"The most important of life's battles is the one we fight daily in the silent chamber of the soul." ~David McKay
That quote is one of the most perfect and relevant quotes to my life since my injury. My fight on this journey is a daily fight in my soul, "the silent chamber" of my soul. It's my own self, my own soul that I am in a constant battle with. A daily battle. A daily fight. And unfortunately there are more days that I lose that fight, that battle. But so far I haven't lost so badly that the battle has taken my life with it. Somehow I'm still here.
It is so tiring fighting inside your own self, your own soul everyday. Some days I'm literally physically exhausted from the battle inside myself. On those days where I've given it all I've got to not lose completely, all I can do is slip away to bed and escape to the dreams in my sleep where I rest as best I can only to get up and start the fight again. Starting the fight for me, happens as soon as I wake up. And I fight all day long. It's not like a team game where I can rotate myself out and let someone else fight for awhile. I'm the only team player who can really fight this battle. I have my friends and family, of course, who help with the battle but there's only so much they can do. They can't rotate into the game and replace me for awhile. That maneuver is illegal in this battle. All my friends and family can really do is play the role of coaches, assistant coaches, fans/supporters and even the waterboys/girls. Ultimately, it's up to me to fight this battle and so far, I have lost everyday because throughout most of the day I'm unhappy or angry or frustrated and by the end of the day when I go to bed, I often wish there was anyway I could stay in a good dream forever and never wake up again cause I'm too tired to wake up the next morning and start the fight all over again.
I fight many things in my battle of recovery and survival and transformation like failed or successful surgeries and then the recovery that comes afterwards. I fight the limitations in my mobility. I fight the limitations in my activity level cause I get tired fast. But the biggest battle I fight is inside my soul. The fight to accept what happened to me, to accept my injury, my new body and the scars that come with it now, the possible losses in my life that I think about everyday and the fight with my mind on how I see myself. It is hard enough to fight those outside battles like the surgeries and recovery, but the battle inside the silent chamber of my soul is a fight like nothing I have ever had to fight before and it will be the biggest fight I will face in my entire life. And it wins everyday but so far it hasn't won enough to take me from this world. I have thus far been able to keep that fight in me and I pray to the Universe that I will always be able to have that fight to stay alive and not lose that ultimate battle. That someday I will rise from the ashes like the beautiful mystical bird, the Phoenix, and learn acceptance not only of my injury but acceptance of myself as I am now.
Friday, September 30, 2011
Thursday, September 29, 2011
How Do I Get Through The Overwhelming Moments?
During one of the workshops I attended, this question was posed: "How do we get through this moment? This hour?" We were having a discussion about how when we're having a hard, frustrating or upsetting day, how do we get through it? How do we get through that moment and even that hour where you're crying and crying or you want to punch the mirror cause what you see is not what you used to be? The hours in a day can be long so how do we get through those moments or through that hour where we're crying, angry or frustrated beyond any kind of consolation?
Well, I can't tell you cause I'm still trying to figure out how to get through my days and through the moments where I just sob and sob or am so frustrated or angry. I do get help from family and my dearest friends. But often I'm having moments where I'm beyond any kind of consolation like my family and friends trying to make me laugh or getting me out to try and get my mind off the feelings or thoughts that I'm drowning in or telling me where I used to be and how far I've come. So, depending on how long I've been feeling the way I am, I either succumb to it and sob or punch something or scream but usually it's curling up in a ball on my bed and sobbing for hours and then after I've succumbed to those feelings for however long, I get numb. I just get numb. I am not happy. I am not sad. I am not angry or frustrated. I am just without any feelings. I find no joy in anything I do and I don't even find any sadness, even when looking into a mirror in passing. I feel nothing. I have no fight inside me. And I can stay that way for a couple days before something triggers a strong emotion inside me and I succumb again. It's a cycle I go through. It's like when I succumb to the feelings I'm experiencing, I am on my knees (metaphorically) begging for a second chance, a different life and after however long that lasts, my tears, anger and frustration dry up like a dried up well and the numbness sets in. I experience these emotions so strongly that when they dry up, they dry up to the point where I can't feel anything cause I've used up all the emotions with all the strength I have. And it takes a couple days for those emotions to build back up and when they do, I repeat the cycle.
There is sometimes a day or two where the sun shines through the storm clouds of my emotions and the kind of life I'm living where I really am happy. I really feel happiness and I smile and laugh and return to myself before the burn. But even then, there is never a continuous emotion of happiness I feel. Every once in awhile those storm clouds pass underneath the sun and I remember my scars, my different body, a face I don't recognize, and the things I've been through. And those moments happen when I can't reach something, I'm trying to dress myself and I just can't do it, I'm taking a shower and my mother is there with me to help me, or it's a beautiful day and I want to strap on my running shoes and go for a run like I used to do. But those storm clouds soon pass and the sun shines again and I feel that happiness once again. But these times are few and far between. That sun that shines happiness down on me often happens when I'm with friends or things are good in my family or I just simply feel the warmth of that sun, that special sun and I am just happy.
So how do I get through those moments where I want to succumb to the horrible emotions I'm feeling that I don't want to feel? I don't want to curl up in a ball on my bed and sob. I hate the feeling of being sad, frustrated, irritated or angry. They're terrible feelings that take over inside of me that feel like some kind of flu. Then I get even more angry and frustrated because I hate the feeling of feeling angry and frustrated and I can't let them go. I want to just vomit those horrible feelings so I can rid myself of them and feel better, much like vomiting with a flu bug - you feel so much better afterwards. Sorry if that was disgusting but it's the best way I can describe it.
