Part of being outspoken and transparent about your chronic disease is that it immediately grants you a platform. As demonstrated by this project, I'm trying to be opportunistic about this and I'd be lying if I said I wasn't trying to expand that platform to a bigger audience. But, as a scientist, writer, and human, I feel a lot of honor and responsibility by having this platform.
I'm writing this because this Saturday, I'm speaking at the CF Family Education Day at the University of Kentucky clinic and just a couple of weeks ago, I spoke on behalf of Alyssa and myself at the CF Foundation Cincinnati's Finest Event.
I realize that my background as a scientist – and ahem, a person that's dealt with this disease for 24 years and counting – means that people give me the benefit of the doubt that what I'm saying is at least somewhat accurate. I recognize that my opinion and my statements hold real estate in people's mind when I talk about topics that people respect my opinion in. As a writer as well, I understand the immense power that words and rhetoric are capable of. I also believe that when people weaponize words, in whatever form that may be, it's important that they're held accountable. (When I say "weaponize" words, even my posts that are intended to elicit empathy use that technique, I merely mean when words are intended to have an effect, which spoiler: whenever someone's writing, they should always be intended to have an effect, so my point here is people should expect to be held accountable for the words they say or write.)
I consider a platform, even one as small as mine, to be both a great privilege and a tremendous responsibility. I believe strongly that when individuals develop reputations that they need to be honest about their intentions and their motives and I hope to be clear about that whenever I speak on topics related to CF or really anything. I take great pains in researching the topics I discuss and being careful about the words – for example, in my "Some CF Stats" piece, I intentionally cited the pages where I used numbers for populations and stadium capacities; some of the pages cited were Wikipedia which IS a good source for a lot information, by the way, but that's for a different day – I use.
In science, it is of utmost importance to be clear. It is also fundamentally important to be concise. While my inclinations to speak in prose may inhibit my ability to be concise (unintentionally superfluous), I sometimes use more words to explain things with the goal of being clearer. That's partially why I haven't written that many pieces about specific CF stuff – inheritance, mutations, etc – because I know I will feel compelled to try to explain background biochemical and biological topics that will overcomplicate the entire message for probably no good reason. But I also feel like explaining other parts of dealing with CF – having the responsibility of a platform, why the term "sick" can have a bad effect on us, or just being honest about my feelings – can have the same intended message that life with CF is vastly complex.
In a community of such a small amount of people, we must be careful that we do not abuse our platforms. I'm active on social media, so I see many people with CF and affected by CF being active in this month of awareness. Unfortunately, I've seen people abuse the power that comes with others assuming that our experiences provide us with expertise in areas we may not have expertise. If we're not careful, we can inadvertently infect the discourse surrounding life with CF. I absolutely do not consider myself to know everything there is to know about CF, but I do know that my experience in the lab as well as my degree provide me a wide breadth of knowledge in this field. I'll speculate based on my know-how, but I hope I can always make an informed comment with the hedge that it's speculation. This is part of my platform that comes with my science background. (I sincerely hope this doesn't sound self-aggrandizing because it absolutely isn't supposed to be. If you know me, you know I'm very, very hard on myself. I'm only trying to speak to the fact that I try to be careful about what message I'm sending because I want it to be as honest and factual as possible.)
I feel like Alyssa left a great legacy on earth because of her platform, yet I also feel like Lyss never felt like she could feel sick and just feel sick because of her platform. I could be wrong, but I know Alyssa took a lot of pride in her reputation as somebody that always embraced the good and looked forward with a hopeful disposition. That platform, in a paradoxical way, was what gave her a will to fight and also what burdened her in her fight.
Sometimes, I reflect on where I am and notice that I could've never imagined I'd be in my current career path. I always thought CF gave me an inherent passion to pursue in medicine, but now that I feel like my career path has been hugely altered since college graduation, that only I am capable of being in this position due to my unique situation in life. Life with CF has given me something to force me to reflect on life and a ton of interesting experiences. Watching Alyssa go through what she went through provided me with a type of suffering the most people cannot even fathom. I wish both weren't true, but great tragedy can be fodder for great art (bold reminder here from Day 1: DO NOT under any circumstance romanticize your depression as the fodder for great art; it is not the depression or anxiety, but rather the experience itself that can be the good material; again, please seek help if you need it).
So I embrace that platform. I embrace the legacy Alyssa left for the world and the legacy she left for me. I admire the path she carved, but I plan on carving my own. I hope to use my writing to show a human being going through human emotions. It took awhile for me to speak about my depression and anxiety and even longer to write about it, but I received some really nice messages about others having gone through something similar. If I helped a single person, that piece was a success. I write with the goal to inform others of my story. I don't consider myself to be "inspirational" and I don't love that word anyway. I enjoy writing because it's extremely cathartic for me. And I enjoy having a platform because I love the idea of using my experiences to make a difference in the world.
I enjoyed talking at Cincinnati's Finest a few weeks ago. Most of the people that raised thousands of dollars did not know much about CF. I enjoyed being able to personally thank them. Alyssa wanted to speak at that event badly so I enjoyed speaking because I know she would've been proud of me.
I look forward to speaking this weekend (my second time at the UK family education day) to be a testament that people with CF can live fulfilling lives and embrace their experiences to hopefully one day make a change, just like I hope I can do and I know Alyssa did.
Please hold me accountable if it seems I am being disruptive or inaccurate. I look forward to the challenge of having this platform and I hope I can become a successful writer, advocate, and human.