Fear isn’t exactly specific to sarcoidosis but, for me, fear is a relatively new experience. I was not a particularly fearful person before my sarcoidosis diagnosis. In fact, fear is something that has actually snuck up on me over the years that I have been chronically ill. It has taken up a quiet residence in the recesses of my mind but it is constant now and I don’t like it.
Recently, I was given a golden opportunity to travel somewhere exotic that any person in their right mind would want to go. When the chance to have this great adventure was first presented to me, my heart raced and my mind exploded with excuses why I should not go. This was rather alarming to me. I was surprised by it. I hadn’t expected to feel this way and it confused me because, even though part of me knows I live with a new steady feeling of uncertainty in my life, I hadn’t realized that this fear had become so profoundly ingrained. I know this kind of alarm is not good for me and it is not something I can give in to.
After my panic subsided, I took a deep breath and decided that I needed to take a step back from this very odd reaction and examine it further, to better understand why I felt such trepidation at the prospect of being able to spend time in paradise. My head knew what my body didn’t. This was not a normal response. So, I did what I have learned to do since my sarcoidosis diagnosis, I took a self inventory of my feelings.
Self inventory is something I do a lot now that I am chronically ill. I know that I no longer see the world the way the world really is. I see it through the eyes of a person in a broken body but, I also remember who I was before I became broken and the only way I know to keep any part of that person alive, is to fight for her, to constantly examine my motivations and judgements about the world now that my life has been taken over by sarcoidosis. Am I seeing whatever I am looking at through my broken point of view and can I get past that point of view to improve the quality of my life? These are the key questions I have to ask myself whenever something new is presented to me.
Upon further examination of my overwhelming dread at the thought this adventure presented to me, I realized something. I realized that the fear was coming from the fact that my world now is small, very small. The thought of leaving the cocoon that I have created for myself is scary. I live in a cocoon now for a reason. It is safe here. I have routines that help me manage the symptoms of my disease in this cloistered place of comfort and familiarity. In this sheltered place, I sometimes forget that there is a big world out there and, apparently I’ve become a little afraid of it. In this sheltered place I can sometimes fool myself into believing I am physically and emotionally stronger than I really am.
After I better understood my fear, I realized another thing. I can’t let it rule my life and the moment I figured that out, I also realized that I have to take this adventure even if it scares me. While living on my cocoon is okay sometimes, it is not okay to be suffocated by it. The world is a big beautiful place and even if I am sometimes frightened by it, I need to remember that it is still better to remain part of it whenever I can than to shrink and wither in worry and angst in a completely collapsed place of illness and disease.
I will accept that taking this adventure is scary for me, that it will be an effort for me to stretch myself outside of my zone of comfort and routine. I will also and perhaps more importantly, acknowledge that it is good to be physically well enough to accept this challenge. There was a time I wasn’t and there may be times in the future when I’m not. I will embrace this adventure as a chance and a lesson to grow beyond my disease and to live my life, truly and completely. I will be grateful for the insight this trip as given me about how fear seems to be impacting my world view and I will continue to strive to overcome it wherever and however I can. Fear will not rule me.