I learned a lot of different things in answer to the question posed at WBC but I am in the position of not being able to accept my injury and thus it makes it harder for me to use those tools I learned and listened to on how to get through those moments, that day, that hour. It was clear that those people who have been able to accept their injury or the injury of their loved one, are better equipped to get through those moments where you become overwhelmed with negative emotions. I don't know how to accept my injury yet and I don't know if I ever will be able to. But I do hope that despite not being able to learn acceptance yet, I will learn those tools and wear that tool belt around my waist so that when those negative emotions overwhelm me or come at me with force, I have those tools at the ready.
Well, I can't tell you cause I'm still trying to figure out how to get through my days and through the moments where I just sob and sob or am so frustrated or angry. I do get help from family and my dearest friends. But often I'm having moments where I'm beyond any kind of consolation like my family and friends trying to make me laugh or getting me out to try and get my mind off the feelings or thoughts that I'm drowning in or telling me where I used to be and how far I've come. So, depending on how long I've been feeling the way I am, I either succumb to it and sob or punch something or scream but usually it's curling up in a ball on my bed and sobbing for hours and then after I've succumbed to those feelings for however long, I get numb. I just get numb. I am not happy. I am not sad. I am not angry or frustrated. I am just without any feelings. I find no joy in anything I do and I don't even find any sadness, even when looking into a mirror in passing. I feel nothing. I have no fight inside me. And I can stay that way for a couple days before something triggers a strong emotion inside me and I succumb again. It's a cycle I go through. It's like when I succumb to the feelings I'm experiencing, I am on my knees (metaphorically) begging for a second chance, a different life and after however long that lasts, my tears, anger and frustration dry up like a dried up well and the numbness sets in. I experience these emotions so strongly that when they dry up, they dry up to the point where I can't feel anything cause I've used up all the emotions with all the strength I have. And it takes a couple days for those emotions to build back up and when they do, I repeat the cycle.
There is sometimes a day or two where the sun shines through the storm clouds of my emotions and the kind of life I'm living where I really am happy. I really feel happiness and I smile and laugh and return to myself before the burn. But even then, there is never a continuous emotion of happiness I feel. Every once in awhile those storm clouds pass underneath the sun and I remember my scars, my different body, a face I don't recognize, and the things I've been through. And those moments happen when I can't reach something, I'm trying to dress myself and I just can't do it, I'm taking a shower and my mother is there with me to help me, or it's a beautiful day and I want to strap on my running shoes and go for a run like I used to do. But those storm clouds soon pass and the sun shines again and I feel that happiness once again. But these times are few and far between. That sun that shines happiness down on me often happens when I'm with friends or things are good in my family or I just simply feel the warmth of that sun, that special sun and I am just happy.
So how do I get through those moments where I want to succumb to the horrible emotions I'm feeling that I don't want to feel? I don't want to curl up in a ball on my bed and sob. I hate the feeling of being sad, frustrated, irritated or angry. They're terrible feelings that take over inside of me that feel like some kind of flu. Then I get even more angry and frustrated because I hate the feeling of feeling angry and frustrated and I can't let them go. I want to just vomit those horrible feelings so I can rid myself of them and feel better, much like vomiting with a flu bug - you feel so much better afterwards. Sorry if that was disgusting but it's the best way I can describe it.
I learned a lot of different things in answer to the question posed at WBC but I am in the position of not being able to accept my injury and thus it makes it harder for me to use those tools I learned and listened to on how to get through those moments, that day, that hour. It was clear that those people who have been able to accept their injury or the injury of their loved one, are better equipped to get through those moments where you become overwhelmed with negative emotions. I don't know how to accept my injury yet and I don't know if I ever will be able to. But I do hope that despite not being able to learn acceptance yet, I will learn those tools and wear that tool belt around my waist so that when those negative emotions overwhelm me or come at me with force, I have those tools at the ready.
Tuesday, September 27, 2011
Owning My Story
"Owning our own story can be hard, but not as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy - the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light." ~Brene Brown
There were many things during the closing ceremonies (as well as all the workshops we attended) that really struck a chord with me and that was, "Owning our own story is hard, but not as hard as running from it." So I looked that quote up and what I found is the quote at the top by Brene Brown. Now it didn't strike a chord with me because of the latter part. I don't run from my story. My story is out there, I write about it many times monthly. But the "owning" part, owning my own story and not giving up on love and belonging and joy.
It's hard to own a story like mine, not to mention how hard it must also be for all the other burn survivors I met while at the WBC. I still can't accept what happened to me so how can I possibly "own" my story? It's like I want to give it to someone else despite how bad that sounds. Any good person wouldn't ever want to give it to someone else cause that would be cruel. And as I write this tears have begun diving off my bottom lid to swim down my cheek, because I don't want to be cruel and give such a horrific thing to someone else, but yet, I do. I don't want it and I don't know if I'll ever have the true strength of courage to own it as long as I can't accept it. I think those two things go hand in hand, like a pair of hands in love that find each other naturally to hold.
