this!

I am just such an odd case with my terrible healing and how quickly and terribly I contract.  My grafts are so fragile and it's so hard to deal with them.  The day after my 28th surgery (which was followed by my 29th a week later) while I was in the hospital, my skin, which we had finally started to get mostly cleared up, was suddenly completely broken down everywhere.  I couldn't believe it.  I knew right then that what was causing me to breakdown.  What I was allergic to was whatever they chose to use to clean and sterilize me and the area of surgery.  I was just so upset because we had been battling this breakdown for almost a year at that time and were so close to getting it all cleared up and then with how bad my skin broke down after the surgery, we were basically back to square one.  But at least we were pretty sure now what I was allergic to and what was causing the breakdown.  On my follow up appointment, I talked to my doctor about it and he looked up what it was that they used in that surgery to clean and sterilize me - betadine, which is Providion Idione.  So he immediately put it on my list of allergies, which include methadone, mafenide, PVC markers and now betadine.  So, you can imagine, on my next surgery, betadine was kept far, far away from my skin.  But since my 28th and 29th surgery where the betadine was used, I have been battling the breakdown daily and never seem to get very far.

I'm continuing this post from last night because I just got tired and was crying too hard to type. I just don't understand why I was given this body that evidently has a hard time healing properly and have it injured in one of the most terrible injuries someone can endure.  I mean, that's just adding hurt to injury.  I just want to one day be able to look at my body in the mirror before I get in the shower and not see any breakdown, no tears, no open sores.  And I wish upon wish upon wish that I also didn't have such a problem with scars and contractures.  I battle them and battle them everyday, every hour and I just can't seem to get ahead of them, let alone at least just keep up with them.  I don't know how to fight them anymore.  I don't know how to fight the breakdown anymore.  My last three surgeries are healed well enough that the wound care isn't much, but the breakdown requires extensive wound care day and night that I shouldn't be having to deal with!  It's hard enough to look in the mirror and see an unrecognizable body but add on to that an unrecognizable body that's always broken down?  It's beyond the feeling of frustration.  It's like frustration spiced with 2 cups of anger.  I'm so angry and I have nowhere or no one to direct my anger.  A very dear friend of mine asked what the frustrations felt like, if it was just one thing or a bunch of things.  My reply to him was, there is usually a "leader," if you will, a "headliner" of the concert that begins my frustration and then I'm opened up emotionally so other kinds of frustrations are able to get in and just add on to the "leader."  I'm finding it harder and harder to get up every morning and find the strength to fight the frustrations and anger and depression I face daily.  It's getting harder to see how it's worth it.  I just can't win against my body.

Thursday, August 11, 2011

Surgery #30

Well, surgery #30 is done and it was the quickest surgery and hospital stay I've ever had.  Wasn't much to it.  Just some fancy scalpel work and rearranging of the skin and it was over in 40 minutes.  I don't think I've ever had a surgery go under 3 or 4 hours so this was kind of a whole new experience for me.  The day of my surgery, however, was the worst I've ever had...

Since my surgery wasn't scheduled until a 1:15 check in, my mom and I slept in for the first time on a surgery day.  So that was nice.  Then we just hung around the hotel watching TV and waiting.  From time to time I was tortured by having to watch my mom drink coffee.  Then it was special torture when she brought back some breakfast for her to eat and then some lunch later and the smell of delicious food filled the room and there was nothing I could to stop that deliciousness from being absorbed into my nose.  Oh the agony!  Then sometime that morning I get a call from the hospital.  Now, the previous night I got a call from my anesthesiologist and we talked about the usual anesthesiologists talk about with their incoming surgery patients.  Anesthesiologists are always supposed to call the night before the surgery to go over a few things like meds, allergies, any problems with anesthesia in the past, possible problems that can arise from anesthesia but sometimes they don't call, which I find annoying.  But I did get a call, which was very good because since my surgery was so late in the day and I'm not used to that since my surgeries have always been in the morning, I had some questions regarding my diabetes and what to do if my blood sugar dropped before I got in to the hospital.  At the end of our conversation she said to stay by my phone the next morning because if a cancellation comes up or something happens that they can get me in sooner, they will call.  So you can imagine my excitement when the hospital called the next morning hoping they were going to ask me to come on in.  Oh no.  Instead, it was to tell me that my surgery would not be until 3:45 so I didn't need to check in until 1:45 and since it would be after 1:00, I would need to check in at the main hospital as opposed to the Day Surgery area where I usually check in (even though my surgeries are never "day" surgeries that's just where you check in).  Oh GRRRR!!!!   Another 30 minutes of waiting and no food.

