Monday, May 31, 2010

Thank You to my FB friends and my followers

As many of you know, I have been posting pictures of my burns and grafts and scars. I don't know what brought it on other than I suddenly felt the need to give people a better idea of what I was talking about when I talked about it or posted something about it and the pain that I go through everyday. I have to admit, I was scared out of my mind to post those pics and still get scared everytime I post a pic but I am finding it necessary for those reasons I listed above.

But I seem to be getting very positive responses and a lot of support, which has relieved me and give me courage to keep fighting. For awhile there, I was losing reason to fight. In fact, I still find it hard to fight but your responses have helped give me reasons to keep fighting everyday. I had begun to lose that fight in me and want to just give up but your support has been so tremendous that I feel has though you have re-energized the fight I know I have in me, or I wouldn't be where I am today, let alone alive.

There are so many days I just want to give up but then I think about the responses and posts I have gotten by posting those pics your incredible support that I feel like I will let you down if I just lie down and give up. You have given me reason to go see my friends and get out in the community. It is because of you that I have been going out to see more of my friends and get out of the safety of my home more often. So I want to say Thank You. You have plugged me in and recharged me, given me my fight back; given me reason to try and be braver. My family has also helped me TREMENDOUSLY, but it is my friends on FB and my followers here that have pushed me a little farther to show myself, go beyond my comfort zone and I have gotten nothing but support in return. Thank you for that.

Wednesday, May 26, 2010

I am a burn survivor, not a burn victim

I am a burn survivor, not burn victim. That is the correct way to describe someone who has been burned. I used to call myself a burn victim until I learned from other people who were burned that the correct way to call a person who has been burned is a burn SURVIVOR. So I am no longer a victim of the fire or of my burn, I am a survivor. And I like that better. Makes me feel more powerful to be a survivor rather than a victim.

As a burn SURVIVOR, it implies that I survived something, which I did. I survived one of the worst injuries that can happen to someone. In fact, I didn't just survive it, I am surviving it everyday. Everyday is a hurdle to get over, whether it's emotional pain, physical pain, anxiety, etc. So everyday I am surviving those things. I am no longer a victim. A victim implies helplessness over their situation. I am not helpless against my situation, even though sometimes I feel like I am. but I am not. Deep down inside of me I have the strength to get through everyday if I just apply that strength. But that is still hard for me to do. I am 2 years out of my accident and I'm still having a hard time finding the strength to get through each day, even though I am surviving this injury everyday. Does that make sense? I find it hard to have the strength but somehow, i survive each day of this injury, despite if I may have had the strength to get through the day or not because I am a survivor, not a victim.

According to a doctor on a TV show once, he said that a burn is one of the worst injuries to ever happen to someone. My life changed in a split second when I caught on fire and incurred one of the worst injuries to ever happen. My life has never been the same and never will be. I don't know if I'll ever be able to do a cartwheel on the spring grass again or reach things in a cupboard. I have had 21 surgeries so far and am still on the long road to recovery so I am looking forward to many more surgeries of reconstruction yet. The doctor has basically told me that I will most likely be a lifelong patient because of how badly I was burned. But does this news make me a victim? No, it makes me a SURVIVOR because I still make it through every surgery, every doctor appointment, and simply, everyday. What kills me the worst though and makes me feel like a victim sometimes is when I have to be assisted in the shower, assisted in getting dressed and getting a glass out of the cupboard. So it is hard for me during those times to see myself as a survivor but I must constantly remind myself that despite the fact that I have to be assisted in these things, I survived that fire and I survive the day because I go to bed every night to wake up in the morning to a new day. But it's another day I have to survive so I cry a lot wishing I didn't have to "survive" the day in the way that I do.

This accident took my life from me. When I think of it like that, in my times of weakness, I feel like a victim. But it's true, the accident took my life from me. I just have to find and learn a new life now because I survived and I am a survivor. Some days I wonder if I'll get through it, but I do somehow because I am a burn survivor. That is part of my identity now. I wish it never was, but it is and I must face it with all the inner strength I have and look at my situation in the eye and say, "I will survive you because I am a survivor, not a victim, and I will not let you make me a victim."

Saturday, May 22, 2010

A Night Out With Joc and Isaac

I got out again last night...well, not out out, but out to a friend's house. She's one of my dearest friends and the mother of my nephew. So I got to hang out with him for a little bit, which was fun. But I took some pictures again (i'm always taking pics of my nephew) and we played with him for a little bit before he started to get real fussy and was ready for bed. After Joc finally got him to bed, we just sat on the couches and talked for a little bit before I had to finally go home. It was a lot of fun even though I really didn't get a lot of time with Joc by herself cause of the baby.

But I really saw what she has to go through everyday, all by herself as a single mom and I have a lot of respect for her, as well as all single moms out there. It takes a lot of work to raise a child even when you have a partner so to do it alone is incredibly hard work. I mostly played with Isaac and even just after a little while, my back was hurting and I was exhausted. And I was just playing with him!

