July 10, 2021

Anna died when she was 8,667 days old. As of July 10, 2021, I am older than my older sister. And while I wouldn't say I have survivor's guilt, it isn't fair that I am "older" than her, that I am living longer than she did.

I suppose it shouldn't mean anything that I am 8,668 days old and Anna only got to see 8,667 days. The average US life expectancy based on a quick Google search is right around 78 years, which is close to 28,400 days. Anna, in a sense, got 20,000 days of her life taken away from her. 

And yet, she didn't. Every day for Anna was an infinitude and every tomorrow was a dream. God gave her each day and Anna thanked Him with laughter and joy and sometimes anger and impatience and a whole personality words cannot describe. But Anna took each day as her own, and every day no matter what she put out, she rarely put out the fight she was fighting, and she fought that fight hard. 

I know, because I'm fighting it too. I'm just fighting it longer, and recently my fight has gotten easier. So, maybe in a sense, I do have survivor's guilt. I often think I'm not using my life the way I should be. I know we romanticize people when they die, but looking back I think Anna had a life to be proud of, and she did that in fewer days than I did. 

In a way, this odd celebration of life I am experiencing today feels like a midlife crisis, a crisis that is pushing me to be better, holier, happier, more loving and more care-free. I still look up to my late sister - she is still older than me, and the way I remember her makes her feel much older and wiser. I feel too young, too inexperienced to be 8,668 days old when I compare myself to Anna. I don't feel like I've done enough. 

 And that's the crazy thing. Anna was so young. I know that now. I keep asking myself, "What if I were dead now?" and that question is heavier than a harmless hypothetical. It is a very real possibility, the evidence being Anna herself. If I were dead now, what would my life be? What would my family say about me? What have I gotten to experience, what do I still want to do? I'm lucky enough to ask these questions. Anna did not really get any warnings. I've said in the past that I would be content with dying once I got married. To marry Noelle, the love of my life, was all I wanted to do. And I still think that is true. While I don't want to die, I would be content with it. But the point is, we don't get to decide that. If I died the day before my wedding day, I wouldn't have been able to negotiate with God. 

Today, I feel as though I am just starting my life. I graduated from college last year, I'm almost a year into my career and my marriage, I have a honeymoon planned, I hope to start a family one day, I hope to take road trips with said family and create holiday traditions and get promoted at work and see every major league baseball stadium, there is a possibility that I want to write a book, and I want to do so much more. 

But is that life? It may be living, but what is life? Because Anna had a life and when we reflect on it, we recognize she didn't get to do most of that stuff. I'm sure she had her own list of things to do, and how much did she cross off? And yet, Anna's life was beautiful. 

So while my life feels like it is just beginning, I recognize that it begun 8,668 days ago. And each day on this earth, whether you have a lung disease or not, is a blessing. And it doesn't matter what you get to do or not do, but how you live and think and pray and treat one another, that creates your life. 

So this, my 8,668th day on this planet, is dedicated to my older sister. She was strong, funny, animated, stubborn, messy, courageous and brave. And she lived.

Imposter Syndrome

Imposter syndrome (n): "A psychological condition that is characterized by persistent doubt concerning one's abilities or accomplishments accompanied by the fear of being exposed as a fraud despite evidence of one's ongoing success" (Merriam-Webster). 

Imposter syndrome is a common phenomenon, especially in the world of academia. Many people feel like they don't belong in the group - whether that is academic, athletic, or otherwise - because they don't always know what they're doing, or their success looks different than others, or at least it is perceived to be different. But what does having CF "successfully" look like? What does that mean? Coughing a bunch? Producing mucus when you cough, needing to take breaks while exercising more than your peers? Scheduling your entire life around doing treatments, waking up extra early to do them, or staying in the hospital, being on IV antibiotics, knowing your nurse's work schedule? Because if so... 

After being on Trikafta for 16 months, and having not been in the hospital for over two years(!!), and needing minimal antibiotic treatments (no IV antibiotics in 2 years), I feel... almost like I don't have cystic fibrosis anymore. Now, I say this to illustrate a point only. Obviously I still have CF; I have to go to doctor appointments, I still do two treatments a day, my weight gain still needs support from my feeding tube, and I still have to take medicines like enzymes, insulin, and of course, Trikafta. And it's this last one, Trikafta, that has changed everything about my life, from my energy levels to my lung functions to my mental state. After 22 years of living in a certain way, a way that constricted and forced and deprived and choked me, I feel like I can really breathe. 