So it's time to go and we head to the hospital.  I get checked in in the main part of the hospital and then I am "escorted" a very long walk all the way to the Day Surgery area!  Just slightly ridiculous to me that the Day Surgery area closes at 1:00 but I end up there anyway for prep, just after a much longer walk.  Well, whatever.  I got over it, I was just more agitated than usual because it was a late afternoon surgery, which I'm not used to, and I was extremely hungry.  So one of the nurses goes through my medicine list and when I last took everything, and then through the excessively long questionnaire that I have gone through 29 times before, now 30 times and then she hands over the routine pamphlet to my mother that she always gets that says my name and who the doctor is that's doing my surgery, the time of my surgery and the time scheduled in the recovery room and O.M.G.!!  The time for my surgery is now scheduled for 4:15pm!!!  Oh this was turning into a long day.  The only thing that had really gone right and smoothly was getting my IV in, which NEVER happens, and by never, I literally mean NEVER.  So I put my head back, occasionally texting friends and waited while my poor mother had to sit and wait in an uncomfortable chair.  I always feel bad for her.

Around 3:45 my awesome duo come into my prep room.  Garrett and I start talking about what we're going to do today and then surprisingly asks if there's anything else.  So I mentioned the terrible contractures I have going on on each side of my neck and the awful scar band that has formed on my right elbow.  He has me turn my head left and right and takes a look at the contractures and then looks at my elbow and says he can probably go ahead and do a release on each side of my neck and a z-plasty on my right elbow.  All right!  I get all excited cause I've been bummed about this surgery being so small and just doing a z-plasty on my right eye when 1) I don't think it's gonna work anyway because the contracture problem is much more complicated than that and lies deep inside my cheek and is attached to the contracture on the side of my neck and 2) I just felt like so much more could be done at the same time.  So when he agrees to go ahead and do all those things my perspective on this surgery has completely turned around until, suddenly, it gets shot down.  Garrett suddenly decides it's probably not a good idea to go ahead with the rest of those things because he is worried about Medicare freaking out because they like to give pre-authorization to whatever is to be done in a surgery.  Damn.  There was a glimpse of hope and just as soon as it appeared, it was gone.  And I'm back to feeling annoyed about this surgery.  But Garrett and Steve (Garrett's PA) and I had a good laugh fest for awhile before they had to leave to do one more "quick" surgery before mine.

About 30 minutes after they'd left, about 4:15 which was the time I was supposed to go in for my surgery, one of the nurses comes in and delivers another blow:  surgery was now not expected to be for another hour! So now 5:15!!!  My mouth just dropped and I just threw my head back on the pillows and didn't say anything.  Around 5:10 I'm just waiting for a nurse to come back in and tell me the surgery's been delayed again but much to my surprise, and delight, the anesthesiologist came in.  Thank God!  Not much long after she came in, the head OR nurse followed and I was finally taken away.

As soon as I got into the OR, I saw Steve and, on the recommendation of a friend of mine, I hollered at him, "Steve!  Starvation is cruel and unusual punishment!"  He smiled and replied back in his dry wit, "Oh I'm sorry.  We just had burgers and fries, hope you can't smell how delicious it was."  He was just kidding about the burgers and fries but we both got a good laugh.  Then, as I was switching over to the operating table, Garrett puts The White Stripes on the stereo, says, "yeah man!  The White Stripes!  Let's rock!" and the last thing I hear is Jack's voice on "Dead Leaves and the Dirty Ground" and the last thing I see is Garrett giving me the peace sign.  I love my surgical team.

