Trying
CF liberated me this past week and then I recoiled so fast into a pit of hopelessness to be crippled by my disease. Dramatic, yes? One technique I learned from my solo-performance intensive writing weekend. Grab the audience, tell a problem and be vulnerable. Last week I did the pre/post FEV1 test to results that were not very impressive at all. Good news, I don't have asthma so its just the plugging causing my tight cough and am taking oral steroids for 2 weeks. I really didn't have time to think about all the negative stories I've heard about steroid use and what this possibly could mean for my future because I was focused on writing my story. So with that, I'm taking oral steroids and my cough is getting better. I reached a strange point on my path, I feel like I don't care anymore, but really am just tired of trying to figure this disease out at the moment. It isn't black and white, only the treatments are. So I test and try things to keep me going. Just accepting what is, is a very new and unfamiliar place for me.
At the writing seminar I explained I wanted to write a one-woman show about living with CF. After the initial prompts and direction we were given an over night assignment. I've written jokes about CF, I've filmed funny sketches about my care, but never have I been emotionally raw about my situation. When we would read our stories, my teacher would stop us when we were intellectualizing out stories. He said he doesn't pay to go the theatre to connect with the mind but to have an emotional connection. Until recently I never let myself get emotional over this disease. Growing up it was much easier to dream up explanations of this is how it should be's to avoid realities of this disease. There I was trying to retell a situation with emotion. I was over my head, I couldn't seem to dig deep enough, to replicate enough emotion onto the page.
The second day, I listened to others tell their stories, how they had these events in their lives change and shape them. Granted everyone was older than me so they had more experience and I guess more time to reflect on how they had become who they were. I haven't had many incidences in my life, for the most part I've lived a privileged life. My life has actually been set up like that to counteract the one big event in my life that happens everyday. I'm actually very good at living a life to avoid the real one. Growing up was all about avoiding what I really dealt with daily. It was a lot easier when I was younger, CF was barely noticeable. For now I feel like I can't get away from it, it has become my whole identity.
Third and final day of the class I had unearthed something writing the night before. I once again avoided reading my piece until the end. I sat there and was really affected by two stories. What I concluded about them was these people were writing from a place they had once been and had left. They were in a better place and were proud or just reflecting that they had made it somewhere else. I had a revelation to why maybe people want to hear my story, why at the end of class everyone said I was inspirational and courageous was because I can't get away from my story. It is here and for now always will be. I am trying with all my might to live as if it is nothing, as if I have moved on. I began to read my piece and tears flooded my face. I had never written or spoken about my living with CF in such a way. I apologized for the tears because an actress should be able to control her emotions. I finished and cursed myself for not being able to control myself while reading. I had practiced that mornings and I was fine. What I had written was no magnificent piece of dramatic writing but it was real to me. We discussed how I needed to expand in certain areas and how I did have the beginnings of a very compelling performance. I started off the week with a vulnerability I thought I was ready to handle.
By Tuesday I was upset and emotionally drained. I thought what a cope out to be working on something just because I have a disease. I can't spit out all the thoughts that plagued me for the next couple of days, to summarize, I allowed cystic fibrosis to be the disease I have always been able to avoid. A disease that robs you of life. I couldn't see past it, CF stoped progress. Not like this is new or anything but I had a really hard time getting out of bed this past week. I just felt I had no reason to leave bed where I was comfortable and didn't have to take a lot of energy. It was like I had decided I had nothing to live for. Then I reminded myself, its not always about me. I might still be on this earth for some else. So I started writing again but am still in this funk. Hopefully I can write myself out of it.
At the writing seminar I explained I wanted to write a one-woman show about living with CF. After the initial prompts and direction we were given an over night assignment. I've written jokes about CF, I've filmed funny sketches about my care, but never have I been emotionally raw about my situation. When we would read our stories, my teacher would stop us when we were intellectualizing out stories. He said he doesn't pay to go the theatre to connect with the mind but to have an emotional connection. Until recently I never let myself get emotional over this disease. Growing up it was much easier to dream up explanations of this is how it should be's to avoid realities of this disease. There I was trying to retell a situation with emotion. I was over my head, I couldn't seem to dig deep enough, to replicate enough emotion onto the page.
The second day, I listened to others tell their stories, how they had these events in their lives change and shape them. Granted everyone was older than me so they had more experience and I guess more time to reflect on how they had become who they were. I haven't had many incidences in my life, for the most part I've lived a privileged life. My life has actually been set up like that to counteract the one big event in my life that happens everyday. I'm actually very good at living a life to avoid the real one. Growing up was all about avoiding what I really dealt with daily. It was a lot easier when I was younger, CF was barely noticeable. For now I feel like I can't get away from it, it has become my whole identity.
Third and final day of the class I had unearthed something writing the night before. I once again avoided reading my piece until the end. I sat there and was really affected by two stories. What I concluded about them was these people were writing from a place they had once been and had left. They were in a better place and were proud or just reflecting that they had made it somewhere else. I had a revelation to why maybe people want to hear my story, why at the end of class everyone said I was inspirational and courageous was because I can't get away from my story. It is here and for now always will be. I am trying with all my might to live as if it is nothing, as if I have moved on. I began to read my piece and tears flooded my face. I had never written or spoken about my living with CF in such a way. I apologized for the tears because an actress should be able to control her emotions. I finished and cursed myself for not being able to control myself while reading. I had practiced that mornings and I was fine. What I had written was no magnificent piece of dramatic writing but it was real to me. We discussed how I needed to expand in certain areas and how I did have the beginnings of a very compelling performance. I started off the week with a vulnerability I thought I was ready to handle.
By Tuesday I was upset and emotionally drained. I thought what a cope out to be working on something just because I have a disease. I can't spit out all the thoughts that plagued me for the next couple of days, to summarize, I allowed cystic fibrosis to be the disease I have always been able to avoid. A disease that robs you of life. I couldn't see past it, CF stoped progress. Not like this is new or anything but I had a really hard time getting out of bed this past week. I just felt I had no reason to leave bed where I was comfortable and didn't have to take a lot of energy. It was like I had decided I had nothing to live for. Then I reminded myself, its not always about me. I might still be on this earth for some else. So I started writing again but am still in this funk. Hopefully I can write myself out of it.