So to all you single moms out there, you have my respect. It's extremely hard work raising a child on your own and I could barely do it for 2 hours! But I still throughly enjoyed myself. He is, after all, my nephew and I love him so much. I hope to be a big part of his life. Joc, you are doing a fabulous job with Isaac. He really is a great baby. And he's growing so fast!

here are some new pics of the little man:

Bath Time!

Tuesday, May 18, 2010

First Pictures of Any Part of Me Published

Today I posted a couple pics of my neck on my FB page. I was looking at them on my phone and decided to just be brave and post them so people can see a little bit of what I'm talking about when I speak of my surgeries or my scars. I was so nervous but I hit "upload" before I could change my mind and I almost immediately starting getting responses to the pictures; good positive responses about how brave I was to post them and how beautiful of a person I still was. All these positive responses just made me want to break down. I didn't think I'd get the kind of responses I've been getting. I was really really nervous and thought for a quick minute before I began to get flooded with responses that I made the wrong decision and was going to delete the pics.

While I was on FB, a friend of mine started up a chat with me and began to praise me for what I did with those pictures and a couple things that she said struck me and sort of helped change my perspective on my scars. She said, "they are a map darling, they are a map of your life, your pain and your triumph, fuck anyone that tries to make you feel shame....including you." I thought, wow, how wise and what a wonderful way to be able to look at my body in the mirror and see a map of my life, of my pain and my triumph instead of a bunch of nasty scars. I don't know how soon I'll be able to do that. But I'm going to try everyday because as she added in the end, "..including you," I should not make myself feel ashamed either.

So now I'm going to show you followers. Here goes:

Monday, May 17, 2010

Opening My Mind and Heart to Suffering

I wrote in a previous blog titled "Faith" about opening my heart and mind to suffering so that the healing could take place. well I wanted to write a short bit about how I've been trying that and I have to say it's been real hard. You have no idea how painful it is to open up your heart and mind to the kind of suffering I have. It hurts. It hurts real bad. I don't know how Sharon Salzberg did it. I don't know if I can do it but I must if I really want healing to take place.

Opening up my heart and mind to my suffering means looking in the mirror and seeing how this accident has scarred me and how some of those scars will always be there to remind me of what happened. It means looking in the mirror and seeing a physically changed self that I have to learn to love again so that I may let people in to my life again. That's possibly one of the hardest parts about it, is learning to love what I see now and allowing people into my life again despite how I may have physically changed with scars.

I keep so many people out because of that and I think frustrate a lot of people. But I don't know how to love the person in the mirror anymore, even though I really haven't changed all that much, but I do have scars that are embarassing to me to have people who knew me before the accident to see me now. Even though I know that if they are really my friends, they won't mind or even see past the scars. But what people don't realize is that, yes, I know that, but do YOU know what it's like to have physically accident free once with your friends and now to suddenly be scarred and be with your friends? Even though they may not mind if they are your true friends, it's still hard inside because I can't get past it. I keep thinking about what they are thinking about deep down. Like are they thinking anything like, "wow, she used to be a pretty girl and now look at her." That's what I fear. I fear that so much.

And that is one of the fears that I must let into my heart and mind to allow any healing to take place cause if I keep fighing it, no healing will take place. Do you know how painful it is to allow all the suffering from an accident that changed your life in a split second into your heart and mind? It makes me want to cry all the time it hurts so bad. But I know it is good for me. It will free me from all my suffering and allow people back into my life. Oh please dear God, help free me from my suffering. Let it enter my mind and heart as painlessly as you can and allow healing to take it's place.

Sunday, May 16, 2010

Under Great White Northern Lights

I'm sitting up, it's 4:30am and I havent been able to sleep because of restless legs. So I just finally got up out of bed and popped in Under Great White Northern Lights and started watching again.

I am in awe of Jack White and what he does. He's an amazing musician and person. What he does is so real and raw, the way they should be. No two shows are ever the same. As he said in Under Great White Northern Lights, he puts his picks at the back of the stage so that if he drops one it's more work to go get one then if it was taped to his mic stand. Same goes for the organ. He places it a little bit farther away so that he has to make an extra leap to get to it. He is so unique in those ways.

It's almost as if he makes me proud, like him his damn mother or wife or something. It almost makes me sick the way that I feel about him but I can't help it. He has been here for me for over 10 years with his music. He has been a constant in this tumultuous life I have lived. I wrote to a friend who is also a big fan and told her that he has never faltered to be there for me when I needed someone and never has he faltered to create a shift in my mood when I was in need of one.

This new documentary is so fabulous in that it really shows who Jack is. He's actually a very funny guy and most of all, so very talented. I was always impressed since their debut album De Stijl, but this documentary left me even more impressed with their talents. And I think it will leave the same impression on you if you watch it, which I strongly suggest. My biggest wish, besides my dream of being an actress, is to someday meet him. I think my tongue would be frozen and I wouldn't know what to say. But I still pray for it and wish it. He has a Dead Weather concert coming in Portland in July and I would love to make it but I don't know if I will be able to with surgeires and everything related to my health.

