A quick preface: Since beginning this newsletter or whatever it is less than a month ago, I have gained 34 subscribers bringing the total up to over 165 readers! I’m so thankful for everybody taking the time to read my words. It truly means a lot to me. This newsletter is giving me a chance to have better conversations and write more personal writings which is also very exciting. Please do let me know if you’ve shared my newsletter or any of my pieces with anybody or if you have any commentary you’d like to add. I’m always interested. Sharing my pieces and newsletter with more eyes is one of the best and easiest ways to support my writing. Thanks again, and enjoy the piece!
At the end of every year, I tend to do a lot of reflecting (even more than usual which is already a lot). As I reflect on 2019, something I noticed was that it seemed like people paid more attention to me. That isn’t meant to sound self-important about my current self or self-critical of my younger self, but it seemed like 25 meant that people viewed me as…an adult? It’s hard to put into words how this perception of me suddenly changed, but it seemed like it changed whenever I would tell people I was 25 or whenever I’ve mentioned that I graduated over three years ago.
It’s true that three years in the “real” world (whatever the hell that is, but college definitely isn’t it) and in a career show you quite a lot. Compound that with the many other things that have happened in my life — my sister’s double lung transplants, a devastating break-up, three quick deaths in the family, becoming a published scientist, earning a writing column on a popular CF site, giving speeches at CF events and conferences, my sister’s death, dying my hair blonde, and all the other things — and it’s easy to see how busy and overwhelming my life has been since graduating from college.
Since graduating from college, I’ve consistently felt behind the curve of my peers. I have friends that are well-established in their careers and have an idea of what their future career path looks like; I have friends that are engaged; Some of my friends are purchasing houses. All the while, I have a hard time keeping my house and car clean, putting away my laundry, or even doing my laundry consistently. I’m good at adhering to my treatments and my medications, but doing the dishes? Impossible to do in a timely manner.
If I’ve learned anything about adulthood, though, is that it’s all a façade. Nobody really knows exactly what they are doing. We’re all learning as we go and get older. We’re all trying to find the things we want to do that provide us the most joy. For some people that might be a career and for others it might be marrying and settling down. It’s incredibly difficult to know, in the moment, if our decisions are ever going to be the correct one — if your definition of correct can even be determined. Some may pay off and some may not.
So why do we do what we do? There’s an argument that free will cannot possibly exist. There’s a religious argument for this and there’s also a metaphysical argument. The religious argument says that God (or Allah or whomever) created the universe and when he did, if He is truly all-knowing and all-powerful, that He knew how the universe would end — and all the subsequent moments in between. So He would then know if you were going to sin in the moments before you sinned.
The metaphysical argument follows the same logic. Time will only exist from the beginning until the end of the universe, therefore the timeline of the universe is ongoing, but it will have an end. In that way, all events are going to happen in whatever way until the universe finally ends. So do we have the ability to actually decide our next decision? A bonus to the metaphysical argument is that our brains make a decision subconsciously before we even realize it; sometimes up to ten seconds before we know it. Can we ever truly have free will if the universe is simply an amalgamation of all existing particles interacting with others and our brains are comprised of those particles, even making decisions before we actually realize it?
The fun part of thinking about this in such a way is that it means nothing. Whether or not we have free will doesn’t really change the fact that we all wake up today and go make coffee and sit in traffic. We wanted to do those activities — or at least we had to in some cases — so we did them. Whether or not it was truly free will or predetermined from the beginning of the universe by the path the particles were set on or by God himself (or herself! or theirself! we’re welcoming of all genders here, for people and gods) doesn’t change much. (And don’t be trite and justify your bad behavior by claiming it wasn’t free will. That’s boring, lazy, and irresponsible).
I enjoy these topics, though. They make life fun because they force us to reconcile with how we spend our time. There’s that fun quote The days are long but the years are short that I think puts things into perspective well. We can be entirely too bored at our jobs, but time moves by us as we remain bored until we find ourselves too tired, lazy, or complacent to make a change. There will absolutely be times where it’s hard to make a change quickly, but we need to make sure we’re contemplating our time spent and how much we’re genuinely enjoying it.
