By Priscilla Markus
Being diagnosed with a terminal illness at 18 years old is terrifying. Two weeks ago, I turned 31 and I am having a very difficult time accepting that I have this disease. No one in my life discusses it, including my 28-year-old Cyster. Yes, I did say CYSTER. She was diagnosed weeks after me, only to discover that although she has CF, she has absolutely no symptoms.
Before diving into the meticulous facts about my life with CF, let me tell you about myself. I am smart; complicated, yet simple. I am beautiful. I am sensitive. I am terrified of acceptance and I am exploring the concept of it. I dream, but always with my feet on the ground. I love to love. I have been hurt to the core, but I am in the process of rebuilding myself. I have anxiety and struggle with mental illness. I am insecure, yet incredibly secure when I really think about it. I like art. I like semicolons. I like to sing. I like to read poetry; and I like to write. We all have that one thing in our life that we are afraid of facing. For me, it is my CF; which is why I want to write about it.
My belief is that fear, like any other emotion, is temporary just as long as you commit to explore the root of the cause.
This can be different for everyone. For me, it is acceptance. I need to accept that this illness is a part of me. It does not define me, yet it is who I am. Have I accepted that? Not yet. I am in therapy twice a week. I am trying to link up with other CF patients in order to feel more connected to the disease. I am trying to understand who I am. I am trying to understand why I have been avoiding my breathing treatments. I am trying to understand why I have anxiety when I have to force myself to do my breathing treatments.
My CF has always been focused on gastrointestinal issues. I have had a feeding tube; I take about 30-40 pills a day in order to be able to eat. I have chronic pancreatitis, which is severely painful. I take pain medication every four to six hours to avoid having to rush to the hospital.
After truly living with this illness for 13 years, I have learned that physical and mental pain are unmistakably similar. Mental illness in itself is so complex and it represents a huge part of who I am; so when I learned that I have this life-changing disease, I do not think I was prepared for what came next. Preparing the nebulizer treatments that take forever. Having to boil the pieces to deep clean them; feeling sick and shaky while doing the breathing treatments. Not knowing when my next hospital stay will be. Trying to manage my anxiety so my pancreas does not act up. Not to mention having to live a “normal” lifestyle by going to work while in pain and having to lay down in an empty room while my co-workers talk about where I am and how I am never at my desk; which, of course, lights up my anxiety like a match ready to light a fire.
Anyway, this is a little taste of my life with CF. I am still discovering myself. Peeling every layer that defines me. This illness is still very new to me and I look forward to sharing more with you about the different topics of my life with CF.
One of my best friends always reminds me that the only way out is through. I think that is the perfect analogy. Let’s try this…
Hi. My name is Priscilla and I have CF. Which, is also, my Current Fear.
About the Author: Priscilla Markus is a 31-year-old CF patient residing in Los Angeles, California. Priscilla was raised in Buenos Aires, Argentina and speaks fluent English and Spanish. She enjoys anything art-related. She is also a singer-songwriter and has sung the National Anthem for various sporting events in Los Angeles, including the Clippers, Lakers, Dodgers, and Kings. She enjoys traveling, writing and reading poetry. She is very spiritual and manages her CF with introspection and creativity.