Also at the closing ceremony, the same speaker talked about courage, the definition of courage which is: "the ability to face danger, difficulty, uncertainty, or pain without being overcome by fear or being deflected from a chosen course of action." When I read that dictionary definition of courage, I don't have it when all along I tried and tried to believe that maybe I did because my friends and followers would tell me I was. But I'm not. The key phrase being "without being overcome by fear." I can't possibly have courage during this journey when I am filled with fear about so many things EVERYDAY. I'm not courageous. I'm not brave. I am filled with fear for my future and all that goes with a future including a career, finding the love of your life, a marriage, a family of your own, loving your life. I also become fearful during surgeries despite how brave I may appear. I am fearful that something will go wrong or they weren't able to quite do what they intended to do as so many times that happens. I'm not fearful of the surgery prep and heading into the surgery room but when I feel that anesthesia hit my veins I suddenly become fearful cause there's no turning back and in about 6 seconds I'm going to be out and the first words I say when I wake up is, "How did everything go? Did anything go wrong?" And so many times the answer to that last question is, yes.
But I can tell you that while at the WBC, I met so many people who had the definition of courage and I admired them. So strongly admired them, with all my soul. These people who possessed the courage I so strongly wish I had definitely "own" their story and don't run from it. They own it with all their strength and with their courage they say, "this is who I am. I may be a burn survivor, but I am no different on the inside. So don't treat me any different." What amazing people I met who were able to own their story, not run from it, and have the kind of courage I so desperately wish I had. Bravo to all you burn survivors who are able to do that and who have such strength and courage to be who you are despite the burn. Bravo. I look up to you and I wish I had the kind of courage the dictionary presents to us, but even more so, I wish I had the courage that you all do. I wish I could accept and own my story and still believe in love and joy for myself. But I just can't. I can't forgive myself for putting my family and friends through what happened. And I don't think I ever will.
There were many things during the closing ceremonies (as well as all the workshops we attended) that really struck a chord with me and that was, "Owning our own story is hard, but not as hard as running from it." So I looked that quote up and what I found is the quote at the top by Brene Brown. Now it didn't strike a chord with me because of the latter part. I don't run from my story. My story is out there, I write about it many times monthly. But the "owning" part, owning my own story and not giving up on love and belonging and joy.
It's hard to own a story like mine, not to mention how hard it must also be for all the other burn survivors I met while at the WBC. I still can't accept what happened to me so how can I possibly "own" my story? It's like I want to give it to someone else despite how bad that sounds. Any good person wouldn't ever want to give it to someone else cause that would be cruel. And as I write this tears have begun diving off my bottom lid to swim down my cheek, because I don't want to be cruel and give such a horrific thing to someone else, but yet, I do. I don't want it and I don't know if I'll ever have the true strength of courage to own it as long as I can't accept it. I think those two things go hand in hand, like a pair of hands in love that find each other naturally to hold.
Also at the closing ceremony, the same speaker talked about courage, the definition of courage which is: "the ability to face danger, difficulty, uncertainty, or pain without being overcome by fear or being deflected from a chosen course of action." When I read that dictionary definition of courage, I don't have it when all along I tried and tried to believe that maybe I did because my friends and followers would tell me I was. But I'm not. The key phrase being "without being overcome by fear." I can't possibly have courage during this journey when I am filled with fear about so many things EVERYDAY. I'm not courageous. I'm not brave. I am filled with fear for my future and all that goes with a future including a career, finding the love of your life, a marriage, a family of your own, loving your life. I also become fearful during surgeries despite how brave I may appear. I am fearful that something will go wrong or they weren't able to quite do what they intended to do as so many times that happens. I'm not fearful of the surgery prep and heading into the surgery room but when I feel that anesthesia hit my veins I suddenly become fearful cause there's no turning back and in about 6 seconds I'm going to be out and the first words I say when I wake up is, "How did everything go? Did anything go wrong?" And so many times the answer to that last question is, yes.
But I can tell you that while at the WBC, I met so many people who had the definition of courage and I admired them. So strongly admired them, with all my soul. These people who possessed the courage I so strongly wish I had definitely "own" their story and don't run from it. They own it with all their strength and with their courage they say, "this is who I am. I may be a burn survivor, but I am no different on the inside. So don't treat me any different." What amazing people I met who were able to own their story, not run from it, and have the kind of courage I so desperately wish I had. Bravo to all you burn survivors who are able to do that and who have such strength and courage to be who you are despite the burn. Bravo. I look up to you and I wish I had the kind of courage the dictionary presents to us, but even more so, I wish I had the courage that you all do. I wish I could accept and own my story and still believe in love and joy for myself. But I just can't. I can't forgive myself for putting my family and friends through what happened. And I don't think I ever will.
Monday, September 26, 2011
World Burn Congress 2011 - Cincinnati, OH
Well, World Burn Congress for 2011 held in Cincinnati, OH, is over for the year. It was utterly amazing. The experiences I had while there for the first time are irreplaceable. I honestly don't know how to describe my time there because it is simply indescribable. I met all the online survivor friends I had and I met new people and it was just like finding a secure place for myself where I could return to the personality and girl I once was. I was free and comfortable to be ME and not worry about being stared at, looked at funny or just thinking that I am. I'm not saying my friends or family do this cause they don't, but people I don't know do. Such as when I'm out running errands with my mom or my friends. There were people there worse than me and there were people there better off than me but we all shared something, a common bond of being a burn survivor, of having a burn injury happen in our lives that changed our lives forever and the life that we expected. We shared our stories, the good and the bad and we cried together and laughed together.