Which makes me feel like an imposter in the best way possible. 

In the past two years, my energy levels have been higher than I knew possible (and I've just naturally been a highly energetic person). I'm always itching to go do something (COVID has been tough!. I feel like I'm dancing and singing around the house no matter what I'm doing, I've gone on 10+ mile bike rides, I can play racquetball without needing many breaks, and life has been (has always been, but is perhaps more so) amazing. Before taking Trikafta, I was able to do these things, but to a much lesser extent. I couldn't imagine going on a bike ride for more than maybe 1/2 hour. Racquetball hurt my lungs. I loved laughing but that much force coming from my body often caused me to cough. And when I coughed, always mucus. And usually thick, green mucus (green indicating infections/illnesses). Now? I honestly, really truly, cannot remember the last time I coughed up mucus. Maybe a few months ago? Maybe? I love not remembering that. On the rare occassions when I do produce anything, it's white and thin, more closely resembling spit than phlegm. 

The numerical data backs up my energy levels, as well. My PFTs have increased 30% since starting the medicine. They haven't been that high since 2014!! These numbers are incredible, and they only keep rising. And the changes in my everyday life is proof of how this medicine is making me feel "normal." Before Trikafta, I never missed a single treatment. I did three treatments every single day, without fail. Now I am able to do two treatments a day and sometimes, around once a month, I allow myself to miss a treatment (though I usually still do a quick nebulizer) if I've had a late night or something. That worried me at first, and I was cautious when skipping treatments, but this is exactly what Trikafta was for. To make my life easier. To make my life better. And it gets better each and every day, in all aspects.

A graph of my PFTs (lung function tests) from 2005 (left) to 2021 (right).
See the recent upward trend!

My mental state has changed in the past two years, as well. My life for the last 22 years has been consumed with cystic fibrosis. It was the only thing on my mind, and I made CF my life (or really, CF made itself my life!). I didn't have a choice but to focus on my health, how it would affect my future, my college experience, my married life, my work life, my social life, my activities, everything. In fact, before Trikafta - and before the pandemic - I was really nervous about entering the workforce, but the combination of Trikafta and COVID-19 forcing people to work from home, I've been able to reclaim even the mundane aspects of "normal" living, including the 9-5. I even started saving for retirement. That is something that has surprised me completely; so many times I've had the explicit (and rather freeing) thought of not having to worry about money in the future, because more likely than not that future wouldn't come. It's an incredible feeling being allowed to dream of taking out of my 401k. 

But I am guilty, too. Because CF isn't the only thing on my mind anymore, because it isn't my life, because I don't need to worry about if I'm going into the hospital or how I can squeeze in all my treatments today, or coughing excessively at work, I'm not talking about it as much. My disease isn't as serious anymore. I don't advocate like I used to, I don't blog as much, I don't seek out advice or videos or blogs from fellow CF-ers. I'm not as involved in the community and while it feels nice to be able to take a break from it, I feel bad. Because CF is still a very real disease. It is still serious. Not everyone in the CF population can take Trikafta. There are those who are still hurting, whose lives are still centered around taking that next breath. And it's those who I (and others!) need to advocate and pray for and support. And, more likely than not, I will still die prematurely, even though it may (God willing) be later than 40 like I've imagined my entire life. I can't forget that. I wouldn't say I'm letting my guard down necessarily, but I'm letting myself forget about CF. And that's what's so bittersweet about all this.

I don't want to get my hopes up. I don't want my loved ones to be so encouraged and then have to say goodbye before I retire. While Trikafta is a miracle, and one I am grateful for every time I eat a scoop of peanut butter in the morning, I can't forget why I'm taking it. Because I have cystic fibrosis. I do, and I am not an imposter. I may not be coughing as much, I am able to loosen the rigidity of my treatments, I don't seek out every opportunity to talk about the disease or advocate or post something new, and I am allowed to breathe and live. But the disease is still very real and I cannot forget that.

It has been a cheesy saying since the dawn of time that I still have CF, but I can finally, really truly say now, that CF does not have me.