Thursday, June 30, 2011

Open Expression Of Hard Feelings But Always Grateful

I was recently kind of criticized for how I have handled my recovery in the sense that I am ungrateful. This could be farther from the truth. The reason for this criticism I think may have been sparked by my last post about how I was unhappy with my doctor's next game plan of taking a break for 6 months before continuing on with the reconstruction. In that post I spoke of how it made me feel, which was unhappy and wanting to keep moving on and moving forward with the reconstruction so I can get on with what I'm going to do with my life. Evidently, that came off as ungrateful. So let me talk about that since I have chosen to limit what I post about my emotional feelings and hardships on Facebook. But this is my blog and I will not censor what I say here.

To shout it out to the world, I AM GRATEFUL!!! I am grateful for MANY things. I will say that I am grateful for being alive first and foremost, even though there are days, I'm sad to say, there I do actually wish I had died in the fire and I am so very grateful for my incredible family, who have endured so much alongside me and my awesome friends (those that I can truly call my friends) who have backed me up and stood by me through thick and thin. I am grateful the accident only involved me and no one else. I am grateful that the fire didn't get my hands so I can still play piano and while we're on that kind of subject, I am grateful the fire also didn't get my eyes or nose for those can be the hardest to reconstruct and irreversible if I had lost my sight. I am grateful the fire didn't take my legs or my arms. I am grateful for the paramedics that initially saved my life when they came to my home that night, for the doctor that was on call that night who continued the fight to save my life once I was in his care and for the plastic/reconstructive doctors who have gone on to help reconstruct me and get me my life back as well as the nurses who cared for me when I first came in, talking to me even when I couldn't hear them because I was in a coma and every time I come back to the hospital after a surgery. I am grateful for the OT's and PT's who worked so hard initially to combat the contractures and who continue to work with me when needed. I am grateful for how hard my mother and the social worker at the OBC, Sharon, worked to get me on the insurance that has saved us or we would be buried in medical bills. I am grateful to have that insurance! I am grateful that I have a wonderful, dear friend that is going to see what she can do to get my voice back since the smoke from the fire damaged my voice and diaphragm. I am grateful for the readers and followers of my blog that I started two years ago not sure what I wanted to do with it or if anyone would read it for that matter so I am in addition grateful that I did get readers and followers and am able to inspire people with my story and my journey. I am grateful for all the support I have been given by family, friends, readers and followers of my blog and even people who contact me that I don't even know! I mean, do I need to go on about everything more I am grateful about to show you that I AM a grateful person! And I mean these things, these are not just words for show.

Many survivors process their recovery in different ways and how they choose to do so is how they choose to do so. For me, as a survivor of a horrific accident that may not have taken my arms or legs, it did take away my life as I knew it. I have had to relearn a new way of life and rediscover myself, particularly rediscovering myself as a survivor. I didn't look in the mirror when I was initially hurt for months. And when I finally did, with one of my PT's and my brother Jake by my side, I didn't recognize the face that was looking back at me. I just looked at that messed up face with tubes coming out of her nose and a lip that was melted inside out and then finally, I cried. And I cried and cried and cried. I never thought I was beautiful before the accident but when I looked in the mirror that day, and I don't say this or mean this with great ego, I knew I had been beautiful once and now it was gone and I wasn't gonna get it back. Was I going to look like this forever? To this day, even though my plastic/reconstructive doctors have done wonders on me, I still avoid looking in the mirror as much as possible and when I do look in in it, I still don't recognize the face looking back at me, or the body that I see all mangled up in scars. And it still makes me cry.

My recovery has been just that, MY recovery. And I have chosen to express any feelings I may be having whether it's through a status post on Facebook or through a post on my blog. I have chosen to express any feelings because I cannot (and refuse) to sugarcoat my life now. I am not a recovering survivor who goes around being thankful everyday that I'm alive with a smile on my face and sun shining out of my ass. Yes, I am thankful, but that doesn't mean I can't also be angry, frustrated, sad, lost at the same time. Because to be honest, those kinds of feelings, those feelings of anger, frustration, sadness, loss outweigh the better feelings most of the time at this stage of my recovery. No, I didn't lose my legs or my arms but I did lose a lot in that fire. That fire took a lot of things from me that may not be tangible and it took some things away from my family. I mourn the life that I once had everyday and I mourn the dream for my future that the fire may have taken away from me everyday. I mourn the some of the person that I was before the fire: bigger than life, full of laughter, a healthy body, courageous to have actually gone after the dream I always talked about doing, and happy for the most part. There are some parts of my character before the fire that I lost that I am happy to have lost for I do believe, and have been told, that I have become a better person now. There is also the change in independence I have had to become accustomed. I am now a very dependent person on my family and friends to do the most simplest of tasks when I was once a very independent person. This is one of the hardest things to deal with because not only does it frustrate me that I can't do such simple tasks but I also feel bad for the people, particularly my mother who is my main caretaker, who have to help me almost 24/7. But just because I may express any of these kinds of feelings that I harbor never ever means that I am ungrateful. I have chosen to be real about what I'm going through and I can bet that even those survivors that seem so happy and "grateful" all the time despite what happened to them, even if it's worse than me, that they too have the same harder feelings that I have and the kind of bad and very bad days that I also have.