I’ve felt quite lost since graduating from college. While I’m incredibly fortunate to be a scientist working to improve the lives of people with CF, it’s felt uncertain at times due to my own neuroticism. I went from a life of feeling what I knew what I wanted to do for the next two decades that was structured in nice li’l semesters and a designated path (college, med school, residency, fellowship…) to a future with nothing but a college degree and way too many interests.
While feeling lost a lot of that time, I’ve developed dozens of relationships with people in every facet of the CF world. I’ve also gotten involved in the broader disability rights movement. Advocacy, team- and coalition- building, public speaking, writing, policy, science, and developing relationships are all a part of my life now as a scientist and advocate. It’s been an incredibly rewarding feeling to capitalize on my own experience as somebody with CF to tell my story. But what’s been more rewarding is that I feel like I’m connecting with other people on a higher plane than ever before. Advocating for myself and for others and helping to amplify others’ voices while also pushing society in a better direction of the future has been truly fulfilling.
For the first time in my life, I feel like I’m…starting to see my dreams come true. It feels surreal to type that. My writing has improved and I don’t feel writer’s block like I used to; My public speaking feels more natural; My interactions with colleagues and others in the community feel more natural and less forced; Life is just moving in a direction I couldn’t have imagined some time ago.
And I’m coming up on a month of Trikafta. The newsletter after this one will be on my assessment of the first month, but I will say, my health feels more stable than ever. For so long, I was so confused about my future, waking up daily feeling deflated and sad and worried. But now I’m not waking up like that.
I no longer feel like I have to compare myself to my peers; not because I’m in a place where I feel totally comfortable, but because I recognize that the number one thing we can do for ourselves is seek out the activities, hobbies, and opportunities that bring us the most joy. After such a long time feeling like I was lost in my career and that feeling multiplied by the death of my sister, I have a hard time putting into words the gratitude I feel for the things happening in my life at the time. I’m writing this because I know how so many of my peers feel lost and like life can be incomprehensibly difficult and dull. It takes time for us to figure out why we do what we do.
I don’t know the answer to why we do what we do. Do certain things that happen to us in our childhood influence who we become in our adulthood? There’s probably truth to that. But what is it that makes some of us want to become artists and others engineers? I believe, in my heart, that we can all become who we want to become. Some of us need more help, some of us are born in better situations. We can’t neglect the reality that life is easier for others based solely on what we’re born into or with, but we must also ensure we’re aware of how we can improve our lives. Like all things, there is a need for personal responsibility.
Sometimes, there are boring times, and times can get incredibly difficult. But there are people out there that want to help and want to be a part of your life. Seek out those people. I have found that experiences deepen enjoyment in life, and relationships enhance those experiences further.
It’s impossible to know exactly why we do what we do. But life is absolutely what we make of it, and it is made interesting by us seeking out what we find interesting. What do you find interesting?
What bonded me and my sister was our shared experience of living with CF and capitalizing on how we could make a difference through our lives with CF. Just last week I was awarded the CF Star award. The event fell about two years after she was awarded it. The day she was awarded it was about six weeks before her death, and it was the last good picture we took on what was one of the last “good” days of her life. I’m thankful for the time I had with her. I miss her every single day.
My future is predicated on my love for advocacy and people. That’s why I write. The piece I wrote for my CF News Today column is a good summary of what I’m trying to do in the near future (I’d appreciate it if you read that!). This newsletter is making that even more enjoyable as I’ve gotten to know people through it and my writing is improving. What do you find interesting? What makes life interesting for you? I’d like to hear from you. Maybe I’ll share some responses (with your approval) in the next newsletter. I’m not sure what this newsletter will become, but I love it so far, and isn’t that what makes life it enjoyable?
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