(Just out of surgery)

And just a short 40 minutes later, surgery was done and about an hour after that I woke up in the recovery room.  Then once they got my pain under control and my oxygen intake was good, I was on my way to the OBC through the underground tunnel that connects the main hospital to the burn center with my mom walking by my side.  Soon I was in the burn center where everyone I passed said, "Sarah! Hey!" or "Oh it's Sarah!  So good to see you!" or "Yay!  Sarah's here!"  My mom left to go get me something to eat at the cafe since I hadn't eaten in 12 hours.  Shortly after my mom came back with some food she had to go because visiting hours were over and she was exhausted herself so I ate the food taking bites and stuffing my cheeks like a squirrel cause I was so hungry I couldn't chew fast enough.  Then I laid my bed back a bit, watched a marathon of Criminal Minds before turning off the TV and sleeping as much as I could.

Around 6am the next morning, an intern came into my room and took off the bandage on my eye, cleaned it up, put some ointment on it and went on his merry way.

(The next morning after bandages were removed.  This is a "z-plasty")

(Just a wider look at the surgical area and what a "z-plasty" looks like)
Then around 8:30am my awesome duo came in to see me and we talked for a bit and said I was good to be discharged and he wanted to see me in a month.  But then my first burn doctor, the doctor who continued to save my life on the operating table came in - Dr. Pulito!!!  I always love seeing him.  He always comes to see me when he finds out that I'm there and he even comes to see me in the prep room (which he did for this surgery) when he sees my name up on the board.  He's just such an awesome and soft-hearted man and we have a very close and special relationship, too.  A different kind of close and special relationship than Garrett and I.  Dr. Pulito was the first doctor to see me when I arrived at Legacy and he has said that when he saw me and got me on the operating table, he honestly wasn't sure if I was gonna make it.  Many nurses have told me that as well.  He said I was the worst burn he'd seen in a very long time.  But he saved my life and did a pretty good job working on me.  I can't tell you enough how lucky I was to have gotten him as my burn doctor as there were 3, well now 4 with Garrett, but 3 at the time I came in that work with burns and Pulito is truly the best out of them all.  I don't know how many times nurses and even other doctors tell me how lucky I was to have Pulito.  He wasn't even scheduled for that weekend, he was on call.  Lucky indeed.  He's like the fantasy grandpa for every young child and he makes you feel like his grandchild in a way, his only grandchild, his only patient.  He has incredible bedside manner.  I truly love him and I tell him so and he tells me that he loves me too :)

After I saw Pulito, the rest of the morning was spent getting discharged and then we were back on the road heading home.  And that was surgery #30.  The simplest and quickest surgery I've ever had.  As for what's next, I really don't know what the plan for that is.  Garrett's got me a little confused.  But maybe when I see him in a month we'll talk about what's next.  So since I've been home my pain has been here and there.  It's quite a sensitive area.  You'd be surprised that even though it doesn't look like much, it can really hurt.   But I'm on IR dilaudid for as long as the Rx lasts and then I'll be done with it.  I never have a problem with the IR pain medications so when the dilaudid runs out, I'll be fine.  It's the ER morphine that I'm having a problem with and what I'm needing to detox from.

Thanks everyone for your continual support.  Things have become rough for me again and still are.  So it would be much appreciated if I could get understanding and support, which I know I can count on from the people/friends who read and follow my blog as well my real, true friends in my life whether they read my blog or not.  I want you all to know that I read all your comments and really love it when comments are left.  I even often go back and re-read comments because even though all of them are always really great comments, there are always a few every once in awhile that brighten my day, put a smile on my face, or give me something to think about.  So thank you, everyone for being faithful followers.  But it would be really great if you spread the word and got my blog out there!  I want to get as many people as possible reading and following it!  This blog has become very important to me and to my recovery and healing.

(About 23 hours after surgery.  Starting to swell a little more and  looking more and more like a black eye)

(Three days after surgery. I look like I just got out of the boxing ring...)

Monday, August 8, 2011

The Darkness Before The Light

"Light thinks it travels faster than anything but it is wrong.  No matter how fast light travels, it finds the darkness has always gotten there first, and is waiting for it."  ~Terry Pratchett

I have done a lot of blog posts around quotes and I think this is one of the most brilliant I have heard.  How can you possibly disagree with this?  Light may think it travels faster than anything, but the darkness is always there first, it always beats the light for doesn't everyone tell anyone who's in a dark place (no pun intended) that "it is always dark before the light."