Well Jack, I love you dearly and I hope I get to meet you some day.

Thursday, May 13, 2010


I recently read a great little book on faith simply called "Faith" by Sharon Salzberg. It really opened my eyes up to my situation.

Sharon Salzberg is a Buddhist so much of her ideas on faith come from the Buddhist teachings but they ring a bell of truth that I had to share some of them with you because they certainly opened my eyes to my situation.
I'll begin with what really struck a chord with me the most was when she stated that "...seeing past the apparent randomness of "sheer happenings" to uncover layers and layers of connection...of knowing even in the midst of great suffering, that we can still belong to life, that we're not cast out and alone." That simple statement there that I can still belong to life, that I'm not cast out and alone really made an impact on me cause that's kinda what I've been feeling, is that I don't belong to life with what happened to me; that suffering is my world now and it doesn't have to be. I still belong to life and I'm not alone in my suffering; I'm not cast out because of my scars.

Sharon says that in Buddhist teaching, "suffering is considered the proximate cause of faith. The phrase "proximate cause" means the most likely or the nearest reason. How could suffering that can destroy a person with its implacability, its remoreselessness, be the most likely springboard to faith?...Instead this teaching says that deep suffering, even the night of despair when all faith is gone, can itself be the means to arrive at faith, uncovered, renewed." But when we are in despair and suffering, we feel devastated and alone but this statement says that suffering is the "springboard" to faith. I guess I can see that because with my suffering has come the questioning of my faith because of what happened and without this suffering I may never have known my true beliefs and faith. Suffering has actually brought me closer to faith, even though I am still questioning it right now.

Another thing I have had a hard time with is if I had done something so wrong that that's why my accident happened; as a sort of punishment from God. In the book Sharon states, "Suffering implied I'd done something wrong, hadn't handled my life right." That's exactly how I feel. That I'd done something wrong and because of that I must suffer. But could it possibly be that this happened to me for a reason to question my faith and in that questioning, bring me closer to faith? not that i'd done anything wrong. She says that "Faith began to grown, saying that if I opened my heart and mind big enough to take in the suffering , then there would be healing...Faith is about opening up and making room for event he most painful experiences..." That's been one of my biggest problems maybe, is that I haven't opened my heart and mind big enough to take in the suffering so that there would be healing. Instead I am letting suffering swallow me up without opening my mind and heart to it. This prevents any healing to take place.

And speaking of healing, Sharon also talks about several scientific studies that have explored the power of prayer and distant healing. "The preliminary findings are startling. Even when people were unaware of such efforts on their behalf, it appears that these inteventons have an effect. For example, in a study at California Pacific Medical Center in San Francisco, AIDS patients who, without their knowledge, were prayed for had significantly fewer new AIDS-related diseases, less severe illness, fewer doctor visits and few and short hospitalizations than patients in the control group who were not prayed for." This I can relate to because I have people who pray for me at my church every Sunday whether I'm there or not. I also have friends on Facebook who pray for me when I'm in pain and when I'm going into another surgery and I can attest that it does help. For example, this last surgery, even though it was a "successful failure" the surgery itself went well and I had the shortest hospital stay I've ever had there. And reading what she wrote about those studies, it makes me want to believe that it was because of all the prayers I received from my church family and my Facebook family. So thank you everyone, thank you so very much for all your prayers. They truly do good work so please, I ask of you, do not stop. I have a very long road ahead of me and I humbly ask that you don't stop praying for me.

Zen master Suzuki Roshi expressed: "Sometimes, just to be alive is enough." I need to remember this because despite all my suffering and pain, just to be alive should be enough to keep me going everyday and bring me closer to faith because I almost died that night. The doctors honestly don't know how I survived. For one thing, the paramedics did an amazing job in keeping me breathing because they couldn't get the tube down my throat to get me to breath so they had to manually airbag breath for me all the way to the airport, then to Portland airport, then finally to the hospital and that's nearly impossible. But they kept me breathing and I survived long enough to get to the hospital and undergo emergency surgeries that would also save my life.

So I must remember that despite all my suffering and pain, just to be alive, is simply, enough.

Thursday, May 6, 2010

A Successful Failure

What I mean by a "Successful Failure" (as they put Apollo 13) is that the overall surgery went well, but, the ultimate goal was not achieved: they did not have enough skin from the expanders to do a complete flap around my neck. So, they used what they did and did what they could and left the tissue expanders in to expand my skin again. They also regrafted the side of my mouth using a split-thickness graft from my scalp so i have a little shaved area on my left side now.

I spent 4 days in the hospital and I am home now. First night home is always hard to adjust. The doctor came in one afternoon and sat down with me and my mom and basically told us it is going to be about a 1 1/2 years worth of reconstruction on my neck ALONE. So that was hard to actually finally HEAR some kind of timeline and hear from a DOCTOR'S mouth. I knew it all along, that it was going to be a long time yet, but to actually hear it said and for it to just be on one part of my body and not as a whole is hard.

I have so far yet to go and I am just screaming to be on my own again. So I silently cry and mourn a life I once had.