When I Don’t Get What I Want
The last couple of days have been a roller coaster ride of emotions that stem from being rejected. I wrote about having to go to the University Of Seattle in order to visit my ENT to see what the next steps will be concerning my Subglottic Stenosis. I believed that I would be getting a neck dissection surgery, turns out since my Subglottic Stenosis is ten centimeters from my larynx that I will not be having that radical procedure done. Instead, I will be having a T-stent put in and a cork put in my trach hole. I don’t have to have a trach, just the stoma part in order to clean around the stent with the suction machine. Sounds fun? Not to me either.
Throughout this whole three year process I felt that I would have my throat fixed so that I would be able to run around and be the same Jamie I was before. That will not happen. I have to come to terms with that fact that I will have a cork in the middle of my throat in order for me to clean my stent so that I am able to breathe. I have to come to the terms that I take predisone that makes my dream of losing weight difficult and a challenge. I have to come to terms with my new physical condition and all those changes that have happened in the last three years. My journey’s been a confusing, obstacle latent, and often times a demeaning experience, but also it has given me an opportunity to see all the strength, courage, and capabilities that I truly possess. One of the things that I noticed that it has changed is my perspective. While chatting with one of my sisters on the IM she said that she is afraid because she does not know what she will eat, or if any of her needs will be meet while she is here staying with me during my recovery. When I read that, I thought to myself, “I was in this same mind frame two years ago when I first started getting sick”. Since my experience in July 2010 when I had my first larnyxspasm during surgery and lost control over not only my mind, but my body functions. I was back in the state of infant. Where I had to have someone bath me, change my diapers, and feed me and I had to trust that they were not going to drop me when they lifted me up in the contraption they used and that they weren’t going to assault me and I would be safe. When I got out of the that position, it changed my perception and I realized that I have a group of people in my life who I can trust completely, who were not going to hurt me, who loved me no matter what condition I was in, and who would stand beside me and fight with me. Some of them are blood related and some are not, but I quickly realize who these people are. I am grateful for them all.
A few of my friends have graciously given me supplies in order for my recovery and healing to be better and that touched me in a deep place that I didn’t know existed, simply because I am use to being the one giving and here are a group of people giving to me and my fur buddy. I am changing my view of my life and learning what I have and that I am not alone.
I know that my needs will be meet, not in the way that I desire them to be, but never the less they are being meet. I have a team of individuals who are willing to help me. I have learned a lot about communicating with my family, friends, and doctors in order for me to get what I need. I have endured and faced each challenge face to face and not run away, but I still have those fears of having people run from me. I have had that happen with three individuals in my journey, but a lot more have not run at all. I realize it isn’t me, it is them and their mind frame and how they have chosen to live their lives. I am still Jamie, the lady who is smart, a good listener, who loves God, her family, her cat, and friends. Who enjoys smelling the flowers, playing in the dirt, cooking up a feast, and learning new things. Who wants to continue these things she loves, but has been in a state of waiting for a long time, but now with a T-stent I can now go outside and smell the flowers, the salty air at the beach, and connect with people. My hearts desire is helping other be growth oriented and learn to communicate in a non-violent way, and be better individuals for themselves and their families. Now, the question is how to I get from that desire to actually DOING that. I have no fear that the answer will be revealed to me in time. I just have to be patient, which I am not that great at and listen.