Let's talk about darkness in terms of depression.  The term, "depression" gets thrown around a lot with people.  You've heard it from every friend you've had at one time or another and even yourself: "I'm so depressed."  But depression is a serious thing and a very real, scientifically proven chemical alteration in the brain.  So many people say that phrase, "I'm depressed," and not realizing what a serious term they are using. We've all done it.  We don't mean any harm by using it that way.  But we need to realize what a serious thing depression really is and stop throwing it around so casually.  There are so many different words in our vast English vocabulary, don't forget slang, that we could use instead because it is almost slightly insulting to those people who are truly, clinically depressed, who's brain chemicals are imbalanced.  It's like making their depression smaller when it's a great, powerful darkness consuming their body, environment and worst of all, their mind.  So challenge yourself to find other words to describe how you're feeling instead of "depression" so that we don't lessen the power of that word for a clinically depressed person.

To put it in perspective, this is much like the debate over being politically correct over using the word "retard."  Some people think that political correctness is overrated, dramatic and getting too serious over things.  I agree that there are some phrases that people get a little too crazy over being politically correct about but I think "retard" is a perfect example of misusing "depressed" and being politically correct about it.  How would you feel, if your IQ was below 70 therefore qualifying you as "retarded" and you're constantly hearing friends say to each other, "You're so retarded," or "That was such a retarded thing to do."  Sure, they aren't saying it to hurt you or offend you by saying that whatever that person may have said is something that only retards say or what they did is something retards do. But what if that person of that lower IQ is thinking, "that's what people like me say and do?"  Of course, we don't use the word "retard" much anymore because it really is an offensive word so we have become politically correct by saying, "mentally challenged," or "mentally handicapped."  But, just for this exercise, let's keep using it as an example to get my point across.  Now transfer our example of using the word "retard" in your sentences to describe a person of normal intelligence or higher for something they said or did to using "depressed" to describe how you or a friend or a family member is feeling who really doesn't have a true, clinical depression and think about what a clinically depressed person feels like.  While you're hanging around a friend who is depressed and you are having a bad day or maybe even a week and say, "man, I am so depressed.  I gained 5 lbs over the holidays," are you really depressed?  Or can you say something else like, "I am so frustrated I gained 5 lbs when I told myself I was going to watch what I ate this season," or "I'm upset with myself."  what do you think that friend who is really clinically depressed is thinking when they've gained 15 lbs and that's not even what they were depressed about to begin with?!  So now you've added just another something to their list of reasons to write that suicide note and follow through.  Many times, actually, clinically depressed people don't really have any specific reasons for why they are depressed.  It's all a chemical imbalance in their brain.  So sometimes, if that's the case, those people will adopt your same reasons for why you're saying your depressed because there's a lot of pressure, believe it or not, to list off the reasons why you say you're depressed.  Not a lot of people are educated on depression and don't know that sometimes, a person can just be depressed and say, "I don't know," because it's all a chemical imbalance in the brain.

Depression is a serious thing and must be handled appropriately.  More than not, medication is needed to help correct that imbalance but there is also the belief in the combination of both medication and natural antidepressants.  In that case, a person needs the medication to start getting that chemical imbalanced straightened out so they feel better, so they feel like finally getting out of bed or out of the house and then adding those natural antidepressants like being outside, going for a walk, a hike, spending time with friends, etc.  Often with that combination, a person can pull out of a depression but it may not always go away.  Depression is a nasty thing in that it can continue to follow you like a black cloud just waiting for you to fall again so it can storm down on you again.  And when that happens, it's awful and it takes a lot of understanding from family and friends.

Depression is a darkness.  It's that darkness that Terry Pratchett talks about.  There are many other examples of the darkness he quotes but for now, because of how I'm feeling, I'm using depression.  That darkness can be a very powerful thing and it can be quick, very quick.  It can be there before you even feel it coming on.  And you think you can fight it, beat it with the light but it's just not fast enough.  Suddenly there you are in the darkness and it has a powerful grip.  The light is naive that it thinks it's fast enough to get there before the darkness and save you.  Often times this "light" comes in the form of faith, a spiritual experience, or simply incredible will power to fight the darkness and get out.  But sometimes there are people, like myself, who don't have those kind of tools like faith because it is being tested and tried so the "light" for people like me comes in the form of family and friends who help fight the darkness with you and fight to shine their beautiful lights into your darkness like the rays of the sun that shine through holes in a storm cloud.  But before we find that wonderful, warming light, we are first consumed by the cold and powerful grip of darkness.  It is always there first.  It always beats the light and is waiting for it.