As first timers, on our name tag was a heart sticker that meant this was our first WBC. So, the ritual at WBC is if anyone sees you that you are just meeting, whether they are new to WBC as well or been going for decades, it's hugs all around. So we were getting hugged right and left and we were hugging other first timers. And these hugs felt like you'd known this person your whole life the way they hugged you and you hugged them in return. They were warm, heartfelt, soulful hugs. And they felt sooo good. I almost cried with every hug. It was like coming home after a long exchange trip away from home during high school.
After we arrived at the hotel, we checked in and went to our room. We stayed at the Hyatt Regency and it was pretty nice, not too shabby. There were 22 floors and we were on the 21st floor which was fun, except when the elevator got busy and it took forever to get up and down as people were stopping to get on or off at nearly ever floor almost. That first night, we ordered in from the Champs Restaurant in the hotel and it was de-licious!!
Wednesday, our second day there and the "Pre-Congress Day" where you could get registered and go to extra workshops that you had to pay extra in the registration fee to go to.
We had already paid to go to one of those pre-congress workshops and it was the best workshop we did the entire week. It was called, "Road Trip! Navigating Life After Burns." The instructors/speakers were incredible and I just got so much out of the class. It was a very interactive class so that was hard at first but it got easy real quick cause everyone was in my same position, a burn survivor. And there were a few caregivers there as well so that helped my dad a lot. One of the instructors led off by talking about how he did so much research on life after a burn injury and surveyed many doctors and nurses and they all told him the same thing when posed with the question of what to expect after a burn injury? And that was basically, no one really knew cause not much research is done on the subject and every burn is different and every one is different which makes sense because it is an injury to the largest organ in the body - the skin and everyone's skin is so different so therefore we will all react differently. But it is disheartening to know that not much is known about burns and life after a burn and what to be able to expect. It's almost like we're all on our own in a way in terms of how we're going to heal, both physically and emotionally. But yet we are not alone because we are burn survivors together and we can seek solace in that knowledge that there are other burn survivors out there who can relate to some things if not almost everything you're going through and if they can't relate, they can share their relative story with you to help you with your struggles and be strong where you are weak and visa versa.
At about 6pm that evening was the Walk of Remembrance where we all gathered and took a walk where we were led by firefighters and a bag piper down to the Memorial of Fallen Firefighters. When we arrived there, the bag piper stood up on the platform and played "Amazing Grace" and wow was that powerful. Put tears in my eyes. There were a couple speeches made, two by burn survivors who were firefighters. There is a very special bond between firefighters and burn survivors and that point was made during those speeches. The whole time we were there the firefighters were just so incredible to us. Just awesome. It was an emotional service.
Then that night was the opening banquet which was fun, except we were pretty beat from our full day of traveling the day before. But we stayed for awhile. There was a small live band that played some great music actually and it was just a good time. (*Notice all the following pictures are my famous "self-portraits." I love those kind of pics for some reason. And also note, in pretty much all these pictures, you can REALLY see my scars, which is awkward for me to show you these. Hopefully those scars will get fixed someday soon with "derma-abrasion")
But it has hit me today. I have been worried about coming home and being so isolated. WBC was a life changing event not only in the great motivational speakers we had and the workshops, but I think a lot of the real healing happened outside of the workshops when we were just hanging out with other survivors and friends. I met a lot of my online friends who are burn survivors and then I met a lot of great new people who all have changed my life forever and I am truly blessed to have met them, spent a week with them and been able to share in this experience with them. They are all incredible people and I aspire to have the kind of energy and positivity that so many of them possess and I hope to inspire them as well. To my burn survivor friends that I met and made during my time at WBC this past week, thank you for what you have brought to my life. Thank you for your incredible friendship and love. There is nothing like what you gave to me at this year's WBC 2011. You are all truly amazing in my eyes. And I miss you already.
During the closing ceremonies, someone with the Phoenix Society read a letter from a family (the mother wrote it) that were unable to come this year and she wrote something in there that really described the WBC and that's, "WBC is not the end, it is just the beginning. Like finding a family you always knew you had but never knew where to find." I think I am blessed to have three families now where I once had two, and I was blessed to have two to begin with. I have my blood family, I have my non burn survivor friends who are dear to my heart and now, after WBC, I found a new family. A family of other survivors as well as caretakers and caregivers. I am truly blessed to have those three family branches in my life. As the brilliant and inspiring Helen Keller said, "I would rather walk in the dark with a friend, than be alone in the light."
The Official World Burn Congress 2011 Slideshow
Animated Slideshow at Closing Ceremonies That Shows Life Before and After a Burn Injury - Very Moving
As first timers, on our name tag was a heart sticker that meant this was our first WBC. So, the ritual at WBC is if anyone sees you that you are just meeting, whether they are new to WBC as well or been going for decades, it's hugs all around. So we were getting hugged right and left and we were hugging other first timers. And these hugs felt like you'd known this person your whole life the way they hugged you and you hugged them in return. They were warm, heartfelt, soulful hugs. And they felt sooo good. I almost cried with every hug. It was like coming home after a long exchange trip away from home during high school.
