When I first started this blog, I didn’t know what to expect. I wanted to share my story, help others through similar experiences. Maybe make one or two individuals feel less alone. When this blog came to fruition, the idea of sharing my story became daunting. When this new path of chronic illness unfolding in front of me, I knew there was a reason. There was something that I needed to learn. For some reason, the universe chose me. There’s such a thing as medical narrative. This comes in different forms, but it’s how we explain what is happening to us when we are ill. This term was foreign to me but once I learned it, I saw how I created my own medical narrative naturally. My world changed drastically overnight and with it, my perspective. Suddenly, I wanted to live with intention.
When I started my theatre degree in 2017, all I knew was that I wanted to perform. It felt like I guided to the stage, I had a strong sense that it was where I needed to be. In the second year of my studies, I found that theatre was an incredible tool for social justice. As a society, we can understand concepts when they play out in front of us. The best way I can explain this is to use the show The Twilight Zone as an example. This show was created with the intention of showcasing societies short comings. Every episode has a theme, a hidden message with a strong take away that we can apply to our own lives. I saw this and was hooked. My internal yearning for the stage came into focus. This idea called to me with an intensity that I can’t explain. I would use theatre to change the world. (Dramatic, I know but I’m a theatre major. It’s what I do best)
We all have a lot to learn, about ourselves, about others, and about the world. There is a vast amount of knowledge that we don’t know or choose to ignore. When our doctors tell us we should exercise and eat healthy, how often do we listen? Yes, the idea is great but it’s difficult. It’s easier to choose the quick and easy option. We live in a world full of instant gratification. I fall victim to this all too easily, as we all do. When I got sick, I was determined to do everything right. The doctors assured me that by following protocol, I would be in excellent shape. It was possible to even grow out of my dysautonomia. Is that still possible? From what they’ve told me recently, probably not. It became the most frustrating process of he said, she said. If you read my last article on radical acceptance, you might understand why I needed that so desperately. Either way, I continued on my journey. Before I got sick, I was planning to move to Ireland to finish my degree. I was doing everything the doctors said, I was eventually going to get better. So I went to Ireland.
One day, I found myself living in a foreign country, sick and exhausted. The doctors were jumping back and forth on what they thought I was dealing with. Without warning, after sharing with them that my heart reached 230 bpm then dropped to 50 bpm, their expressions changed. There was no more talk of protocol, no more explanation of what I could be doing better. The doctor looked me in the eye very intently. She took a deep breath and with urgency in her voice said to me “You have a very serious heart problem. You need to see a cardiologist as soon as possible.” Knowing what I did of the Irish health system, I had a choice to make. I could stay and take a gamble of paying hundreds to see a private cardiologist. I could wait months for the free public healthcare system to get me an appointment or I could go home. I’m telling you about this moment because it’s the most vulnerable I’ve ever felt. There I was, alone, thousands of miles away from my family and I have to make a potential life or death decision. So what did I do? I went home. I conceded that I couldn’t do it on my own. I needed help. At the time, I felt weak and depressed. I felt like I had given up. Looking back, that was the bravest choice I ever made.
When I became sick, I was like every other person my age. I played up the dramatics of “poor me, life didn’t go the way I planned.” As I grew with this illness, I started to live with much more intention. The more I faced my mortality, the more I became aware that I didn’t want life to pass me by. I discovered I wanted to make a difference in this world only a year earlier through theatre. I was going through something but couldn’t I still make a difference? Like magic, the world came into focus. I understood why I was given this illness. I was looking to explore the world and tell other peoples stories and suddenly, I had my own to share. This journey has taught me so much, I am not even remotely the same person I was two years ago. I’m not the same person I was two weeks ago. Everyday, I am learning and growing. Patiently, I am adapting as my world changes. I’m reminded everyday of my flaws, my shortcomings but where I used to dwell, I now find compassion.
So why I am telling you this? I’m sharing this because it feels right. More and more, I listen to my gut feelings and say “I don’t know why I am compelled to do this, but I’m going to listen and pursue this.” Sharing this with you is an act of courage. I find this to be scary and overwhelming. I want to live with intent. I want to assure others that despite the terrifying circumstances you are sure to face throughout your lifetime, you will survive. I have created this medical narrative as an act of survival, a way to cope. That being said, I believe it with my whole heart. I have discovered intense fears that I didn’t know I had. One of them, is vulnerability. As I look back throughout my life, I have shied away from almost every opportunity I have had to be vulnerable. It scares me more than my illness does. Why? I don’t know, but I feel my purpose in this world is to share my story. I want to hold the hands of those who are going through similar struggles. I can say with confidence that sharing vulnerability doesn’t make me weak. It’s what makes me strong. I hope everyone’s day is wonderful! Thank you for reading.
Well said, well written–I’m proud of what you are doing here!