There are so many things that I go through on a daily basis that you don't even know the half of because I don't share it with you. So many things. In fact, there has been something that I have kept to myself that only my family and a very few select friends know and when this whole thing blew up, I happened to mention it to a friend in a message and she told me that she knew of everything else that had happened to me but never knew of this because I never talked about it. Well, here it is. When I was initially hurt, my chest was burned so badly the doctor wasn't sure if he was going to be able to save my breasts. When he came out to talk to my parents about my condition and what was to be of my future from now on, my mother asked him if he was able to save them. He told her he had tried but he wasn't sure if it was going to work. Well, it did work but they're not exactly "good looking" breasts, I guess you could say. I should also tell you that I completely lost my nipples in the fire before I even got out of the house. There was nothing he could do about that. They were already burned off. So, there it is. I haven't talked about this because it's such a very personal part of a female's anatomy and it's quite frankly, embarrassing. But it's very hard to deal with because it is so much of being a woman and I don't have that anymore. I may have the breasts, but they are mangled in scar tissue and contractures and I have no nipples so they don't exactly feel like having a woman's breasts. One thing that makes me tremendously sad about it all is that if I ever do find a partner in life and have kids, I won't be able to breast feed them. And that makes me very sad because I think that's such a special and important part of bonding between a mother and her newborn. I will never get to do that. I did have a major reconstructive operation on my breasts in maybe, 2009, to do some contracture releases that had formed on my breasts as well as inside them. That was a very hard surgery. They didn't really look better after the surgery, but at least the contractures were gone. However, as you well know, my body did not keep it that way for long and some contractures have started to form again, pulling my breasts down and somewhat to the side so I will probably have to have another major surgery on my chest again. That doctor who initially worked on me almost performed a mastectomy on me because I was so badly burned on my chest but decided to try and save them instead, and he did. But to be honest with you, they don't feel like a woman's breasts to me and I almost do wish he had performed the mastectomy on them so I wouldn't have to deal with the releasing surgeries and I basically almost feel like a man when it comes to my chest now anyway. This has been very hard for me to deal with since I was hurt and continues to upset me every day when I am getting helped dressed and I look down at my chest and see nothing womanly there.

So in closing, I have chosen to let you see the realest and rawest of the moments, feelings and hardships I am going through as I go down this journey of MY recovery. I'm not going to sugarcoat anything and blow sunshine up my own ass just so you may be able to read this a little easier or sleep better at night. And I know that every survivor has their good AND their bad AND their very bad days. Some choose to show just the good, some choose to show a little of both, and then there are some like me who have chosen to show you it ALL. And I have chosen to share it ALL with you because I want to inspire you to be better in your own lives, to be a better you because it can all be taken away from you so fast, just like it was taken from me. And I want you to see how I grow from my darkest of days to hopefully someday, achieving a great future again because that's a real survivor's journey. But never, ever in my darkest of expression of feelings am I ever ungrateful for I always am grateful. Always. And I'm doing the best I can right now with the emotional tools I have at this part of my recovery and my journey.

5 comments:

Emily Nash Gray said...

You are a beautiful woman Sarahbeth! You were before the accident and still are, like I told you last month, I still see the beauty that you are not only inside but outside as well! I know that this fight for reconstruction is not over, and I hope you know I'll be there with you every step of the way! I want you to always be who you are, healing how YOU need to heal! We all love you Nd we are here for YOU Sarah!!!

Amanda L said...

Sarahbeth, I really appreciate you and your honest approach to sharing with us. I hope the hurt that insensitive comment on fb caused heals quickly, because there are so many of us who love you for all you are. I love how real you are now, and how grateful, and angry, and funny, and confused, and all of you. Including that the sun doesn't shine out your ass. Thank you for being you.

Amanda L said...

Oh, and thank you for sharing about your breasts. I had assumed the damage was pretty severe, because that surgery was clearly a major one, but you brought me to tears by letting me know the full extent of that loss and explaining how it impacts you emotionally. I can only try to understand that pain. :(

I so hope you do find your love and have children one day. And that you find a way to do the work you want to do.

Hugs,

Amanda L

Gram/mom said...

You have no idea of the special place you have in my heart and will always have. Thanks for the wonderful writings and sharing of yourself. I am thankful to be able to read this and thankful for your honety, this explains so much more than FB posts and I do apologize if I seemed uncaring in my post. Obviously the snippets on FB can and do not give anyone a real picture of you. Scott told me you were asking about WBC. I hope you are able to attend, I know he believes the experience is a huge giving and receiving for all who attend. I respect your decision to not talk to me and am thankful you continue to communicate with Scott. Hugs a bunch.

MikeL said...

This was such an honest and moving entry! Thank you for sharing it. I'll repeat it over and over and just say that you are inspiring!

I also wanted to say that while I think obviously being a burn survivor would be extremely hard on anyone. I do get the impression it is probably harder for a woman than a man. Not to say that its a walk in the park for a man but it would seem there are things emotionally and physically that affect a woman more.

You have handled telling your story with such openness, grace, and honesty. It's very much appreciated!!