After we arrived at the hotel, we checked in and went to our room. We stayed at the Hyatt Regency and it was pretty nice, not too shabby. There were 22 floors and we were on the 21st floor which was fun, except when the elevator got busy and it took forever to get up and down as people were stopping to get on or off at nearly ever floor almost. That first night, we ordered in from the Champs Restaurant in the hotel and it was de-licious!!
(Me just arriving in our room - 2125 - after a loooong day of travel)
(One view of our Hyatt Regency hotel room)
(Looking out the window on the 21st floor)
(Looking down from the 21st floor on our first night)
Wednesday, our second day there and the "Pre-Congress Day" where you could get registered and go to extra workshops that you had to pay extra in the registration fee to go to.
(All registered here and you can barely see the red heart sticker on the right on my name tag
that indicated I was a "first timer" at WBC)
(Pops and I's name tags together)
(The Duke Energy Center. This is the convention center where all the workshops/keynote speakers/our free meals/closing ceremonies and closing banquet were all held. It was HUGE.)
At about 6pm that evening was the Walk of Remembrance where we all gathered and took a walk where we were led by firefighters and a bag piper down to the Memorial of Fallen Firefighters. When we arrived there, the bag piper stood up on the platform and played "Amazing Grace" and wow was that powerful. Put tears in my eyes. There were a couple speeches made, two by burn survivors who were firefighters. There is a very special bond between firefighters and burn survivors and that point was made during those speeches. The whole time we were there the firefighters were just so incredible to us. Just awesome. It was an emotional service.
(There was a fire station that was by where we walked and the fireman had the lights going on their trucks and they were standing at attention as we walked by. So moving to see them.)
(Just a glimpse of people making the walk. There were SO many people.)
The bag piper that led us and played "Amazing Grace")
(These were the fireman who led us with that banner that we all signed.)
Then that night was the opening banquet which was fun, except we were pretty beat from our full day of traveling the day before. But we stayed for awhile. There was a small live band that played some great music actually and it was just a good time. (*Notice all the following pictures are my famous "self-portraits." I love those kind of pics for some reason. And also note, in pretty much all these pictures, you can REALLY see my scars, which is awkward for me to show you these. Hopefully those scars will get fixed someday soon with "derma-abrasion")
(Dad and I at Opening Banquet)
(An online fellow burn survivor and friend, Gary and what a character he is! He is a wonderful guy and friend)
(Another online fellow burn survivor and dear friend, Luciana that I finally got to meet. She found me through this blog actually. Also got to meet her husband, Justin and they are amazing people.)
(Another survivor I am proud to call my friend now, Jan. She is also from Portland OR - we flew in together - and such a character. I got quite a kick out of her and she has such a warm heart.)
The next days were filled with many workshops, eating great free breakfasts and lunches and then more workshops. Our inbetween time was filled with either napping, resting in the hotel, visiting with other survivors/friends or taking in Cincinnati. Our hotel was in downtown Cincinnati and the Fountain Square was just a couple blocks from where we were so that was a really fun place to go. I think we went down there Thursday night and had dinner. It was really beautiful and the weather was beautiful.
(Dad and I in front of the fountain at Fountain Square)
(The Fountain Square at night. Beautiful)
On Friday, we all kinda had the afternoon off so my dad and I took the advice of some great friends that I knew online and finally got to meet (Luciana and her husband Justin) and we went up to Mt. Adams, an "eclectic hilltop community" as they describe it up there and it was really, REALLY neat and loads of fun. It was obvious you had to have money to live up there. And we happened to sit next to Nick Lachey and his new wife Vanessa Millino while we were eating at the Mt. Adams Bar and Grill!! It was crazy seeing them walk in there of all places and then sit right next to us!! Totally random. So, then we got a cab ride back, as we got a cab ride there, and spent the rest of the evening in our hotel room. We were beat from walking around everywhere up there. But that was a really fun day and afternoon.
(One of the streets in this wonderful "eclectic hilltop community." Very cool buildings and streets.)
(A famous Bar and Grill up in Mt. Adams during the prohibition of Alcohol. Interesting history in that restaurant and several famous people have been there...including Nick Lachey who sat next to us!!)
(older "row" type homes. Kind of look like old townhouses. Really neat buildings up there.)
Saturday's closing ceremonies in the afternoon were really quite emotional. It got me. It was really beautiful at the end when we were asked by Amy Acton who acts on the Executive Board of the Phoenix Society that does the WBC (and who also gave me the scholarship to go to this) to all get in a circle around the Grand Ballroom we were in and we passed around the Phoenix Society flag while wonderful music played. Then after the flag finally got passed all the way around the circle, we watched an animated video presentation they put together about how life is before a burn injury and then what happens to you, your family, your friends and your life after a burn injury. That hit me. Hard. And I couldn't stop from just crying and crying because I could totally relate to it all. It was just extraordinarily moving and I really had a cry. That was hard.
Then during our time between then and the closing banquet, I needed some more rest and my dad had been wanting to go to the top of the Hilton hotel, which is the tallest building in Cincinnati cause there's an observation desk up there. I wasn't too interested having lived in New York and seen a more impressive skyline than Cincinnati's (nothing against Cincinnati!) so I laid down and had a nap while my dad went up and I'm glad he went ahead and did it cause he really enjoyed it.
