This column was my first official writing gig. I started my blog almost three years ago, but my posts were inconsistent and didn’t have a clear voice. “Mutations & Conversations” provided me with a space to write about the many facets of life with cystic fibrosis (CF) without overly worrying about the identity of my audience.
When Serena Lawrence, the late BioNews Services senior columns editor, first offered me the opportunity to be a regular columnist, I was speechless. I had reached out to her to inquire about a guest columnist slot, without the expectation of being given my own column. I was excited at the chance to get paid to write for an established publication with editors to help me improve my message.
I was tasked with deciding on a title and a goal for my column, so I asked myself what my greatest strengths are. I have a science background and a deep interest in the broader sociological aspects of living with a chronic disease like CF, and I wanted to merge the two. I settled on a column title: “Mutations & Conversations,” which I think is poetic and fun, and sums up what I’m trying to do.
I’ve written on many topics in the last year: treatment compliance, labeling people with CF as “sick,” a CF cure, exciting research, educating others about CF, the diversity of the CF spectrum, grief and milestones, and much more.
I’m proud of the work that I’ve done. I believe that discussing these topics is vital for the CF community. While I recognize that Cystic Fibrosis News Today is aimed at people with CF and their families, I also think that these columns could be useful for CF doctors, scientists, and others to assist them in learning more about the disease.
But “Mutations & Conversations” has given me more than I had expected. I’ve developed my communication skills over the year, and my voice and writing are stronger and more confident than before. I’ve become a more effective advocate. My writing and speaking voices have aligned. I’ve infused my writing with more conversational elements and learned how to use pauses to convey more emotion in my public speaking.
I’ve also developed tight bonds with many colleagues at BioNews Services. The coolest are the relationships that I’ve developed outside of the CF-specific community. Through working on other initiatives, I’ve become passionate about the broader disability rights movement. Each disease community interacts and advocates in different ways, but ultimately, we’re fighting for many of the same things.
When I got the chance to visit Capitol Hill to speak at the offices of my home state’s senators and representative, I started with my story. I concluded that the policies that benefit the CF community would also help the broader community of those with all forms of disabilities. It’s what we all deserve.
I’m writing this column a few days before publication. Today marks 18 months without my sister. Life presents so many unexpected roadblocks, but it also provides so many opportunities to find joy. I’ve found fulfillment in writing, speaking, and advocating over the last year. Thanks to everybody who has spent time with me. I hope that I’ve sparked some conversation. Let’s keep it going.
Follow along with my other writings on my humbly named site, www.trelarosa.com.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.