Wednesday, August 3, 2011

The Mind - The Power To Protect And Destroy

Yesterday I blogged about some pretty serious emotions and thoughts.  I wasn't sure how people were gonna react but I needed to write about what I was feeling and thinking.  I was very surprised at how people reacted.  I was met with a lot of concern and support and surprisingly, understanding.  Talking about a topic like suicide can really offend people, and I may have offended a lot of people I just don't know about, but it's something that is unfortunately on my mind almost everyday.  And yesterday, I was close to not talking to you today.  To be honest, I don't know what will happen today or tomorrow or the day after that.

There was something a couple people said yesterday in response to what I wrote that caught my attention because what they said was something that I guess I got across yesterday without actually spelling it out for you. And that was the mind can be a difficult thing to escape and in a life situation like I am in and many other people, the mind can be a much more difficult thing to deal with than the limitations and scars of my body.  The mind can be a very powerful thing.  It can keep you determined to achieve your dreams, do whatever you set your mind to but it can also destroy you, either making you go crazy or putting you in such a hell that the only way out is suicide.

I cannot describe to you what it was like that first month in the hospital when I woke up from my coma.  I was pumped full of so many drugs that I hallucinated almost every hour that I was awake.  I hallucinated horrible things and things that confused me.  It's a little embarrassing to think about the things I said when I was hallucinating cause I know I was making no sense to the nurses.  The most horrible thing when I woke up was I thought I was dumped in some low grade hospital in a nowhere town.  It felt like I wasn't getting any attention no matter how much I cried for water or for my mother.  It was the worst experience of my life when I woke up and my mother was not there.  I didn't understand what was going on.  It's strange to me that I don't remember anything that night but when I woke up, even in a haze of hallucinations, I knew that I had had an accident, that I was burned and I knew it was bad but I had no idea how bad it really was.  I had no idea how much time had passed.  It just so happened that my mom and dad finally had to leave to go back home after staying there with me for about a month and just a few days later, I woke up.  The nurses immediately called my mother who then called my brother Jake, who lives in Portland, and asked him to get to the hospital right away so that I wouldn't be scared with no one there that I knew.  And my wonderful brother was there right away.  The nurses got me out of bed with that crane-like thing that I don't know the name of because I couldn't walk and put me in a chair and a little while later, my brother walked in.  His face was the first I saw of my family and I'll never forget it.  And I talked to him, slowly and slurring, but with a smile on my face like nothing happened.  I didn't ask what happened to me.  Instead I was asking him how he was doing and what he was up to.  He was good, he talked to me and answered my questions but he didn't upset me by talking about the accident cause he could tell I was somewhere else in my mind.

I don't know how much time passed as I hallucinated in between waking and sleeping before I finally got a grip on reality and was able to focus on the room I was in (which was a private room in the ICU as opposed to this huge room with four beds that I was hallucinating it was) and that I wasn't in a town with a population of only 100 and a run down hospital.  That's when I entered a whole new hell.  Both physically and in my mind.

You may be wondering where I'm going with all this.  My point is your mind is a fascinating and powerful thing, which is why I did one of my majors in psychology.  It has the power to protect you and destroy you.  My mind protected me from the accident by not letting me remember a single moment of that night, not even of that whole week before the accident and it has continued to protect me from bringing back any memories either in waking or in my dreams.  To this day I still have never had a dream about the accident.  But as time has passed and I'm at where I'm at now, my mind is beginning to turn on me and destroy me.  Thoughts of suicide occupy so much of my mind everyday that someday I may give in.  Will I be able to battle the powers of my mind?  Or will it slowly convince me more and more everyday that I don't want to suffer anymore and despite how it may hurt my family and those people that I can call my friends, that it will overpower those concerns and it will win.

Another one of my most dearest friends wrote to me yesterday after reading my blog post and actually praised me for being brave enough to write about such a dark and taboo subject.  She told me that writing about it made me even stronger.  I didn't think about it that way.  I thought it just made me weak and I thought that's how people would see me.  Cause it's the old cliche that it takes a weak person to take their own life and a strong person to deny those thoughts and keep struggling no matter how hard it gets.  The mind...what a powerful piece of ourselves it is.