(One of the views on top of the Hilton)
(This is the bridge that was the model for the Brooklyn Bridge in NYC. Made by the same guy, he was testing his idea for the Brooklyn Bridge with this bridge in Cincinnati)
(The Cincinnati Bengals Football Stadium)
(The view of Fountain Square from the top of the Hilton)
Closing Banquet was a three course dinner and we were served like celebrities. We sat at assigned tables and our little Portland group got our tickets together to get a table so we could all sit together for the last night.
A few awards were given along with speeches and then the ten piece band began and people hit the dance floor. After awhile, my right leg where they took out that huge flap piece was starting to bother me so we said some goodbye's and headed back to the hotel where we began our packing to get ready to leave very early the next day. At this time it still wasn't hitting me that WBC 2011 was over. My first WBC had come to an end.
(Part of our "Oregon" group - J.R. from Bend, Jan from Portland, and Mona from Lake Oswego)
A few awards were given along with speeches and then the ten piece band began and people hit the dance floor. After awhile, my right leg where they took out that huge flap piece was starting to bother me so we said some goodbye's and headed back to the hotel where we began our packing to get ready to leave very early the next day. At this time it still wasn't hitting me that WBC 2011 was over. My first WBC had come to an end.
But it has hit me today. I have been worried about coming home and being so isolated. WBC was a life changing event not only in the great motivational speakers we had and the workshops, but I think a lot of the real healing happened outside of the workshops when we were just hanging out with other survivors and friends. I met a lot of my online friends who are burn survivors and then I met a lot of great new people who all have changed my life forever and I am truly blessed to have met them, spent a week with them and been able to share in this experience with them. They are all incredible people and I aspire to have the kind of energy and positivity that so many of them possess and I hope to inspire them as well. To my burn survivor friends that I met and made during my time at WBC this past week, thank you for what you have brought to my life. Thank you for your incredible friendship and love. There is nothing like what you gave to me at this year's WBC 2011. You are all truly amazing in my eyes. And I miss you already.
During the closing ceremonies, someone with the Phoenix Society read a letter from a family (the mother wrote it) that were unable to come this year and she wrote something in there that really described the WBC and that's, "WBC is not the end, it is just the beginning. Like finding a family you always knew you had but never knew where to find." I think I am blessed to have three families now where I once had two, and I was blessed to have two to begin with. I have my blood family, I have my non burn survivor friends who are dear to my heart and now, after WBC, I found a new family. A family of other survivors as well as caretakers and caregivers. I am truly blessed to have those three family branches in my life. As the brilliant and inspiring Helen Keller said, "I would rather walk in the dark with a friend, than be alone in the light."
The Official World Burn Congress 2011 Slideshow
Animated Slideshow at Closing Ceremonies That Shows Life Before and After a Burn Injury - Very Moving
Thursday, September 22, 2011
"Borrowed....."
I had a workshop today in the World Burn Congress that I'm attending this year, which I'll write all about when it's over and I'm home. But I wanted to share this particular piece with you because it touched on a blog post I wrote earlier, about I'm the one who's going to have to do the most work to get out of my deep dark depression, but I also need help, a hand to grab onto mine firmly and not let go. This is a poem kind of about that, written by Eloise Cole.
I think that's such a beautiful poem and a very interesting idea, to "borrow hope" from someone whether it's a loved one or a friend. Sometimes we just don't have it and we need that help, that firm hand grip that I talked about earlier and so thus we "borrow" it from you, whatever "it" may be. "It" could be something other than hope. It could be strength or courage. I think I borrow a lot of different characteristics from my friends. From Jen and Clay I often borrow faith. From my best friend Corrie and her husband Michael I look to them to borrow that hope. From my dear friend Jessa, I borrow courage. From my other dear friends Jamie and her husband Sam, I borrow smiles and laughter and from Steph, I borrow strength. And from Mikey aka Madd Skillz, I borrow belief in a future. My family is a whole different grab bag of borrowed attributes but these are just a few examples from a the handful of real dear friends that I have of what I borrow from them and I am so grateful that they let me borrow those attributes that they themselves present so strongly in their own characters. There are other friends and other things that I borrow but those are my main ones right now. And I thank you all, not just those I mentioned but all of you who may not even know that I borrow something from you. You all give something of yourself to me and I borrow it right now to help get me through this rough time and through this journey. Thank you everyone. You have truly blessed me.
Borrowed Hope
Lend me your hope for awhile, I seem to have mislaid mine.
Lost and hopeless feelings accompany me daily.
Pain and confusion are my companions.
I know not where to turn.
Looking ahead to future times
Does not bring forth images of renewed hope.
I see mirthless times, pain filled days
and more tragedy.
Hold my hand and hug me.
Listen to all my ramblings.
I need to unleash the pain and let it tumble out.
Recovery seems so far distant.
The road to healing a long and lonely one.
Stand by me. Offer your presence.
Your ears and your love.
Acknowledge my pain, it is so real and ever present.
I am overwhelmed with sad and conflicting thoughts.
Lend me your hope for awhile. A time will come
When I will heal, and I will lend my renewed hope to others.
