At the age of four, I was told that I have Cystic Fibrosis and that I might not make it to twenty-one. At such a young age, comments like these were hard to process, but I still remained positive throughout my life. I always had that positive mindset until I was told that I was going to live past my life expectancy due to a miracle drug. While most people thought that I should be grateful, I was not. When this happened, my mental health spiralled downwards, as I had already planned my life around dying young. Now, I have to graduate college, get a serious job, and plan my future like a “normal” individual?
I decided to go to college, even though high school was not easy and during my senior year, I realized I was getting sicker. I used to dance and would have loved to pursue that in college, but I couldn’t manage that with my health. I enrolled in college to experience the college lifestyle and not so much to graduate. I was so excited to be on my own, live in a dorm, have a roommate, and pursue the “normal” life that everyone gets to live. After my family left when they finished moving me in, I had a mix of emotions. I was excited, but also scared, because at this point I was fully in charge of my health. If I got sick, I could not have my mom take care of me, so I needed a support system. During my freshman year, I was lucky enough to have one of my best friends as a roommate. She knew the ins and outs of my CF, such as the importance of my breathing treatments, feeding tube schedule, enzymes, and blood sugar checks.
Even though I had her support, I still had to be responsible for my health. At the beginning of my fall semester, I took care of myself the way I was supposed to. Then, I found myself only doing my breathing treatments once a day versus twice a day and skipping my feeding tube regimen every other day. I felt sick all the time and never got a break, but that didn’t stop me from meeting new friends and making the most out of college. But when I started to lose my motivation to tend to my health, I felt like I was losing myself as a person.
Because I got sick, I ended up missing a lot of my classes during the rest of the fall semester and I fell behind in school. Even though I wasn’t in college to graduate, I still fought for my education. I had a form with my university stating that I have CF with accommodations that must be met, but my professors still refused to cooperate with me. On top of that, I struggled to afford school. An honest conversation with my mom about loans made me realize that my life could be very short.
When I went home for winter break, I was immediately hospitalized. My parents and doctors recommended that I move home to go to a college in my hometown, which led to frightening conversations with them about the possibility of a lung transplant. After I got out of the hospital, I was in Michigan visiting my family and my CF doctors called me to tell me about a new CFTR modulator, which had helped a bunch of CFers gain weight and boost their lung function.
I started the new medicine and never thought it would work based on my past experiences with CF meds. I was wrong. It worked. When I went to my clinic for the first time after starting it, I saw my lung function go from mid-teens to the mid-forties but I still had the mindset that it wouldn’t work. When my lung function kept improving, I realized I had to get my life together. I am still alive and will be for a while, which is hard to cope with.
That period of my life was filled with ups and downs– the pandemic lockdown started, I stopped and started the new lifesaving drug several times, and my mental health suffered. Once the Covid lockdown was lifted, I moved back into my dorm for my sophomore year. I was excited to be back at school, but I started having negative thoughts, gave up in school, and had no idea who I was as a person. I made impulsive decisions, a lot of them I’m not proud of. I struggled with my friends and family as I tried to cope with my new life. I was unhappy with myself and felt like a failure when I got kicked out of school for bad grades. It felt like I was climbing up a rope and could never reach the top.
I was hesitant towards therapy, but something had to change. I started my first therapy appointment, and after two years of trial and error, I found what treatment and medications worked for me. After waiting almost a whole year to re-apply to my university, I got back in. I passed my winter and spring semester with all As and Bs. I started heading in the right direction. I ended up moving back home and transferred to an online school. I wanted to get away from the environment I “lost” myself in. To be completely honest, I still struggle at times, but I remind myself of the future I now am able to have. The huge shift in my life’s plan was hard to deal with, but I am so thankful, even after all the chaos that happened, that I am here today.
Bio: Hey Y’all! My name is Daelyn and I’m from Mt. Juliet TN. When I was younger I was ashamed of my disease and hid it from people. In high school I was featured on CBS news and it’s what motivated me to accept my disease. I am currently 25 years old and I’m proud to say I have CF. I’m hoping to advocate for myself and inspire other Cfers. We are not alone in this journey and even though it may feel like CF hinders you, it strengthens you.
Instagram and thread: daelyn_j
Facebook: Daelyn James
LinkedIn: Daelyn James
CBS News: https://www.cbsnews.com/news/mobile-makerspace-giving-hospital-bound-kids-space-to-invent/
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