 I will end this with something that an anonymous person commented in response to one of my much earlier posts and I just found it because this post suddenly became a popular post so I went back and looked at it.  This person quoted something that St. Bernadette said which was, "Suffering passes but having suffered lasts."  That is possibly one of the truest things anyone has said.  I couldn't agree more.  Thank you, for whomever posted that.  I honestly don't know if I will get through my suffering by conquering the dark thoughts that my mind is festering but if I do, the suffering that I went through will last all my life.  "Suffering passes but having suffered lasts."

Tuesday, August 2, 2011

Clipped Wings

It has started again.  This viscous cycle of up and down, up and down.  I was doing pretty good for awhile.  Not great, but good, OK.  And now I sit here, in front of my computer, crying and typing.  I don't know where I'm going with this post.  I just feel like my heart, my soul, have something to say.  I'll admit it, I'm a mess right now.  Tears are falling down my cheeks, I'm sitting in the same clothes (my PJ's) that I've worn the past two days now, all I want to do is sleep to forget about everything, to free my mind cause it's only in my dreams that I see myself as I once was.  I'm safe in my sleep, in my dreams.  There my dreams come true, I'm not burned, I'm free, I'm happy, I don't feel lonely or lost, and very often I'm in love with someone who loves me in return.  I've tried to fall into those dreams this morning but every time I go to lay down, I can't stop crying and that only keeps me awake, in reality.  There are many ways available to me right now to end it all.  It could be so easy.  I spoke to a friend of mine about these thoughts last night and I feel horrible that I worried him so.  I am very lucky to have the friends that I have now that care so much like he does.  I told him that if I ever did do it, I would leave all my treasured Jack White memorabilia to him cause I think he would appreciate them the most.  I think I would find something special to leave behind for each of my amazing friends that have pulled through for me and been there to support me no matter what kind of situation or predicament they themselves are in.  They've never given me an excuse not to talk to me by phone or text or email or Facebook or come see me in the hospital.  I treasure you, and you know who you are.

So what is stopping me?  There are a few things.  I am scared but not in the way you might think.  I'm not scared to do it.  What I am scared about is hurting my family, particularly my  mother, hurting my friends, my real true friends.  I don't have life insurance so it would break the bank for my family to cremate me, bury me, have a service for me, which I would not request anyway. If I had life insurance, it might be an easier choice for me.  I'm also scared of what's on the other side.  Is there a God?  Is there a heaven with an after life?  And if there is an after life, how will I be there?  Will I be stuck forever as I am now?  Or will God, if He exists, be merciful and greet me at the pearly gates as I was before the burn?  These are the things that scare me.  Not the act of it, but the after math of it and what I would find on the other side.  Some of you may think me weak for thinking of doing something like that and that's fine.  Maybe I am weak.  I used to be a pretty strong person of character.  But I have seen what life can be like and this is not how my life was supposed to end up so maybe the strength that I once possessed and knew has weakened with my body, my heart, and my soul.

I don't know if this post is exactly appropriate.  In fact, it probably isn't because I don't want to scare any of you or alarm or upset my family that I'm talking about this so publicly.  So if any of you know my family, do me favor, don't talk to them about what I have spoken of here.  They don't read it and I don't want them to know these horribly dark feelings and thoughts that I harbor.  But I told you I would always be real with you with whatever I was going through or feeling.  I have a career dream that I don't think will happen for me, I have more years to spend in this house being dependent on my mother and father and more years of surgery and reconstruction, I am utterly crazy for my favorite musician, Jack White, and I would love nothing more than to hear something from him.  His music can get me through most days and so can talking to the few real friends that I have but then there are quiet times like now, where I can do nothing but let the tears fall, my body convulse with the cries of someone in despair, and my heart feels like it's bleeding.  Can you die of a broken heart?  Can you die of a broken soul?  If you can, I'm in quite the predicament because both my heart and soul are broken.  And don't even begin to give me any bullshit about not being grateful for what I do have.  I must reiterate and emphasize that I am and always will be grateful for what I do have.  But this is not the way my soul was meant to live.  I feel like a bird with it's wings clipped and can no longer fly.