I think that's such a beautiful poem and a very interesting idea, to "borrow hope" from someone whether it's a loved one or a friend. Sometimes we just don't have it and we need that help, that firm hand grip that I talked about earlier and so thus we "borrow" it from you, whatever "it" may be. "It" could be something other than hope. It could be strength or courage. I think I borrow a lot of different characteristics from my friends. From Jen and Clay I often borrow faith. From my best friend Corrie and her husband Michael I look to them to borrow that hope. From my dear friend Jessa, I borrow courage. From my other dear friends Jamie and her husband Sam, I borrow smiles and laughter and from Steph, I borrow strength. And from Mikey aka Madd Skillz, I borrow belief in a future. My family is a whole different grab bag of borrowed attributes but these are just a few examples from a the handful of real dear friends that I have of what I borrow from them and I am so grateful that they let me borrow those attributes that they themselves present so strongly in their own characters. There are other friends and other things that I borrow but those are my main ones right now. And I thank you all, not just those I mentioned but all of you who may not even know that I borrow something from you. You all give something of yourself to me and I borrow it right now to help get me through this rough time and through this journey. Thank you everyone. You have truly blessed me.
Monday, September 19, 2011
Angels Without God?
I've been thinking about something my therapist said to me for the entire weekend since I saw her last Friday. We had a pretty rough session but at the end of it she said something that really touched my soul. She said "I think you have a lot of angels on your side. And I'm one of them." Wow, what a thing to say to someone going through something like what I'm going through and I mean that in the best way. It was a powerful and moving statement. She just said it so softly and gently yet with conviction like she really believed it and after she said it, she just looked at me and smiled a heartwarming, beautiful smile and right then, she did look like an angel.
So it's had me thinking all weekend through to today. You all know the problems that I'm having with my faith and my belief in God or a higher power, if you prefer, since my accident. I just don't understand it and I'm so angry about it all. And 3.5 years later, I'm still having troubles with my faith and beliefs and I'm still angry. But when my therapist said what she said on Friday and then looked the way she looked it made me wonder, can angels exist without a God? So, I did a little research.
The word "angel" comes from the Greek word, "Angelos" which means "messenger." In many religions, an angel can be one who acts as a messenger of God. In the Bible it is generally seen that the will of God is usually carried out by angels. It is also said that angels have a kind of intimate relationship with God as His special adopted children. In one article it says, "Angels are the essence of love and joy and stem from the Heart of God."
So basically, none of the research really answered my question. All the articles I read always include God and they all say angels stem from God, that they are His messengers and carry out His will. However, I did come across a discussion forum where someone asked the very question I am now and several people gave her the typical answer that I just did here. However, one person talked about speaking of or thinking of God in a way of a "Divine Spirit" that is a part of all of us and the Universe. And therefore angels are messengers of a part of that "Divine Spirit" so that when we ask for help from the angels, we "tap into that which we are also a part of - the Whole Oneness." I love that. I find that a very interesting answer and view. But, it still connects angels to a higher power. That angels cannot exist without it.
I'd like to believe in God and I may still. I'm just struggling with it right now because of the accident. But I'd really like to believe in angels because they seem so pure and beautiful and there to protect you, save you from any harm. I always say that God wasn't there when my accident happened. My mother always tells me that He is what kept me alive by continuing to breathe life into me. But what if it were angels that kept me alive, that continued to breathe that life into me? Or what if there was nothing? What if we are all alone and I was the only one who kept me alive? And what if it were the doctors who continued the fight on the operating table who kept me alive? What if there was no kind of spirit or higher power? Even though I'm on the fence with God and my faith, I do still find that idea a little scary. To be all alone here? To simply not exist anymore after we die? It's hard to know what to believe and even harder when you've gone through something like I have or what many others in this world who have suffered some kind of terrible trauma to know what to believe.
But the way that my therapist looked at me, it was like looking at an angel and I want to believe that she is right, and that she is one of those angels on my side. I think if that's true, I have some very wonderfully dear friends of mine that I would consider some of my angels and then, of course, my family. I do know I believe in the Universe, I always have. I've always been a kind of "hippie spiritual" being :) I'm scared to not believe but I don't know yet how to believe again.
Saturday, September 17, 2011
Preparation For The Day My Chance Will Come
"I will prepare and some day my chance will come." ~Abraham Lincoln
As you can tell, I'm a big quote enthusiast (I research them, seek them out and retain them in my brain like I retain movie quotes/information. I am also a big presidential history buff and Abraham Lincoln is one of my favorites.) and I've always liked this one. A lot of people may say that it has a kind of "waiting" innuendo and thus puts an emphasis on that. That it doesn't tell us most of getting what we want in life includes hard work and going after what we want, not waiting for it to come to us. But I don't think that's necessarily what this quote is saying. I think you need to look at the word, "prepare." By preparing that means doing the work so therefore you aren't just waiting around for your chance to come to you, you are working by preparing, preparing is working.
There is so much I need to do, to prepare for when my chance will come that I need to start getting back up on my feet. I'm tired of being in this deep dark place but as I wrote in an earlier post, it's so hard to crawl out of it. It's like falling down a muddy slope and trying to get back up to the top when you're all slippery with the mud, slippery with the darkness. As I've said, it's easier to stay in the dark than do the work to find the light and even harder to do the work to STAY there. But there has been one thing I've gone back to and that's the piano where I took lessons for around 13 years and achieved the highest level in music theory - Level 10- and I taught it, too. It's my favorite instrument. I loved playing the piano and then when I moved to New York, I didn't have a piano so I went almost 4 years without playing and now since my accident another 3.5 years has gone by so it's safe to say, I'm a little rusty but I'm not without the talent I once I had. I just need to get to practicing again.
Maybe 5 months or so after my accident, I decided that I wanted to get a new, very nice but not overboard digital piano and sell our old one. I didn't want all these fancy buttons to do stuff, I just wanted a very simple, but very nice digital piano with pedals and weighted keys. Those last two things were a must. And I'm not talking about those kind of digital pianos that just sit on a stand, I'm talking about a serious digital piano. And one day in Portland, after a doctor appointment, I came across the perfect, most beautiful digital piano. And for a good price, I bought it with my own money. It looks just like a regular piano with a beautiful black finish. But it continued to sit for awhile. I played it a little when it first came home but then I was so frustrated that I wasn't at my top level of performance as when I last played, I didn't want to play anymore. So I stopped. I was even angry at myself. But now, just this week, I got some inspiration from my favorite band, The White Stripes :) I was listening to a song called, "Take, Take, Take" and it's one of my favorite songs cause the lyrics are really great. The unfortunate part is, there are no piano books on any of Jack's piano songs, he's only released guitar tab books for his work. So that's really frustrating. But I listened and listened and listened and started to learn it by ear and I finally got it and as I continued to play it better and better, I was really enjoying myself and it felt so good to touch those keys again. To make music again. It was music to my ears, literally. Even it if was still a little rusty, it felt good and with it feeling so good it made me continue to play everyday, multiple times a day and thus making me better and better. Music has always made me feel better. Jack White's music has gotten me through some very rough times in my life and he's continuing to help me get through this time and playing his music is, I don't know, giving some life back to my soul because music resides in my soul, performance resides in my soul.
There are many other things I need to do to prepare if my chance is going to come someday. Such as getting my singing voice back with the help of a dear friend who teaches it and could really help me and looking at some monologues, reading plays again and watching old movies again. Cause if my day comes, and I have not prepared, that chance will slip through my fingers and fall at my feet, the feet that I couldn't get myself to stand back up on. And that, I will never forget and never forgive myself for.
As you can tell, I'm a big quote enthusiast (I research them, seek them out and retain them in my brain like I retain movie quotes/information. I am also a big presidential history buff and Abraham Lincoln is one of my favorites.) and I've always liked this one. A lot of people may say that it has a kind of "waiting" innuendo and thus puts an emphasis on that. That it doesn't tell us most of getting what we want in life includes hard work and going after what we want, not waiting for it to come to us. But I don't think that's necessarily what this quote is saying. I think you need to look at the word, "prepare." By preparing that means doing the work so therefore you aren't just waiting around for your chance to come to you, you are working by preparing, preparing is working.
There is so much I need to do, to prepare for when my chance will come that I need to start getting back up on my feet. I'm tired of being in this deep dark place but as I wrote in an earlier post, it's so hard to crawl out of it. It's like falling down a muddy slope and trying to get back up to the top when you're all slippery with the mud, slippery with the darkness. As I've said, it's easier to stay in the dark than do the work to find the light and even harder to do the work to STAY there. But there has been one thing I've gone back to and that's the piano where I took lessons for around 13 years and achieved the highest level in music theory - Level 10- and I taught it, too. It's my favorite instrument. I loved playing the piano and then when I moved to New York, I didn't have a piano so I went almost 4 years without playing and now since my accident another 3.5 years has gone by so it's safe to say, I'm a little rusty but I'm not without the talent I once I had. I just need to get to practicing again.
Maybe 5 months or so after my accident, I decided that I wanted to get a new, very nice but not overboard digital piano and sell our old one. I didn't want all these fancy buttons to do stuff, I just wanted a very simple, but very nice digital piano with pedals and weighted keys. Those last two things were a must. And I'm not talking about those kind of digital pianos that just sit on a stand, I'm talking about a serious digital piano. And one day in Portland, after a doctor appointment, I came across the perfect, most beautiful digital piano. And for a good price, I bought it with my own money. It looks just like a regular piano with a beautiful black finish. But it continued to sit for awhile. I played it a little when it first came home but then I was so frustrated that I wasn't at my top level of performance as when I last played, I didn't want to play anymore. So I stopped. I was even angry at myself. But now, just this week, I got some inspiration from my favorite band, The White Stripes :) I was listening to a song called, "Take, Take, Take" and it's one of my favorite songs cause the lyrics are really great. The unfortunate part is, there are no piano books on any of Jack's piano songs, he's only released guitar tab books for his work. So that's really frustrating. But I listened and listened and listened and started to learn it by ear and I finally got it and as I continued to play it better and better, I was really enjoying myself and it felt so good to touch those keys again. To make music again. It was music to my ears, literally. Even it if was still a little rusty, it felt good and with it feeling so good it made me continue to play everyday, multiple times a day and thus making me better and better. Music has always made me feel better. Jack White's music has gotten me through some very rough times in my life and he's continuing to help me get through this time and playing his music is, I don't know, giving some life back to my soul because music resides in my soul, performance resides in my soul.
There are many other things I need to do to prepare if my chance is going to come someday. Such as getting my singing voice back with the help of a dear friend who teaches it and could really help me and looking at some monologues, reading plays again and watching old movies again. Cause if my day comes, and I have not prepared, that chance will slip through my fingers and fall at my feet, the feet that I couldn't get myself to stand back up on. And that, I will never forget and never forgive myself for.
Subscribe to:
Posts (Atom)